I know it's been a lot of days since my last entry, but with Christmas coming and going--and all the busyness involved with the holiday--taking the time to write on here has slipped away rather speedily. So, let's get started...
I got over the disappointment I had over the lack of progress [towards dialysis] within a day or two. I just had to process the information, and get myself a little busier to get it off my mind. So, it's all good now.
My Christmas was awesome! I enjoyed getting prepared, prepping and eating food and playing with my grandkids. Unlike Thanksgiving, I didn't feel lousy when I ate and actually enjoyed the culinary delights!
Things health-wise have been not so good. To begin with, I've had to take promethazine nearly every day since my last blog; sometimes more than one partial dose in a day. Plus, most times I eat I've gotten nauseated after just a few bites and need to stop. I've actually pushed myself to eat just to get food in my body, then wait for the nausea to pass.
My sleep has been poor, at best. A lot of my dreams have revolved around my losing control and being at the whim of others. Additionally, the sleep itself has been extremely restless; both things that leave me utterly exhausted mentally and physically. I spend many days in a bit of a fog, and fall asleep within seconds. In fact, I had started this blog earlier today, got sleepy really fast, then slept for 3.5 hours.
As of today I have had at least one episode of diarrhea for thirteen straight days. I don't know why because, aside from Christmas day, my diet and total intake has not changed from what I've been doing these many months. One or two doses of Imodium have taken care of the issue.
My fluid intake has remained consistent--not much variation either way. Edema has been only a minor problem; and has been slightly moderate every day. No big edemic increases, no big urinary drains...just nice and steady. Speaking of urine, this too has been consistent in flow, volume and characteristics.
Because of the sleep issues my energy level has been awful. I get a few minutes work done then have to sit down. Then, I get less work done and sit for longer, etc, until I can't physically do any more. The lack of overally work I get completed is less than normal.
The bilateral flank pain has been up and down in intensity. No consistency on this one way or the other.
The headache has been terrible nearly every day. On average, it has been hitting a solid 9.5, and is only just under control. Many days I have taken a T3 only to have to take another just to break through the pain. I have used the TMD devices just to address the possibility of TMD involvement. However, nothing eliminates the headache; and the meds only barely reduce the pain level.
I've been having what has seemed to be increased vertigo and general dizziness. For instance, I was watching TV yesterday, glanced away, and found the room spinning and wobbling. Eyes open or shut, the vertigo wouldn't go away for about five minutes. Plus, I've lost my balance numerous times when out and about with Christmas shopping. Luckily, my cane kept me vertical. This increase of vertigo and dizziness has been going on both inside the house and outside.
That's all I can think of. I know I'm missing a few things I wanted to mention...I just can't remember right now.
With the New Year holiday later this week I may again have a lag in my next entry. So anticipating that, I hope that you, my readers, have a fun, safe and memorable New Years celebration. May 2012 be a year that finds each of you healthy, happy and content.
HAPPY NEW YEAR!
ScottW
Tuesday, December 27, 2011
Friday, December 16, 2011
16 December 2011
The results of my labs are in, and they tell us that over the last six weeks, I am virtually unchanged. (yipee...)
My kidney function went up .60%, and all of my lab results are just about identical to my previous numbers. Even my weight was the same at 239 pounds.
All of which makes this post extremely easy.
I must admit that I am disappointed that nothing changed. The only hopeful thing I see in these numbers is the pattern of steady, steady, steady, rise, and then drop in my GFR.
If that pattern holds up, then in february I should show a drop of 1.5-2.5%. We'll see.
That's the news for now.
Good health to All!
ScottW
My kidney function went up .60%, and all of my lab results are just about identical to my previous numbers. Even my weight was the same at 239 pounds.
All of which makes this post extremely easy.
I must admit that I am disappointed that nothing changed. The only hopeful thing I see in these numbers is the pattern of steady, steady, steady, rise, and then drop in my GFR.
If that pattern holds up, then in february I should show a drop of 1.5-2.5%. We'll see.
That's the news for now.
Good health to All!
ScottW
Monday, December 12, 2011
12 December 2011
A tough weekend.
While my Upper Respiritory Infection (URI) continues to improve, the S/S's (Signs and Symptoms) of the PCKD have been kicking my butt.
My headache has been terrible, continuing to average a nasty 9.5. I've been using my TMD Occlusive devices just to be sure no TMD comp[lications carry over from day to day. However, the intense, painful headache remains.
Nausea has been a bigger issue the last few days as well. I've had to take regular doses of the anti-emetic Promethazine since Friday evening. Luckily, the med has kept the nausea under control.
Flank pain has been an issue this weekend. Nothing terrible, mind you; but it has definitely increased with a higher level of constant pain, and increases in incidences of the sudden, sharp pains on the R side. I've had to do a lot of adjusting my sitting and laying positions in order to reduce the pain.
My overall ill feeling has been bad, too. I've sat around a lot the past couple of days just feeling so yucky. No fun. And I still haven't found anything that alleviates that feeling.
The amount of food I eat has taken a hit this weekend as well. I ate OK on Saturday evening, but my Friday and Sunday intakes were really bad at about .75/cup each day. Everytime I do eat I either get nauseated, of have a wave of just not feeling well wash over me, forcing me to stop eating.
On the positive side of things my sleep has been of fairly good quality--at least my nighttime sleep. Naps are still coming on unpredictably and vary in quality, but my nightly sleep has improved.
Also, urinary output remains consistent, as does its color and characteristics. Foaminess is still high, too.
Finally, I'm doing a blood draw today for this Wednesday's nephrology appointment.
Good Health to All!
ScottW
**1030p--My labs drawn tonight were for CBC, Renal panel, Parathyroid and Testosterone. Plus, I had a UA (Urinalysis) as well. I will include the results when I write about Wednesday's appointment.
While my Upper Respiritory Infection (URI) continues to improve, the S/S's (Signs and Symptoms) of the PCKD have been kicking my butt.
My headache has been terrible, continuing to average a nasty 9.5. I've been using my TMD Occlusive devices just to be sure no TMD comp[lications carry over from day to day. However, the intense, painful headache remains.
Nausea has been a bigger issue the last few days as well. I've had to take regular doses of the anti-emetic Promethazine since Friday evening. Luckily, the med has kept the nausea under control.
Flank pain has been an issue this weekend. Nothing terrible, mind you; but it has definitely increased with a higher level of constant pain, and increases in incidences of the sudden, sharp pains on the R side. I've had to do a lot of adjusting my sitting and laying positions in order to reduce the pain.
My overall ill feeling has been bad, too. I've sat around a lot the past couple of days just feeling so yucky. No fun. And I still haven't found anything that alleviates that feeling.
The amount of food I eat has taken a hit this weekend as well. I ate OK on Saturday evening, but my Friday and Sunday intakes were really bad at about .75/cup each day. Everytime I do eat I either get nauseated, of have a wave of just not feeling well wash over me, forcing me to stop eating.
On the positive side of things my sleep has been of fairly good quality--at least my nighttime sleep. Naps are still coming on unpredictably and vary in quality, but my nightly sleep has improved.
Also, urinary output remains consistent, as does its color and characteristics. Foaminess is still high, too.
Finally, I'm doing a blood draw today for this Wednesday's nephrology appointment.
Good Health to All!
ScottW
**1030p--My labs drawn tonight were for CBC, Renal panel, Parathyroid and Testosterone. Plus, I had a UA (Urinalysis) as well. I will include the results when I write about Wednesday's appointment.
Friday, December 9, 2011
09 December 2011
What a week!...and I don't mean that in a good way.
Last weekend was OK, but I started getting a scratchy throat on Sunday. By Monday morning I had an upper respiritory infection. The only good news in this is that the URI never fully exploded into what it certainly could have. (Thank goodness for that!) However, the URI was no picnic. Lots of coughing, sinus swelling and phlegm development. The sinus pressure made my already severe headache just horrid. The headache pain literally averaged a 10.5+ all week.
Additionally, the ill feeling has been far worse than normal. Combined with the URI, I have felt mind-bogglingly awful since Monday. Promethazine didn't help at all, and T3's only reduced the headache down to a 10--and that was with two T3's in me!
Because of how i was feeling, I was taking more naps than normal. On average, I took naps each day totaling at least five hours per day. The most naps I took in a day was just yesterday. I'd slept poorly on Wednesday night, awaking at 415a Thursday morning. I was awake for just three hours then slept for two; then awake for 1.5 and slept for three; then awake for two hours and slept for another 2.5; awake for about five hours, then slept of and on for another three, and finally falling asleep for the night at 3a, and slept until ten this morning. The good news is that i awoke feeling a bit better than I have all week...I think the URI is on the mend!
About the only good news this week is that I didn't have to deal with severe edema on top of everything else. Don't ask me why the edema was down this week; I'm just grateful it was because it likely kept me from having a worse week than was already occurring.
Anyhow, that's all for today. A terrible week is gone, and one I don't wish to repeat anytime soon.
Good Health to All!
ScottW
Last weekend was OK, but I started getting a scratchy throat on Sunday. By Monday morning I had an upper respiritory infection. The only good news in this is that the URI never fully exploded into what it certainly could have. (Thank goodness for that!) However, the URI was no picnic. Lots of coughing, sinus swelling and phlegm development. The sinus pressure made my already severe headache just horrid. The headache pain literally averaged a 10.5+ all week.
Additionally, the ill feeling has been far worse than normal. Combined with the URI, I have felt mind-bogglingly awful since Monday. Promethazine didn't help at all, and T3's only reduced the headache down to a 10--and that was with two T3's in me!
Because of how i was feeling, I was taking more naps than normal. On average, I took naps each day totaling at least five hours per day. The most naps I took in a day was just yesterday. I'd slept poorly on Wednesday night, awaking at 415a Thursday morning. I was awake for just three hours then slept for two; then awake for 1.5 and slept for three; then awake for two hours and slept for another 2.5; awake for about five hours, then slept of and on for another three, and finally falling asleep for the night at 3a, and slept until ten this morning. The good news is that i awoke feeling a bit better than I have all week...I think the URI is on the mend!
About the only good news this week is that I didn't have to deal with severe edema on top of everything else. Don't ask me why the edema was down this week; I'm just grateful it was because it likely kept me from having a worse week than was already occurring.
Anyhow, that's all for today. A terrible week is gone, and one I don't wish to repeat anytime soon.
Good Health to All!
ScottW
Saturday, December 3, 2011
03 December 2011
I don't know about anyone else, but time is flying by and before I know it, too many days have passed and therefore, too much catching up has to be done. On that note, let's get started...
That ill feeling inside has become pretty bad. It's bringing down my ability to stay strong all the time. When it's really bad, I just lay down and feel fairly miserable. Nothing helps it. I just have to get through it.
The edema has continued to go through its now normal cycle of swelling in the afternoon and evening, and then reducing (via kidney filtration) by morning, then start all over again. At least I know my kidneys are still working a little bit.
The twenty four plus month-long headache continues to be an issue. Since my last entry, I have had zero TMD complications, yet my headache has been averaging a solid 8.5. Still no explanation for the existence of the headache aside from the prevalence of headaches amongst end-stage PKD patients that is of unknown etiology (unknown cause or origin).
The flank pain over my kidneys has been consistent in its nature. No sustained flare-ups, mostly it's just a constant pain. I've had instances of what I refer to as 'positional flare-ups' wherein I am sitting or laying in whatever position and the flank pain increases either slowly or suddenly. Only by changing position is the increased pain alleviated. These flare-ups happen four or five times per day, on average.
My appetite remains terrible. Besides having the nausea, the ill feeling also eliminates my desire to eat. Just yesterday I was feeling particularly bad [with that feeling] and didn't have anything to eat until 830p. Even then I only ate because I needed to. Speaking of nausea, that aspect has been reduced this week. That ill feeling however, has been constant and intense all week.
I've been struggling this week with my positivity. Lots of feeling bad has left my with having a tough time. Once I realized this, I was able to get my head back in place and look at things with a more positive outlook. Right now, I'm doing really well.
That's all I can think of today. I'll keep plugging away, and doing my best every day.
Good Health to All!
ScottW
That ill feeling inside has become pretty bad. It's bringing down my ability to stay strong all the time. When it's really bad, I just lay down and feel fairly miserable. Nothing helps it. I just have to get through it.
The edema has continued to go through its now normal cycle of swelling in the afternoon and evening, and then reducing (via kidney filtration) by morning, then start all over again. At least I know my kidneys are still working a little bit.
The twenty four plus month-long headache continues to be an issue. Since my last entry, I have had zero TMD complications, yet my headache has been averaging a solid 8.5. Still no explanation for the existence of the headache aside from the prevalence of headaches amongst end-stage PKD patients that is of unknown etiology (unknown cause or origin).
The flank pain over my kidneys has been consistent in its nature. No sustained flare-ups, mostly it's just a constant pain. I've had instances of what I refer to as 'positional flare-ups' wherein I am sitting or laying in whatever position and the flank pain increases either slowly or suddenly. Only by changing position is the increased pain alleviated. These flare-ups happen four or five times per day, on average.
My appetite remains terrible. Besides having the nausea, the ill feeling also eliminates my desire to eat. Just yesterday I was feeling particularly bad [with that feeling] and didn't have anything to eat until 830p. Even then I only ate because I needed to. Speaking of nausea, that aspect has been reduced this week. That ill feeling however, has been constant and intense all week.
I've been struggling this week with my positivity. Lots of feeling bad has left my with having a tough time. Once I realized this, I was able to get my head back in place and look at things with a more positive outlook. Right now, I'm doing really well.
That's all I can think of today. I'll keep plugging away, and doing my best every day.
Good Health to All!
ScottW
Monday, November 28, 2011
28 November 2011
Ok...the holiday is over, and I have got lots of catching up to try to get done...
Lets start with edema. To put it plainly, lots and lots. I've been swelling (mostly in my legs) daily for the last week. No reason for it; the swelling just happens. Plus, I have not felt the swelling increasing; which is different for me. Because of the edema, I've got lots of new bruising around both ankles. Ugly.
I've also had a lot of lower leg cramps happening just about every day. The L leg seems to be having more (or more intense) cramping than the R. I've been woken from my sleep three times over the last ten days.
The pain over my kidneys has increased again. The R still seems tio be worse, though both sides are now affected all of the time. The pain isn't too bad yet, but i will keep an eye on any increases in pain levels.
My headache has been ranging from 7-9. Still no break in the now two plus year long headache. TMD has not been an issue, and I am ever aware of TMD complications every time they arise to intensify the headache.
My appetite has been bad. Nausea has been steady and definitely influences how much I eat. On Thanksgiving day I had taken only a few delicious bites before I was overcome with nausea...so much for the holiday dinner. I am averaging about 1.75 cups of food per day. On trhe occasion i do eat more than that, I end up feeling nauseated from feeling like my food just isn't sitting well.
My sleep continues to be all over the place. In between to variety of nightly sleeping lengths and naps, I continue to feel exhausted. I must admit that i've had a few days of feeling somewhat energetic, so I do more work around the house; only to over-do
things and feel exhausted once again.
Overall, I've been doing only OK. I have had a few days that were better than most, and lots of feeling lousy; leaving with just doing OK.
