I'm in a bit of a holding pattern.
I haven't gotten worse over the last three days; but I haven't gotten better, either. To start, my tiredness continues all day, every day. In fact just this [late] morning, after seven uninterrupted hours of sleep, I had to force myself to get out of bed, then dragged myself around for most of the afternoon before the tiredness subsided...somewhat.
Next, the headache has continued without a break. The last three days, it has averaged a 7 on my scale. Though I still try to break the headache, I am also resigned to the fact that it may not go away so long as I'm dealing with the whole kidney thing. So, I am also just trying (sometimes quite unsuccessfully) to keep it under some sort of control.
The nausea continues to be ever present. Taking meds and eating always exacerbate the nausea. My whole abdomen remains sensitive to both pressure and weight of any amount. Aside from last Monday's episode, I have been able to keep the nausea from getting overwhelming. Even though I don't like how the anti-emetic makes me feel, I sure am glad I have it for when I need the extra help.
The edema in my lower legs remains at 5+, depending on the day. Both feet have looked bloated the last two days, and the skin on each foot has had a lot if itchiness. I've been able to test the edema up to the head of the Tib/Fib (just below the knee). There, the edema measures only a 2+; but it IS present.
My urine output still lags well behind my fluid intake. Based on my increased edema, it would seem that the diuretic isn't able to maintain any equilibrium between intake and output. I am going to speculate (only) that this is because I'm losing more kidney function. I'll know in a few weeks.
I think that was all I wanted to tell you about today. Wish I could remember for sure.
Anyway, have a great weekend, everyone!
Good Health to All!
ScottW
Friday, July 30, 2010
Tuesday, July 27, 2010
27 July 10
Another turnaround!
On my last entry (23 July 10), I'd had a few days of doing better. By Saturday afternoon (the 24th), I was starting to feel lousy again. It started with an increase of nausea, followed by a stronger headache. The edema in my legs also increased slightly, and my urine output dropped noticeably. I then spent Sunday feeling miserable all over, and ate about two cups short of nothing all day.
Then yesterday, Monday the 26th, I felt lousy when I awoke, and it progressed. The nausea got bad enough for me to want to take the anti-emetic Rx. It helped the nausea...and put me to sleep for about six hours, and I had lingering sleepiness for another eight. It reduced the nausea by 100%; but I did NOT like the way it left me feeling. I'll only be using that med again when nothing else works.
At this point (0520a), the nausea is slowly returning, my headache is about a 7, my abdomen is tender to both touch and weight, and I've eaten very, very little today...again.
A few posts ago I alluded to wondering if my body was going through cycles of feel better, then feeling worse. By my reckoning, since late June, I've felt bad, then better, then bad, then better again, and now worse. Looks like a cycle to me. I'll continue to keep an eye on this.
Lastly, as I've been walking around the house the last few days just doing everyday things, I've had more than a dozen instances of losing my balance (and catching myself before falling), and multiple instances of dizziness when standing, or bending then straightening. I had to steady myself against whatever was close to stay on my feet. I'm not trying to read into this too much, or create a false need; but I am increasingly concerned about a ground level fall. I've begun active research on local business to purchase a cane. I'd rather have to use one than lose my balance or get dizzy when I'm away from anything to catch myself on. Nothing wrong with being cautious.
That's all for now.
Good Health to All!
ScottW
On my last entry (23 July 10), I'd had a few days of doing better. By Saturday afternoon (the 24th), I was starting to feel lousy again. It started with an increase of nausea, followed by a stronger headache. The edema in my legs also increased slightly, and my urine output dropped noticeably. I then spent Sunday feeling miserable all over, and ate about two cups short of nothing all day.
Then yesterday, Monday the 26th, I felt lousy when I awoke, and it progressed. The nausea got bad enough for me to want to take the anti-emetic Rx. It helped the nausea...and put me to sleep for about six hours, and I had lingering sleepiness for another eight. It reduced the nausea by 100%; but I did NOT like the way it left me feeling. I'll only be using that med again when nothing else works.
At this point (0520a), the nausea is slowly returning, my headache is about a 7, my abdomen is tender to both touch and weight, and I've eaten very, very little today...again.
