More.
That completely sums up the last six days. More edema, more exhaustion, more nausea, more mid-back pain...more.
Sleep has been terrible; to put it mildly. The last five or so days I sleep an average of about five hours; yet only get about three quality hours of rest. The other two hours are filled with restlessness and discomfort. Then yesterday was a doozie. I fell asleep Christmas night at about 9p, and slept until about 4a (again, restlessly). After waking (or I was awoken because of it), I became intensely nauseated and my head was killing me.
I first downed a T3 for my head, then once that had taken the headache down from a 9.5 to a 9, I addressed the nausea. I tried two Tums first, then had to turn to the Promethazine. Within 20 minutes the nausea was gone, and I began feeling sleepy--a side effect of the anti-emetic. By 6a I was asleep, and stayed there until 9a. Once awake, I groggily got through another hour before sleeping again for another three hours. After that, I was still extremely groggy and managed to stay awake for about two hours before again drifting off for almost an two more hours. This pattern repeated itself until I finally went to bed at 8p. Once there, I restlessly slept until 5a today. (Ick!) As of now, I'm not currently sleepy--I think the Promethazine finally wore off. Nothing like evidence of poor kidney filtration. I took just a half dose of the anti-emetic, and its effects lasted twenty four hours.
The edema continues to be quite evident. Both my hands and legs look about the same as last week. I weighed myself last week and I had gained six pounds (256 ttl). I'm not eating any more than is now normal; but with the increased edema so evident, I have no doubt that the weight gain is only water retention.
The headache is ever present and always painful. T3's are barely keeping it in check.
The mid-back pain that began to be evidenced last week continues. I am uncomfortable when laying or sitting. A pillow behind my back helps, but certainly doesn't alleviate the pain and discomfort. Still no additional S/S's related to this increase. I'm still watching for them though.
Since the onset of increased back pain, the ammonia smell has intensified. Plus, I'm not just smelling ammonia right now. Even after brushing my teeth I am noticing a nasty smell when I burp or breathe out quickly. I don't know how else to describe it. This is definitely new. Plus the fact that brushing or even mints don't lessen the odor. So far no one else can smell it...yet.
Appetite fatigue has begun to be an issue. Less and less foods are appealing. I hate not being able to choose what to eat from a cabinet full of food. More and more I am looking in the cabinets or refrigerator and just staring into either, and turning away more often than not. Even my snack foods aren't looking so good these days. But, I will still eat in spite of nothing looking appealing. Food is food; even if it's not appetizing.
That's about all I remember wanting to pass on to you today.
I hope everyone's Christmas was wonderful and fun!
Good Health to All!
ScottW
Monday, December 27, 2010
Thursday, December 23, 2010
Be Financially Prepared for a Transplant
I received the following article from The Transplant Experience, a newsletter sent out by Astellas Pharmaceuticals:
"Make Sure You Are Financially Prepared For The Transplant Jouney Ahead"
While you're waiting for your transplant, it's a good idea to find out exactly what benefits your healthcare plan will provide to help pay the costs of your transplant surgery, follow-up care, and medications. There are many types of healthcare plans that offer different levels of coverage. Staying informed can help you maximize the benefits you receive and also prevent unexpected surprises when you visit the doctor's office, hospital, or pharmacy.
Start by talking to your transplant financial coordinator or social worker—they can guide you on how to get the most from your plan. Some pharmaceutical companies, including Astellas, can also offer assistance on understanding benefits available under your plan. If you are pre-transplant, your doctor may intend for you to take Prograf® (tacrolimus capsules) once you receive your new organ. In this case, you may take advantage of Astellas Reimbursement ServicesSM (ARS), which delivers high-quality support services at no cost to you. ARS can research your coverage and tell you what your out-of-pocket costs should be—before you go to the pharmacy for the first time.
To get help understanding your future coverage, call ARS at 1-800-477-6472, Monday through Friday, between the hours of 9 am and 8 pm EST.
Steps to ARS benefit verification
1. Contact ARS to request assistance with a benefit verification or to complete a Benefit Verification Request Form, which you can download here. If you have any questions while completing the form, please contact ARS at 1-800-477-6472 or complete the form with your healthcare provider or case manager. Once the form is completed, fax it and a copy of the front and back of your insurance card(s) to ARS at 1-866-317-6235.
