A string of my worst days yet.
Aside from momentary lapses of being merely OK, the last week has been just awful. I have found little to be positive about in regards to my health as I have begun feeling increasingly sicker every day.
Let's start with my headache. On average, my headache has been ranging between 9-10 every day. There is no reason that I know of for the uptick. It just hurts...a lot! The T3's are only masking the pain at this point; and only barely just at that.
Next, let me talk about feeling lousy. I alluded in the last update or so about feeling just crappy all the time. This isn't about nausea; it's about feeling as if my whole body is breaking down--which it basically is. Nausea is only a small part of it. I've explained before it's like having the flu, without the temp rise. The body aches are severe; the nausea is non-stop; the lousy feeling in my abdomen is growing stronger and is nearly non-stop; etc, etc. Every day seems to be getting worse than the day before. I am miserable...to put it mildly.
My sleep, because of everything listed above, has been ridiculously poor the last week. I'm averaging about five hours of extremely restless sleep per night. I do take naps during the day; but I awaken feeling just as crappy as when I went to sleep.
My energy is depleting more and more. Even simple tasks have become far more difficult. I've even found that writing letters, my blogs, and even surfing the Internet have all become extremely tiresome. I can mentally push through this most of the time; but even doing that is getting harder.
The ammonia smell and taste have also been worsening. Even small exhalations bring intense odor. I know it's becoming even more evident to others as well. The other day I was talking with my daughter about her now completed college graduation when she interrupted me stating, "Gee dad, that ammonia on your breath is just nasty!" (Tell me about it!) Everyone I'm around is too polite to say anything; but it is definitely getting worse.
The nausea has grown in both intensity and duration. I have been taking a lot of Promethazine once again; seemingly to no avail. At least I'm not throwing up--just feeling like it...a lot.
At my daughter's graduation celebrations yesterday I was told by a friend whom I hadn't seen in a while "You're really looking sick now. I can see it around your eyes, and across your face. And when you smile it's easy to see there isn't much behind it." That's certainly to be expected when you've got organ failure occurring.
That's it. I'm too tired to write much more; and I can't remember whatever else it was I was going to tell you. I'll try to write my blog more so that I have a better accounting of my day to day. Doing so will only be possible if I'm feeling up to it.
...Oh! I remember one thing that's actually positive...My AV Fistula is strengthening nicely. The Thrill is growing stronger to the touch, and the sound is also growing louder and stronger [through my stethoscope].
So, great news on that front!
Keep Smiling, Everyone! And remember to always carry a positive thought in your mind to give you strength and hope!
Good Health to All!
ScottW
Saturday, April 30, 2011
Tuesday, April 26, 2011
The Transplant Experience Newsletter 26 April 2011
*The following is the latest newsletter from The Transplant Experience, a division of Astellas Pharmaceuticals.
Building A Transplant Financial Plan
The medical costs associated with the transplant procedure—as well as any pre-operative evaluations—can add up quickly. Key to preparing for transplant is understanding the costs and building a financial strategy that ensures access to the healthcare you need.
1. Consider all medical costs
Probably the largest medical expense you will face as a new transplant recipient is post-operative monitoring in the intensive care unit (ICU). Other costs for medical care include the following1:
• Transplant evaluation and follow-up care
• Insurance deductibles and co-payments
• Travel, food, and lodging while at the transplant center
• Costs of a person to accompany you
2. Seek financial guidance
It is important to remember that the success of any transplant financial plan rests in knowing where to turn for help. Your transplant team, in addition to offering resources and emotional guidance, can provide this much-needed direction.
As you begin planning for your transplant, your transplant social worker can be your partner in helping you figure out where you stand financially. Then, together, you can set monetary goals and sort through administrative requirements.1
To map out the specifics of your plan, you can look to your transplant financial coordinator to guide you in using patient assistance programs and reimbursement services, understanding the hospital/insurance billing process, and developing solutions to your financial issues.1
3. Communicate with your team
Even with good financial standing, you may need a combination of funding sources to finance your transplant.1 For this reason, it's particularly important that you keep your transplant team informed about progress in meeting your financial planning goals—so, together, you can work to ensure a successful journey ahead.