A few posts ago I alluded to wondering if my body was going through cycles of feel better, then feeling worse. By my reckoning, since late June, I've felt bad, then better, then bad, then better again, and now worse. Looks like a cycle to me. I'll continue to keep an eye on this.
Lastly, as I've been walking around the house the last few days just doing everyday things, I've had more than a dozen instances of losing my balance (and catching myself before falling), and multiple instances of dizziness when standing, or bending then straightening. I had to steady myself against whatever was close to stay on my feet. I'm not trying to read into this too much, or create a false need; but I am increasingly concerned about a ground level fall. I've begun active research on local business to purchase a cane. I'd rather have to use one than lose my balance or get dizzy when I'm away from anything to catch myself on. Nothing wrong with being cautious.
That's all for now.
Good Health to All!
ScottW
Friday, July 23, 2010
23 July 10
Two days of feeling not so bad...I'll take it.
What looked like a return to an increase of all symptoms turned out to be a blip. The last two days, while not great by any standard, have been better than expected.
My headache has finally retreated to a 5. I went without any pain meds yesterday for the first time in over a month. Yay!!!
The nausea is a bit better. I have not yet had a nasty episode of nausea; but it is better than it has been. Yay!!!
The edema in my legs is the same. It still has not gotten up past my knees. (At least, I haven't noticed any.)
I have seen an increase in the diarrhea episodes over the last three days. Nothing to be alarmed at; just more than what has been occurring the past few weeks.
My appetite continue to be just awful. My daily average intake is now just one meal, plus a few snacks. I am just not hungry nearly all of the time. And, most foods aren't appealing to me at all. I usually am eating simply because I need to.
Ever since my realization about my decreased water intake, I have kept a container of water in or near my hand almost the whole time I am awake. My intake has gone back up to at least 64 oz of water per day. I'm trying to drink more.
The last two nights I've actually gotten some good rest (7+ hours each night). I'm still tired all of the time, but at least I've gotten some restful sleep.
I think that's all I wanted to pass along.
Have a great weekend, everybody!
Good Health to All!
ScottW
What looked like a return to an increase of all symptoms turned out to be a blip. The last two days, while not great by any standard, have been better than expected.
My headache has finally retreated to a 5. I went without any pain meds yesterday for the first time in over a month. Yay!!!
The nausea is a bit better. I have not yet had a nasty episode of nausea; but it is better than it has been. Yay!!!
The edema in my legs is the same. It still has not gotten up past my knees. (At least, I haven't noticed any.)
I have seen an increase in the diarrhea episodes over the last three days. Nothing to be alarmed at; just more than what has been occurring the past few weeks.
My appetite continue to be just awful. My daily average intake is now just one meal, plus a few snacks. I am just not hungry nearly all of the time. And, most foods aren't appealing to me at all. I usually am eating simply because I need to.
Ever since my realization about my decreased water intake, I have kept a container of water in or near my hand almost the whole time I am awake. My intake has gone back up to at least 64 oz of water per day. I'm trying to drink more.
The last two nights I've actually gotten some good rest (7+ hours each night). I'm still tired all of the time, but at least I've gotten some restful sleep.
I think that's all I wanted to pass along.
Have a great weekend, everybody!
Good Health to All!
ScottW
Monday, July 19, 2010
19 July 10
(Big breath in....) Whew!
Wow, have I been feeling bad!
The worst part right now, is the headache. It's been a consistent 9 on my scale. Day, night, hungry, fed...it doesn't matter. The headache is constantly there, affecting everything else. I think this, more than anything else, really hammers at my resolve to be strong against the negativity that can sweep through my mind...Resolve I need to carry on in spite of how I feel from day to day.
As far as everything else, the nausea and all else continues as they have been the last four weeks. Not a whole lot of fun. My food intake remains poor, at best. Yesterday I ate one meal. No snacks or anything like that...just dinner. I've also been noticing that when I feel this bad, my liquid intake has been dropping as well. This is not a good thing. I certainly don't need to precipitate dehydration. This could severely damage what's left of my kidneys; so I'm trying to make a conscious, concerted effort to be sure I am drinking enough water.
I am seriously starting to consider using a cane whenever I'm walking somewhere. Over the last six weeks or so, as the disease progresses and my body weakens, I have been experiencing increasingly frequent periods of dizziness and/or imbalance when I walk or even stand for more than a few minutes. It has me extremely concerned that I'll lose my balance and have a ground level fall. I've already spoken with my PT doc, and he agrees that it might be a necessary adjunct.
