Well, a bit of improvement since my last post.
Most notably, the nausea has retreated by about 50% over its latest increase. I will NOT complain about that!
Also, the edema has been minimal the last few days. The only thing I can think of as to why is because of next Wednesday's nephrologist appointment--it usually goes down just prior to seeing the doctor...typical, eh? ;o)
The headache continues at its elevated normal. My T3 usage is up as a result to 4.95/day. Even at that usage, I really should be taking more to keep the pain tolerable.
Flank pain has been constant, unrelenting, and very painful. I am interested to hear what my doc will say on Wednesday when he learns of this. Another test, perhaps? I will keep you informed.
My sleep and exhaustion have been consistent, too. In other words, unrestful sleep and naps, and overwhelming exhaustion.
The vertigo lately has been a little better. I am still losing my balance when walking or turning; but the dizziness and spinning have gone down. This might be due to the PTH med I have been taking (Zemplar) three times/week. Whatever to reason, you'll find no complaints coming from me!
My appetite has also been a little better--aside from one day that I ate nothing besides liquids. I have been taking in about 1.25 cups food per day. This is very good!
That's all I can think of right now. This will likely be my last entry before Wednesday's appointment. I will get everything written down as soon as I can afterward.
Good Health to All!
ScottW
Friday, March 30, 2012
Thursday, March 29, 2012
Newsletter: Brand Name Meds vs Generics
The following newsletter is from The Transplant Experience, a division of Astellas Pharmaceuticals that is intended to educate transplant patients regarding the myriad of very confusing information facing anyone who has, or will receive an organ transplant. Here is the latest of this free edition...
Brand Name and Generic Medications--What Do They Mean?
Because medications are a critical part of your transplant journey, it’s important that you understand what your medications are, what formulations your doctor intends for you, and what steps will help ensure you receive your medications exactly as intended.
You can start by really understanding brand name and generic medications, so that you can discuss with your doctor which medications he or she would prefer you take as the brand name formulation and which you can take as the generic formulation.
Same active ingredient(s)
Brand name and generic products have the same active ingredients, and are evaluated by the FDA to have the same standards of safety, strength, dosing, quality, performance, and intended use.1 Generic formulations may be less expensive because manufacturers do not have to invest in the discovery, development, and multi-phase clinical testing required to bring a brand name drug to market.
Different inactive ingredient(s)
Any one brand name drug may have multiple generic alternatives, each with a different set of inactive ingredients. And since different generics for the same brand name medication can be freely substituted for one another, you may receive a generic formulation from one manufacturer at one refill, a different generic from another manufacturer at another refill, or formulations from different manufacturers in the same refill if your prescription requires multiple dosage strengths.1,2
Multiple potential formulations from refill to refill What to do at the doctor’s office
In some cases, however, your pharmacist or pharmacy personnel may not be required to inform you that your brand name medication has been substituted with the generic formulation.3 It is ultimately up to you to ensure you receive the brand name medication intended for you by your doctor.
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Saturday, March 24, 2012
24 March 2012
I have never begun a blog in which I have nothing positive to share. It's been an especially tough stretch since I last wrote.
The flank pain has been especially bad. It has been affecting even my ability to walk well (even with using my cane). I start out my day OK, but as it progresses the flank pain increases to the point of being extremely painful. This is a bilateral pain that also continues to exhibit positional flareups. No fun at all.
The nausea continues to be worse. Since my last blog, I have had four nasty episodes of nausea. It has followed the exact same pattern each time--I am doing OK then...wham! Within literally a minute I am overcome with body bending nausea. Only Promethazine makes it go away. Additionally, my taking my twice-daily meds has produced additional nausea every time this past week. Even if I have a little food in my stomach, I am still getting nauseated just from taking my meds.
The headache remains unbearable. No change either way on that one.
My breath has gotten worse. The mouthwash is now less effective than it was just last week. The ammonia smell on my breath is ridiculously strong to others.
The edema in my feet and hands is still at its increased level. No letup here, either.
My urine has been darker than normal a few days in a row. The other characteristics are unchanged. Still no evidence of kidney stones however.
I've even had a couple of rough days mentally because of all of this. Yeah, I always rebound to my usual self; but to know that I have struggled mentally is concerning to me.
That's all I've got for today. I'm exhausted [at 130p], and just too tired to think about anything more to write today.
Let's hope for a much better entry next time!
Good Health to All!
