Up and down since my last entry on Sunday.
I finished off Sunday feeling as lousy as I had been all day. On awaking Monday I was feeling a bit better, and the edema in my legs had reduced around 50%. Of course, the headache was untouched; but at least I felt a little better overall. This continued throughout the day.
Tuesday I awoke feeling even better than I had on Monday. My feet looked like feet again, the nausea was minimal, and I actually felt OK. So my day went well; and it was highlighted by a magnificent thundershower that dumped around 1.5 inches of rain. I love the smell of rain and of lightning. I stood on our deck just listening to the storm, taking in the smells and the sounds. It was a good day.
That all changed however, when I was awoken at 420a with intense nausea. I took a full dose of the Promethazine and had my usual grueling 25 minute wait for it (the anti-emetic) to kick in. Plus, I had a ton of vertigo happening, which certainly didn't help my stomach. Once the med kicked in, I experienced a slow reduction of nausea, and a slow retreat from the vertigo; and I was finally able to sleep about an hour after I first awoke.
Because of the Promethazine, I slept until 115p...at least I got plenty of sleep.
So far today I feel alright. My head hurts...a lot. The nausea is gone, but I feel as if it is just waiting to burst out again. Of course I am groggy as well because of the anti-emetic; but at least I don't feel like I did early this morning!
That's all for now. Let's hope I have a better few days upcoming.
Good Health to All!
ScottW
Wednesday, July 27, 2011
Sunday, July 24, 2011
24 July 2011
It's been a lousy few days.
Since my last entry [on the 19th], my nausea has increased and stayed there. Then last night it elevated again and has yet to decrease. I feel awful today, and I need to put on a smiling face for the celebrations of my son's 25th birthday; as well as playing with grand kids, of course. (I literally just now found out that there'll be a houseful of people coming in 2.5 hours...yay...)
My headache has been just barely under control. T3 use has increased to over four per day. One at a time hasn't been getting past the breakthrough headache. Just nasty. Luckily, taking one followed by another an hour later seems to keep things [barely] under control for about the normal 6-7 hours.
My appetite remains poor. Plus, any hunger pangs I get are rapidly turned into nauseous waves that really hammer my stomach. As a result, I am continuing to take Promethazine more frequently than I'd like to. (At least I've got the anti-emetic. Otherwise, life would be no fun!)
My sleep has been poor. I've been getting solid sleep, but I can't seem to get more than six hours per night. Yes, I continue to take the long naps; but that hasn't been an issue with my nightly sleep length up until this past week or so.
Edema is continuing to be bad in my legs, and is nearly constant in my arms and hands now. The last few days my feet have looked as if they belong on a Hobbit instead of me. Rebound time in my feet has averaged +15, and I can usually press in a dimple of around 1/3 inch deep. Color return has been at least +3. As I reported before, elevating my legs actually hurts my calves due to (I believe) edemic pressure. I still elevate my legs, but for briefer periods of time.
The vertigo continues. Any optical over-stimulation triggers it without warning. I still awaken occasionally to the room spinning wildly, and closing my eyes only intensifies the sensation. I still use--and rely on--the cane to keep me vertical anytime I'm away from the house. Additionally, lots of vertigo also triggers additional nausea (on top of what I already have). Weeeee!
Remember the problem I was having [because of all my meds] with flaking skin on my face? Well, after taking my docs advice on a solution, I am happy to report as a follow-up that the flaking seems to be completely gone. I last reported it as being under control; but now, weeks later, I see no evidence of the flaking. I figure so long as I continue the same regimen and product, that it will remain controlled.
That's all I can think of for today. I'm going to go lie down and rest awhile before the festivities begin.
Good Health to All!
ScottW
Since my last entry [on the 19th], my nausea has increased and stayed there. Then last night it elevated again and has yet to decrease. I feel awful today, and I need to put on a smiling face for the celebrations of my son's 25th birthday; as well as playing with grand kids, of course. (I literally just now found out that there'll be a houseful of people coming in 2.5 hours...yay...)