*You can subscribe to The Transplant Experience newsletter by writing Astellas Pharmaceuticals at http://www.transplantexperience.com/ Look for registration information.
Building A Transplant Financial Plan
The medical costs associated with the transplant procedure—as well as any pre-operative evaluations—can add up quickly. Key to preparing for transplant is understanding the costs and building a financial strategy that ensures access to the healthcare you need.
1. Consider all medical costs
Probably the largest medical expense you will face as a new transplant recipient is post-operative monitoring in the intensive care unit (ICU). Other costs for medical care include the following1:
• Transplant evaluation and follow-up care
• Insurance deductibles and co-payments
• Travel, food, and lodging while at the transplant center
• Costs of a person to accompany you
2. Seek financial guidance
It is important to remember that the success of any transplant financial plan rests in knowing where to turn for help. Your transplant team, in addition to offering resources and emotional guidance, can provide this much-needed direction.
As you begin planning for your transplant, your transplant social worker can be your partner in helping you figure out where you stand financially. Then, together, you can set monetary goals and sort through administrative requirements.1
To map out the specifics of your plan, you can look to your transplant financial coordinator to guide you in using patient assistance programs and reimbursement services, understanding the hospital/insurance billing process, and developing solutions to your financial issues.1
3. Communicate with your team
Even with good financial standing, you may need a combination of funding sources to finance your transplant.1 For this reason, it's particularly important that you keep your transplant team informed about progress in meeting your financial planning goals—so, together, you can work to ensure a successful journey ahead.
*You can subscribe to The Transplant Experience newsletter by writing Astellas Pharmaceuticals at http://www.transplantexperience.com/ Look for registration information.
Monday, April 25, 2011
25 April 2011
Well...
Here's the latest...
First, everything remains strictly about the PCKD. There are NO diabetes, hepatic disease, cardiopulmonary issues, etc. I continue to be very fortunate that such is the case!
Numbers...
*PTH 96.1 (NR 22.2-108.9) Down from 108.0 in Feb.
*K+ 4.4 (NR 3.5-5.5) Unch.
*Glucose 98 (NR 65-109) Down from 101
*BUN 39.0 (NR 5-26) Down from 44.0
*Creatinine 3.9 (NR 0.5-1.5) Up from 3.8
*Calcium 10.1 (NR 8.5-10.6) Up from 9.9
*WBC's 5.08 (NR 4.5-11.0) Down from 5.66
*RBC's 3.95 (NR 4.7-6.1) Down from 4.23
*Hematocrit 32.2 (NR 42-52) Down from 35.0
*Eosonophils 6.9 (NR 0-3) Up from 6.5
(Blue numbers are good/Red Numbers are bad)
*GFR (Glomelular Filtration Rate) 17.6% Down 0.6%
(The GFR reflects the total function of my kidneys.)
So, a 0.6% drop in thirty days. If I continue that rate, I'll be on dialysis in just over four months. (*15% function is the target for the start of dialysis.) So, it's a good thing I've got time for my AV Fistula to heal and strengthen.
Also, we discussed again the S/S's for urgent need to begin dialysis.
These are:
-Excessive Itching (either in one spot or over my whole body);
-Ongoing Emesis;
-Skin Smelling like Urine;
-Excessive Edemic Swelling a/o Weight Gain.
Things are getting there. At least I'm feeling increasingly lousy for a very good reason...the failure of two of my vital organs.
That's all the latest. Been feeling awful all day so I can't think of anything else I wanted to tell you.
Good Health to All!
ScottW
Here's the latest...
First, everything remains strictly about the PCKD. There are NO diabetes, hepatic disease, cardiopulmonary issues, etc. I continue to be very fortunate that such is the case!
Numbers...