That's all for today...I think...
Good Health to All!
ScottW
Wow, have I been feeling bad!
The worst part right now, is the headache. It's been a consistent 9 on my scale. Day, night, hungry, fed...it doesn't matter. The headache is constantly there, affecting everything else. I think this, more than anything else, really hammers at my resolve to be strong against the negativity that can sweep through my mind...Resolve I need to carry on in spite of how I feel from day to day.
As far as everything else, the nausea and all else continues as they have been the last four weeks. Not a whole lot of fun. My food intake remains poor, at best. Yesterday I ate one meal. No snacks or anything like that...just dinner. I've also been noticing that when I feel this bad, my liquid intake has been dropping as well. This is not a good thing. I certainly don't need to precipitate dehydration. This could severely damage what's left of my kidneys; so I'm trying to make a conscious, concerted effort to be sure I am drinking enough water.
I am seriously starting to consider using a cane whenever I'm walking somewhere. Over the last six weeks or so, as the disease progresses and my body weakens, I have been experiencing increasingly frequent periods of dizziness and/or imbalance when I walk or even stand for more than a few minutes. It has me extremely concerned that I'll lose my balance and have a ground level fall. I've already spoken with my PT doc, and he agrees that it might be a necessary adjunct.
That's all for today...I think...
Good Health to All!
ScottW
Saturday, July 17, 2010
17 July 10
Once again, the break was nice while it lasted.
I started going downhill again on Thursday evening. It started with nausea and the increasing of my headache.
Ever since, the symptoms have been sliding just like before. I spent all day yesterday feeling just awful, with mid-back pain, headache, nausea, a strong ammonia smell and taste, and, aside from liquids, eating nothing until nearly 9 PM. Then, I was up until sunrise with intense nausea.
Today I finally got the anti-emetic I've been wanting to get. It is Promethazine 25m. It is a first-generation H1 receptor antagonist of the phenothiazine chemical class used medically as an antihistamine anti-emetic. Like I stated earlier, I sure hope it helps when I have another night like last night. I'll let you know how it works!
Still have no energy--surprise there! Between the disease, the anemia and my lack of food, this is no big shocker. I don't know how much weight I've lost, but all of my clothes are starting to hang on me. In fact, I'll have to start wearing a belt because of this...something I don't want to do because anything on my abdomen (high or low) that adds pressure, causes me to experience intense nausea and extreme discomfort. I can't even rest my own hand on my abdomen!
I think that's all I wanted to pass on today. I hope that you, my readers are doing exceptionally well in your lives! Remember, if you have any questions for me, please feel free to leave a comment; I will answer back as a comment as well.
Good Health to All!
ScottW
I started going downhill again on Thursday evening. It started with nausea and the increasing of my headache.
Ever since, the symptoms have been sliding just like before. I spent all day yesterday feeling just awful, with mid-back pain, headache, nausea, a strong ammonia smell and taste, and, aside from liquids, eating nothing until nearly 9 PM. Then, I was up until sunrise with intense nausea.
Today I finally got the anti-emetic I've been wanting to get. It is Promethazine 25m. It is a first-generation H1 receptor antagonist of the phenothiazine chemical class used medically as an antihistamine anti-emetic. Like I stated earlier, I sure hope it helps when I have another night like last night. I'll let you know how it works!
Still have no energy--surprise there! Between the disease, the anemia and my lack of food, this is no big shocker. I don't know how much weight I've lost, but all of my clothes are starting to hang on me. In fact, I'll have to start wearing a belt because of this...something I don't want to do because anything on my abdomen (high or low) that adds pressure, causes me to experience intense nausea and extreme discomfort. I can't even rest my own hand on my abdomen!
I think that's all I wanted to pass on today. I hope that you, my readers are doing exceptionally well in your lives! Remember, if you have any questions for me, please feel free to leave a comment; I will answer back as a comment as well.
Good Health to All!
ScottW
Wednesday, July 14, 2010
13 July 10
I've had two days now of feeling better.
I don't know if I'm starting an up and down cycle or not, but the last two days have seen a decrease in the edema, lessened nausea, and I've had a short burst of energy. The last time I'd felt better for a few days, I ended up going downhill rapidly; so it will be interesting to see if this plays out again.