Anyway, my headache is killing me--yes, I have already taken a T3--so i am not thinking well at all. So, I'll be on my way. I know I've slipped on the frequency of my entries, and I will try to be better.
Good Heath to All!
ScottW
Lets start with edema. To put it plainly, lots and lots. I've been swelling (mostly in my legs) daily for the last week. No reason for it; the swelling just happens. Plus, I have not felt the swelling increasing; which is different for me. Because of the edema, I've got lots of new bruising around both ankles. Ugly.
I've also had a lot of lower leg cramps happening just about every day. The L leg seems to be having more (or more intense) cramping than the R. I've been woken from my sleep three times over the last ten days.
The pain over my kidneys has increased again. The R still seems tio be worse, though both sides are now affected all of the time. The pain isn't too bad yet, but i will keep an eye on any increases in pain levels.
My headache has been ranging from 7-9. Still no break in the now two plus year long headache. TMD has not been an issue, and I am ever aware of TMD complications every time they arise to intensify the headache.
My appetite has been bad. Nausea has been steady and definitely influences how much I eat. On Thanksgiving day I had taken only a few delicious bites before I was overcome with nausea...so much for the holiday dinner. I am averaging about 1.75 cups of food per day. On trhe occasion i do eat more than that, I end up feeling nauseated from feeling like my food just isn't sitting well.
My sleep continues to be all over the place. In between to variety of nightly sleeping lengths and naps, I continue to feel exhausted. I must admit that i've had a few days of feeling somewhat energetic, so I do more work around the house; only to over-do
things and feel exhausted once again.
Overall, I've been doing only OK. I have had a few days that were better than most, and lots of feeling lousy; leaving with just doing OK.
Anyway, my headache is killing me--yes, I have already taken a T3--so i am not thinking well at all. So, I'll be on my way. I know I've slipped on the frequency of my entries, and I will try to be better.
Good Heath to All!
ScottW
Wednesday, November 16, 2011
Newsletter: Medication Coverage
I have a few more newsletters from The Transplant Experience, a service of Astellas Pharmaceuticals to seeks to educate transplant eligible patients about the many varied aspects involved with planning for, going through, and life after an organ transplant. This newsletter edition deals with meds...
The medication costs associated with transplantation can add up quickly, but financial barriers should not prevent you from receiving the medications intended for you by your doctor. Fortunately, there are a number of financial assistance options available.
Co-Pay Cards Provide Instant Savings
Co-pay cards provide a way to balance medication access with cost savings. Sometimes referred to as "point-of-sale" cards, co-pay cards can be presented at your retail, specialty, or mail-order pharmacy to reduce your out-of-pocket medication costs.
The Medication Co-Pay: Understanding Your Out-of-Pocket Costs
Most prescription drug plans have a formulary, a list of medications covered by that plan. Drugs on the formulary will be assigned to different levels of coverage, called tiers, which will in turn determine your co-pay amount:
Tier 1—lowest co-pay. Includes generic prescription drugs.
Tier 2—medium co-pay. Includes many brand name drugs, called preferred brands.
Tier 3—highest co-pay. Includes non-preferred generic and brand name drugs, which generally have lower-cost treatment options in tiers 1 and 2.
Tier 4—co-insurance. Includes specialty drugs, paid for as a percentage of the total drug cost.
(To learn more health insurance basics, be sure to download the "Understand Your Coverage" brochure under the Support section of http://www.transplantexperience.com/.)
There are many different kinds of co-pay cards available.3 In exploring your options, you may find that there's a tradeoff between the savings offered and the number of medications covered by the card. Non-profit organizations, like RxAssist, offer co-pay cards for a wide range of drugs, but often at low, fixed rates of savings.4 These are often redeemable in place of your private prescription coverage benefit, but can help offset high co-pays/deductibles, cover medications off-formulary, or assist you if you've already reached your plan's coverage maximum.5 Co-pay cards available through pharmaceutical companies, however, tend to offer higher savings rates specifically on their own brand name medications—sometimes on top of your prescription drug benefit.
Prescription Assistance Programs
You may also wish to consider prescription assistance programs (PAPs), which offer coverage or co-payment assistance to eligible individuals.7 Although PAPs are primarily known for subsidizing medication costs for uninsured or government-insured individuals, PAPs can also accommodate a wide range of privately insured individuals. Some PAPs, like HealthWell, will work with your private prescription insurance to supplement coverage for certain medical conditions.8 Others, like the Astellas Access Program, will cover the costs of Prograf and other Astellas medications for those financially eligible, regardless of the type of health insurance you have.
Since PAPs are numerous and wide-ranging, resources such as Partnership for Prescription Assistance, NeedyMeds, and RxAssist organize various PAPs by drug, medical condition, and region to help you build a list of programs that may be right for you. With eligibility requirements and medications covered by these PAPs constantly changing, you can always refer back to these sites periodically to reassess your options.
Be sure to discuss your findings with your transplant team—and, together, you can build a manageable financial plan for accessing the medications critical to your transplant health.
If you would like to learn more about Astellas Pharmaceuticals and the Transplant Experience, I encourage you to visit www.TransplantExperience.com to learn more. They provide a wealth of information for anyone looking at a life living with organ transplantation.
The Medication Coverage You Need
The medication costs associated with transplantation can add up quickly, but financial barriers should not prevent you from receiving the medications intended for you by your doctor. Fortunately, there are a number of financial assistance options available.
Co-Pay Cards Provide Instant Savings
Co-pay cards provide a way to balance medication access with cost savings. Sometimes referred to as "point-of-sale" cards, co-pay cards can be presented at your retail, specialty, or mail-order pharmacy to reduce your out-of-pocket medication costs.
The Medication Co-Pay: Understanding Your Out-of-Pocket Costs
Most prescription drug plans have a formulary, a list of medications covered by that plan. Drugs on the formulary will be assigned to different levels of coverage, called tiers, which will in turn determine your co-pay amount:
Tier 1—lowest co-pay. Includes generic prescription drugs.
Tier 2—medium co-pay. Includes many brand name drugs, called preferred brands.
Tier 3—highest co-pay. Includes non-preferred generic and brand name drugs, which generally have lower-cost treatment options in tiers 1 and 2.
Tier 4—co-insurance. Includes specialty drugs, paid for as a percentage of the total drug cost.
(To learn more health insurance basics, be sure to download the "Understand Your Coverage" brochure under the Support section of http://www.transplantexperience.com/.)
There are many different kinds of co-pay cards available.3 In exploring your options, you may find that there's a tradeoff between the savings offered and the number of medications covered by the card. Non-profit organizations, like RxAssist, offer co-pay cards for a wide range of drugs, but often at low, fixed rates of savings.4 These are often redeemable in place of your private prescription coverage benefit, but can help offset high co-pays/deductibles, cover medications off-formulary, or assist you if you've already reached your plan's coverage maximum.5 Co-pay cards available through pharmaceutical companies, however, tend to offer higher savings rates specifically on their own brand name medications—sometimes on top of your prescription drug benefit.
Prescription Assistance Programs
You may also wish to consider prescription assistance programs (PAPs), which offer coverage or co-payment assistance to eligible individuals.7 Although PAPs are primarily known for subsidizing medication costs for uninsured or government-insured individuals, PAPs can also accommodate a wide range of privately insured individuals. Some PAPs, like HealthWell, will work with your private prescription insurance to supplement coverage for certain medical conditions.8 Others, like the Astellas Access Program, will cover the costs of Prograf and other Astellas medications for those financially eligible, regardless of the type of health insurance you have.
Since PAPs are numerous and wide-ranging, resources such as Partnership for Prescription Assistance, NeedyMeds, and RxAssist organize various PAPs by drug, medical condition, and region to help you build a list of programs that may be right for you. With eligibility requirements and medications covered by these PAPs constantly changing, you can always refer back to these sites periodically to reassess your options.
Be sure to discuss your findings with your transplant team—and, together, you can build a manageable financial plan for accessing the medications critical to your transplant health.
If you would like to learn more about Astellas Pharmaceuticals and the Transplant Experience, I encourage you to visit www.TransplantExperience.com to learn more. They provide a wealth of information for anyone looking at a life living with organ transplantation.
Tuesday, November 15, 2011
15 November 2011
I just looked at my blog and saw it has been eight days since my last entry. So, lets get going...
Since I don't remember many specifics, I'll have to go with generalities.
To start, overall things have been OK. Less nausea, lower headaches, less pain over the kidneys,and fewer days of just feeling awful. My appetite has also been up, taking in around 2 cups of food per day.
I don't know why the change--maybe one of those little breaks that help me to rejuvenate in advance of the next period of feeling really bad. No matter...I'm just glad that things have been a bit easier.
My sleep has been all over the place. I might get between 5-9 hours at night, then nap (or not) during the day, and then asleep again by midnight. Other nights I'm up almost all night, then only get about four hours of sleep before waking. On those days I get little sleep I try to stay awake, but rarely am able to do so; succumbing to a four or five hour nap in the early afternoon. Like I said, my sleep is all over the place. During all of this, whether sleeping well or not, any time I am awake I continue to drag as if I have zero energy. Some days I feel as if I am walking around in a stupor.
As I stated above, my headache has, overall, been reduced. That's not to say there aren't instances of nasty flareups. Last night for example, I was awoken by my head pounding. I don't recall it having TMD complications, but I went ahead and put in my TMD occlusive devices anyway; then took a T3 to manage the pain. When I woke up today the headache was reduced.
That's about all for today. Not much info to cover eight days; but that's my brain these days. Looking forward to a good week ahead.
Good Health to All!
ScottW
Since I don't remember many specifics, I'll have to go with generalities.
To start, overall things have been OK. Less nausea, lower headaches, less pain over the kidneys,and fewer days of just feeling awful. My appetite has also been up, taking in around 2 cups of food per day.
I don't know why the change--maybe one of those little breaks that help me to rejuvenate in advance of the next period of feeling really bad. No matter...I'm just glad that things have been a bit easier.
My sleep has been all over the place. I might get between 5-9 hours at night, then nap (or not) during the day, and then asleep again by midnight. Other nights I'm up almost all night, then only get about four hours of sleep before waking. On those days I get little sleep I try to stay awake, but rarely am able to do so; succumbing to a four or five hour nap in the early afternoon. Like I said, my sleep is all over the place. During all of this, whether sleeping well or not, any time I am awake I continue to drag as if I have zero energy. Some days I feel as if I am walking around in a stupor.
As I stated above, my headache has, overall, been reduced. That's not to say there aren't instances of nasty flareups. Last night for example, I was awoken by my head pounding. I don't recall it having TMD complications, but I went ahead and put in my TMD occlusive devices anyway; then took a T3 to manage the pain. When I woke up today the headache was reduced.
That's about all for today. Not much info to cover eight days; but that's my brain these days. Looking forward to a good week ahead.
Good Health to All!
ScottW
Thursday, November 10, 2011
Financial Planning for Your Upcoming Transplant
The following information was sent to me by Astellas Pharmaceuticals via their newsletter "The Transplant Experience." Astellas sends this info out to transplant eligible patients as a way to help prepare individuals for the journey ahead.
Planning Financially For Your Transplant
Understanding all you need to do in preparation for a transplant can be intimidating. And budgeting your finances ahead of time is a must. Fortunately, there are many resources to help you along the way.
Understand your transplant costs
Even preparing for your transplant procedure may incur significant costs. It is important to consider all potential expenses, both medical and non-medical.
*Medical costs
-Pre-transplant evaluation and lab tests
-Transplant surgery
-Post-transplant recovery and follow-up care
*Non-medical costs
-Travel, food, and lodging for visits to the transplant center
-Accommodations for a person to accompany you
-Lost wages and income while in recovery
-Child care
Fortunately, many of these expenses are foreseeable. In addition to your financial transplant coordinator, you can look to a number of financial support resources to help you outline your transplant budget.
Meet with your transplant financial coordinator
With a general understanding of what to expect, you are ready to meet with your transplant financial coordinator. This is an opportunity to have your concerns addressed and build a financial plan around your particular financial situation. Be prepared to share your insurance provider information, relevant financial documentation, and, most importantly, any questions you may have. Here are a few to get you started:
*What financial coverage does the hospital accept (Medicare, Medicaid, private insurance, etc.)?
*Will my insurance require pre approval for any of my treatment?
*What is the average cost for a transplant, including care required before and after the transplant?
*Are there deductible and co-payment amounts? If yes, what are they?
*What can I do if my financial coverage runs out?
*Who will pay for my donor costs? What if I have a living donor?
(Find more questions in the Finances pages of the Support section on http://www.transplantexperience.com/!)
Plan beyond transplant
*With all the immediate concerns and events leading up to transplant, it's easy to put off one of the largest financial considerations post-transplant: your anti-rejection medications.
*Just how important are my anti-rejection medications?
**Your anti-rejection medications, as the name suggests, are critical to preventing rejection of your organ for as long as you are living with a transplant. They are tailored to your body's specific needs, so it's important that you take them exactly as intended for you by your doctor.
The day you receive your transplant should be many things—happy, humbling, heartfelt—not one filled with concern over how you will pay for your immunosuppressants. Fortunately, many pharmaceutical companies offer co-pay cards designed to reduce your medication out-of-pocket costs. Astellas Pharmaceuticals can help! Visit http://www.transplantexperience.com/ for more information.
Planning Financially For Your Transplant
Understanding all you need to do in preparation for a transplant can be intimidating. And budgeting your finances ahead of time is a must. Fortunately, there are many resources to help you along the way.
Understand your transplant costs
Even preparing for your transplant procedure may incur significant costs. It is important to consider all potential expenses, both medical and non-medical.
*Medical costs
-Pre-transplant evaluation and lab tests
-Transplant surgery
-Post-transplant recovery and follow-up care
*Non-medical costs
-Travel, food, and lodging for visits to the transplant center
-Accommodations for a person to accompany you
-Lost wages and income while in recovery
-Child care
Fortunately, many of these expenses are foreseeable. In addition to your financial transplant coordinator, you can look to a number of financial support resources to help you outline your transplant budget.
Meet with your transplant financial coordinator
With a general understanding of what to expect, you are ready to meet with your transplant financial coordinator. This is an opportunity to have your concerns addressed and build a financial plan around your particular financial situation. Be prepared to share your insurance provider information, relevant financial documentation, and, most importantly, any questions you may have. Here are a few to get you started:
*What financial coverage does the hospital accept (Medicare, Medicaid, private insurance, etc.)?
*Will my insurance require pre approval for any of my treatment?
*What is the average cost for a transplant, including care required before and after the transplant?
*Are there deductible and co-payment amounts? If yes, what are they?
*What can I do if my financial coverage runs out?
*Who will pay for my donor costs? What if I have a living donor?
(Find more questions in the Finances pages of the Support section on http://www.transplantexperience.com/!)
Plan beyond transplant
*With all the immediate concerns and events leading up to transplant, it's easy to put off one of the largest financial considerations post-transplant: your anti-rejection medications.
*Just how important are my anti-rejection medications?
**Your anti-rejection medications, as the name suggests, are critical to preventing rejection of your organ for as long as you are living with a transplant. They are tailored to your body's specific needs, so it's important that you take them exactly as intended for you by your doctor.