2. Within one day, your insurance provider will be contacted by ARS to verify your benefit coverage and any claims submission requirements.
3. Once this information has been verified, you or your healthcare provider will receive a Summary of Benefits by mail or fax.
4. ARS is available to answer any questions you or your healthcare provider may have.
*Based on analysis of patients covered by commercial plans who receive Prograf prescriptions.
To better prepare for the cost of transplant surgery, here are some important questions you should ask your financial coordinator:
•Does my plan cover expenses such as travel, food, and lodging while I am at the transplant center? Will it cover these expenses for my family?
•If my plan covers travel, food, and lodging costs, how much will it pay? Will it cover the cost of a person to come with me?
•Do the costs vary if I have a living donor?
•What financial coverage does the hospital accept (Medicare, Medicaid, private insurance, etc)?
**For additional questions, visit the financial support section of www.TransplantExperience.com.
##I am NOT endorsing any particular products, companies or services, etc. My intent is to merely provide information for others as is sent to my email. If you have any questions about any company you read about in these newsletter copies, please contact that company directly as I am in no way affiliated with them, aside from receiving information regarding kidney transplant and its anticipated experiences and needs. Additionally, I do NOT receive any compensation for passing this information to my readers. Thank You.
ScottW
"Make Sure You Are Financially Prepared For The Transplant Jouney Ahead"
While you're waiting for your transplant, it's a good idea to find out exactly what benefits your healthcare plan will provide to help pay the costs of your transplant surgery, follow-up care, and medications. There are many types of healthcare plans that offer different levels of coverage. Staying informed can help you maximize the benefits you receive and also prevent unexpected surprises when you visit the doctor's office, hospital, or pharmacy.
Start by talking to your transplant financial coordinator or social worker—they can guide you on how to get the most from your plan. Some pharmaceutical companies, including Astellas, can also offer assistance on understanding benefits available under your plan. If you are pre-transplant, your doctor may intend for you to take Prograf® (tacrolimus capsules) once you receive your new organ. In this case, you may take advantage of Astellas Reimbursement ServicesSM (ARS), which delivers high-quality support services at no cost to you. ARS can research your coverage and tell you what your out-of-pocket costs should be—before you go to the pharmacy for the first time.
To get help understanding your future coverage, call ARS at 1-800-477-6472, Monday through Friday, between the hours of 9 am and 8 pm EST.
Steps to ARS benefit verification
1. Contact ARS to request assistance with a benefit verification or to complete a Benefit Verification Request Form, which you can download here. If you have any questions while completing the form, please contact ARS at 1-800-477-6472 or complete the form with your healthcare provider or case manager. Once the form is completed, fax it and a copy of the front and back of your insurance card(s) to ARS at 1-866-317-6235.
2. Within one day, your insurance provider will be contacted by ARS to verify your benefit coverage and any claims submission requirements.
3. Once this information has been verified, you or your healthcare provider will receive a Summary of Benefits by mail or fax.
4. ARS is available to answer any questions you or your healthcare provider may have.
*Based on analysis of patients covered by commercial plans who receive Prograf prescriptions.
To better prepare for the cost of transplant surgery, here are some important questions you should ask your financial coordinator:
•Does my plan cover expenses such as travel, food, and lodging while I am at the transplant center? Will it cover these expenses for my family?
•If my plan covers travel, food, and lodging costs, how much will it pay? Will it cover the cost of a person to come with me?
•Do the costs vary if I have a living donor?
•What financial coverage does the hospital accept (Medicare, Medicaid, private insurance, etc)?
**For additional questions, visit the financial support section of www.TransplantExperience.com.
##I am NOT endorsing any particular products, companies or services, etc. My intent is to merely provide information for others as is sent to my email. If you have any questions about any company you read about in these newsletter copies, please contact that company directly as I am in no way affiliated with them, aside from receiving information regarding kidney transplant and its anticipated experiences and needs. Additionally, I do NOT receive any compensation for passing this information to my readers. Thank You.
ScottW
Monday, December 20, 2010
20 Dec. 2010
It's been five days already? It only seems like two or three since my last entry.
Well, I've had a change. As I have been indicating, I've been feeling extreme exhaustion no matter how much sleep, or how many naps I get. The change is that I am now sleeping/napping even more...well, sort of.