ScottW
The flank pain has been especially bad. It has been affecting even my ability to walk well (even with using my cane). I start out my day OK, but as it progresses the flank pain increases to the point of being extremely painful. This is a bilateral pain that also continues to exhibit positional flareups. No fun at all.
The nausea continues to be worse. Since my last blog, I have had four nasty episodes of nausea. It has followed the exact same pattern each time--I am doing OK then...wham! Within literally a minute I am overcome with body bending nausea. Only Promethazine makes it go away. Additionally, my taking my twice-daily meds has produced additional nausea every time this past week. Even if I have a little food in my stomach, I am still getting nauseated just from taking my meds.
The headache remains unbearable. No change either way on that one.
My breath has gotten worse. The mouthwash is now less effective than it was just last week. The ammonia smell on my breath is ridiculously strong to others.
The edema in my feet and hands is still at its increased level. No letup here, either.
My urine has been darker than normal a few days in a row. The other characteristics are unchanged. Still no evidence of kidney stones however.
I've even had a couple of rough days mentally because of all of this. Yeah, I always rebound to my usual self; but to know that I have struggled mentally is concerning to me.
That's all I've got for today. I'm exhausted [at 130p], and just too tired to think about anything more to write today.
Let's hope for a much better entry next time!
Good Health to All!
ScottW
Monday, March 19, 2012
19 March 2012
Well, another downturn. Unfortunately, I allowed a full week to sneak by without getting an entry done so I don't remember the order that things have happened.
Nausea. This has slammed me out of nowhere. In the past week I have taken more Promethazine than in the two or three preceding weeks. It has hit me really hard. No fun.
Headache. Intense; pounding; misery; unrelenting...that pretty much sums it up. The average headache has increased from an 8.5 up to a solid 9.5+. There are zero TMD complications, so this is all PCKD related.
Exhaustion. Constant is the best adjective I can come up with to describe how this is right now. Always there, always impacting literally everything I do. I am falling asleep at my computer more often than not.
Flank Pain. It seems to be worsening slightly as the week has progressed. LOTS of resting pain, accentuated by more positional flareups. I have again taken T3s specifically for flank pain.
Appetite. Up and down....up and down...etc. The nausea I get whenever I eat has continued no matter what. Sometimes it is lite, other times it is nasty. Of course, this only continues to negatively impact my appetite a/o desire to eat. My daily average intake remains at about .75 cups/day.
I have been using mouthwash throughout the day to see if it helps cut down on my ammonia breath at all, or the nasty taste I always have. So far, it does take some of the icks away. The amount that is reduced is around 30%. While not a resounding success, it does represent an improvement. I'll keep using the mouthwash at least until I use up the bottle. After that, we'll see.
That's all for now. I'm starting to fall asleep again, so I'd better go.
Good Health to All!
ScottW
Nausea. This has slammed me out of nowhere. In the past week I have taken more Promethazine than in the two or three preceding weeks. It has hit me really hard. No fun.
Headache. Intense; pounding; misery; unrelenting...that pretty much sums it up. The average headache has increased from an 8.5 up to a solid 9.5+. There are zero TMD complications, so this is all PCKD related.
Exhaustion. Constant is the best adjective I can come up with to describe how this is right now. Always there, always impacting literally everything I do. I am falling asleep at my computer more often than not.
Flank Pain. It seems to be worsening slightly as the week has progressed. LOTS of resting pain, accentuated by more positional flareups. I have again taken T3s specifically for flank pain.
Appetite. Up and down....up and down...etc. The nausea I get whenever I eat has continued no matter what. Sometimes it is lite, other times it is nasty. Of course, this only continues to negatively impact my appetite a/o desire to eat. My daily average intake remains at about .75 cups/day.
I have been using mouthwash throughout the day to see if it helps cut down on my ammonia breath at all, or the nasty taste I always have. So far, it does take some of the icks away. The amount that is reduced is around 30%. While not a resounding success, it does represent an improvement. I'll keep using the mouthwash at least until I use up the bottle. After that, we'll see.
That's all for now. I'm starting to fall asleep again, so I'd better go.
Good Health to All!
ScottW
Monday, March 12, 2012
12 March 2012
I've had changes since my last entry; and not all of them are good.
Let's start with the positive:
-My sleep has improved. This week I have averaged about 7.5 hours of decent sleep. Plus, I have actually taken a few naps for the first time in a few weeks. These naps have averaged 3.5 hours in length. I feel a touch more rested because of this.