The day you receive your transplant should be many things—happy, humbling, heartfelt—not one filled with concern over how you will pay for your immunosuppressants. Fortunately, many pharmaceutical companies offer co-pay cards designed to reduce your medication out-of-pocket costs. Astellas Pharmaceuticals can help! Visit http://www.transplantexperience.com/ for more information.
Monday, November 7, 2011
07 November 2011
Thursday finished up pretty much the same way it started..in other words, I felt lousy all day without any letup. I ended up taking a half dose of the anti-emetic in the evening. It reduced the nausea to a tolerable level, and I was able to get a little food down.
Unfortunately I was awoken again on Friday morning at 530a, so I took another full dose of Promethazine. Luckily I got back to sleep rather quickly (around 15 minutes!) and slept until nearly 1p.
Of course, on awaking I was groggy and stayed that way well into the evening. Plus, I had that ill feeling hitting all day. I ate a little by days end, and drank around 40 oz's. My headache was as prevalent as ever. My nap on Friday afternoon lasted a little over three hours. About the only good news was that the edema was nearly non-existent all day.
As a result of my late sleep on Friday, I was unable to get to sleep until after 3a on Saturday. I had nausea once again hit me in my sleep; but this time I was able to keep it under control without using meds. After waking I actually had a fairly good day, to start. The headache was minimal, the nausea reduced, edema was again low, and the nasty feeling inside was pretty quiet. Plus, I actually ate more than my usual pittance--I know...a miracle! My nap on Saturday started at 2p and I slept until 6p.
But alas, the good day was not to last. After waking at 6p everything (except the edema) came raging back. What had been a good day turned nasty. (I loved the break!) The remainder of my evening was spent dealing with lots of nausea, a headache was a solid 9, and lots of feeling sick.
I actually slept most of Saturday night through. On waking Sunday, I once again felt pretty good. The edema was still minimal. I had worn my TMD mouth guards to eliminate TMD complications on my headache, and awoke with my headache reduced to a wonderful 4. I was still nauseous, and the sick feeling inside was hitting me really hard all day. I ate one small meal in spite of everything. About the only good it did was put fuel into my body; because I felt really lousy all the rest of my day. I ended up taking a three hour nap in the evening, but awoke feeling the same way.
Because of how late my nap was I didn't get to sleep until around 430a; but awoke at 930a. I don't doubt another nap is in order later today. The good news today is that I awoke having another good start to my day. I've even had a little something to eat already. My head hurts, and I'm about to go take a T3 for it, but it will be my first dose of the day. (I'll take that!)
Anyhow, that catches me up. I thought I'd try a bit different of a format. I may or may not use it again. I'll have to read over it to decide if I like the way it turned out. So, TTFN!
Good Health to All!
ScottW
Unfortunately I was awoken again on Friday morning at 530a, so I took another full dose of Promethazine. Luckily I got back to sleep rather quickly (around 15 minutes!) and slept until nearly 1p.
Of course, on awaking I was groggy and stayed that way well into the evening. Plus, I had that ill feeling hitting all day. I ate a little by days end, and drank around 40 oz's. My headache was as prevalent as ever. My nap on Friday afternoon lasted a little over three hours. About the only good news was that the edema was nearly non-existent all day.
As a result of my late sleep on Friday, I was unable to get to sleep until after 3a on Saturday. I had nausea once again hit me in my sleep; but this time I was able to keep it under control without using meds. After waking I actually had a fairly good day, to start. The headache was minimal, the nausea reduced, edema was again low, and the nasty feeling inside was pretty quiet. Plus, I actually ate more than my usual pittance--I know...a miracle! My nap on Saturday started at 2p and I slept until 6p.
But alas, the good day was not to last. After waking at 6p everything (except the edema) came raging back. What had been a good day turned nasty. (I loved the break!) The remainder of my evening was spent dealing with lots of nausea, a headache was a solid 9, and lots of feeling sick.
I actually slept most of Saturday night through. On waking Sunday, I once again felt pretty good. The edema was still minimal. I had worn my TMD mouth guards to eliminate TMD complications on my headache, and awoke with my headache reduced to a wonderful 4. I was still nauseous, and the sick feeling inside was hitting me really hard all day. I ate one small meal in spite of everything. About the only good it did was put fuel into my body; because I felt really lousy all the rest of my day. I ended up taking a three hour nap in the evening, but awoke feeling the same way.
Because of how late my nap was I didn't get to sleep until around 430a; but awoke at 930a. I don't doubt another nap is in order later today. The good news today is that I awoke having another good start to my day. I've even had a little something to eat already. My head hurts, and I'm about to go take a T3 for it, but it will be my first dose of the day. (I'll take that!)
Anyhow, that catches me up. I thought I'd try a bit different of a format. I may or may not use it again. I'll have to read over it to decide if I like the way it turned out. So, TTFN!
Good Health to All!
ScottW
Thursday, November 3, 2011
03 November 2011
Yesterday was terrible.
I felt awful all day. It started in the middle of the night when I was awoken with intense nausea. Even a full dose of Promethazine took nearly an hour and a half to calm things down. In spite of taking the anti-emetic I still slept restlessly--the nausea breaking through anyway. After waking at 1245p I was groggy, as ususal; and this lasted for about six hours. In the mean time I had that ill feeling just slam me, and it stayed with me the rest of the day. Miserable would be an understatement. As far as eating, I had two slices of toast all day, and about 40 ounces of liquids. That's it.
My sleep last night was again restless; but I awoke feeling about 50% better. I still feel sick on the inside, but the nausea is reduced...so far. So far today I still haven't eaten, and am not hungry. My liquid intake has been precisely 12 oz's--from taking my noon-time meds.
I also awoke with my headache pounding, and feeling exhausted, as usual. I am hoping that I feel better as the day progresses.
Good Health to All!
ScottW
I felt awful all day. It started in the middle of the night when I was awoken with intense nausea. Even a full dose of Promethazine took nearly an hour and a half to calm things down. In spite of taking the anti-emetic I still slept restlessly--the nausea breaking through anyway. After waking at 1245p I was groggy, as ususal; and this lasted for about six hours. In the mean time I had that ill feeling just slam me, and it stayed with me the rest of the day. Miserable would be an understatement. As far as eating, I had two slices of toast all day, and about 40 ounces of liquids. That's it.
My sleep last night was again restless; but I awoke feeling about 50% better. I still feel sick on the inside, but the nausea is reduced...so far. So far today I still haven't eaten, and am not hungry. My liquid intake has been precisely 12 oz's--from taking my noon-time meds.
I also awoke with my headache pounding, and feeling exhausted, as usual. I am hoping that I feel better as the day progresses.
Good Health to All!
ScottW
Tuesday, November 1, 2011
01 November 2011
Well, Damn!
In spite of feeling the worst yet, there is no movement at all in any of my numbers, except my weight. I am now at243 239 pounds and dropping.
Since the numbers are so close to last time I'll not reiterate them now.
With as long as I've been stuck at 17.6%, I should be seeing another downward move soon. My next appointment is in just six weeks, so we'll see then.
One thing my doc wants me to do is weigh myself every day and adjust my diuretic intake based on the results. So, if I gain two pounds in a day, I'll take a whole dose of Bumetanide (Bumex). Conversely, if I have no weight gain [due to edemic increase], I'll take just a half dose of the Bumex. I will never take less than a half dose of the diuretic, nor any more than a whole dose.
That's all. No news is definitely not good news. C'est La Vie. (sigh!)
Good Health to All!
ScottW
In spite of feeling the worst yet, there is no movement at all in any of my numbers, except my weight. I am now at
Since the numbers are so close to last time I'll not reiterate them now.
With as long as I've been stuck at 17.6%, I should be seeing another downward move soon. My next appointment is in just six weeks, so we'll see then.
One thing my doc wants me to do is weigh myself every day and adjust my diuretic intake based on the results. So, if I gain two pounds in a day, I'll take a whole dose of Bumetanide (Bumex). Conversely, if I have no weight gain [due to edemic increase], I'll take just a half dose of the Bumex. I will never take less than a half dose of the diuretic, nor any more than a whole dose.
That's all. No news is definitely not good news. C'est La Vie. (sigh!)
Good Health to All!
ScottW
Friday, October 28, 2011
28 October 2011
Just a quick note tonight letting you know that I had my blood drawn today for the latest round of tests. The phlebotomist commented on the color of my blood; indicating it appeared darker than normal. (Let's hope so...that would mean movement towards dialysis and, hopefully, being closer to feeling better). The blood did look darker to me, as well.
I have my nephrology appointment on Tuesday morning, and will, as always, post the results later that afternoon. I'm hoping for a decrease in my kidney function; but not counting on it. Again, we'll see in just a few days.
I don't anticipate posting again until then.
Good Health to All!
ScottW
I have my nephrology appointment on Tuesday morning, and will, as always, post the results later that afternoon. I'm hoping for a decrease in my kidney function; but not counting on it. Again, we'll see in just a few days.
I don't anticipate posting again until then.
Good Health to All!
ScottW
Wednesday, October 26, 2011
26 October 2011
Well...so much for yesterday.
After I abruptly left my blog, I took a a half dose of Promethazine [for the nausea] and then slept for more than four hours. After waking, I experienced the usual extreme grogginess for hours; but the nausea was gone for a while.
Now, let's see if I can remember what else I wanted to write before the nausea so rudely interrupted my day... ;o)
I think the last thing I mentioned was the feeling of a full bladder, but actually having reduced urinary volume and flow. (...oh yeah...) The other characteristics of my urine have remained consistent from my last blog. No obvious changes, and no obvious blood in my urine, either.
The ammonia odor is still really strong. Others have also noticed the stronger odor on my breath and asked me about it. I just tell people that the ammonia suddenly got stronger and far more intense. Though I am not yet seeing [or smelling] any ammonia crystallization on my skin, I am feeling like my skin doesn't stay clean for more than a few hours these days.
My appetite has been less than usual. Over the last five or six days I have averaged just three-fourths of a cup of food per day. I am just not very hungry. I have been trying to drink more water, and have upped my daily liquid intake to about 50 Oz. That's not a big increase by any stretch, but at least it's better.
My headache the last week has been exacerbated by TMD symptoms. As a result, the headache has been stronger, more intense and with few lulls. I have had to take more T3's than usual (about 4.5/day) as a result. Today, the TMD symptoms are nearly non-existent, and the headache is reduced to it's now normal range.
With the recent downturn in seasonal temps, my ability to stay warm has dropped dramatically. My hands feel frozen all the time, as do my feet. I guess it's time to start dressing warmer--even when inside.
That's all I can think of today. I doubt that I've remembered everything because I feel as if I've forgotten several areas I wanted to touch on. Oh well. On we go...
Good Health to All!
ScottW
After I abruptly left my blog, I took a a half dose of Promethazine [for the nausea] and then slept for more than four hours. After waking, I experienced the usual extreme grogginess for hours; but the nausea was gone for a while.
Now, let's see if I can remember what else I wanted to write before the nausea so rudely interrupted my day... ;o)
I think the last thing I mentioned was the feeling of a full bladder, but actually having reduced urinary volume and flow. (...oh yeah...) The other characteristics of my urine have remained consistent from my last blog. No obvious changes, and no obvious blood in my urine, either.
The ammonia odor is still really strong. Others have also noticed the stronger odor on my breath and asked me about it. I just tell people that the ammonia suddenly got stronger and far more intense. Though I am not yet seeing [or smelling] any ammonia crystallization on my skin, I am feeling like my skin doesn't stay clean for more than a few hours these days.
My appetite has been less than usual. Over the last five or six days I have averaged just three-fourths of a cup of food per day. I am just not very hungry. I have been trying to drink more water, and have upped my daily liquid intake to about 50 Oz. That's not a big increase by any stretch, but at least it's better.
My headache the last week has been exacerbated by TMD symptoms. As a result, the headache has been stronger, more intense and with few lulls. I have had to take more T3's than usual (about 4.5/day) as a result. Today, the TMD symptoms are nearly non-existent, and the headache is reduced to it's now normal range.
With the recent downturn in seasonal temps, my ability to stay warm has dropped dramatically. My hands feel frozen all the time, as do my feet. I guess it's time to start dressing warmer--even when inside.
That's all I can think of today. I doubt that I've remembered everything because I feel as if I've forgotten several areas I wanted to touch on. Oh well. On we go...
Good Health to All!
ScottW
Tuesday, October 25, 2011
25 October 2011
I can't believe it's been six days since my last entry. It seems like I just did one a day or two ago.
Anyhow, on to the latest...
Both good and bad lately. Good in that the pain in my mid-back is better. I still get that stabbing pain when moving or bending in certain way; but the constant pain has apparently diminished. Maybe a cyst popped. I'll definitely relay the info to my doc next week.
Also, my naps have lessened somewhat. I had my usual long naps on Wed, Thurs and Friday; but since then, have only dozed off and on (no more than an hour at a time) several times each day. Plus, my nightly sleep has been deeper and more restful than it has in some time.
On the bad side of things, I've experienced a definite uptick in occurances of nausea. I'm once again taking small doses Promethazine each day. Also, on Saturday night I had it hit me out of nowhere. The nausea level went from non-existant to near emesis literally within a minute and a half. I immediately took a half dose of the anti-emetic. After forty minutes and minimal relief, I took another half dose, then waited another forty-five minutes before the nausea was reduced. The same thing happened again on Sunday evening, then again last night. The Promethazine continues to take care of the nausea, though on average, more has been required than in previous episodes.
In my last entry I noted several occurances of a full bladder but with reduced urinary flow/volume. Since then, I've had this happen at least a dozen times.
--I just had more nausea hit me completely out of the blue. I'll return later to finish--
Anyhow, on to the latest...
Both good and bad lately. Good in that the pain in my mid-back is better. I still get that stabbing pain when moving or bending in certain way; but the constant pain has apparently diminished. Maybe a cyst popped. I'll definitely relay the info to my doc next week.
Also, my naps have lessened somewhat. I had my usual long naps on Wed, Thurs and Friday; but since then, have only dozed off and on (no more than an hour at a time) several times each day. Plus, my nightly sleep has been deeper and more restful than it has in some time.
On the bad side of things, I've experienced a definite uptick in occurances of nausea. I'm once again taking small doses Promethazine each day. Also, on Saturday night I had it hit me out of nowhere. The nausea level went from non-existant to near emesis literally within a minute and a half. I immediately took a half dose of the anti-emetic. After forty minutes and minimal relief, I took another half dose, then waited another forty-five minutes before the nausea was reduced. The same thing happened again on Sunday evening, then again last night. The Promethazine continues to take care of the nausea, though on average, more has been required than in previous episodes.
In my last entry I noted several occurances of a full bladder but with reduced urinary flow/volume. Since then, I've had this happen at least a dozen times.
--I just had more nausea hit me completely out of the blue. I'll return later to finish--
Wednesday, October 19, 2011
19 October 2011
I ended up falling asleep shortly after finishing up that last blog entry for (I believe) a good three plus hour nap.
Every day since that last entry I have also slept at least three hours in the afternoon. Usually the nap has been preceded by an hour or two of sleepiness and nodding off. My naps have been, in respective order, 3+, 3, 3, 4, 5, and 4. Additionally, my nightly sleep has been inconsistent in duration and quality.