My headache has been just barely under control. T3 use has increased to over four per day. One at a time hasn't been getting past the breakthrough headache. Just nasty. Luckily, taking one followed by another an hour later seems to keep things [barely] under control for about the normal 6-7 hours.
My appetite remains poor. Plus, any hunger pangs I get are rapidly turned into nauseous waves that really hammer my stomach. As a result, I am continuing to take Promethazine more frequently than I'd like to. (At least I've got the anti-emetic. Otherwise, life would be no fun!)
My sleep has been poor. I've been getting solid sleep, but I can't seem to get more than six hours per night. Yes, I continue to take the long naps; but that hasn't been an issue with my nightly sleep length up until this past week or so.
Edema is continuing to be bad in my legs, and is nearly constant in my arms and hands now. The last few days my feet have looked as if they belong on a Hobbit instead of me. Rebound time in my feet has averaged +15, and I can usually press in a dimple of around 1/3 inch deep. Color return has been at least +3. As I reported before, elevating my legs actually hurts my calves due to (I believe) edemic pressure. I still elevate my legs, but for briefer periods of time.
The vertigo continues. Any optical over-stimulation triggers it without warning. I still awaken occasionally to the room spinning wildly, and closing my eyes only intensifies the sensation. I still use--and rely on--the cane to keep me vertical anytime I'm away from the house. Additionally, lots of vertigo also triggers additional nausea (on top of what I already have). Weeeee!
Remember the problem I was having [because of all my meds] with flaking skin on my face? Well, after taking my docs advice on a solution, I am happy to report as a follow-up that the flaking seems to be completely gone. I last reported it as being under control; but now, weeks later, I see no evidence of the flaking. I figure so long as I continue the same regimen and product, that it will remain controlled.
That's all I can think of for today. I'm going to go lie down and rest awhile before the festivities begin.
Good Health to All!
ScottW
Tuesday, July 19, 2011
19 July 2011
I haven't done an entry in eight days due to a visit from out of town relatives; and my office was turned into a bedroom. So, I'll just do a summation since I don't remember a lot of specifics...
Things have been up and down. I'll do OK, then go downhill for a few days, and so forth.
The nausea has been consistent. I've been taking regular small doses of the Promethazine just to stay on top of the ill feeling. Though the small doses don't take the nausea away, at least I'm not sleeping hours a day [because of taking full doses of the anti-emetic], and feeling groggy the rest of the time.
My headache has gone up...again...from a solid 9 to a steady 9.5. Once again T3's are barely keeping it in check. I've also been having an increase in the sudden sharp pains [along with this latest increase]. As far as I'm aware I am not doing a thing to precipitate these pains.
The edema in my legs has been constant and elevated. It is clearly visible to others, and it has been noticed in my hands again. As has been the pattern, the edema seems to be worse on the R side.
Ammonia on my breath has been extremely evident to myself and others. I've had a number of days that is is so intense that I'm constantly waving my hand in front of my face just to try (unsuccessfully) to keep it away from my nose.
My appetite has been as bad a ever. I'm still getting my one meal per day; but the amount is never consistent. The same goes for the snacks I try to eat from day to day.
I try to drink a full glass of water every morning. I don't always get it down, but at least I'm taking in clean, clear water on a daily basis.
As usual, my eyesight gets better and worse--depending on how I'm feeling from day to day.
That's all I can think of. I'll continue to keep you updated.
Good Health to All!
ScottW
Things have been up and down. I'll do OK, then go downhill for a few days, and so forth.
The nausea has been consistent. I've been taking regular small doses of the Promethazine just to stay on top of the ill feeling. Though the small doses don't take the nausea away, at least I'm not sleeping hours a day [because of taking full doses of the anti-emetic], and feeling groggy the rest of the time.
My headache has gone up...again...from a solid 9 to a steady 9.5. Once again T3's are barely keeping it in check. I've also been having an increase in the sudden sharp pains [along with this latest increase]. As far as I'm aware I am not doing a thing to precipitate these pains.