*PTH 96.1 (NR 22.2-108.9) Down from 108.0 in Feb.
*K+ 4.4 (NR 3.5-5.5) Unch.
*Glucose 98 (NR 65-109) Down from 101
*BUN 39.0 (NR 5-26) Down from 44.0
*Creatinine 3.9 (NR 0.5-1.5) Up from 3.8
*Calcium 10.1 (NR 8.5-10.6) Up from 9.9
*WBC's 5.08 (NR 4.5-11.0) Down from 5.66
*RBC's 3.95 (NR 4.7-6.1) Down from 4.23
*Hematocrit 32.2 (NR 42-52) Down from 35.0
*Eosonophils 6.9 (NR 0-3) Up from 6.5
(Blue numbers are good/Red Numbers are bad)
*GFR (Glomelular Filtration Rate) 17.6% Down 0.6%
(The GFR reflects the total function of my kidneys.)
So, a 0.6% drop in thirty days. If I continue that rate, I'll be on dialysis in just over four months. (*15% function is the target for the start of dialysis.) So, it's a good thing I've got time for my AV Fistula to heal and strengthen.
Also, we discussed again the S/S's for urgent need to begin dialysis.
These are:
-Excessive Itching (either in one spot or over my whole body);
-Ongoing Emesis;
-Skin Smelling like Urine;
-Excessive Edemic Swelling a/o Weight Gain.
Things are getting there. At least I'm feeling increasingly lousy for a very good reason...the failure of two of my vital organs.
That's all the latest. Been feeling awful all day so I can't think of anything else I wanted to tell you.
Good Health to All!
ScottW
Saturday, April 23, 2011
The AV Fistula Exercises
This first pic shows the "equipment" that is needed for the exercises I am now doing to grow and strengthen my AV Fistula. Without the exercises, the fistula would not mature and I would have no clear venous access for dialysis.
This second image is the position of the rubber band and the ball. The exercise is simple. You occlude venous flow with the rubber band, then squeeze the ball repeatedly for three minutes.
The exercise is done a total of three times each day. I will continue this routine until my next vascular surgeon follow-up on 08 June. I may or may not have to continue the exercises after that. We'll see.
So that's all there is to the exercises. Seems simple enough, doesn't it. In reality, repeatedly squeezing a ball for three minutes is difficult. The hand grows tired quickly, and the arm hurts because of its continued healing from the surgery.
For some reason I began counting the number of squeezes in each three minute period. My first time I only got in 60. After almost top full days of exercises, I am now averaging 85. It will be interesting to see how many I am able to do at the end of two months.
If you have any questions about this, please ask.
Good Health to All!
ScottW
(*Did you see the box of Altoids in the background of the second pic? I've constantly got 'em nearby!)
Thursday, April 21, 2011
21 April 2011
The last few days have been up and down.
My appetite has improved slightly. While my overall snacking is still very poor, my once a day meal has increased from .75 cups to about 1.75 cups. It ain't a huge increase...but I'll take it!
The edema in my legs has been bad. On Monday I craved water. I drank nearly an entire gallon of water on Monday alone. I openly wondered what would happen as a result. Well, Tuesday morning I began feeling a lot of itching and swelling in my ankles. By the end of the day the edema had doubled the size of my ankles making them unrecognizable. The edema extended up my legs to above both knees. As of this AM, the edema has decreased; but only by about 20%.
Along with that, I have been colder than usual. I am bundled up in a 70 degree house. Not fun.
The pain over my mid-back continues to come and go. I haven't identified any triggers that increase the pain; it just happens.
My headache is constantly severe. Tuesday I felt TMD S/S's on top of it as well, making my headache even worse. However, I used my TMD-relieving occlusive devices on Tuesday night, and when I awoke Wednesday, the TMD symptoms were gone. As of this morning, the TMD S/S's are nowhere to be found leaving only the headache associated with the PCKD.