I've also been awoken twice because of nausea, and once for intense leg cramps on both lower legs anterior, between the ankles and mid-tib/fib. I haven't had any leg cramps literally in decades; so this was definitely unusual for me. I tried stretching and relaxing my feet; but this only exacerbated the cramping. I ended up using Icy-Hot cream on my legs. This was able to get things to relax. However, three days later, that same area on both legs is tender, sore and very tight.
The pain in my mid-back over the R kidney continues unabated. I haven't yet called my doc simply because I don't have a way to get there. While the pain has not intensified any further, it still doubles me over when I move in whatever way that aggravates it. My next nephrology appointment is on Nov. 1st; I may just end up waiting until then. I don't know.
The ammonia smell I experience has taken a step towards the worse. I had become sort of used to it--though I am constantly aware of it--but now it is definitely intensified to a much stronger, more intense odor. Nasty stuff. Still no obvious skin odors, however; and no ammonia crystallization.
My appetite has remained poor, and my liquid intake, as well. I'm averaging about 1.25 cups of food per day (snacking included), and approximately 40-50 Oz's of liquids. I just have no appetite and am thirsty very little.
However, my urinary output is staying somewhat consistent in volume and occurances. I have had two or three incidents when my bladder felt full, only to have very little flow or volume. The cloudiness of my urine remains high, the color is consistent, and the foaminess is high. No signs of blood.
My headache, now a few weeks short of two years in duration, has been averaging a solid 8-8.5, with occasional forays into the 9.5's+
And...that's all I can remember for today.
I will keep you updated on that pain in my back, and what I end up doing about it; and when.
Good Health to All!
ScottW
Every day since that last entry I have also slept at least three hours in the afternoon. Usually the nap has been preceded by an hour or two of sleepiness and nodding off. My naps have been, in respective order, 3+, 3, 3, 4, 5, and 4. Additionally, my nightly sleep has been inconsistent in duration and quality.
I've also been awoken twice because of nausea, and once for intense leg cramps on both lower legs anterior, between the ankles and mid-tib/fib. I haven't had any leg cramps literally in decades; so this was definitely unusual for me. I tried stretching and relaxing my feet; but this only exacerbated the cramping. I ended up using Icy-Hot cream on my legs. This was able to get things to relax. However, three days later, that same area on both legs is tender, sore and very tight.
The pain in my mid-back over the R kidney continues unabated. I haven't yet called my doc simply because I don't have a way to get there. While the pain has not intensified any further, it still doubles me over when I move in whatever way that aggravates it. My next nephrology appointment is on Nov. 1st; I may just end up waiting until then. I don't know.
The ammonia smell I experience has taken a step towards the worse. I had become sort of used to it--though I am constantly aware of it--but now it is definitely intensified to a much stronger, more intense odor. Nasty stuff. Still no obvious skin odors, however; and no ammonia crystallization.
My appetite has remained poor, and my liquid intake, as well. I'm averaging about 1.25 cups of food per day (snacking included), and approximately 40-50 Oz's of liquids. I just have no appetite and am thirsty very little.
However, my urinary output is staying somewhat consistent in volume and occurances. I have had two or three incidents when my bladder felt full, only to have very little flow or volume. The cloudiness of my urine remains high, the color is consistent, and the foaminess is high. No signs of blood.
My headache, now a few weeks short of two years in duration, has been averaging a solid 8-8.5, with occasional forays into the 9.5's+
And...that's all I can remember for today.
I will keep you updated on that pain in my back, and what I end up doing about it; and when.
Good Health to All!
ScottW
Thursday, October 13, 2011
13 October 2011
In the two days since my last post, things with my symptoms have done an uptick.
My sleep remain all over the place. My naps the last two days have been three hours and four hours respectively. So far today, I haven't fallen asleep. My exhaustion remains as prevalent and (excuse me...) exhaustive as ever.
The pain in my back over the R kidney has gotten worse. I can feel it constantly now, and still aggravate it when bending or moving certain ways. When I do, my whole body reacts and I can only wait for the pain to decrease. If this keeps up over the weekend, I'll call my doc on Monday morning.
The headache has become significantly nastier, and with little or no letup. The T3's are barely keeping the worst of the headache at bay.
My lower legs are swelling again every day. (I haven't yet noticed any increase in my hands). I am drinking far less than I should be, but the edema kicks in ad does its [now usual] morning to night cycle. Yesterday I awoke to reduced swelling in my feet, but it was not as minimal as I've previously seen. Though my feet didn't swell to anything huge [last night], the edema did increase significantly.
My appetite has gotten worse over the last few days. I am snacking very little, and my one meal of the day has averaged about a cup of food. I estimate my liquid intake to be about 40 Oz's/day.
As far as my urinary characteristics, I am voiding around eight times/day. My urine has been cloudy most of the time the last week or so; the foaminess remains high, and the color has been consistently yellow to light amber. Still no obvious sign of blood, and no kidney stones.
The vertigo, recently held in check for whatever reason, is making its comeback. I am leaning against walls again, relying on my cane to keep me on my feet [when outside the house], and have awoken several times with mild spinning of the room. I don't understand why it reduced in the first place; but I'm absolutely grateful for the brief respite.
So, after all of that, it is clear that my little break is over, and the major symptomology is breaking through once again. As I've stated earlier, I don't know why these breaks happen; but I am eternally grateful they do, because the breaks allow me to rejuvenate my batteries--both mentally and physically--and face the daily grind that the S/S's (Signs and Symptoms) exert upon my mind and body.
I continue to receive many words of strength and encouragement from many friends. Their words and support are invaluable to me in this fight. Knowing I am not alone brings great comfort and helps me to remain strong against the tide of darkness and despair that might otherwise envelope me as this whole experience drags on to its conclusion.
My Thanks and Heart-felt appreciation to everyone for all that you do for me!
Good Health to All!
ScottW
My sleep remain all over the place. My naps the last two days have been three hours and four hours respectively. So far today, I haven't fallen asleep. My exhaustion remains as prevalent and (excuse me...) exhaustive as ever.
The pain in my back over the R kidney has gotten worse. I can feel it constantly now, and still aggravate it when bending or moving certain ways. When I do, my whole body reacts and I can only wait for the pain to decrease. If this keeps up over the weekend, I'll call my doc on Monday morning.
The headache has become significantly nastier, and with little or no letup. The T3's are barely keeping the worst of the headache at bay.
My lower legs are swelling again every day. (I haven't yet noticed any increase in my hands). I am drinking far less than I should be, but the edema kicks in ad does its [now usual] morning to night cycle. Yesterday I awoke to reduced swelling in my feet, but it was not as minimal as I've previously seen. Though my feet didn't swell to anything huge [last night], the edema did increase significantly.
My appetite has gotten worse over the last few days. I am snacking very little, and my one meal of the day has averaged about a cup of food. I estimate my liquid intake to be about 40 Oz's/day.
As far as my urinary characteristics, I am voiding around eight times/day. My urine has been cloudy most of the time the last week or so; the foaminess remains high, and the color has been consistently yellow to light amber. Still no obvious sign of blood, and no kidney stones.
The vertigo, recently held in check for whatever reason, is making its comeback. I am leaning against walls again, relying on my cane to keep me on my feet [when outside the house], and have awoken several times with mild spinning of the room. I don't understand why it reduced in the first place; but I'm absolutely grateful for the brief respite.
So, after all of that, it is clear that my little break is over, and the major symptomology is breaking through once again. As I've stated earlier, I don't know why these breaks happen; but I am eternally grateful they do, because the breaks allow me to rejuvenate my batteries--both mentally and physically--and face the daily grind that the S/S's (Signs and Symptoms) exert upon my mind and body.
I continue to receive many words of strength and encouragement from many friends. Their words and support are invaluable to me in this fight. Knowing I am not alone brings great comfort and helps me to remain strong against the tide of darkness and despair that might otherwise envelope me as this whole experience drags on to its conclusion.
My Thanks and Heart-felt appreciation to everyone for all that you do for me!
Good Health to All!
ScottW
Tuesday, October 11, 2011
11 October 2011
(more follow-up on yesterday...)
Because of all the sleep I'd gotten yesterday, I was unable to get to sleep until about 330a this morning. Even though I was not yet sleeping, I was exhausted and on the verge of sleeping for about two hours prior to my nightly rest.
I awoke this morning at 0930a, still groggy from my use of Promethazine yesterday morning. Plus, the nausea was still there, but less than yesterday; and my headache was going strong.
All in all, since Sunday night, I've gotten a total of about 22 hours of sleep in a thirty six hour period.
It would seem that my kidneys are working less. I mean, thirteen hours of sleep [since Monday morning] off of a half-dose of Promethazine. That is significant.
Anyhow, I just thought it important to relay that info.
Good health to All!
ScottW
Because of all the sleep I'd gotten yesterday, I was unable to get to sleep until about 330a this morning. Even though I was not yet sleeping, I was exhausted and on the verge of sleeping for about two hours prior to my nightly rest.
I awoke this morning at 0930a, still groggy from my use of Promethazine yesterday morning. Plus, the nausea was still there, but less than yesterday; and my headache was going strong.
All in all, since Sunday night, I've gotten a total of about 22 hours of sleep in a thirty six hour period.
It would seem that my kidneys are working less. I mean, thirteen hours of sleep [since Monday morning] off of a half-dose of Promethazine. That is significant.
Anyhow, I just thought it important to relay that info.
Good health to All!
ScottW
Monday, October 10, 2011
10 October 2011
Well, the break in my major symptomology has apparently ended.
Around ten last night I became suddenly nauseated. I ended up taking a half dose of Promethazine to get it settled down. Plus, that spot on my mid-back over the R kidney suddenly became really painful. Between the two things I was not a happy camper.
When I awoke this morning I had to immediately take a half dose of the anti-emetic once again. An hour passed before the nausea began to settle down. That stabbing pain in my back has not reduced at all, and T3's only just keep it in check. Plus, my headache has returned with a vengeance today.
Woo-Hoo! This is fun stuff! :o(
Hoping I can get things under control...
ScottW
**...it's now 1030p and I spent nearly the entire day [since posting earlier] sleeping from the effects of the Promethazine. I fell asleep around noon, and didn't wake up until 745p. On waking I was terribly stuporous, and my headache was awful; But hey...the nausea was under control! ;o)
Around ten last night I became suddenly nauseated. I ended up taking a half dose of Promethazine to get it settled down. Plus, that spot on my mid-back over the R kidney suddenly became really painful. Between the two things I was not a happy camper.
When I awoke this morning I had to immediately take a half dose of the anti-emetic once again. An hour passed before the nausea began to settle down. That stabbing pain in my back has not reduced at all, and T3's only just keep it in check. Plus, my headache has returned with a vengeance today.
Woo-Hoo! This is fun stuff! :o(
Hoping I can get things under control...
ScottW
**...it's now 1030p and I spent nearly the entire day [since posting earlier] sleeping from the effects of the Promethazine. I fell asleep around noon, and didn't wake up until 745p. On waking I was terribly stuporous, and my headache was awful; But hey...the nausea was under control! ;o)
Sunday, October 9, 2011
09 October 2011
Altogether, the last four days have been alright.
My nausea has been minimal, the vertigo as well. The edema has also been reduced. My headache, though ever-present, has been completely manageable. Sounds OK, right?
On the flip side, a recent downturn in weather has resulted in my being ridiculously cold 24/7. I've gone back to wearing a fleece jacket, sweatpants and warm footies [at all times]. My hands feel totally frozen, even in a warm room. This is especially true in my L hand, above the site of my AV Fistula. Diversion of some of the blood supply has definitely impacted the temp in my hand, as the recent weather change has made extremely apparent.
My sleep continues its pattern of being all over the place. My nightly sleep is still restless, though my dreams remain controllable. Since my last entry my sleep has averaged just six hours at night, then naps of at least four hours sometime during the day. These have happened anywhere from two to five hours after awakening in the morning.
The pain over my R kidney area has gotten a bit worse. It still feels as if I've been stabbed in my back whenever I move or bend certain ways. Laying on my R side is becoming increasingly challenging because of this. The pain is not yet constant. Again, if it becomes constant or extremely painful, I'll go to my doc for a possible canulation to drain what might be a large cyst on my kidney.
I've had four or five instances of deeply cloudy urine since my last post. Additionally, my urine overall has been terribly odoriferous. The flow remains fairly consistent, but the color has ranged from almost clear to a light amber. Foaminess remains high.
Ammonia continues to be a problem. I'm told my breath is worsening, and my skin odor, too. Still no crystalization on the skin. When I get up in the morning I can't stand to smell my own breath. I'm now in the habit of brushing my teeth right after I'm dressed. This only helps a little; but I'll take what I can get. We now have an air freshener in the house. Plus, we have to air out the house every day in order to control the smell from the ammonia coming off my breath and skin.
Because of my fairly good week my brain has had a bit of a break, and my mood has been much better.
I don't know why these breaks come along; but I'll gladly accept and enjoy them because they really lift my spirits and my ability to be strong in those times when I feel increasingly horrible.
That's all I can think of today.
Good Health to All!
ScottW
My nausea has been minimal, the vertigo as well. The edema has also been reduced. My headache, though ever-present, has been completely manageable. Sounds OK, right?
On the flip side, a recent downturn in weather has resulted in my being ridiculously cold 24/7. I've gone back to wearing a fleece jacket, sweatpants and warm footies [at all times]. My hands feel totally frozen, even in a warm room. This is especially true in my L hand, above the site of my AV Fistula. Diversion of some of the blood supply has definitely impacted the temp in my hand, as the recent weather change has made extremely apparent.
My sleep continues its pattern of being all over the place. My nightly sleep is still restless, though my dreams remain controllable. Since my last entry my sleep has averaged just six hours at night, then naps of at least four hours sometime during the day. These have happened anywhere from two to five hours after awakening in the morning.
The pain over my R kidney area has gotten a bit worse. It still feels as if I've been stabbed in my back whenever I move or bend certain ways. Laying on my R side is becoming increasingly challenging because of this. The pain is not yet constant. Again, if it becomes constant or extremely painful, I'll go to my doc for a possible canulation to drain what might be a large cyst on my kidney.
I've had four or five instances of deeply cloudy urine since my last post. Additionally, my urine overall has been terribly odoriferous. The flow remains fairly consistent, but the color has ranged from almost clear to a light amber. Foaminess remains high.
Ammonia continues to be a problem. I'm told my breath is worsening, and my skin odor, too. Still no crystalization on the skin. When I get up in the morning I can't stand to smell my own breath. I'm now in the habit of brushing my teeth right after I'm dressed. This only helps a little; but I'll take what I can get. We now have an air freshener in the house. Plus, we have to air out the house every day in order to control the smell from the ammonia coming off my breath and skin.
Because of my fairly good week my brain has had a bit of a break, and my mood has been much better.
I don't know why these breaks come along; but I'll gladly accept and enjoy them because they really lift my spirits and my ability to be strong in those times when I feel increasingly horrible.
That's all I can think of today.
Good Health to All!
ScottW
Wednesday, October 5, 2011
04 October 2011
Overall, the last three days have been better.