Over the last week or so, I've been paying attention to how much total sleep I get per day. On average I am sleeping (laying down) about 6-7 hours per day. (The quality of the rest is another matter entirely.) However, the total time spent napping has increased from approx. 2-3 hours/day to between 3-5 hours per day. The naps don't happen with any regularity or pattern--they just happen. I suddenly feel sleepy, and usually withing 5 minutes or so I am asleep (most often in a sitting or reclining position). Then, after I've slept for whatever time period, I am having increasing difficulty waking from the naps; often waking for only a few minutes before sleeping once again.
In spite of all of the sleep, I am finding that my exhaustion not only continues, but seems to be increasing as well. So, I go about my days feeling as if I'll fall asleep at any time...which again, is happening with greater frequency.
My headache remains at its elevated level 24/7. There is no longer even a slight break from its relentless pain.
The ammonia I smell (and often taste) has been bad again. I'm often waving my hand in front of my face in a vain attempt to get it away from my nose. At least I can feel like I'm able to do something about it; even though it is, in actuality, completely useless.
Over the last couple of days the kidney area on my back has been increasingly painful. Today it is the worst. I cannot sit back against anything firm (let along hard) for more than a minute before I'm very uncomfortable and squirming around. In fact, as I write this entry, I am sitting forward on the chair, leaning on my left elbow--just trying to be a bit more comfortable...but it's not really working. Oh well--it's still better than resting against the chair back.
The edema in my legs and hands is quite visible today. My fingers are looking like sausage links today, and my ankles are almost gone. Both my hands and feet have been itching a lot lately, so I really shouldn't be surprised. Right now the edemic tests are:
-Lower Arms-- Color +2, Rebound +5
-Hands/Fingers-- Color +2, Rebound +5
-Knees-- Color +2, Rebound +5
-Shins-- Color +3, Rebound >> +15
Ankles-- Color +3.5, Rebound >> +20
Feet (at the metatarsals-- Color +3, Rebound >>+25
*>> = Greater than.
So...yeah. Lots of edema today.
Lastly, I wanted to pass on that my taking my daily meds has been causing me increased discomfort over what has been previously going on. I usually take the Zantac 10-15 minutes ahead of the rest of my meds to help my stomach settle down prior to assaulting it with all the meds I have to ingest. Doing this has led to a marked decrease in the incidents of nausea precipitated by ingestion of meds. Over the last three days, I have become intensely nauseated in spite of the Zantac.
Between the time I awaken and the time I take the meds my stomach is usually doing...alright (relatively speaking). After I take my meds, the nausea increases, but not intensely. These past few days, once I ingest the meds, nausea hits me like those overwhelming onsets that come out of the blue; and nothing alleviates its. I really don't want to take the Promethazine (anti-emetic) because of this; but if it keeps up, I'll have to do just that. Eeeww.
That's it for today, I think. But, like always, I can't remember for sure.
I may or may not get another entry done before Christmas. We'll see.
Good Health to All!
ScottW
Well, I've had a change. As I have been indicating, I've been feeling extreme exhaustion no matter how much sleep, or how many naps I get. The change is that I am now sleeping/napping even more...well, sort of.
Over the last week or so, I've been paying attention to how much total sleep I get per day. On average I am sleeping (laying down) about 6-7 hours per day. (The quality of the rest is another matter entirely.) However, the total time spent napping has increased from approx. 2-3 hours/day to between 3-5 hours per day. The naps don't happen with any regularity or pattern--they just happen. I suddenly feel sleepy, and usually withing 5 minutes or so I am asleep (most often in a sitting or reclining position). Then, after I've slept for whatever time period, I am having increasing difficulty waking from the naps; often waking for only a few minutes before sleeping once again.
In spite of all of the sleep, I am finding that my exhaustion not only continues, but seems to be increasing as well. So, I go about my days feeling as if I'll fall asleep at any time...which again, is happening with greater frequency.
My headache remains at its elevated level 24/7. There is no longer even a slight break from its relentless pain.
The ammonia I smell (and often taste) has been bad again. I'm often waving my hand in front of my face in a vain attempt to get it away from my nose. At least I can feel like I'm able to do something about it; even though it is, in actuality, completely useless.