For now, here's the latest:
-The edema in my lower legs has decreased nearly to where it was before the last increase. Right now, it is at +2.
-The nausea has let up to a manageable level.(What a relief!)
-My vision is better.
-I still have the same liquid intake and output levels.
-My sleep is terrible..still. I don't know that this will be changing any time soon.
I think that's it.
During my burst of energy yesterday I got a lot of needed cleaning done. It took me several hours, with intermittent resting periods...but I got things done! (I used up all of my energy in the process, but that's OK.)
I finally remembered to call for a prescription anti-emetic. Hopefully this will help considerably the next time I have uncontrolled nausea.
That's all for today. Thanks for hanging in there with me!
On we go...
Good Health to All!
ScottW
I don't know if I'm starting an up and down cycle or not, but the last two days have seen a decrease in the edema, lessened nausea, and I've had a short burst of energy. The last time I'd felt better for a few days, I ended up going downhill rapidly; so it will be interesting to see if this plays out again.
For now, here's the latest:
-The edema in my lower legs has decreased nearly to where it was before the last increase. Right now, it is at +2.
-The nausea has let up to a manageable level.(What a relief!)
-My vision is better.
-I still have the same liquid intake and output levels.
-My sleep is terrible..still. I don't know that this will be changing any time soon.
I think that's it.
During my burst of energy yesterday I got a lot of needed cleaning done. It took me several hours, with intermittent resting periods...but I got things done! (I used up all of my energy in the process, but that's OK.)
I finally remembered to call for a prescription anti-emetic. Hopefully this will help considerably the next time I have uncontrolled nausea.
That's all for today. Thanks for hanging in there with me!
On we go...
Good Health to All!
ScottW
Saturday, July 10, 2010
10 July 10
Two more days of the very same.
I awoke today feeling better; to the point of thinking the worst was over. However, as the day has progressed, so have the symptoms. In a brief moment of weakness, let me just say that this sucks!
All right...on to what's been happening. Well, first, the edema in my legs has increased at least 33% over the last two days. I am able to leave +5 (+) indents on my feet, ankles, lower leg and knees. This is NOT a good thing. My headache is currently at about a 6 with pain meds. Not good. I have eaten just two meals in the last four days. Why? It kinda goes like this: I'm nauseated, so I don't want to eat; not even a snack. When I do eat, I get nauseated, which doesn't let up for a couple of hours after eating. Most of the time, I'm not even hungry because of the nausea. Sounds like fun, doesn't it?
Anyway, I continue to be tired all the time--even after sleeping 5-7 hours. My body continues to just feel blah. You know, no energy, no rush of adrenaline to get me going, etc. Just blah. I try to push through it as best I can. Some days I am successful, and do work around the house. Other days, I get nothing accomplished. Speaking of this one, ever since I started feeling this way over two weeks ago (?), I haven't been on a single walk. Again, I just don't have the energy.
With the edema increase I am paying attention to my heart and lungs. One of the things the edema will do is cause problems in both vital organs. I certainly don't want fluid build-up in my lungs or around my heart, or have my heart working too hard because of increased vascular pressure. If the edema continues to worsen, I will be calling my nephrologist in short order.
My urinary output continues to be far less than my fluid intake (this is with the daily diuretic use). There is no evidence of kidney stones, UTI's, or blood in my urine. I don't have trouble urinating, or anything else. I really have been fortunate in this area, thus far.
As time goes on my short term memory is getting worse. My wife has to sometimes remind me to take meds, make phone calls, ask a question about something, etc. To say this is frustrating for me would be an understatement. Also, as I've been feeling worse, my voice has inexplicably become raspy and weak. This one could simply be happening because of not feeling well over an extended period of time.
I think that's all I wanted to mention today--I don't remember for sure.
Good Health to All!
ScottW
I awoke today feeling better; to the point of thinking the worst was over. However, as the day has progressed, so have the symptoms. In a brief moment of weakness, let me just say that this sucks!