The edema in my legs has been constant and elevated. It is clearly visible to others, and it has been noticed in my hands again. As has been the pattern, the edema seems to be worse on the R side.
Ammonia on my breath has been extremely evident to myself and others. I've had a number of days that is is so intense that I'm constantly waving my hand in front of my face just to try (unsuccessfully) to keep it away from my nose.
My appetite has been as bad a ever. I'm still getting my one meal per day; but the amount is never consistent. The same goes for the snacks I try to eat from day to day.
I try to drink a full glass of water every morning. I don't always get it down, but at least I'm taking in clean, clear water on a daily basis.
As usual, my eyesight gets better and worse--depending on how I'm feeling from day to day.
That's all I can think of. I'll continue to keep you updated.
Good Health to All!
ScottW
Monday, July 11, 2011
11 July 2011
Things have been steadily poor the last four days.
I've had a consistent uptick in nausea that has yet to alleviate. Even with Promethazine, the nausea has gotten severe. For instance, on Friday evening I went out for a small dinner and grocery shopping. Right after I finished my meal I had nausea just slam me for no apparent reason. I decided to do the shopping anyhow, which turned out to be a huge mistake. The nausea became even worse, and I cut short my shopping and just went home. I took more of the anti-emetic and it still took nearly an hour to calm things down.
My feet have looked terrible these past days as edema has been constant. As per my personal pattern, I awaken with feet and legs that are slightly swollen; but throughout the day become steadily worse until my feet look awful, and I have edema up to mid-thigh and in my lower arms and hands. I've got lots of bruising around both ankles due to the edemic pressure. My only saving grace there is the times when the edema remains low giving the tissue around my ankles time to heal.
The headache goes on, and on, and on...and with amazing consistency in strength and intensity. This November (mid, I think) it will have been two years since the headache began. I'm just grateful that my doc gave me something to combat the damned thing.
The vertigo remains as it has been. There is still no pattern to it. I always use my cane outside of the house, and it always saves me from ground-level falls. This was especially true on Friday night when I had that sudden onset of severe nausea. The vertigo kicked into high gear and I would certainly have fallen if the cane was not in my hand.
The other normal S/S's of blurry vision, body aches, long naps, exhaustion, smelling ammonia, poor appetite etc...These all remain and are an issue every day.
That's all for today. My brain is a bit fuzzy, I'm exhausted, and I just can't concentrate as much as I need in order to do a good entry.
Good Health to All!
ScottW
I've had a consistent uptick in nausea that has yet to alleviate. Even with Promethazine, the nausea has gotten severe. For instance, on Friday evening I went out for a small dinner and grocery shopping. Right after I finished my meal I had nausea just slam me for no apparent reason. I decided to do the shopping anyhow, which turned out to be a huge mistake. The nausea became even worse, and I cut short my shopping and just went home. I took more of the anti-emetic and it still took nearly an hour to calm things down.
My feet have looked terrible these past days as edema has been constant. As per my personal pattern, I awaken with feet and legs that are slightly swollen; but throughout the day become steadily worse until my feet look awful, and I have edema up to mid-thigh and in my lower arms and hands. I've got lots of bruising around both ankles due to the edemic pressure. My only saving grace there is the times when the edema remains low giving the tissue around my ankles time to heal.
The headache goes on, and on, and on...and with amazing consistency in strength and intensity. This November (mid, I think) it will have been two years since the headache began. I'm just grateful that my doc gave me something to combat the damned thing.
The vertigo remains as it has been. There is still no pattern to it. I always use my cane outside of the house, and it always saves me from ground-level falls. This was especially true on Friday night when I had that sudden onset of severe nausea. The vertigo kicked into high gear and I would certainly have fallen if the cane was not in my hand.
The other normal S/S's of blurry vision, body aches, long naps, exhaustion, smelling ammonia, poor appetite etc...These all remain and are an issue every day.
That's all for today. My brain is a bit fuzzy, I'm exhausted, and I just can't concentrate as much as I need in order to do a good entry.
Good Health to All!