The 'better' comes in the form of reduced nausea and reduced edema. For some reason the nausea has almost been non-existent. Aside from one intense episode, I have actually been comfortable. I don't know how long it will last, but I'll take it while it's here! Plus, the peripheral edema has been very low. I am still having that feeling in my legs every morning, it's just not ending up as full blown edema. Again, I'll take it while I've got it!
Next, let's talk about sleep again. The pattern and hours of sleep continue. Sunday I had 7.5 hours of nighttime sleep, was awake for about three hours, then slept again for another three and a half. I was asleep again by 1115p. Monday I awoke at 845a, then fell asleep at 230p and slept for three hours and forty-five minutes. Unfortunately, I was unable to get to sleep until 0300a this morning; sleeping until just 845a, but was awake just three hours before falling asleep again and dozing until 0500p. So, not much fun. For me, that's the reality of this aspect of my struggle with the PCKD.
My headache has been up and down. Overall, my T3 usage has been down the last few days to about 3.25/day. This is in part due to yesterday's near non-present headache. It averaged a wonderful 4 most of the day; and was able to tolerate the headache without any meds for most of the day; giving in later in the evening to an increased headache level of 8. Sunday and today, my headache was at or near its [now normally] elevated, painful 9+.
My energy level has been pretty low. I get a little bit of housework done, then have to sit and rest. The remainder of the day is spent mentally mustering whatever energy I can summon to get a little more accomplished.
Let's talk about the vertigo. I realized yesterday that my usual vertigo has been present, but minimal in its impact. No rooms have been spinning, no sudden complete loss of balance, etc. Like the reduced nausea and edema I'll not complain one bit, and enjoy it as long as it is having a minimal impact on everything I do.
As in my last entry my appetite has been worse than normal. I haven't done any snacking the last three days, and have eaten just one meal of about one cup each day. My liquid intake has been averaging approx 40 oz/day. So all in all, my food and liquid intake are both down.
The pain in my mid-back over the R kidney has been ranging from moderate to painful. Any bending or stretching continues to aggravate the pain. Tonight, for a reason that I have no idea about, this pain increased suddenly and quickly. So far, it has not settled down.
That's about all for today. As always, let's hope for better days ahead.
Good Health to All!
ScottW
The 'better' comes in the form of reduced nausea and reduced edema. For some reason the nausea has almost been non-existent. Aside from one intense episode, I have actually been comfortable. I don't know how long it will last, but I'll take it while it's here! Plus, the peripheral edema has been very low. I am still having that feeling in my legs every morning, it's just not ending up as full blown edema. Again, I'll take it while I've got it!
Next, let's talk about sleep again. The pattern and hours of sleep continue. Sunday I had 7.5 hours of nighttime sleep, was awake for about three hours, then slept again for another three and a half. I was asleep again by 1115p. Monday I awoke at 845a, then fell asleep at 230p and slept for three hours and forty-five minutes. Unfortunately, I was unable to get to sleep until 0300a this morning; sleeping until just 845a, but was awake just three hours before falling asleep again and dozing until 0500p. So, not much fun. For me, that's the reality of this aspect of my struggle with the PCKD.
My headache has been up and down. Overall, my T3 usage has been down the last few days to about 3.25/day. This is in part due to yesterday's near non-present headache. It averaged a wonderful 4 most of the day; and was able to tolerate the headache without any meds for most of the day; giving in later in the evening to an increased headache level of 8. Sunday and today, my headache was at or near its [now normally] elevated, painful 9+.
My energy level has been pretty low. I get a little bit of housework done, then have to sit and rest. The remainder of the day is spent mentally mustering whatever energy I can summon to get a little more accomplished.
Let's talk about the vertigo. I realized yesterday that my usual vertigo has been present, but minimal in its impact. No rooms have been spinning, no sudden complete loss of balance, etc. Like the reduced nausea and edema I'll not complain one bit, and enjoy it as long as it is having a minimal impact on everything I do.
As in my last entry my appetite has been worse than normal. I haven't done any snacking the last three days, and have eaten just one meal of about one cup each day. My liquid intake has been averaging approx 40 oz/day. So all in all, my food and liquid intake are both down.
The pain in my mid-back over the R kidney has been ranging from moderate to painful. Any bending or stretching continues to aggravate the pain. Tonight, for a reason that I have no idea about, this pain increased suddenly and quickly. So far, it has not settled down.
That's about all for today. As always, let's hope for better days ahead.
Good Health to All!
ScottW
Saturday, October 1, 2011
01 October 2011
The last five days have been challenging, rather than better.
Let's start off with sleep. Lots and lots and LOTS of sleep over the past five days. On average, I've had about twelve hours sleep per day. On Thursday I had even more. I'd awoken from my nighttime sleep of about seven hours, only to fall asleep again just two and a half hours later for another 4.5 hours of sleep. Then, I was asleep for my night again by 1230a, and slept for another eight. In between all these periods of sleep I feel utterly exhausted; like I'm about ready to fall asleep, exhausted. Not fun. That makes everything I'm trying to get done every day incredibly difficult to even start, let alone accomplish. This includes everything I do including housework, writing this blog, my personal projects, etc.
I've been experiencing that ill feeling every day, all day. Nothing helps it whatsoever. About the only variable in that feeling is the intensity. It ranges from moderate to severe, with only the occasional mild intensity. The last week or so I've done a lot of sitting around feeling miserable from this sensation.
My urinary output and characteristics both remain consistent with not apparent changes. Still no evidence of kidney stones--thank goodness! But that pain over my R kidney continues. It has not yet increased in pain or duration. The kidney area pain has become uncomfortable when I lay in bed, making me quite uncomfortable. So far, the pain has neither interrupted nor interfered with my sleep.
My headache has gotten worse again. I'm still hesitant to take two T3's at a time, and am paying for it with suddenly intense and uncontrolled head pain. I inevitably take the second T3, and feel better about thirty minutes later.
My appetite is still terrible. In the last five days I've gone without food once, and have eaten less than normal (about a single cup of food) twice; which leaves just one day of eating normal (about 1.5 cups), plus today's near normal (so far) food intake.
The peripheral edema has again been up and down, but without consistency either way. I am still having that odd feeling in my legs before the swelling increases. As before, my kidneys are still compensating for any edemic increases. How long they do remains the big question.
That's all I can think of for today. I know I'm forgetting something I wanted to say...Oh well. It'll probably come to mind right after I log off. :o)
Good Health to All!
ScottW
Let's start off with sleep. Lots and lots and LOTS of sleep over the past five days. On average, I've had about twelve hours sleep per day. On Thursday I had even more. I'd awoken from my nighttime sleep of about seven hours, only to fall asleep again just two and a half hours later for another 4.5 hours of sleep. Then, I was asleep for my night again by 1230a, and slept for another eight. In between all these periods of sleep I feel utterly exhausted; like I'm about ready to fall asleep, exhausted. Not fun. That makes everything I'm trying to get done every day incredibly difficult to even start, let alone accomplish. This includes everything I do including housework, writing this blog, my personal projects, etc.
I've been experiencing that ill feeling every day, all day. Nothing helps it whatsoever. About the only variable in that feeling is the intensity. It ranges from moderate to severe, with only the occasional mild intensity. The last week or so I've done a lot of sitting around feeling miserable from this sensation.
My urinary output and characteristics both remain consistent with not apparent changes. Still no evidence of kidney stones--thank goodness! But that pain over my R kidney continues. It has not yet increased in pain or duration. The kidney area pain has become uncomfortable when I lay in bed, making me quite uncomfortable. So far, the pain has neither interrupted nor interfered with my sleep.
My headache has gotten worse again. I'm still hesitant to take two T3's at a time, and am paying for it with suddenly intense and uncontrolled head pain. I inevitably take the second T3, and feel better about thirty minutes later.
My appetite is still terrible. In the last five days I've gone without food once, and have eaten less than normal (about a single cup of food) twice; which leaves just one day of eating normal (about 1.5 cups), plus today's near normal (so far) food intake.
The peripheral edema has again been up and down, but without consistency either way. I am still having that odd feeling in my legs before the swelling increases. As before, my kidneys are still compensating for any edemic increases. How long they do remains the big question.
That's all I can think of for today. I know I'm forgetting something I wanted to say...Oh well. It'll probably come to mind right after I log off. :o)
Good Health to All!
ScottW
Monday, September 26, 2011
26 September 2011
A little better since my last blog.
I never did eat that entire day. I just wasn't feeling good by any measure. Since then my appetite has been up a bit (1.5-2 cups/day), but I feel awful (nausea) after eating...every time. It does go away after about an hour, though.
The edema has been consistently bad since Friday. It goes through the same pattern every day--that feeling in my legs in the morning; increasing edema throughout the day, worsening to severe by the time I go to bed; awaken in the morning with my leg looking better, but I urinate a lot as soon as I get up, and again about an hour later; then repeat the entire day. I am still thankful that my kidneys continue to mitigate the edema.
My headache has been better. Aside from one day that was exacerbated by TMD symptoms, things in this area have been OK. Still having a constant headache, mind you; I've just had a little more control over it the last few days.
That pain over my R kidney has been terrible. If I move the wrong way I feel like a knife is stabbing me in the back. The pain is not yet constant, so I'm not yet overly concerned. IF it worsens to a constant pain, I'll go see my doc.
My sleep continues to be all over the place. My nighttime sleep generally goes from about 130a-930a, but is extremely restless. However, I am exhausted upon waking, and have been falling asleep around five hours after waking and sleep at least three additional hours; after which I am still exhausted.
My breath has gotten really bad. I've had to start airing out the house every day. This in spite of brushing my teeth and using the cinnamon Altoids every day. I'm not at all surprised given that my mouth has had a nasty taste every morning for months now. I'm told the prevalent odor has been ammonia. This is also an indicator of where my kidneys are at because if they were in failure, the odor would be of Uric Acid. Fortunately--or, unfortunately, depending on your point of view--that means that I'm still a while from renal shutdown.
That's about all for today. I hope, as always, to have better days ahead.
Good Health to All!
ScottW
I never did eat that entire day. I just wasn't feeling good by any measure. Since then my appetite has been up a bit (1.5-2 cups/day), but I feel awful (nausea) after eating...every time. It does go away after about an hour, though.
The edema has been consistently bad since Friday. It goes through the same pattern every day--that feeling in my legs in the morning; increasing edema throughout the day, worsening to severe by the time I go to bed; awaken in the morning with my leg looking better, but I urinate a lot as soon as I get up, and again about an hour later; then repeat the entire day. I am still thankful that my kidneys continue to mitigate the edema.
My headache has been better. Aside from one day that was exacerbated by TMD symptoms, things in this area have been OK. Still having a constant headache, mind you; I've just had a little more control over it the last few days.
That pain over my R kidney has been terrible. If I move the wrong way I feel like a knife is stabbing me in the back. The pain is not yet constant, so I'm not yet overly concerned. IF it worsens to a constant pain, I'll go see my doc.
My sleep continues to be all over the place. My nighttime sleep generally goes from about 130a-930a, but is extremely restless. However, I am exhausted upon waking, and have been falling asleep around five hours after waking and sleep at least three additional hours; after which I am still exhausted.
My breath has gotten really bad. I've had to start airing out the house every day. This in spite of brushing my teeth and using the cinnamon Altoids every day. I'm not at all surprised given that my mouth has had a nasty taste every morning for months now. I'm told the prevalent odor has been ammonia. This is also an indicator of where my kidneys are at because if they were in failure, the odor would be of Uric Acid. Fortunately--or, unfortunately, depending on your point of view--that means that I'm still a while from renal shutdown.
That's about all for today. I hope, as always, to have better days ahead.
Good Health to All!
ScottW
Wednesday, September 21, 2011
21 September 2011
I'm going to make this quick today. My head is killing me, and I feel damned lousy; but saw it was past time to make an entry. So, here we go...
Lots of felling ill the past several days. No let-up with this at all. It's going 24/7.
My headache has been nearly uncontrollable. Even two T3's are barely keeping it in check.
Moderate edema in my feet for the last three days. My body has been trying to balance this with increased urination. I'm just thankful that it's able to keep the edema at a moderate level. However, I've had lots of pain in my feet and legs that is, of course, worse whenever I walk.
Been having lots of vertigo...even while sitting and laying. Woo-Hoo.
No change in my appetite. It's still as terrible as ever. Yesterday I ate all of about one cup of food. Today (so far), I haven't eaten anything.
The nausea has been reduced...thank goodness.
And that's about all for today. I just feel so lousy...
ScottW
Lots of felling ill the past several days. No let-up with this at all. It's going 24/7.
My headache has been nearly uncontrollable. Even two T3's are barely keeping it in check.
Moderate edema in my feet for the last three days. My body has been trying to balance this with increased urination. I'm just thankful that it's able to keep the edema at a moderate level. However, I've had lots of pain in my feet and legs that is, of course, worse whenever I walk.
Been having lots of vertigo...even while sitting and laying. Woo-Hoo.
No change in my appetite. It's still as terrible as ever. Yesterday I ate all of about one cup of food. Today (so far), I haven't eaten anything.
The nausea has been reduced...thank goodness.
And that's about all for today. I just feel so lousy...
ScottW
Friday, September 16, 2011
16 September 2011
Since Monday's post things have been up and down.
I have not had a return of the severe edema so far this week. In fact, the edema is barely visible right now in either my hands or my legs and feet. Despite this, I have been feeling terrible on the inside. I'm not talking about the nausea...that's another thing entirely. It's that ill feeling I referenced before; and it has been hitting me hard, and making me feel just awful.
As far as the nausea goes, that too has been up and down. As usual eating hits me hard and I feel nauseated for about an hour afterward. I haven't yet found anything to alleviate this. The usual onset of nausea is as unpredictable as ever. I have not been awoken this week--thank goodness--but have had nausea onset [when awake] several times each day. Nothing overwhelming or uncontrollable, though.
My back has been really painful all week. I was able to get those vertebrae in on my own, so that is no longer contributing to the pain level. Now the pain is all about what I presume to be the cysts on my kidneys...particularly on my R side. Laying, sitting, walking...nothing helps this pain. Plus, I've noticed that I also have a particularly painful area away from the mid-back, located about halfway between mid-line and the R side. It's not just painful on resting, but to the touch as well.
Other things in the symptomology are doing OK. My urine flow remains consistent in volume and characteristics; my eyesight continues to vary between good and bad (depending on how I'm feeling); the headache is terrible 100% of the time; my body is constantly cold; my breathe is always bad these days, especially in the mornings; etc.
My recent self-exam on how I am doing mentally has really helped my day to day. I am not struggling now, and have been getting more done every day. I still have a hard time with getting this blog done, and writing letters, but that has more to do with exhaustion than anything else.
That's all I can think of for now so I'll be signing off. Looking forward to a few better days.
Good Health to All!
ScottW
I have not had a return of the severe edema so far this week. In fact, the edema is barely visible right now in either my hands or my legs and feet. Despite this, I have been feeling terrible on the inside. I'm not talking about the nausea...that's another thing entirely. It's that ill feeling I referenced before; and it has been hitting me hard, and making me feel just awful.
As far as the nausea goes, that too has been up and down. As usual eating hits me hard and I feel nauseated for about an hour afterward. I haven't yet found anything to alleviate this. The usual onset of nausea is as unpredictable as ever. I have not been awoken this week--thank goodness--but have had nausea onset [when awake] several times each day. Nothing overwhelming or uncontrollable, though.