Over the last couple of days the kidney area on my back has been increasingly painful. Today it is the worst. I cannot sit back against anything firm (let along hard) for more than a minute before I'm very uncomfortable and squirming around. In fact, as I write this entry, I am sitting forward on the chair, leaning on my left elbow--just trying to be a bit more comfortable...but it's not really working. Oh well--it's still better than resting against the chair back.
The edema in my legs and hands is quite visible today. My fingers are looking like sausage links today, and my ankles are almost gone. Both my hands and feet have been itching a lot lately, so I really shouldn't be surprised. Right now the edemic tests are:
-Lower Arms-- Color +2, Rebound +5
-Hands/Fingers-- Color +2, Rebound +5
-Knees-- Color +2, Rebound +5
-Shins-- Color +3, Rebound >> +15
Ankles-- Color +3.5, Rebound >> +20
Feet (at the metatarsals-- Color +3, Rebound >>+25
*>> = Greater than.
So...yeah. Lots of edema today.
Lastly, I wanted to pass on that my taking my daily meds has been causing me increased discomfort over what has been previously going on. I usually take the Zantac 10-15 minutes ahead of the rest of my meds to help my stomach settle down prior to assaulting it with all the meds I have to ingest. Doing this has led to a marked decrease in the incidents of nausea precipitated by ingestion of meds. Over the last three days, I have become intensely nauseated in spite of the Zantac.
Between the time I awaken and the time I take the meds my stomach is usually doing...alright (relatively speaking). After I take my meds, the nausea increases, but not intensely. These past few days, once I ingest the meds, nausea hits me like those overwhelming onsets that come out of the blue; and nothing alleviates its. I really don't want to take the Promethazine (anti-emetic) because of this; but if it keeps up, I'll have to do just that. Eeeww.
That's it for today, I think. But, like always, I can't remember for sure.
I may or may not get another entry done before Christmas. We'll see.
Good Health to All!
ScottW
Wednesday, December 15, 2010
15 Dec. 2010
The exhaustion continues unabated.
Each of the past two nights--well...day times, for me--I've gotten eight and six hours of so-called sleep. I am awaking multiple times whenever I can actually sleep, leading to an increase in how tired I am. Plus, my frequent naps also continue to be of little avail towards helping alleviate the exhaustion.
For instance, last night (Tuesday) I napped on and off for nearly three hours late in the evening. This after I had only been awake for four hours. Since fully waking from that series of naps, I have dozed off several times, but always wake up after about fifteen minutes and cannot sleep longer. So, here it is 0724a (Wednesday). I'm exhausted, sleepy. Hopefully when I lay down (after writing this blog entry), I'll be able to finally sleep.
But, drifting off to sleep is its own issue. Every time I lay down my abdomen feels terrible. Not always nauseated, mind you; just...as if I've got an upset stomach that hasn't made me sick yet. (That's really the best I can describe it.) Anyway, it's always there when I lay down. Last "night" it was really bad and I took nearly an hour to fall asleep because of it. Nothing I have really helps reduce it--aside from the anti-emetic. But, you all know I don't take that unless I really have to. So, I take Tums and tolerate feeling that as I try to sleep.
Also, my headache had a nasty ramp-up last night. Out of nowhere it took off from its new normal of 8 up to a 9.5 withing about twenty minutes. I don't know why it did; but it took a total of three T3's (over a four hour period) to reduce the headache to a manageable level.
On the more sensitive side, I had already told you months ago about slight urinary incontinence that only occurs after urination. Most of the time I just wait longer to be sure nothing else from my bladder is still making its way out. This is rarely an issue so long as I make sure even the dribbling flow has stopped. So, over the last week or so I've noticed on numerous occasions that my normal waiting has not been sufficient. I think it's all out, only to be surprised by additional dribbling leakage after I've exited the restroom. This is extremely disconcerting, to say the least. I've already noted this for the next doctor visit in early January. *By the way, urinary incontinence (slight or strong) is a common S/S of the PCKD. Luckily for me, it has thus far been a pretty minor concern.
What else...
-The diarrhea has been minimal lately.(Thank goodness!)
-My appetite is still terrible.
-My total liquid consumption remains inadequate. (I'm still not thirsty...ever!)
-The blurriness of my vision has increased and stayed that way.