ScottW
Thursday, July 7, 2011
07 July 2011
The Latest Nephrologist Visit...
My Lungs and Heart remain clear of any edemic S/S's; my Liver is clear; there are no other complications or associated conditions that could creep up on me. The PCKD continues to be the sole issue. (YAY!!!!)
My Lab Results:
GFR--17.6% total kidney function ( <0.6> )
Hematocrit--33.3 ( +.80 ) NR 42-52
BUN--43.0 NR 5-26
Creatinine--3.9 NR 0.5-1.5
Calcium--10.3 NR 8.5-10.6
Phosphorus--3.7 NR 2.5-4.5
Albumin--4.8 NR 3.5-4.8
WBC's--4.96 NR 4.5-11.0
RBC's--4.15 NR 4.7-6.1
*I don't have corroborative numbers on hand. Suffice it to say that, aside from the GFR drop, I am otherwise stable.
So, all of these numbers mean that I will continue to feel worse as my kidney function slowly decreases. Unless I have a sudden sharp increase of S/S's (Signs and Symptoms), or experience things such as constant emesis, blood in my urine, severe sustained edema etc, I will continue on as I have. No, it certainly isn't fun; but it is the process, and I simply have to continue the journey through it.
That's all for now.
Good Health to All!
ScottW
My Lungs and Heart remain clear of any edemic S/S's; my Liver is clear; there are no other complications or associated conditions that could creep up on me. The PCKD continues to be the sole issue. (YAY!!!!)
My Lab Results:
GFR--17.6% total kidney function ( <0.6> )
Hematocrit--33.3 ( +.80 ) NR 42-52
BUN--43.0 NR 5-26
Creatinine--3.9 NR 0.5-1.5
Calcium--10.3 NR 8.5-10.6
Phosphorus--3.7 NR 2.5-4.5
Albumin--4.8 NR 3.5-4.8
WBC's--4.96 NR 4.5-11.0
RBC's--4.15 NR 4.7-6.1
*I don't have corroborative numbers on hand. Suffice it to say that, aside from the GFR drop, I am otherwise stable.
So, all of these numbers mean that I will continue to feel worse as my kidney function slowly decreases. Unless I have a sudden sharp increase of S/S's (Signs and Symptoms), or experience things such as constant emesis, blood in my urine, severe sustained edema etc, I will continue on as I have. No, it certainly isn't fun; but it is the process, and I simply have to continue the journey through it.
That's all for now.
Good Health to All!
ScottW
Tuesday, July 5, 2011
05 July 2011
The last three days have not been good...or even OK.
Saturday found me with lots of nausea. I took two doses of Promethazine (anti-emetic); one in the early morning, and one in the evening. Because of the first dose I slept until nearly three o'clock in the afternoon. The rest of my day was groggy, and I didn't do much besides battle the ever-present headache, and take it easy all day. I had to take my second dose of Promethazine in the evening due to the persistent nausea. As before, the nausea once again got really intense before the anti-emetic kicked in. My sleep on Saturday night was very restless in spite of the meds.
Sunday found me dealing with more of the same all day long. Plus, I felt incredibly exhausted like I'd just gone out and worked myself until I had no more energy. I also had a ton of vertigo plaguing me all day. Lots of wall hugging most of Sunday. Because of this I only ate once on Sunday, at around 7p. As is now usual, the food I was eating upset my stomach as soon as I started eating. I've learned to just power through the nausea [when eating] so I get food in my body. Don't get me wrong...I feel every wave of nausea that washes over me when eating; which isn't any fun in any connotation. It's just vital that my body has fuel to burn.
Yesterday, the Fourth of July, was really bad. I again had to take anti-emetic early in the morning (around 6a) because nausea woke me up...again. I slept until nearly noon, and subsequently felt terrible all day. Grogginess was non-stop, and the nausea was constantly present. So, I took a half-dose of Promethazine which only intensified the groggy feeling. As a result, I slept off and on literally all day. I ate nothing at all (not even snacks)because I wasn't hungry--not that I felt like eating anyway... When I was awake I had lots of vertigo. I only just stopped myself from falling a number of times throughout the day. Plus, my legs had lots of edema and were very painful to walk on, which certainly didn't help my ability to balance. All in all, yesterday was pretty sucky!