(*Remember, I dealt with TMD headaches for 15 years before finding relief, so I know quite intimately what they feel and taste like. The normal (and constant) headache associated with the PCKD is totally unlike the TMD headaches, and should not be assumed to be the TMD induced headaches.)
As you might guess based on my recent posts, the constant exhaustion I feel has been unrelieved. The daily naps continue to range from 30 minutes to several hours in total, and I still sleep every night a minimum of six hours. I have yet to find anything that gives me more energy.
Speaking of sleep--my dreams (at least, what I can remember of them) have been a mix of things that clearly illustrate my current physical condition. An inability to control my dreams illustrates the helplessness of my current physical condition. However, I do NOT feel that way in my conscious mind. I remain strong (mentally), positive, and looking towards a healthy, productive post-transplant life. As long as I continue to consciously think this way, I'll leave it to my subconscious to sort the rest out.
The past 5 days or so I have been feeling (in general) really yucky. Besides to obvious lack of energy, I've felt as if I have a constant stomach ache; like having the flu; that I also feel over the rest of my body. I don't know how else to describe this. It's a very subjective thing.
I've got my next nephrology appointment on Monday, 25 April. I'm going to do my labs this afternoon. So, I'll update you with the latest numbers early next week.
My L arm continues to heal up nicely from the AV Fistula surgery. I'm still not using it a lot; just allowing everything to heal properly. With every passing day I do a little more with the arm; but strictly avoid overuse when the arm begins to hurt. I'll start doing exercises tomorrow that will help the fistula to grow and strengthen.
That's all I can think of today.
Good Health to All!
ScottW
**The labs I had drawn today are CBC, Renal Panel and PTH. This is the second month in a row I have not done a urinalysis or liver panel.
My appetite has improved slightly. While my overall snacking is still very poor, my once a day meal has increased from .75 cups to about 1.75 cups. It ain't a huge increase...but I'll take it!
The edema in my legs has been bad. On Monday I craved water. I drank nearly an entire gallon of water on Monday alone. I openly wondered what would happen as a result. Well, Tuesday morning I began feeling a lot of itching and swelling in my ankles. By the end of the day the edema had doubled the size of my ankles making them unrecognizable. The edema extended up my legs to above both knees. As of this AM, the edema has decreased; but only by about 20%.
Along with that, I have been colder than usual. I am bundled up in a 70 degree house. Not fun.
The pain over my mid-back continues to come and go. I haven't identified any triggers that increase the pain; it just happens.
My headache is constantly severe. Tuesday I felt TMD S/S's on top of it as well, making my headache even worse. However, I used my TMD-relieving occlusive devices on Tuesday night, and when I awoke Wednesday, the TMD symptoms were gone. As of this morning, the TMD S/S's are nowhere to be found leaving only the headache associated with the PCKD.
(*Remember, I dealt with TMD headaches for 15 years before finding relief, so I know quite intimately what they feel and taste like. The normal (and constant) headache associated with the PCKD is totally unlike the TMD headaches, and should not be assumed to be the TMD induced headaches.)
As you might guess based on my recent posts, the constant exhaustion I feel has been unrelieved. The daily naps continue to range from 30 minutes to several hours in total, and I still sleep every night a minimum of six hours. I have yet to find anything that gives me more energy.
Speaking of sleep--my dreams (at least, what I can remember of them) have been a mix of things that clearly illustrate my current physical condition. An inability to control my dreams illustrates the helplessness of my current physical condition. However, I do NOT feel that way in my conscious mind. I remain strong (mentally), positive, and looking towards a healthy, productive post-transplant life. As long as I continue to consciously think this way, I'll leave it to my subconscious to sort the rest out.
The past 5 days or so I have been feeling (in general) really yucky. Besides to obvious lack of energy, I've felt as if I have a constant stomach ache; like having the flu; that I also feel over the rest of my body. I don't know how else to describe this. It's a very subjective thing.
I've got my next nephrology appointment on Monday, 25 April. I'm going to do my labs this afternoon. So, I'll update you with the latest numbers early next week.