-Ammonia smell is everywhere; in everything. Ugh!
-My feet and hands feel frozen just about all of the time. I'm getting used to it; but anyone else touching my hands or feet feel just how cold they really are!
-My whole body remains cold, as well. Right now my house is at 74 degrees and I am cold!
-The dryness of my face and scalp continues. Nothing helps it.
-Vertigo, vertigo, vertigo...'nuff said.
That's everything I can think of right now. (Hey...I got a few things coherently written today!)
I'm off to try and sleep....
Good Health to All!
ScottW
Each of the past two nights--well...day times, for me--I've gotten eight and six hours of so-called sleep. I am awaking multiple times whenever I can actually sleep, leading to an increase in how tired I am. Plus, my frequent naps also continue to be of little avail towards helping alleviate the exhaustion.
For instance, last night (Tuesday) I napped on and off for nearly three hours late in the evening. This after I had only been awake for four hours. Since fully waking from that series of naps, I have dozed off several times, but always wake up after about fifteen minutes and cannot sleep longer. So, here it is 0724a (Wednesday). I'm exhausted, sleepy. Hopefully when I lay down (after writing this blog entry), I'll be able to finally sleep.
But, drifting off to sleep is its own issue. Every time I lay down my abdomen feels terrible. Not always nauseated, mind you; just...as if I've got an upset stomach that hasn't made me sick yet. (That's really the best I can describe it.) Anyway, it's always there when I lay down. Last "night" it was really bad and I took nearly an hour to fall asleep because of it. Nothing I have really helps reduce it--aside from the anti-emetic. But, you all know I don't take that unless I really have to. So, I take Tums and tolerate feeling that as I try to sleep.
Also, my headache had a nasty ramp-up last night. Out of nowhere it took off from its new normal of 8 up to a 9.5 withing about twenty minutes. I don't know why it did; but it took a total of three T3's (over a four hour period) to reduce the headache to a manageable level.
On the more sensitive side, I had already told you months ago about slight urinary incontinence that only occurs after urination. Most of the time I just wait longer to be sure nothing else from my bladder is still making its way out. This is rarely an issue so long as I make sure even the dribbling flow has stopped. So, over the last week or so I've noticed on numerous occasions that my normal waiting has not been sufficient. I think it's all out, only to be surprised by additional dribbling leakage after I've exited the restroom. This is extremely disconcerting, to say the least. I've already noted this for the next doctor visit in early January. *By the way, urinary incontinence (slight or strong) is a common S/S of the PCKD. Luckily for me, it has thus far been a pretty minor concern.
What else...
-The diarrhea has been minimal lately.(Thank goodness!)
-My appetite is still terrible.
-My total liquid consumption remains inadequate. (I'm still not thirsty...ever!)
-The blurriness of my vision has increased and stayed that way.
-Ammonia smell is everywhere; in everything. Ugh!
-My feet and hands feel frozen just about all of the time. I'm getting used to it; but anyone else touching my hands or feet feel just how cold they really are!
-My whole body remains cold, as well. Right now my house is at 74 degrees and I am cold!
-The dryness of my face and scalp continues. Nothing helps it.
-Vertigo, vertigo, vertigo...'nuff said.
That's everything I can think of right now. (Hey...I got a few things coherently written today!)
I'm off to try and sleep....
Good Health to All!
ScottW
Sunday, December 12, 2010
12 Dec. 2010
I feel like I'm being redundant; but again, I've feel feeling exhausted as never before.
Dragging around; no energy; multiple naps each day; more exhaustion, etc, etc, etc. Along with all of that, the nausea has taken a sharp rise--along with the vertigo, the headache, and more of the other S/S's.
I don't know where to start besides exhaustion. I'm talking physical and mental. As before I'm apparently not sleep well. I continue to awaken feeling as worn out as when I went to sleep. Plus, I've now had a confirmed increase in the number of naps I each day. It's not uncommon for me to take between 3-5 naps per day of between 20 minutes to two hours. Only an hour or so after awaking I'm already dozing off [most days]. But in spite of the naps, I am getting progressively more exhausted.
(I've been writing, rewriting, and rewriting this next part for the last twenty minutes, and I can't seem to put a coherent thought together. My apologies.)
So, I'll wrap it up.