I finally went to bed at 930p after sleeping in my recliner for most of the afternoon. I was awoken two hours later with more nausea; so I took more Promethazine, and then slept until 830a today.
So far today I have felt better; well, at least relatively. At least I haven't taken any anti-emetic yet. But, any food I've eaten has upset my stomach more than usual. C'est La Vie. At least I feel better than yesterday...so far.
I've got my nephrologist appointment tomorrow. I'll have the results from last weeks' lab draws, as well as anything that is discussed. I'll tell you all about the latest.
Good Health to All!
ScottW
Saturday found me with lots of nausea. I took two doses of Promethazine (anti-emetic); one in the early morning, and one in the evening. Because of the first dose I slept until nearly three o'clock in the afternoon. The rest of my day was groggy, and I didn't do much besides battle the ever-present headache, and take it easy all day. I had to take my second dose of Promethazine in the evening due to the persistent nausea. As before, the nausea once again got really intense before the anti-emetic kicked in. My sleep on Saturday night was very restless in spite of the meds.
Sunday found me dealing with more of the same all day long. Plus, I felt incredibly exhausted like I'd just gone out and worked myself until I had no more energy. I also had a ton of vertigo plaguing me all day. Lots of wall hugging most of Sunday. Because of this I only ate once on Sunday, at around 7p. As is now usual, the food I was eating upset my stomach as soon as I started eating. I've learned to just power through the nausea [when eating] so I get food in my body. Don't get me wrong...I feel every wave of nausea that washes over me when eating; which isn't any fun in any connotation. It's just vital that my body has fuel to burn.
Yesterday, the Fourth of July, was really bad. I again had to take anti-emetic early in the morning (around 6a) because nausea woke me up...again. I slept until nearly noon, and subsequently felt terrible all day. Grogginess was non-stop, and the nausea was constantly present. So, I took a half-dose of Promethazine which only intensified the groggy feeling. As a result, I slept off and on literally all day. I ate nothing at all (not even snacks)because I wasn't hungry--not that I felt like eating anyway... When I was awake I had lots of vertigo. I only just stopped myself from falling a number of times throughout the day. Plus, my legs had lots of edema and were very painful to walk on, which certainly didn't help my ability to balance. All in all, yesterday was pretty sucky!
I finally went to bed at 930p after sleeping in my recliner for most of the afternoon. I was awoken two hours later with more nausea; so I took more Promethazine, and then slept until 830a today.
So far today I have felt better; well, at least relatively. At least I haven't taken any anti-emetic yet. But, any food I've eaten has upset my stomach more than usual. C'est La Vie. At least I feel better than yesterday...so far.
I've got my nephrologist appointment tomorrow. I'll have the results from last weeks' lab draws, as well as anything that is discussed. I'll tell you all about the latest.
Good Health to All!
ScottW
Saturday, July 2, 2011
01 July 2011
I had my blood drawn yesterday in advance of the next visit with my nephrologist.
The blood looked a bit dark to me (and the phlebotomist, too). However, her cannulation was 100% pain free! Nice job! I even commented on what a great stick she did; which was appreciated.
Anyway, I'll have the results next Wednesday afternoon. Depending on what is found, and after discussions with my doc, I might very well decide to start dialysis. I'll let you know.
The last three days have found me feeling from Ick, all the way to terrible. Continuing to have lots of nearly uncontrollable nausea. Meds are constantly upsetting my stomach in spite of taking Zantac twice a day. Plus, food is generally upsetting my stomach as well. It's a classic catch 22--I need to eat so I don't get overly nauseated; but if I eat, I become nauseated. Lovely. Luckily, my stomach does settle down after a while (between 20 mins to and hour...sometimes longer).