My L arm continues to heal up nicely from the AV Fistula surgery. I'm still not using it a lot; just allowing everything to heal properly. With every passing day I do a little more with the arm; but strictly avoid overuse when the arm begins to hurt. I'll start doing exercises tomorrow that will help the fistula to grow and strengthen.
That's all I can think of today.
Good Health to All!
ScottW
**The labs I had drawn today are CBC, Renal Panel and PTH. This is the second month in a row I have not done a urinalysis or liver panel.
Monday, April 18, 2011
17 April 2011
As I do every so often, I want to remind my readers that everything I am writing about in connection with the PCKD is MY Singular Experience in dealing with this disease. Other patients of comparable age and overall health might find their experience wholly unlike what I am going through.
So please, if you are dealing with Polycystic Kidney Disease consult with your nephrologist about the S/S's (signs & symptoms) you are experiencing. Only your physician can best determine the appropriate course and treatment for you.
Also, I encourage you to educate yourselves about the disease through your physician, and through websites such as those listed on the top Left of this blog. The more you understand what you are dealing with, the better.
Thank you all for your continued readership and support. If you have any questions, please ask. If I cannot answer them, I will try to guide you to the best information available.
Good Health to All!
ScottW
So please, if you are dealing with Polycystic Kidney Disease consult with your nephrologist about the S/S's (signs & symptoms) you are experiencing. Only your physician can best determine the appropriate course and treatment for you.
Also, I encourage you to educate yourselves about the disease through your physician, and through websites such as those listed on the top Left of this blog. The more you understand what you are dealing with, the better.
Thank you all for your continued readership and support. If you have any questions, please ask. If I cannot answer them, I will try to guide you to the best information available.
Good Health to All!
ScottW
Saturday, April 16, 2011
16 April 2011
I'm not going to go into any depth on todays blog simply because I'm tired, feel lousy, and my head has been killing me all day.
The S/S's continue unabated in every area. Though the peripheral edema has lessened, it remains starkly visible. This past week I have had lots of pain when walking anywhere with my shoes on. I'm trying to solve this with wearing a pair of Tiva sandals which I just got today. The problem here is that unless the weather is hot, my feet will feel frozen. C'est La Vie.
My L arm has been really sore distal to the surgery site of the AV Fistula. When I say sore, I actually mean painful; like I've got some kind of injury in the arm, between the incision and the wrist. It may be from sleeping on it wrong; or from overuse as I continue recovery from the surgery.
My appetite has been horrible...again. In the last four days I've eaten just two "meals." The rest of what I've eaten has only been lite snacks. This is due to either nausea, or simply not being hungry. I'd guess that my total food intake over the last four days has averaged about .75 cups total per day, plus liquids.
The exhaustion continues without letup. Sleep, naps and doing little are of no avail in helping to relieve the exhaustion. I'll keep plugging along.
That's it, I think. I'll hopefully have a better report next time.
Good Health to All!
ScottW
The S/S's continue unabated in every area. Though the peripheral edema has lessened, it remains starkly visible. This past week I have had lots of pain when walking anywhere with my shoes on. I'm trying to solve this with wearing a pair of Tiva sandals which I just got today. The problem here is that unless the weather is hot, my feet will feel frozen. C'est La Vie.
My L arm has been really sore distal to the surgery site of the AV Fistula. When I say sore, I actually mean painful; like I've got some kind of injury in the arm, between the incision and the wrist. It may be from sleeping on it wrong; or from overuse as I continue recovery from the surgery.
My appetite has been horrible...again. In the last four days I've eaten just two "meals." The rest of what I've eaten has only been lite snacks. This is due to either nausea, or simply not being hungry. I'd guess that my total food intake over the last four days has averaged about .75 cups total per day, plus liquids.
The exhaustion continues without letup. Sleep, naps and doing little are of no avail in helping to relieve the exhaustion. I'll keep plugging along.
That's it, I think. I'll hopefully have a better report next time.
Good Health to All!
ScottW
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