My back has been really painful all week. I was able to get those vertebrae in on my own, so that is no longer contributing to the pain level. Now the pain is all about what I presume to be the cysts on my kidneys...particularly on my R side. Laying, sitting, walking...nothing helps this pain. Plus, I've noticed that I also have a particularly painful area away from the mid-back, located about halfway between mid-line and the R side. It's not just painful on resting, but to the touch as well.
Other things in the symptomology are doing OK. My urine flow remains consistent in volume and characteristics; my eyesight continues to vary between good and bad (depending on how I'm feeling); the headache is terrible 100% of the time; my body is constantly cold; my breathe is always bad these days, especially in the mornings; etc.
My recent self-exam on how I am doing mentally has really helped my day to day. I am not struggling now, and have been getting more done every day. I still have a hard time with getting this blog done, and writing letters, but that has more to do with exhaustion than anything else.
That's all I can think of for now so I'll be signing off. Looking forward to a few better days.
Good Health to All!
ScottW
Monday, September 12, 2011
12 September 2011
I know it's been nearly a week since my last entry. My bad. In my defense, I have had a terrible week.
To start, I have had LOTS (!!!) of nausea. I've been awoken three times with near emesis nausea, and have had it hit me numerous times while awake, as well. During the times the nausea woke me up, it was always the same story... Near emesis on waking, down at least a half dose of the anti-emetic Promethazine, then wait between 30-75 minutes for the med to eliminate the nausea, and send me off to a deep sleep from which I awaken extremely groggy/foggy headed. I know...it's a party...one that you definitely don't want to be a part of! No, no noooo.
The nausea that hits me while awake comes on gradually at first, then smacks me really hard. The small doses of Promethazine do absolutely no good whatsoever (not to mention the waste of time it is to take Tums), and I have to take at least a half dose if I want to control it. As a result of all the Promethazine usage, my sleep is all over the place. The only thing I can count on sleep-wise is that I never know when I'll go down for me "nightly" sleep. I am however, extremely grateful that I can control the nausea when it gets out of control. Always.
My headaches have had no let-up. Lots of pain every day; and only the T3's keep them under control.
My mid-back over the kidneys continues to be extremely painful. I also have a vertebrae or two out in the same area which adds pain to whatever the cysts on my kidneys are doing. If I can't get them in on my own, I'll go see my chiropractor. I'm just wary of anything pressing on my kidneys right now.
After I awoke a few days ago and placed my feet on the floor then stood up, I knew instantly that i would have a huge increase of edema that day. I can't describe the sensation in my legs other than, my knees down to my feet felt really weird. Sure enough, as the day progressed my feet went from just minor edema to terrible. I had rebound of minutes+, and color return of 10+. One spot I tested on my R foot had an imprint that lasted for nearly 15 minutes. Another place on my L foot had my finger pressing in a good half inch. This edema was really bad.
It gradually reduced over the next couple of days, then it happened again...this time with that sensation in my legs starting mid-thigh on both legs. Once again the edema increased to about the same level. This whole experience is definitely something new. Right now the edema doesn't stay severe though, so I am not yet alarmed. Plus, my kidneys are continuing to aid reduction of the edema with increased rates of urination after the edema has gotten to its worst. So, my body is still able to maintain at least some balance.
The lack of appetite continues, as does my liquid intake. I can barely smell any foods these days, and as I've stated before, most foods taste very, very bland; so I rarely enjoy eating, either. Over the last week I'd estimate my daily intake to be 1.5 cups of food, and around 60 oz of liquids.
After some self examination, I determined that I was struggling mentally way too much. I was doing less and less from day to day, and feeling a bit grumpy and unenthused. So, I decided to do better. I am being cognizant of my body language, aware of my motivation level, and am working daily with increased effort to be happier, a little more active, and more aware of how I am coming across to others. This has helped me immensely this past week; and will continue to get my mind in a better place. It's good that I do these self checks every so often. Otherwise I might end up in a place of darkness and despair that would be terribly difficult to get out of.
That's all for today. I promise that I won't wait another week before writing my next entry.
Have a wonderful day!
Good Health to All!
ScottW
To start, I have had LOTS (!!!) of nausea. I've been awoken three times with near emesis nausea, and have had it hit me numerous times while awake, as well. During the times the nausea woke me up, it was always the same story... Near emesis on waking, down at least a half dose of the anti-emetic Promethazine, then wait between 30-75 minutes for the med to eliminate the nausea, and send me off to a deep sleep from which I awaken extremely groggy/foggy headed. I know...it's a party...one that you definitely don't want to be a part of! No, no noooo.
The nausea that hits me while awake comes on gradually at first, then smacks me really hard. The small doses of Promethazine do absolutely no good whatsoever (not to mention the waste of time it is to take Tums), and I have to take at least a half dose if I want to control it. As a result of all the Promethazine usage, my sleep is all over the place. The only thing I can count on sleep-wise is that I never know when I'll go down for me "nightly" sleep. I am however, extremely grateful that I can control the nausea when it gets out of control. Always.
My headaches have had no let-up. Lots of pain every day; and only the T3's keep them under control.
My mid-back over the kidneys continues to be extremely painful. I also have a vertebrae or two out in the same area which adds pain to whatever the cysts on my kidneys are doing. If I can't get them in on my own, I'll go see my chiropractor. I'm just wary of anything pressing on my kidneys right now.
After I awoke a few days ago and placed my feet on the floor then stood up, I knew instantly that i would have a huge increase of edema that day. I can't describe the sensation in my legs other than, my knees down to my feet felt really weird. Sure enough, as the day progressed my feet went from just minor edema to terrible. I had rebound of minutes+, and color return of 10+. One spot I tested on my R foot had an imprint that lasted for nearly 15 minutes. Another place on my L foot had my finger pressing in a good half inch. This edema was really bad.
It gradually reduced over the next couple of days, then it happened again...this time with that sensation in my legs starting mid-thigh on both legs. Once again the edema increased to about the same level. This whole experience is definitely something new. Right now the edema doesn't stay severe though, so I am not yet alarmed. Plus, my kidneys are continuing to aid reduction of the edema with increased rates of urination after the edema has gotten to its worst. So, my body is still able to maintain at least some balance.
The lack of appetite continues, as does my liquid intake. I can barely smell any foods these days, and as I've stated before, most foods taste very, very bland; so I rarely enjoy eating, either. Over the last week I'd estimate my daily intake to be 1.5 cups of food, and around 60 oz of liquids.
After some self examination, I determined that I was struggling mentally way too much. I was doing less and less from day to day, and feeling a bit grumpy and unenthused. So, I decided to do better. I am being cognizant of my body language, aware of my motivation level, and am working daily with increased effort to be happier, a little more active, and more aware of how I am coming across to others. This has helped me immensely this past week; and will continue to get my mind in a better place. It's good that I do these self checks every so often. Otherwise I might end up in a place of darkness and despair that would be terribly difficult to get out of.
That's all for today. I promise that I won't wait another week before writing my next entry.
Have a wonderful day!
Good Health to All!
ScottW
Tuesday, September 6, 2011
06 September 2011
Well, my suspicion proved itself out.
After two more months, and feeling worse than ever, there has been zero movement in my numbers. My kidney function remains at 17.6%. In fact, my doc stated that aside from the dying kidneys thing, I'm "actually a really healthy guy." The way I'm feeling is just a part of the process; and will continue to worsen as the disease slowly does its thing.
Numbers are as follows:
*Iron 79 (NR 35-155)
*Na+ 140 (NR 135-148)
*K+ 4.4 (NR 3.3-5.5)
*Glucose 102 (NR 65-109)
*BUN 40.0 (NR 5-25)
Creatinine 3.9 (NR 0.5-1.5)
*WBC 6.08 (NR 4.5-11.0)
*RBC 4.46 (NR 4.7-6.1)
Hematicrit 34.0 (NR 42-52)
As has previously been, the PCKD remains the sole health issue. I continue to withstand development of associated issues such as diabetes, liver impairment, edema in the heart a/o lungs, etc.
The only good news to come out of today's appointment was that I lost 9 pounds over the last two months. My weight now stands at 243 and dropping. This is in part because of my extremely poor appetite, as well as have almost zero peripheral edema [right now], and because of continued loss of muscle mass due to not being able to work out.
My next appointment [with the nephrologist] is in two months. Unless something happens that accelerates the symptomology, or I see clear signs of an impending crash, I won't have any further official news until then. I will continue blogging, so be sure to stay up to date with everything.
If you have any questions, please write and ask whatever you'd like. I'll always get back to you as soon as I feel up to it. Thank you for all of the prayers, good thoughts, etc. I need it all, and appreciate the efforts far more than I can express.
Good Health to All!
ScottW
After two more months, and feeling worse than ever, there has been zero movement in my numbers. My kidney function remains at 17.6%. In fact, my doc stated that aside from the dying kidneys thing, I'm "actually a really healthy guy." The way I'm feeling is just a part of the process; and will continue to worsen as the disease slowly does its thing.
Numbers are as follows:
*Iron 79 (NR 35-155)
*Na+ 140 (NR 135-148)
*K+ 4.4 (NR 3.3-5.5)
*Glucose 102 (NR 65-109)
*BUN 40.0 (NR 5-25)
Creatinine 3.9 (NR 0.5-1.5)
*WBC 6.08 (NR 4.5-11.0)
*RBC 4.46 (NR 4.7-6.1)
Hematicrit 34.0 (NR 42-52)
As has previously been, the PCKD remains the sole health issue. I continue to withstand development of associated issues such as diabetes, liver impairment, edema in the heart a/o lungs, etc.
The only good news to come out of today's appointment was that I lost 9 pounds over the last two months. My weight now stands at 243 and dropping. This is in part because of my extremely poor appetite, as well as have almost zero peripheral edema [right now], and because of continued loss of muscle mass due to not being able to work out.
My next appointment [with the nephrologist] is in two months. Unless something happens that accelerates the symptomology, or I see clear signs of an impending crash, I won't have any further official news until then. I will continue blogging, so be sure to stay up to date with everything.
If you have any questions, please write and ask whatever you'd like. I'll always get back to you as soon as I feel up to it. Thank you for all of the prayers, good thoughts, etc. I need it all, and appreciate the efforts far more than I can express.
Good Health to All!
ScottW
05 Sept. 2011
Two of the last three days I've had overwhelming nausea in the early morning hours.
Both Friday and Sunday night I was awoken with terrible nausea. In both cases I immediately took a full dose of the Promethazine; and both times had to wait miserably for over an hour before I was comfortable enough to fall back asleep. After what happened earlier in the week, I think it is safe to say that my nausea is consistently worse than ever. However, still no actual emesis; which is in and of itself a mixed blessing...Glad I'm not yacking up, but knowing that if I were, I would be closer to dialysis.
The edema inexplicably continues to be nearly absent. I just don't know what to make of this. With how I'm feeling all the time, I would think the edema would be really bad.
All the rest of my symptomology remains consistent with my last blog entry--which means I've been feeling really bad in just about every way I can.
My next nephrology appointment is tomorrow morning. (I have a sneaking suspicion there won't be much movement in my numbers this time.) I will give you the details as soon as I get home. Until then,
Good Health to All!
ScottW
Both Friday and Sunday night I was awoken with terrible nausea. In both cases I immediately took a full dose of the Promethazine; and both times had to wait miserably for over an hour before I was comfortable enough to fall back asleep. After what happened earlier in the week, I think it is safe to say that my nausea is consistently worse than ever. However, still no actual emesis; which is in and of itself a mixed blessing...Glad I'm not yacking up, but knowing that if I were, I would be closer to dialysis.
The edema inexplicably continues to be nearly absent. I just don't know what to make of this. With how I'm feeling all the time, I would think the edema would be really bad.
All the rest of my symptomology remains consistent with my last blog entry--which means I've been feeling really bad in just about every way I can.
My next nephrology appointment is tomorrow morning. (I have a sneaking suspicion there won't be much movement in my numbers this time.) I will give you the details as soon as I get home. Until then,
Good Health to All!
ScottW
Friday, September 2, 2011
02 Sept. 2011
In the four days since my last entry there has once again been consistent symptomology.
About the only changes have been for the worse. One, the nausea just won't settle down. on Wednesday night/Thursday morning I had an overwhelmingly intense bout of nausea just smack me from nowhere. I took a half dose of the Promethazine, then thirty minutes later took another half dose. I then spent the next forty minutes leaning over the kitchen sink, ready and feeling as if I was going to throw up. After those forty minutes there was no let-up in the nausea, so I laid down in bed. Even then, I waited another fifty+ minutes before the nausea retreated, and I finally fell asleep. To say that this was a particularly nasty emetic episode would be a vast understatement. The only thing that could've made this one any worse would be if I actually threw up. Even with a full dose of Promethazine, it took nearly two hours to calm down. (Shuddering!...)
Two, my back over the kidneys has been extremely painful. The pain is only relieved by T3's. Sitting in my office chair helps relax things, but the pain is only relieved with the pain meds. As before, I still have no obvious *blood in my urine, and zero indication of kidney stones. (*I have continued to have a red tinge to the extreme foam created when I urinate in a toilet.)
My fistula continues to mature. I can now see the path of the super vein up to the crook of my elbow. I am still doing the strengthening exercises every day. When the vein is clearly visible on my arm, I will post a pic here so everyone can see the end result.
My sleep remains poor in its quality, and in my declining ability to control my dreams. About the only time I sleep deeply is when I've got a lot of the anti-emetic in me--like Thursday. I awoke from my sleep at about 1230p, then settled in to watch a three hour broadcast of Australian Rules football (AFL)--a far, far better game than the NFL or college ball--and after one quarter (20 minutes) began getting sleepy. I turned off the TV and promptly fell into a deep, groggy sleep that lasted another 4.5 hours. As usual, when i awoke my brain was foggy, and I stumbled around a lot...but hey! The nausea was gone for a little! Woo-Hoo!
My appetite is still terrible. I rarely snack anymore, and my liquid intake remains poor, as well. When I do eat, it is usually around a cup of food in total; and that is only once per day. I am having more and more difficulty deciding on something to eat. Most foods are tasting extremely bland, and my appetite is shut down by anything that might be considered a little off-putting such as coming across an artery in a chicken breast. Plus, I can't smell most foods now [because of the ammonia]; so I very rarely have my appetite stimulated by food smells that are obvious to everyone else.
I had my blood drawn today for Tuesday's nephrology appointment. The labs done today are for Iron, Renal Panel, and CBC. My blood appeared to me to be darker than normal, and cloudy. As always, I'll fill you in with the results after the appointment.
That's all for now. I'll likely do an entry on Monday so that on Tuesday I can only talk about the results of my Doctor visit.
Have a fun, but safe Labor Day weekend. I wish I was going out and about!
Good Health to All!