My headache has been elevated since yesterday. On the way home from doing my labs my head began hurting intensely. By the time I got home it was at a firm 10. One T3 didn't touch the pain, so another was used. Even then it took almost forty five minutes to get comfortable. Not fun!! I spent the remainder of the evening on this same level of T3's. I awoke today with the headache back to it's now normal 9.5. So far, I've been able to control the pain.
The mid-back pain I experienced last week has subsided to its usual level. I don't know why it was so painful last week; but I'll tell my doctor about it on Wednesday.
The edema, vertigo, smell of ammonia, poor eyesight and long naps all continue as before. Overall, I'd say that my general well-being has decreased significantly since this whole thing started. I continue to keep my mind in a good place; but my body is definitely another story. As time goes on my exhaustion gets worse, the bags and dark circles under my eyes increase, and my strength is depleted rapidly each day. I am becoming home bound because of everything. I try and get out a few times a week; but I am spending most of my time in the house.
I continue to play games, write my blog, write letters and work on personal projects that keep my brain occupied and engaged and keep it away from discouragement and other nastily negative things. I've had friends tell me that I'm a hero for being so strong. I don't personally feel that I am a hero. I've commented frequently that I am only doing what I have to in order to get through this. Without focus on my future and strength from others who buoy me constantly, I seriously doubt my ability to be strong. But, mental strength is exactly what I need every day--sometimes every minute--to keep going. To that end, I express my thanks to those around me whenever I have the chance. Their words, love and gifts lift my heart, and bolster my spirit. I could not do this without the support of many others.
So, to those out there who are my friends I say, "Thank you for everything you do on my behalf! I literally could not do any of this without you!"
Good Health to All!
ScottW
The blood looked a bit dark to me (and the phlebotomist, too). However, her cannulation was 100% pain free! Nice job! I even commented on what a great stick she did; which was appreciated.
Anyway, I'll have the results next Wednesday afternoon. Depending on what is found, and after discussions with my doc, I might very well decide to start dialysis. I'll let you know.
The last three days have found me feeling from Ick, all the way to terrible. Continuing to have lots of nearly uncontrollable nausea. Meds are constantly upsetting my stomach in spite of taking Zantac twice a day. Plus, food is generally upsetting my stomach as well. It's a classic catch 22--I need to eat so I don't get overly nauseated; but if I eat, I become nauseated. Lovely. Luckily, my stomach does settle down after a while (between 20 mins to and hour...sometimes longer).
My headache has been elevated since yesterday. On the way home from doing my labs my head began hurting intensely. By the time I got home it was at a firm 10. One T3 didn't touch the pain, so another was used. Even then it took almost forty five minutes to get comfortable. Not fun!! I spent the remainder of the evening on this same level of T3's. I awoke today with the headache back to it's now normal 9.5. So far, I've been able to control the pain.
The mid-back pain I experienced last week has subsided to its usual level. I don't know why it was so painful last week; but I'll tell my doctor about it on Wednesday.
The edema, vertigo, smell of ammonia, poor eyesight and long naps all continue as before. Overall, I'd say that my general well-being has decreased significantly since this whole thing started. I continue to keep my mind in a good place; but my body is definitely another story. As time goes on my exhaustion gets worse, the bags and dark circles under my eyes increase, and my strength is depleted rapidly each day. I am becoming home bound because of everything. I try and get out a few times a week; but I am spending most of my time in the house.
I continue to play games, write my blog, write letters and work on personal projects that keep my brain occupied and engaged and keep it away from discouragement and other nastily negative things. I've had friends tell me that I'm a hero for being so strong. I don't personally feel that I am a hero. I've commented frequently that I am only doing what I have to in order to get through this. Without focus on my future and strength from others who buoy me constantly, I seriously doubt my ability to be strong. But, mental strength is exactly what I need every day--sometimes every minute--to keep going. To that end, I express my thanks to those around me whenever I have the chance. Their words, love and gifts lift my heart, and bolster my spirit. I could not do this without the support of many others.
So, to those out there who are my friends I say, "Thank you for everything you do on my behalf! I literally could not do any of this without you!"
Good Health to All!
ScottW
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