All right...on to what's been happening. Well, first, the edema in my legs has increased at least 33% over the last two days. I am able to leave +5 (+) indents on my feet, ankles, lower leg and knees. This is NOT a good thing. My headache is currently at about a 6 with pain meds. Not good. I have eaten just two meals in the last four days. Why? It kinda goes like this: I'm nauseated, so I don't want to eat; not even a snack. When I do eat, I get nauseated, which doesn't let up for a couple of hours after eating. Most of the time, I'm not even hungry because of the nausea. Sounds like fun, doesn't it?
Anyway, I continue to be tired all the time--even after sleeping 5-7 hours. My body continues to just feel blah. You know, no energy, no rush of adrenaline to get me going, etc. Just blah. I try to push through it as best I can. Some days I am successful, and do work around the house. Other days, I get nothing accomplished. Speaking of this one, ever since I started feeling this way over two weeks ago (?), I haven't been on a single walk. Again, I just don't have the energy.
With the edema increase I am paying attention to my heart and lungs. One of the things the edema will do is cause problems in both vital organs. I certainly don't want fluid build-up in my lungs or around my heart, or have my heart working too hard because of increased vascular pressure. If the edema continues to worsen, I will be calling my nephrologist in short order.
My urinary output continues to be far less than my fluid intake (this is with the daily diuretic use). There is no evidence of kidney stones, UTI's, or blood in my urine. I don't have trouble urinating, or anything else. I really have been fortunate in this area, thus far.
As time goes on my short term memory is getting worse. My wife has to sometimes remind me to take meds, make phone calls, ask a question about something, etc. To say this is frustrating for me would be an understatement. Also, as I've been feeling worse, my voice has inexplicably become raspy and weak. This one could simply be happening because of not feeling well over an extended period of time.
I think that's all I wanted to mention today--I don't remember for sure.
Good Health to All!
ScottW
Friday, July 9, 2010
08 July 10
It was a nice break, while it lasted. C'est La Vie.
After my slight respite that lasted through yesterday afternoon, I'm feeling horrible once again. I awoke this morning feeling worse than yesterday, and it has gradually built right through this evening. I have done little today, eaten just about nothing, and am feeling like I'll throw up at any time. No rhyme or reason for it; this is just how I'm feeling.
So let's see...The nausea is out of control, I'm weak like I have the flu (I don't, by the way), I can actually taste ammonia today, the area over my kidneys hurts more, my eyes are a bit out of focus today (this one seems to repeat itself anytime my symptoms increase), and my headache is around a 7 on my scale. About the only thing not happening is diarrhea...Thank Goodness for that! So, a terrible day.
That's all I'm writing for this entry because I'm feeling so awful.
Have a much better tomorrow than my today has been!
Good Health to All!
ScottW
After my slight respite that lasted through yesterday afternoon, I'm feeling horrible once again. I awoke this morning feeling worse than yesterday, and it has gradually built right through this evening. I have done little today, eaten just about nothing, and am feeling like I'll throw up at any time. No rhyme or reason for it; this is just how I'm feeling.
So let's see...The nausea is out of control, I'm weak like I have the flu (I don't, by the way), I can actually taste ammonia today, the area over my kidneys hurts more, my eyes are a bit out of focus today (this one seems to repeat itself anytime my symptoms increase), and my headache is around a 7 on my scale. About the only thing not happening is diarrhea...Thank Goodness for that! So, a terrible day.
That's all I'm writing for this entry because I'm feeling so awful.
Have a much better tomorrow than my today has been!
Good Health to All!
ScottW
Monday, July 5, 2010
05 July 10
A bit better the last two days.
Yesterday I saw an easing of the terrible symptoms I'd been experiencing for over a week. Today, things are a bit better than yesterday; though I feel like I could easily go there again. I haven't been sick, as in feverish, stomach flu, etc. The best way to describe the last nine days would just be, an intense, huge increase of all symptoms. Everything was amplified. I hope I don't go through that very often.
Today, though I'm feeling better (so to speak), my whole body is just blah. No energy physically or mentally. Just, blah.
That's all for this entry.
Good Health to All!
ScottW
Yesterday I saw an easing of the terrible symptoms I'd been experiencing for over a week. Today, things are a bit better than yesterday; though I feel like I could easily go there again. I haven't been sick, as in feverish, stomach flu, etc. The best way to describe the last nine days would just be, an intense, huge increase of all symptoms. Everything was amplified. I hope I don't go through that very often.
Today, though I'm feeling better (so to speak), my whole body is just blah. No energy physically or mentally. Just, blah.