ScottW
About the only changes have been for the worse. One, the nausea just won't settle down. on Wednesday night/Thursday morning I had an overwhelmingly intense bout of nausea just smack me from nowhere. I took a half dose of the Promethazine, then thirty minutes later took another half dose. I then spent the next forty minutes leaning over the kitchen sink, ready and feeling as if I was going to throw up. After those forty minutes there was no let-up in the nausea, so I laid down in bed. Even then, I waited another fifty+ minutes before the nausea retreated, and I finally fell asleep. To say that this was a particularly nasty emetic episode would be a vast understatement. The only thing that could've made this one any worse would be if I actually threw up. Even with a full dose of Promethazine, it took nearly two hours to calm down. (Shuddering!...)
Two, my back over the kidneys has been extremely painful. The pain is only relieved by T3's. Sitting in my office chair helps relax things, but the pain is only relieved with the pain meds. As before, I still have no obvious *blood in my urine, and zero indication of kidney stones. (*I have continued to have a red tinge to the extreme foam created when I urinate in a toilet.)
My fistula continues to mature. I can now see the path of the super vein up to the crook of my elbow. I am still doing the strengthening exercises every day. When the vein is clearly visible on my arm, I will post a pic here so everyone can see the end result.
My sleep remains poor in its quality, and in my declining ability to control my dreams. About the only time I sleep deeply is when I've got a lot of the anti-emetic in me--like Thursday. I awoke from my sleep at about 1230p, then settled in to watch a three hour broadcast of Australian Rules football (AFL)--a far, far better game than the NFL or college ball--and after one quarter (20 minutes) began getting sleepy. I turned off the TV and promptly fell into a deep, groggy sleep that lasted another 4.5 hours. As usual, when i awoke my brain was foggy, and I stumbled around a lot...but hey! The nausea was gone for a little! Woo-Hoo!
My appetite is still terrible. I rarely snack anymore, and my liquid intake remains poor, as well. When I do eat, it is usually around a cup of food in total; and that is only once per day. I am having more and more difficulty deciding on something to eat. Most foods are tasting extremely bland, and my appetite is shut down by anything that might be considered a little off-putting such as coming across an artery in a chicken breast. Plus, I can't smell most foods now [because of the ammonia]; so I very rarely have my appetite stimulated by food smells that are obvious to everyone else.
I had my blood drawn today for Tuesday's nephrology appointment. The labs done today are for Iron, Renal Panel, and CBC. My blood appeared to me to be darker than normal, and cloudy. As always, I'll fill you in with the results after the appointment.
That's all for now. I'll likely do an entry on Monday so that on Tuesday I can only talk about the results of my Doctor visit.
Have a fun, but safe Labor Day weekend. I wish I was going out and about!
Good Health to All!
ScottW
Monday, August 29, 2011
29 August 2011
Three more days without improvement.
Friday, Saturday and Sunday were pretty much the same as the previous days. About the only difference was that the edema was reduced by about 50%. I've noticed this pattern before wherein I have worsening symptomology, yet the edema inexplicably reduces. I would expect the opposite to be happening; but maybe this is just my body doing this. I have absolutely no idea if other advanced PCKD patients experience anything similar.
The headache has been terrible. I finally decided to start taking two T3's when my I need--rather than taking one, waiting to see if another is needed, then taking the second--and it has helped tremendously. I am able to have greater control of my headaches.
My nausea has been plain terrible. This morning I awoke with intense nausea and took a half dose of Promethazine before doing anything else. I laid back down, and eventually fell back asleep; but not before being completely miserable for around 45 minutes before it took effect. I then fell back asleep for another five hours; awaking with reduced nausea, but lots of grogginess...which was no surprise.
No other changes or surprises. All in all, things continue downhill as I need them to. I'll be going to do my lab work blood draws later this week in advance of next Tuesday's nephrology appointment.
Good Health to All!
ScottW
Friday, Saturday and Sunday were pretty much the same as the previous days. About the only difference was that the edema was reduced by about 50%. I've noticed this pattern before wherein I have worsening symptomology, yet the edema inexplicably reduces. I would expect the opposite to be happening; but maybe this is just my body doing this. I have absolutely no idea if other advanced PCKD patients experience anything similar.
The headache has been terrible. I finally decided to start taking two T3's when my I need--rather than taking one, waiting to see if another is needed, then taking the second--and it has helped tremendously. I am able to have greater control of my headaches.
My nausea has been plain terrible. This morning I awoke with intense nausea and took a half dose of Promethazine before doing anything else. I laid back down, and eventually fell back asleep; but not before being completely miserable for around 45 minutes before it took effect. I then fell back asleep for another five hours; awaking with reduced nausea, but lots of grogginess...which was no surprise.
No other changes or surprises. All in all, things continue downhill as I need them to. I'll be going to do my lab work blood draws later this week in advance of next Tuesday's nephrology appointment.
Good Health to All!
ScottW
Friday, August 26, 2011
26 August 2011
It's only been five days since my last entry...but it sure seems longer.
There has been no break in the symptomology since then; only a slight, sustained increase in the nausea. In fact, I just took a second small dose of Promethazine after the first small dose did nothing to alleviate my nausea. If it puts me to sleep then so be it. I just know that I can't take much more of this nausea today.
My appetite continues to be way down. Over the last three days I've eaten a total of approx. 2.5 cups of food. Even my liquid intake is substantially less. I 'm taking in an average of less than half a gallon of liquids per day. Water is unappealing, as is milk, etc. I'm now drinking liquids only because my body needs them, or to take my meds.
My sleep pattern is about the same as last time...nightly sleep plus four hours or so in the afternoon. This continues to have zero effect on the overall fatigue and exhaustion that I feel every day. It is incredibly frustrating to awaken day after day with my batteries drained and my body dragging. I realized the other day that the only time I have any energy is when I dream, and my mind is free from my physical body. Never in my life have I even imagined that I would be in this position. While there isn't much I can do about the physical, I still control the mental side of this. That is the crucial fight; and is what I work at constantly day after day. I have to...I must if I am to emerge on the other side with positivity, strength, goals and hope.
That's all for today. (I'm actually finishing this up hours after I started it because of the nausea I had earlier.) My head is killing me, the nausea is just barely controlled, and I feel awful.
As always, I will hope for better days ahead.
Good Health to All!
ScottW
There has been no break in the symptomology since then; only a slight, sustained increase in the nausea. In fact, I just took a second small dose of Promethazine after the first small dose did nothing to alleviate my nausea. If it puts me to sleep then so be it. I just know that I can't take much more of this nausea today.
My appetite continues to be way down. Over the last three days I've eaten a total of approx. 2.5 cups of food. Even my liquid intake is substantially less. I 'm taking in an average of less than half a gallon of liquids per day. Water is unappealing, as is milk, etc. I'm now drinking liquids only because my body needs them, or to take my meds.
My sleep pattern is about the same as last time...nightly sleep plus four hours or so in the afternoon. This continues to have zero effect on the overall fatigue and exhaustion that I feel every day. It is incredibly frustrating to awaken day after day with my batteries drained and my body dragging. I realized the other day that the only time I have any energy is when I dream, and my mind is free from my physical body. Never in my life have I even imagined that I would be in this position. While there isn't much I can do about the physical, I still control the mental side of this. That is the crucial fight; and is what I work at constantly day after day. I have to...I must if I am to emerge on the other side with positivity, strength, goals and hope.
That's all for today. (I'm actually finishing this up hours after I started it because of the nausea I had earlier.) My head is killing me, the nausea is just barely controlled, and I feel awful.
As always, I will hope for better days ahead.
Good Health to All!
ScottW
Saturday, August 20, 2011
20 August 2011
(*Yay! I've gotten online, so let's make this quick!)
The last three days have been the same...bad.
My energy is way down. My eating has been OK...I just have no physical energy.
The headache is nearly out of my control. Though I'm still trying to limit my T3 usage to 4x/day, I may soon have to abandon that and increase it to the level noted on the Rx. As my wife tells me, "It's better to be comfortable rather than in pain."
That ill feeling I can't describe seems to be increasing. I'm positive this adds to the exhaustion I feel. I guess you might say that my body is finally telling me--quite loudly--that it is really sick. I thought that the symptomology up to now has been bad. I was wrong. Yes, what I've gone through up to this point has indeed been bad. Now, I feel like I'm going from bad to worse...with ever-increasing worse still to come.
With all of this happening, I find the mental fight now more vital than ever before. I consciously, deliberately place a positive thought in my mind as soon as I awaken. I think only of positive things. Holding off despair and discouragement has become absolutely imperative. So long as I do this, my mind will stay strong; warding off the negativity that would so easily destroy my ability to fight this disease and send me into depression. I promise you right now going to that dark place will never happen!
Anyhow, that's my entry today. Short, and to the point.
Good Health to all!
ScottW
The last three days have been the same...bad.
My energy is way down. My eating has been OK...I just have no physical energy.
The headache is nearly out of my control. Though I'm still trying to limit my T3 usage to 4x/day, I may soon have to abandon that and increase it to the level noted on the Rx. As my wife tells me, "It's better to be comfortable rather than in pain."
That ill feeling I can't describe seems to be increasing. I'm positive this adds to the exhaustion I feel. I guess you might say that my body is finally telling me--quite loudly--that it is really sick. I thought that the symptomology up to now has been bad. I was wrong. Yes, what I've gone through up to this point has indeed been bad. Now, I feel like I'm going from bad to worse...with ever-increasing worse still to come.
With all of this happening, I find the mental fight now more vital than ever before. I consciously, deliberately place a positive thought in my mind as soon as I awaken. I think only of positive things. Holding off despair and discouragement has become absolutely imperative. So long as I do this, my mind will stay strong; warding off the negativity that would so easily destroy my ability to fight this disease and send me into depression. I promise you right now going to that dark place will never happen!
Anyhow, that's my entry today. Short, and to the point.
Good Health to all!
ScottW
Wednesday, August 17, 2011
17 August 2011
It's been twelve days since my last update--quite a long time. I continue to have internet connection issues, plus, I've been feeling so lousy that I haven't even wanted to try and solve the internet thing. Let's get started before my connection issues arise again...
(I won't go into specific days, since that would require me to remember things that I've already forgotten. So, we'll just talk in overall terms for todays blog.)
Overall....Lousy. Yuck! Lots of nausea (and Promethazine) just about every day, all day. When I'm not nauseated I just don't feel well. I've been trying to describe it; but have failed to put it into words. 'I just don't feel well.' That's the only description I've come up with.
The vertigo has been almost constant. Even sitting in a chair has been no relief. I'm still mobile inspite of the vertigo; but it is awfully difficult to do anything. As before, using my cane outside the house has increasingly saved me from ground-level falls. Additionally, the vertigo adds to the nausea and ups that level as well. Woo-Hoo!
My headache has been terrible. Though I've actually had a few moments when I've realized the pain isn't too bad, this usually followed shortly with sudden increases in pain to the severe level. I've been using my TMD occlusive devices to continue minimizing any TMD involvement; but to absolutely no avail on the level and intensity of the headaches. On last count, my T3 usage has elevated to 4.16/day. Even at that level of use, I am tolerating a lot of headache pain--I just don't want to be using any more.
My breath, according to others, is increasingly smelling like urine. It's not an obvious odor...yet; but people are noticing. Those closest to me understand I can't do much about it beyond breath mints, so they never say anything that would make me feel bad...which I appreciate immensely.
The edema in my legs and arms is doing its up and down thing. No pattern to its increases. I suppose it's a good thing at this point that the edema isn't constant and severe as this would be a strong indication of organ failure.
I was looking in the mirror the other day and noticed for the first time (I think) that my face is looking thin, and my overall appearance finally reflects how sick I am. I told my wife about this and she agreed with my assessment.
As before, my vision gets better or worse, depending on how I'm feeling. I'm using my reading glasses a lot these days, but they're not always helping any more. I realize that my age dictates a certain decrease in vision; but it's the getting better and worse thing that is odd. I still personally believe that this is somehow tied in with the increasing symptomology of the PCKD.
My sleep is almost always restless these days. My dreams are almost uncontrollable now as my subconscious sorts everything. I do have dreams that are still 100% controlled; but these are becoming the exception instead of the norm. I awaken every day feeling as if I haven't gotten any sleep. Whether I've had six, four or even seven hours of sleep, I'm always exhausted now. Plus, over the last seven or eight days I've had a three+ hour nap every day. These have come on anywhere from a few hours after awaking, to several. There's no pattern to the naps; they just happen. And of course, I awaken from these also feeling as exhausted as when I went to sleep.
My food intake has been poor, to put it mildly. I've averaging about one cup of food per day. I actually had two days last week that I didn't eat anything. No snacks, either. I simply wasn't hungry. I know a part of these two days was because of how intensely unwell I was feeling.
My urine continues to be foamy, cloudy and odoriferous. The decrease in frequency and overall output remains. Additionally, I've noticed a number of times that the foaminess had a red tint to it, as if blood were in the urine, but not yet blatantly visible. I have still had no apparent evidence of kidney stones--thank goodness! There's no pain on urination; no blockages of the urinary flow, etc.
I think that's about all. Overall, I'm feeling increasingly worse as each week passes. I've got my next nephrology appointment coming up in early September.
I'll hopefully have my internet connection problems solved before long. Thanks for bearing with me through whatever is going on with that.
Good Health to All!
ScottW
(I won't go into specific days, since that would require me to remember things that I've already forgotten. So, we'll just talk in overall terms for todays blog.)
Overall....Lousy. Yuck! Lots of nausea (and Promethazine) just about every day, all day. When I'm not nauseated I just don't feel well. I've been trying to describe it; but have failed to put it into words. 'I just don't feel well.' That's the only description I've come up with.
The vertigo has been almost constant. Even sitting in a chair has been no relief. I'm still mobile inspite of the vertigo; but it is awfully difficult to do anything. As before, using my cane outside the house has increasingly saved me from ground-level falls. Additionally, the vertigo adds to the nausea and ups that level as well. Woo-Hoo!
My headache has been terrible. Though I've actually had a few moments when I've realized the pain isn't too bad, this usually followed shortly with sudden increases in pain to the severe level. I've been using my TMD occlusive devices to continue minimizing any TMD involvement; but to absolutely no avail on the level and intensity of the headaches. On last count, my T3 usage has elevated to 4.16/day. Even at that level of use, I am tolerating a lot of headache pain--I just don't want to be using any more.
My breath, according to others, is increasingly smelling like urine. It's not an obvious odor...yet; but people are noticing. Those closest to me understand I can't do much about it beyond breath mints, so they never say anything that would make me feel bad...which I appreciate immensely.
The edema in my legs and arms is doing its up and down thing. No pattern to its increases. I suppose it's a good thing at this point that the edema isn't constant and severe as this would be a strong indication of organ failure.
I was looking in the mirror the other day and noticed for the first time (I think) that my face is looking thin, and my overall appearance finally reflects how sick I am. I told my wife about this and she agreed with my assessment.
As before, my vision gets better or worse, depending on how I'm feeling. I'm using my reading glasses a lot these days, but they're not always helping any more. I realize that my age dictates a certain decrease in vision; but it's the getting better and worse thing that is odd. I still personally believe that this is somehow tied in with the increasing symptomology of the PCKD.
My sleep is almost always restless these days. My dreams are almost uncontrollable now as my subconscious sorts everything. I do have dreams that are still 100% controlled; but these are becoming the exception instead of the norm. I awaken every day feeling as if I haven't gotten any sleep. Whether I've had six, four or even seven hours of sleep, I'm always exhausted now. Plus, over the last seven or eight days I've had a three+ hour nap every day. These have come on anywhere from a few hours after awaking, to several. There's no pattern to the naps; they just happen. And of course, I awaken from these also feeling as exhausted as when I went to sleep.