-The headache, now nearly 28 month in continuous length, has help steady at about an 8.5. It's a bit of a break; and a very welcomed one at that!
-Nausea has been a near non-factor--at least any major nausea. I still feel sick every time I eat; but I'm talking about the nasty nausea that has been so prevelant. I haven't taken any promethazine in a week! Yay!!
Now, the rest:
-Lots of bilateral flank pain. The pain is happening 24/7 now. Still having positional flareups as well. I have taken a few T3's more because of the flank pain than because of the headache.
-The ill feeling is making a resurgence. Most of the time it's been OK; but last Saturday is hit me really hard, leaving me quite miserable the whole day. Sunday and today have been better, but it is still there.
-My appetite has fallen off again. I am again averaging about .75 cups of food every day. This number takes into account that on Friday I ate nothing all day. I just wasn't feeling well and didn't want to eat. Also, I have been doing almost zero snacking. I've hit one of those stretches in which food just isn't appealing.
-Edema is again a bit worse. More swelling in my hands, and lots more in my lower legs and feet. Even the usual cycle of less swelling in the morning has been broken. The edemic increase is nothing major, mind you; it's just out of its normal pattern, and has been for about two weeks now.
I had a few more things I wanted to talk about, but I suddenly don't remember what they were. (Aaargh!) So, rather than get frustrated by this, I'll just wrap it up.
Good Health to All!
ScottW
Let's start with the positive:
-My sleep has improved. This week I have averaged about 7.5 hours of decent sleep. Plus, I have actually taken a few naps for the first time in a few weeks. These naps have averaged 3.5 hours in length. I feel a touch more rested because of this.
-The headache, now nearly 28 month in continuous length, has help steady at about an 8.5. It's a bit of a break; and a very welcomed one at that!
-Nausea has been a near non-factor--at least any major nausea. I still feel sick every time I eat; but I'm talking about the nasty nausea that has been so prevelant. I haven't taken any promethazine in a week! Yay!!
Now, the rest:
-Lots of bilateral flank pain. The pain is happening 24/7 now. Still having positional flareups as well. I have taken a few T3's more because of the flank pain than because of the headache.
-The ill feeling is making a resurgence. Most of the time it's been OK; but last Saturday is hit me really hard, leaving me quite miserable the whole day. Sunday and today have been better, but it is still there.
-My appetite has fallen off again. I am again averaging about .75 cups of food every day. This number takes into account that on Friday I ate nothing all day. I just wasn't feeling well and didn't want to eat. Also, I have been doing almost zero snacking. I've hit one of those stretches in which food just isn't appealing.
-Edema is again a bit worse. More swelling in my hands, and lots more in my lower legs and feet. Even the usual cycle of less swelling in the morning has been broken. The edemic increase is nothing major, mind you; it's just out of its normal pattern, and has been for about two weeks now.
I had a few more things I wanted to talk about, but I suddenly don't remember what they were. (Aaargh!) So, rather than get frustrated by this, I'll just wrap it up.
Good Health to All!
ScottW
Wednesday, March 7, 2012
07 March 2012
I was looking at my blog tonight and astonished to see that six days have already passed since my last blog. To my brain, it seems only like a few days have gone by.
Well, for the most part, steadiness still holds true. As before my headache is awful and has woken me from my sleep four times over the last six days. No relief, and no hiding from it whatsoever.
Edema has been an issue again. No bid blowups (sorry for the unfortunate simile), but the edema I have from day to day has been more than what had become normal. I'd estimate the average edemic increase to be about 20% over what it had been. Plus, it is still getting worse every evening.
My appetite continues to be improved. I am still averaging 1.5 cups+/day. The exception to this is today, in fact. I've eaten very little because I'm just not hungry at all. In fact, I just ate my first meal of the day--at 1045p.
My sleep is once again all over the place. This past week it seems as if I can't sleep any more than six hours before being wide awake. Then, I have yet to be sleepy enough to get a single nap. Instead, I get to drag around even more exhausted than usual. Blaaahhh!
I've continued to feel frozen most of the time. My feet and hands have actually turned blue from the poor circulation. I'm so cold that I am wearing sweats and fleece all the time again. I look like I'm bundled up for a snowy outing!
My urine has developed a stronger odor. Plus, I am excreting more proteins because the foaminess of my urine has increased as well. No blood though, or obvious signs of any kidney stones.