I'll try not to go more than two days between entries. I'm obviously having a difficult time writing out thoughts and information.
Until next time...
Good Health to All!
ScottW
Dragging around; no energy; multiple naps each day; more exhaustion, etc, etc, etc. Along with all of that, the nausea has taken a sharp rise--along with the vertigo, the headache, and more of the other S/S's.
I don't know where to start besides exhaustion. I'm talking physical and mental. As before I'm apparently not sleep well. I continue to awaken feeling as worn out as when I went to sleep. Plus, I've now had a confirmed increase in the number of naps I each day. It's not uncommon for me to take between 3-5 naps per day of between 20 minutes to two hours. Only an hour or so after awaking I'm already dozing off [most days]. But in spite of the naps, I am getting progressively more exhausted.
(I've been writing, rewriting, and rewriting this next part for the last twenty minutes, and I can't seem to put a coherent thought together. My apologies.)
So, I'll wrap it up.
I'll try not to go more than two days between entries. I'm obviously having a difficult time writing out thoughts and information.
Until next time...
Good Health to All!
ScottW
Wednesday, December 8, 2010
08 Dec. 2010
Really rough Monday night.
My nausea had been held in relative check all day. At about 1130p I went from mild nausea to intense in about two minutes. I don't know what precipitated the sudden onset. My usual one meal of the day settled OK, and I had a good balance of liquids all day. The overwhelming nausea literally happened for no apparent reason.
Two tums did absolutely nothing to stem the rapid onset. So I downed a half dose of the anti-emetic. Even by this point (two minutes) it was too late to try and head off how I'd end up feeling. At 30 minutes I was still miserable, so I took another half dose Promethazine. (I think next time the onset happens like that that I should just take a full dose immediately!)
By the time an hour [since onset] had passed, I was finally getting comfortable. It took another hour beyond that to get the nausea calmed enough that I could actually sleep. In spite of the Promethazine my sleep was extremely restless, and I remember a number of times of waking just enough to feel the nausea, but was able to get back to sleep. Unfortunately, that went on all night.
I awoke after six hours of "sleep" feeling better, but having to put up with the side effects of the anti-emetic. Those side effects actually stayed with me most of the day. (I guess my kidneys aren't filtering too well these days!) But, at least I didn't have a lot of nausea most of the day...until Tuesday evening, that is. The good news is that tonight's episode didn't turn into a nasty time like Monday night.
The only other significant mention to day is my headache. It had been at a 8+ for the past few weeks--well, I think it's now inching closer to a consistent 8.5+. My head is pounding just about every second with little relief; even with using the T3's.
Anyway, I just wanted to mention this latest (and very sudden) bout of overwhelming nausea. It was definitely a new type and speed of onset. Not fun!
Good Health to All!
ScottW
My nausea had been held in relative check all day. At about 1130p I went from mild nausea to intense in about two minutes. I don't know what precipitated the sudden onset. My usual one meal of the day settled OK, and I had a good balance of liquids all day. The overwhelming nausea literally happened for no apparent reason.
Two tums did absolutely nothing to stem the rapid onset. So I downed a half dose of the anti-emetic. Even by this point (two minutes) it was too late to try and head off how I'd end up feeling. At 30 minutes I was still miserable, so I took another half dose Promethazine. (I think next time the onset happens like that that I should just take a full dose immediately!)
By the time an hour [since onset] had passed, I was finally getting comfortable. It took another hour beyond that to get the nausea calmed enough that I could actually sleep. In spite of the Promethazine my sleep was extremely restless, and I remember a number of times of waking just enough to feel the nausea, but was able to get back to sleep. Unfortunately, that went on all night.
I awoke after six hours of "sleep" feeling better, but having to put up with the side effects of the anti-emetic. Those side effects actually stayed with me most of the day. (I guess my kidneys aren't filtering too well these days!) But, at least I didn't have a lot of nausea most of the day...until Tuesday evening, that is. The good news is that tonight's episode didn't turn into a nasty time like Monday night.
The only other significant mention to day is my headache. It had been at a 8+ for the past few weeks--well, I think it's now inching closer to a consistent 8.5+. My head is pounding just about every second with little relief; even with using the T3's.
Anyway, I just wanted to mention this latest (and very sudden) bout of overwhelming nausea. It was definitely a new type and speed of onset. Not fun!