That's all for this entry.
Good Health to All!
ScottW
Saturday, July 3, 2010
03 July 10
The last five days [since my last entry] have been miserable.
I don't know what has changed (or why), but I have been feeling almost exactly as I had described in my 28 June entry. My headache has been almost uncontrollable 24/7. My mid-back pain (over the kidneys) has been painful 24/7. The nausea has been almost non-stop 24/7. My appetite has been literally next to nothing for a week now, and the diarrhea is intermittent. The ammonia I smell is stronger, and it is putting a rather foul taste in my mouth all day, every day. I am more tired than ever; even after a good night of sleep. I am mostly sitting at home because I don't have the strength or energy to go out and about.
What a week.
I don't know if how I feel is normal, or *atypical for PCKD patients. I haven't read anything that insinuates "normal" as far as how patients feel day to day. Knowing my body, I am most likely *atypical from most patients; but that is merely an assumption on my part.
My urine flow remains at its now normal volume. No further decreases. The edema in my legs seems to be static for now. Though my legs and feet itch from time to time, I don't see any visible increases in the edema.
Remember a few months ago when I was telling you about my hair? I had my haircut this past Wednesday, and my longtime hairdresser states that my once wavy hair is now straight. I'm not losing any, mind you; and it's as thick as ever...but the curl/waviness I've had my entire life is suddenly gone. I can only attribute this to either the meds, the disease, or both. Genetic history tells me I should have thick, wavy hair until the day die (in my 90's, I hope). So, this is definitely odd.
I've noticed that when I eat (well, in those rare times I actually have a "meal") that I am growing increasingly sensitive to the taste of salt. I've already had a decreased sodium intake for about 35 years. One day, as a teenager, I decided to see what food tasted like without adding salt to it; and I liked it! So, aside from french fries (my one and only salt indulgence), I haven't added salt to anything in 3.5 decades. Anyway, as the disease has progressed, I can taste even small amounts of salt that are naturally in most foods. This is making a lot of foods unappetizing.
Well, that's all I've got for today.
I hope all of you, my readers, have a fun, safe, and completely enjoyable Independence Day celebration!
Good Health to All!
ScottW
*Atypical: "Unusual from an established norm."
I don't know what has changed (or why), but I have been feeling almost exactly as I had described in my 28 June entry. My headache has been almost uncontrollable 24/7. My mid-back pain (over the kidneys) has been painful 24/7. The nausea has been almost non-stop 24/7. My appetite has been literally next to nothing for a week now, and the diarrhea is intermittent. The ammonia I smell is stronger, and it is putting a rather foul taste in my mouth all day, every day. I am more tired than ever; even after a good night of sleep. I am mostly sitting at home because I don't have the strength or energy to go out and about.
What a week.
I don't know if how I feel is normal, or *atypical for PCKD patients. I haven't read anything that insinuates "normal" as far as how patients feel day to day. Knowing my body, I am most likely *atypical from most patients; but that is merely an assumption on my part.
My urine flow remains at its now normal volume. No further decreases. The edema in my legs seems to be static for now. Though my legs and feet itch from time to time, I don't see any visible increases in the edema.
Remember a few months ago when I was telling you about my hair? I had my haircut this past Wednesday, and my longtime hairdresser states that my once wavy hair is now straight. I'm not losing any, mind you; and it's as thick as ever...but the curl/waviness I've had my entire life is suddenly gone. I can only attribute this to either the meds, the disease, or both. Genetic history tells me I should have thick, wavy hair until the day die (in my 90's, I hope). So, this is definitely odd.
I've noticed that when I eat (well, in those rare times I actually have a "meal") that I am growing increasingly sensitive to the taste of salt. I've already had a decreased sodium intake for about 35 years. One day, as a teenager, I decided to see what food tasted like without adding salt to it; and I liked it! So, aside from french fries (my one and only salt indulgence), I haven't added salt to anything in 3.5 decades. Anyway, as the disease has progressed, I can taste even small amounts of salt that are naturally in most foods. This is making a lot of foods unappetizing.
Well, that's all I've got for today.
I hope all of you, my readers, have a fun, safe, and completely enjoyable Independence Day celebration!
Good Health to All!
ScottW
*Atypical: "Unusual from an established norm."
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