The flank pain has increased slightly on both sides. Plus, I am have more and more instances of discomfort when sitting back against pretty much anything.
And, that's all I can think of. Feeling sleep and a bit foggy; so I will be going.
Good Health to All!
ScottW
Well, for the most part, steadiness still holds true. As before my headache is awful and has woken me from my sleep four times over the last six days. No relief, and no hiding from it whatsoever.
Edema has been an issue again. No bid blowups (sorry for the unfortunate simile), but the edema I have from day to day has been more than what had become normal. I'd estimate the average edemic increase to be about 20% over what it had been. Plus, it is still getting worse every evening.
My appetite continues to be improved. I am still averaging 1.5 cups+/day. The exception to this is today, in fact. I've eaten very little because I'm just not hungry at all. In fact, I just ate my first meal of the day--at 1045p.
My sleep is once again all over the place. This past week it seems as if I can't sleep any more than six hours before being wide awake. Then, I have yet to be sleepy enough to get a single nap. Instead, I get to drag around even more exhausted than usual. Blaaahhh!
I've continued to feel frozen most of the time. My feet and hands have actually turned blue from the poor circulation. I'm so cold that I am wearing sweats and fleece all the time again. I look like I'm bundled up for a snowy outing!
My urine has developed a stronger odor. Plus, I am excreting more proteins because the foaminess of my urine has increased as well. No blood though, or obvious signs of any kidney stones.
The flank pain has increased slightly on both sides. Plus, I am have more and more instances of discomfort when sitting back against pretty much anything.
And, that's all I can think of. Feeling sleep and a bit foggy; so I will be going.
Good Health to All!
ScottW
Thursday, March 1, 2012
01 March 2012
Well, for the last week things have been pretty much steady.
Aside from one day when most everything eased up a tad--giving me a bit of a break--steady really is the word to describe how things have been:
-The headache continues to be terrible. No let-up of any sort here.
-The edema continues its [now] normal cycle of swelling throughout the day, then decrease when I sleep at night, etc.
-My sleep is still pattern-less, as are the naps that range from 2-4 hours, and always at varying times of the day.
-Urinary characteristics are holding steady in just about every way.
-Still no ammonia crystallization on my skin; but, my breath once again smells stronger with ammonia. Plus, it remains just plain nasty all the time, too.
-The bilateral flank pain is constant, and I've again encountered positional flareups while sitting, standing and laying.
-Still no kidney stones or any obvious blood in my urine.
-I am in complete control of my dreams again; which tells me that I am doing well mentally (which I already knew).
-The incidences of leg cramps has actually decreased...which is great.
-I've been feeling ill about the same as the last few months.
-Nausea has decreased a bit, which really helps me endure this whole thing.
-I've been getting really cold this last week. My feet feel frozen under warm blankets, I am shivering under a fleece coat and two blankets, and I am cold in a 75 degree room...frozen, would be a better description.
So, pretty much steady. Too bad. I'd really like some progress towards dialysis; but at the same time, I'm not looking forward to that whole thing. Hmmm...
Good Health to All!
ScottW
Aside from one day when most everything eased up a tad--giving me a bit of a break--steady really is the word to describe how things have been:
-The headache continues to be terrible. No let-up of any sort here.
-The edema continues its [now] normal cycle of swelling throughout the day, then decrease when I sleep at night, etc.
-My sleep is still pattern-less, as are the naps that range from 2-4 hours, and always at varying times of the day.
-Urinary characteristics are holding steady in just about every way.
-Still no ammonia crystallization on my skin; but, my breath once again smells stronger with ammonia. Plus, it remains just plain nasty all the time, too.
-The bilateral flank pain is constant, and I've again encountered positional flareups while sitting, standing and laying.
-Still no kidney stones or any obvious blood in my urine.
-I am in complete control of my dreams again; which tells me that I am doing well mentally (which I already knew).
-The incidences of leg cramps has actually decreased...which is great.
-I've been feeling ill about the same as the last few months.
-Nausea has decreased a bit, which really helps me endure this whole thing.
-I've been getting really cold this last week. My feet feel frozen under warm blankets, I am shivering under a fleece coat and two blankets, and I am cold in a 75 degree room...frozen, would be a better description.
So, pretty much steady. Too bad. I'd really like some progress towards dialysis; but at the same time, I'm not looking forward to that whole thing. Hmmm...
Good Health to All!
ScottW
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