Good Health to All!
ScottW
Monday, December 6, 2010
06 Dec. 2010
Tired. Exhausted. Fatigued.
That pretty much sums up how things have been the past few days. That is, those things are in addition to the usual S/S's I'm lucky enough to experience day in, and day out.
My now year+ headache has been slamming me pretty hard. I'm still only taking a single T3 at a time, but I'm having to take more every day in order to sort of keep the headache under control.
I've been smelling ammonia really strong the past week. There are days I wish I had no smell because of how prevalent the ammonia is. When I burp it is even worse. I've been sucking on breath mints more than ever just to combat the smell.
My appetite has been up and down. I swing between 1-3 cups of food per day.
The vertigo has been constant. Most of the time I cannot be standing to drink a glass of liquid because tilting my head back brings waves of dizziness. So, I'm now sitting most times I have anything to drink.
The nausea has been up and down as well. Eating still intensifies it; but I've actually had a few hours when I was feeling not so bad. I'll take those times anytime I can get 'em!
My sleep continues to be poor, at best. I'm waking multiple times per night, and then end up sleeping a few hours just about every day; and sometimes I'm napping more than once per day. Sunday I had about six hours of restless sleep, then I took three more naps throughout the day totaling about five more hours. Today I took (I thinks) eight catnaps of about 15 minutes each. After all of that, I still feel like I've been working my butt off all day and am feeling simply exhausted.
The dry skin on my scalp and chin continues to be evident. I'm only able to just keep it from getting really bad.
All the edema I'm seeing has not fluctuated over the past week. It has remained at a constant 3+ on color in my legs (knees, tib/fib, and feet), and 7+ on rebound in the same areas. Plus, the edema in my hands (various points including fingers) has also remained the same at 3+ color and 6+ rebound.
My short term memory continues to be a source of great frustration for me. I'm not doing anything creative at this point simply because I can't concentrate on things; nor can I remember details that come to mind, because by the time I finish writing a thought, the previous things I wanted to write are just gone; and no matter how much I think, I can't recall something that was in my brain mere moments before.
As I noted previously, my urine continues to be quite odorous. It doesn't matter how much water I do or don't drink, the odor is always quite strong.
Lastly, the cold I feel has been all day, every day. I'm almost always wearing a coat or fleece, sweat pants and (sometimes) the heavy socks. Yes, I'm still sleeping under three quilts and only feel comfortable. I've had two times when I couldn't get warm in bed and my feet felt like popcicles to the touch.
That's it for today. I'm out of strength or inclination to write any more.
Good Health to All!
ScottW
That pretty much sums up how things have been the past few days. That is, those things are in addition to the usual S/S's I'm lucky enough to experience day in, and day out.
My now year+ headache has been slamming me pretty hard. I'm still only taking a single T3 at a time, but I'm having to take more every day in order to sort of keep the headache under control.
I've been smelling ammonia really strong the past week. There are days I wish I had no smell because of how prevalent the ammonia is. When I burp it is even worse. I've been sucking on breath mints more than ever just to combat the smell.
My appetite has been up and down. I swing between 1-3 cups of food per day.
The vertigo has been constant. Most of the time I cannot be standing to drink a glass of liquid because tilting my head back brings waves of dizziness. So, I'm now sitting most times I have anything to drink.
The nausea has been up and down as well. Eating still intensifies it; but I've actually had a few hours when I was feeling not so bad. I'll take those times anytime I can get 'em!
My sleep continues to be poor, at best. I'm waking multiple times per night, and then end up sleeping a few hours just about every day; and sometimes I'm napping more than once per day. Sunday I had about six hours of restless sleep, then I took three more naps throughout the day totaling about five more hours. Today I took (I thinks) eight catnaps of about 15 minutes each. After all of that, I still feel like I've been working my butt off all day and am feeling simply exhausted.
The dry skin on my scalp and chin continues to be evident. I'm only able to just keep it from getting really bad.
All the edema I'm seeing has not fluctuated over the past week. It has remained at a constant 3+ on color in my legs (knees, tib/fib, and feet), and 7+ on rebound in the same areas. Plus, the edema in my hands (various points including fingers) has also remained the same at 3+ color and 6+ rebound.