My food intake has been poor, to put it mildly. I've averaging about one cup of food per day. I actually had two days last week that I didn't eat anything. No snacks, either. I simply wasn't hungry. I know a part of these two days was because of how intensely unwell I was feeling.
My urine continues to be foamy, cloudy and odoriferous. The decrease in frequency and overall output remains. Additionally, I've noticed a number of times that the foaminess had a red tint to it, as if blood were in the urine, but not yet blatantly visible. I have still had no apparent evidence of kidney stones--thank goodness! There's no pain on urination; no blockages of the urinary flow, etc.
I think that's about all. Overall, I'm feeling increasingly worse as each week passes. I've got my next nephrology appointment coming up in early September.
I'll hopefully have my internet connection problems solved before long. Thanks for bearing with me through whatever is going on with that.
Good Health to All!
ScottW
Friday, August 5, 2011
05 Aug. 2011
I know it's been a while since my last entry. This is partly due to having issues with internet access. The other part is because I've been feeling horrid most of this last while.
My worst day was this past Tuesday (02 Aug.). I awoke feeling extremely nauseated, and my head was raging. The first thing I did was take a half dose of Promethazine. This failed to alleviate the nausea, and I ended up taking a small dose (1/4) about an hour later, then another small dose about two hours after that. I never did feel better than mildly nauseated. In the mean time I had to address my headache; which was at a solid 10.
I started out with two T3's. This barely touched the pain. After three hours I couldn't take it anymore and took a third T3. This got the headache to back off to a manageable 9. For the remainder of the day I had at least two T3's in me at all times.
In addition to these two nasty things, I had zero energy. My whole body felt as if I had been awake for days. I couldn't eat; I barely drank anything--not that I wanted to have either anyway because of the nausea. Plus, my urine was very cloudy and strongly odoriferous.
To tell you I was miserable would be understating things by a vast margin. Eeew!
Sine Tuesday my headache has not diminished. I've even used my TMD occlusive devices just to eliminate TMD complications; which didn't help at all.
As to good news, my appetite is back a little. On Wednesday I ate all of about 3/4 cup of food; then about 1.5 cups on Thursday. Today was about the same as Thursday. So that is good news at least. Also, the nausea has retreated to its normal incidences. I have no idea why the sudden increase; I'm just glad it's over.
My fistula is getting stronger. I can now feel its pulsations along the length of my arm, and can accurately follow the vein to the crook of my elbow. On the annoying side, I can feel the pulsing in my palm, in my bicep, and can feel it anytime the fistula is resting against my torso, in my chest! It's so annoying. Further, if I have my left arm under my pillow at night, I can hear the Thrill of the pulsations through the pillow. It's really quite loud, actually! Oh well. C'est La Vie. I'd rather have it than not.
The other days not covered above have been a bit worse than my norm. I don't know what's going on. Just progression of the disease I suppose. I'll know in another month how things are going. Because I'm on one of those plateaus (before heading down again), my nephrologist is waiting two months between last visit and next. So, unless something dramatic happens, I won't be seeing him until early September.
That's all. My head is killing me...again. So I'll be on my way.
Good Health to All!
ScottW
My worst day was this past Tuesday (02 Aug.). I awoke feeling extremely nauseated, and my head was raging. The first thing I did was take a half dose of Promethazine. This failed to alleviate the nausea, and I ended up taking a small dose (1/4) about an hour later, then another small dose about two hours after that. I never did feel better than mildly nauseated. In the mean time I had to address my headache; which was at a solid 10.
I started out with two T3's. This barely touched the pain. After three hours I couldn't take it anymore and took a third T3. This got the headache to back off to a manageable 9. For the remainder of the day I had at least two T3's in me at all times.
In addition to these two nasty things, I had zero energy. My whole body felt as if I had been awake for days. I couldn't eat; I barely drank anything--not that I wanted to have either anyway because of the nausea. Plus, my urine was very cloudy and strongly odoriferous.
To tell you I was miserable would be understating things by a vast margin. Eeew!
Sine Tuesday my headache has not diminished. I've even used my TMD occlusive devices just to eliminate TMD complications; which didn't help at all.
As to good news, my appetite is back a little. On Wednesday I ate all of about 3/4 cup of food; then about 1.5 cups on Thursday. Today was about the same as Thursday. So that is good news at least. Also, the nausea has retreated to its normal incidences. I have no idea why the sudden increase; I'm just glad it's over.
My fistula is getting stronger. I can now feel its pulsations along the length of my arm, and can accurately follow the vein to the crook of my elbow. On the annoying side, I can feel the pulsing in my palm, in my bicep, and can feel it anytime the fistula is resting against my torso, in my chest! It's so annoying. Further, if I have my left arm under my pillow at night, I can hear the Thrill of the pulsations through the pillow. It's really quite loud, actually! Oh well. C'est La Vie. I'd rather have it than not.
The other days not covered above have been a bit worse than my norm. I don't know what's going on. Just progression of the disease I suppose. I'll know in another month how things are going. Because I'm on one of those plateaus (before heading down again), my nephrologist is waiting two months between last visit and next. So, unless something dramatic happens, I won't be seeing him until early September.
That's all. My head is killing me...again. So I'll be on my way.
Good Health to All!
ScottW
Wednesday, July 27, 2011
27 July 2011
Up and down since my last entry on Sunday.
I finished off Sunday feeling as lousy as I had been all day. On awaking Monday I was feeling a bit better, and the edema in my legs had reduced around 50%. Of course, the headache was untouched; but at least I felt a little better overall. This continued throughout the day.
Tuesday I awoke feeling even better than I had on Monday. My feet looked like feet again, the nausea was minimal, and I actually felt OK. So my day went well; and it was highlighted by a magnificent thundershower that dumped around 1.5 inches of rain. I love the smell of rain and of lightning. I stood on our deck just listening to the storm, taking in the smells and the sounds. It was a good day.
That all changed however, when I was awoken at 420a with intense nausea. I took a full dose of the Promethazine and had my usual grueling 25 minute wait for it (the anti-emetic) to kick in. Plus, I had a ton of vertigo happening, which certainly didn't help my stomach. Once the med kicked in, I experienced a slow reduction of nausea, and a slow retreat from the vertigo; and I was finally able to sleep about an hour after I first awoke.
Because of the Promethazine, I slept until 115p...at least I got plenty of sleep.
So far today I feel alright. My head hurts...a lot. The nausea is gone, but I feel as if it is just waiting to burst out again. Of course I am groggy as well because of the anti-emetic; but at least I don't feel like I did early this morning!
That's all for now. Let's hope I have a better few days upcoming.
Good Health to All!
ScottW
I finished off Sunday feeling as lousy as I had been all day. On awaking Monday I was feeling a bit better, and the edema in my legs had reduced around 50%. Of course, the headache was untouched; but at least I felt a little better overall. This continued throughout the day.
Tuesday I awoke feeling even better than I had on Monday. My feet looked like feet again, the nausea was minimal, and I actually felt OK. So my day went well; and it was highlighted by a magnificent thundershower that dumped around 1.5 inches of rain. I love the smell of rain and of lightning. I stood on our deck just listening to the storm, taking in the smells and the sounds. It was a good day.
That all changed however, when I was awoken at 420a with intense nausea. I took a full dose of the Promethazine and had my usual grueling 25 minute wait for it (the anti-emetic) to kick in. Plus, I had a ton of vertigo happening, which certainly didn't help my stomach. Once the med kicked in, I experienced a slow reduction of nausea, and a slow retreat from the vertigo; and I was finally able to sleep about an hour after I first awoke.
Because of the Promethazine, I slept until 115p...at least I got plenty of sleep.
So far today I feel alright. My head hurts...a lot. The nausea is gone, but I feel as if it is just waiting to burst out again. Of course I am groggy as well because of the anti-emetic; but at least I don't feel like I did early this morning!
That's all for now. Let's hope I have a better few days upcoming.
Good Health to All!
ScottW
Sunday, July 24, 2011
24 July 2011
It's been a lousy few days.
Since my last entry [on the 19th], my nausea has increased and stayed there. Then last night it elevated again and has yet to decrease. I feel awful today, and I need to put on a smiling face for the celebrations of my son's 25th birthday; as well as playing with grand kids, of course. (I literally just now found out that there'll be a houseful of people coming in 2.5 hours...yay...)
My headache has been just barely under control. T3 use has increased to over four per day. One at a time hasn't been getting past the breakthrough headache. Just nasty. Luckily, taking one followed by another an hour later seems to keep things [barely] under control for about the normal 6-7 hours.
My appetite remains poor. Plus, any hunger pangs I get are rapidly turned into nauseous waves that really hammer my stomach. As a result, I am continuing to take Promethazine more frequently than I'd like to. (At least I've got the anti-emetic. Otherwise, life would be no fun!)
My sleep has been poor. I've been getting solid sleep, but I can't seem to get more than six hours per night. Yes, I continue to take the long naps; but that hasn't been an issue with my nightly sleep length up until this past week or so.
Edema is continuing to be bad in my legs, and is nearly constant in my arms and hands now. The last few days my feet have looked as if they belong on a Hobbit instead of me. Rebound time in my feet has averaged +15, and I can usually press in a dimple of around 1/3 inch deep. Color return has been at least +3. As I reported before, elevating my legs actually hurts my calves due to (I believe) edemic pressure. I still elevate my legs, but for briefer periods of time.
The vertigo continues. Any optical over-stimulation triggers it without warning. I still awaken occasionally to the room spinning wildly, and closing my eyes only intensifies the sensation. I still use--and rely on--the cane to keep me vertical anytime I'm away from the house. Additionally, lots of vertigo also triggers additional nausea (on top of what I already have). Weeeee!
Remember the problem I was having [because of all my meds] with flaking skin on my face? Well, after taking my docs advice on a solution, I am happy to report as a follow-up that the flaking seems to be completely gone. I last reported it as being under control; but now, weeks later, I see no evidence of the flaking. I figure so long as I continue the same regimen and product, that it will remain controlled.
That's all I can think of for today. I'm going to go lie down and rest awhile before the festivities begin.
Good Health to All!
ScottW
Since my last entry [on the 19th], my nausea has increased and stayed there. Then last night it elevated again and has yet to decrease. I feel awful today, and I need to put on a smiling face for the celebrations of my son's 25th birthday; as well as playing with grand kids, of course. (I literally just now found out that there'll be a houseful of people coming in 2.5 hours...yay...)
My headache has been just barely under control. T3 use has increased to over four per day. One at a time hasn't been getting past the breakthrough headache. Just nasty. Luckily, taking one followed by another an hour later seems to keep things [barely] under control for about the normal 6-7 hours.
My appetite remains poor. Plus, any hunger pangs I get are rapidly turned into nauseous waves that really hammer my stomach. As a result, I am continuing to take Promethazine more frequently than I'd like to. (At least I've got the anti-emetic. Otherwise, life would be no fun!)
My sleep has been poor. I've been getting solid sleep, but I can't seem to get more than six hours per night. Yes, I continue to take the long naps; but that hasn't been an issue with my nightly sleep length up until this past week or so.
Edema is continuing to be bad in my legs, and is nearly constant in my arms and hands now. The last few days my feet have looked as if they belong on a Hobbit instead of me. Rebound time in my feet has averaged +15, and I can usually press in a dimple of around 1/3 inch deep. Color return has been at least +3. As I reported before, elevating my legs actually hurts my calves due to (I believe) edemic pressure. I still elevate my legs, but for briefer periods of time.
The vertigo continues. Any optical over-stimulation triggers it without warning. I still awaken occasionally to the room spinning wildly, and closing my eyes only intensifies the sensation. I still use--and rely on--the cane to keep me vertical anytime I'm away from the house. Additionally, lots of vertigo also triggers additional nausea (on top of what I already have). Weeeee!
Remember the problem I was having [because of all my meds] with flaking skin on my face? Well, after taking my docs advice on a solution, I am happy to report as a follow-up that the flaking seems to be completely gone. I last reported it as being under control; but now, weeks later, I see no evidence of the flaking. I figure so long as I continue the same regimen and product, that it will remain controlled.
That's all I can think of for today. I'm going to go lie down and rest awhile before the festivities begin.
Good Health to All!
ScottW
Tuesday, July 19, 2011
19 July 2011
I haven't done an entry in eight days due to a visit from out of town relatives; and my office was turned into a bedroom. So, I'll just do a summation since I don't remember a lot of specifics...
Things have been up and down. I'll do OK, then go downhill for a few days, and so forth.
The nausea has been consistent. I've been taking regular small doses of the Promethazine just to stay on top of the ill feeling. Though the small doses don't take the nausea away, at least I'm not sleeping hours a day [because of taking full doses of the anti-emetic], and feeling groggy the rest of the time.
My headache has gone up...again...from a solid 9 to a steady 9.5. Once again T3's are barely keeping it in check. I've also been having an increase in the sudden sharp pains [along with this latest increase]. As far as I'm aware I am not doing a thing to precipitate these pains.
The edema in my legs has been constant and elevated. It is clearly visible to others, and it has been noticed in my hands again. As has been the pattern, the edema seems to be worse on the R side.
Ammonia on my breath has been extremely evident to myself and others. I've had a number of days that is is so intense that I'm constantly waving my hand in front of my face just to try (unsuccessfully) to keep it away from my nose.
My appetite has been as bad a ever. I'm still getting my one meal per day; but the amount is never consistent. The same goes for the snacks I try to eat from day to day.
I try to drink a full glass of water every morning. I don't always get it down, but at least I'm taking in clean, clear water on a daily basis.
As usual, my eyesight gets better and worse--depending on how I'm feeling from day to day.
That's all I can think of. I'll continue to keep you updated.
Good Health to All!
ScottW
Things have been up and down. I'll do OK, then go downhill for a few days, and so forth.
The nausea has been consistent. I've been taking regular small doses of the Promethazine just to stay on top of the ill feeling. Though the small doses don't take the nausea away, at least I'm not sleeping hours a day [because of taking full doses of the anti-emetic], and feeling groggy the rest of the time.
My headache has gone up...again...from a solid 9 to a steady 9.5. Once again T3's are barely keeping it in check. I've also been having an increase in the sudden sharp pains [along with this latest increase]. As far as I'm aware I am not doing a thing to precipitate these pains.
The edema in my legs has been constant and elevated. It is clearly visible to others, and it has been noticed in my hands again. As has been the pattern, the edema seems to be worse on the R side.
Ammonia on my breath has been extremely evident to myself and others. I've had a number of days that is is so intense that I'm constantly waving my hand in front of my face just to try (unsuccessfully) to keep it away from my nose.
My appetite has been as bad a ever. I'm still getting my one meal per day; but the amount is never consistent. The same goes for the snacks I try to eat from day to day.
I try to drink a full glass of water every morning. I don't always get it down, but at least I'm taking in clean, clear water on a daily basis.
As usual, my eyesight gets better and worse--depending on how I'm feeling from day to day.
That's all I can think of. I'll continue to keep you updated.
Good Health to All!
ScottW
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