My short term memory continues to be a source of great frustration for me. I'm not doing anything creative at this point simply because I can't concentrate on things; nor can I remember details that come to mind, because by the time I finish writing a thought, the previous things I wanted to write are just gone; and no matter how much I think, I can't recall something that was in my brain mere moments before.
As I noted previously, my urine continues to be quite odorous. It doesn't matter how much water I do or don't drink, the odor is always quite strong.
Lastly, the cold I feel has been all day, every day. I'm almost always wearing a coat or fleece, sweat pants and (sometimes) the heavy socks. Yes, I'm still sleeping under three quilts and only feel comfortable. I've had two times when I couldn't get warm in bed and my feet felt like popcicles to the touch.
That's it for today. I'm out of strength or inclination to write any more.
Good Health to All!
ScottW
Saturday, December 4, 2010
04 Dec. 2010
My Friday came and went without much recognition on my part.
On Wednesday and Thursday I was feeling really off. I was weak, my head hurt at the elevated level, I've been eating less than normal (and what food I did eat was thoroughly unappetizing), and I've had a real mental struggle as well.
Then on Thursday night my food didn't sit well; and even though I wasn't unusually nauseated, I was just feeling increasingly yucky. Nothing specific, mind you...just yucky. When I was finally able to sleep I was only out for about four hours. Intense Nausea woke me up, so I took a half dose of Promethazine. About an hour passed before I was nausea free; then I slept for another four hours. After I awoke from that sleep, I had a full barrage of the usual side effects [from the Promethazine], and groggily stayed awake for about three hours before sleeping again for another three hours. By this time it was 10p, and my whole Friday was pretty much gone.
And that has been my day. Fun...I know.
And, that's really all I feel like writing tonight.
Good Health to All.
ScottW
On Wednesday and Thursday I was feeling really off. I was weak, my head hurt at the elevated level, I've been eating less than normal (and what food I did eat was thoroughly unappetizing), and I've had a real mental struggle as well.
Then on Thursday night my food didn't sit well; and even though I wasn't unusually nauseated, I was just feeling increasingly yucky. Nothing specific, mind you...just yucky. When I was finally able to sleep I was only out for about four hours. Intense Nausea woke me up, so I took a half dose of Promethazine. About an hour passed before I was nausea free; then I slept for another four hours. After I awoke from that sleep, I had a full barrage of the usual side effects [from the Promethazine], and groggily stayed awake for about three hours before sleeping again for another three hours. By this time it was 10p, and my whole Friday was pretty much gone.
And that has been my day. Fun...I know.
And, that's really all I feel like writing tonight.
Good Health to All.
ScottW
Wednesday, December 1, 2010
01 Dec. 2010
Ok, here's the latest...
*In the last six weeks my kidneys have stayed at 22.2% function. So for now, I remain at near-end stage.
*Blood Glucose 95 (normal 65-109). No diabetic development!
*Hematocrit 37.1 (42-52). RBC production has dropped off .6%. So, anemia is progressing again.
*WBC's 4.90 (4.5-11.0), a drop of .82. Anemia is also affecting the WBC production.
*Parathyroid Hormone 75.9 (12-88), a drop of 6.5.
...(OK, it's now early Saturday morning. I've been feeling terrible and just haven't felt up to finishing this post properly. So, for now, things are the same; but we're also on the lookout for signs of my body crashing. The longer I go like this, the greater the possibility of that happening.
So, that's the whole update. I'll do another quick update dated this morning.)
Good Health to All!
ScottW
*In the last six weeks my kidneys have stayed at 22.2% function. So for now, I remain at near-end stage.
*Blood Glucose 95 (normal 65-109). No diabetic development!
*Hematocrit 37.1 (42-52). RBC production has dropped off .6%. So, anemia is progressing again.
*WBC's 4.90 (4.5-11.0), a drop of .82. Anemia is also affecting the WBC production.
*Parathyroid Hormone 75.9 (12-88), a drop of 6.5.
...(OK, it's now early Saturday morning. I've been feeling terrible and just haven't felt up to finishing this post properly. So, for now, things are the same; but we're also on the lookout for signs of my body crashing. The longer I go like this, the greater the possibility of that happening.
So, that's the whole update. I'll do another quick update dated this morning.)
Good Health to All!
ScottW
Subscribe to:
Posts (Atom)
