My apologies for not writing on here.
The last few days have been challenging, to say the least. I've been feeling awful in just about every way I can. I'm not sick, as in, having the flu or anything. I've just been having a huge uptick in my day to day symptomology. Friday and Saturday weren't too bad; thought my headache was stronger, I was more nauseated than usual, my kidney areas ached, and I was eating less than usual.
Sunday, everything increased dramatically. I slept very poorly on Saturday night, awoke with the same symptomolgy from Saturday, which then increased as the day wore on. I ate almost nothing all day, the nausea was completely uncontrollable, my head felt like it would pop (about a 9), my back was really hurting, I had more diarrhea than usual, and to say I was miserable would be a vast understatement. Today has been more of the same. As of this writing, I've eaten two pieces of toast all day...that's it. Not a fun day, in any sense of the word.
Tomorrow I've got my physical therapy. Maybe it will help a little.
That's all I've got for today--simply because I just don't feel like writing any more tonight.
Good Health to All!
ScottW
Monday, June 28, 2010
Wednesday, June 23, 2010
23 June 10
Well, I went to see my PT doc yesterday.
We did the usual treatments (E-Stim, Acupuncture w/microcurrent, Chiropractic adjustment), and he palpated my spinal coumn to check for any misalignment anywhere that might cause nerve innervation over the kidney areas. All of his testing showed nothing unusual.
Lots of nausea yesterday, and into this morning. I was kept awake until around 6a today with it. I finally got so tired I slept anyway. I awoke today feeling better; though I have almost zero energy. I didn't do my daily walk because of this. Hoping tomorrow will be better.
That's all I've got for today...fairly cut and dry.
Good Health to All!
ScottW
We did the usual treatments (E-Stim, Acupuncture w/microcurrent, Chiropractic adjustment), and he palpated my spinal coumn to check for any misalignment anywhere that might cause nerve innervation over the kidney areas. All of his testing showed nothing unusual.
Lots of nausea yesterday, and into this morning. I was kept awake until around 6a today with it. I finally got so tired I slept anyway. I awoke today feeling better; though I have almost zero energy. I didn't do my daily walk because of this. Hoping tomorrow will be better.
That's all I've got for today...fairly cut and dry.
Good Health to All!
ScottW
Monday, June 21, 2010
21 June 10
A HUGE surprise today!
My bloodwork came back nearly unchanged from two months ago. My kidney function remains at approximately 21%. That is an unusual development in that I have been losing around 1% a month since first diagnosis.
Also, my BP is awesome at 120/70 (definitely good news!).
My Createnine and Protein levels have remained constant, too.
I lost 16 pounds since April--though certainly not in a healthy way.
So, now I get to wait two more months until my next appointment. No scheduling for fistula implant, or anything else. I will continue on with the pharmaceuticals as I have been.
I asked about why my kidneys have been hurting. My doc stated it is not the kidneys themselves (they have no nerves!). It is either my back, or it might be cysts that are abnormally large pressing on something. Only a CT scan would be able to tell us if that was the case. I'll have my PT doc do a good exam on my back to see if that is indeed the cause.
That's all the latest. At least I now can focus on holding steady for the next two months. The nausea and everything else are all a part of the disease, so I'm sure I will need to continue managing those symptoms as well.
I will continue keeping you updated.
Good Health to All!
ScottW
My bloodwork came back nearly unchanged from two months ago. My kidney function remains at approximately 21%. That is an unusual development in that I have been losing around 1% a month since first diagnosis.
Also, my BP is awesome at 120/70 (definitely good news!).
My Createnine and Protein levels have remained constant, too.
I lost 16 pounds since April--though certainly not in a healthy way.
So, now I get to wait two more months until my next appointment. No scheduling for fistula implant, or anything else. I will continue on with the pharmaceuticals as I have been.
I asked about why my kidneys have been hurting. My doc stated it is not the kidneys themselves (they have no nerves!). It is either my back, or it might be cysts that are abnormally large pressing on something. Only a CT scan would be able to tell us if that was the case. I'll have my PT doc do a good exam on my back to see if that is indeed the cause.
That's all the latest. At least I now can focus on holding steady for the next two months. The nausea and everything else are all a part of the disease, so I'm sure I will need to continue managing those symptoms as well.
I will continue keeping you updated.
Good Health to All!
ScottW
Saturday, June 19, 2010
19 June 10
Yesterday was a terrible day!
The nausea and headache were both about normal, but my kidneys were terribly painful nearly all day. Pain meds were barely denting things. Plus, as my kidneys continued aching, my mood went south really fast as well. I was NOT happy camper by any stretch.
Luckily, I was able to contact one of my support friends. She was able to help me get my mind in a better place. I am so thankful for my friends. Without them, this would be far, far more difficult.
Today, was better...until this evening (as I type this entry). My headache has been tolerable, and my nausea minimal. My kidneys have been hurting all day, though the pain is ratcheting up so far this evening. So, a mixed day.
I've got my next nephrology appointment on Monday. I won't do another entry before then. As the appt. gets closer I am finding myself a bit nervous, and I don't know why. Maybe it's because I want to be in Stage 5. This would mean that I'm getting close to intervention beyond pharmaceuticals. If I'm not, then I get to wait, feeling as awful as I do, at least another 1-2 months before moving forward; and we all know how much fun I'm having! Just a lot of uncertainty right now. I want to know one way or the other so I can concentrate on holding steady, or moving towards interventions.
I've been on my walks every day this week that the weather was nice. I got in 4 walks, I believe. Again, I am sitting more that walking, but at least I'm getting outside, being productive and proactive. The walks intensify any pain I am feeling in my kidneys, but I can tolerate that in order to be doing these walks.
Personally, the walks use up just about all of my energy for the day. Again, that's OK. It is a sacrifice I am willing to make. In the long run, the benefits will be greater than the pain I must put up with.
That's all for now. My next entry (on Monday?) will have the latest on where things are at. I'll include as much detail as I can remember. Until then...
Good Health to All!
ScottW
The nausea and headache were both about normal, but my kidneys were terribly painful nearly all day. Pain meds were barely denting things. Plus, as my kidneys continued aching, my mood went south really fast as well. I was NOT happy camper by any stretch.
Luckily, I was able to contact one of my support friends. She was able to help me get my mind in a better place. I am so thankful for my friends. Without them, this would be far, far more difficult.
Today, was better...until this evening (as I type this entry). My headache has been tolerable, and my nausea minimal. My kidneys have been hurting all day, though the pain is ratcheting up so far this evening. So, a mixed day.
I've got my next nephrology appointment on Monday. I won't do another entry before then. As the appt. gets closer I am finding myself a bit nervous, and I don't know why. Maybe it's because I want to be in Stage 5. This would mean that I'm getting close to intervention beyond pharmaceuticals. If I'm not, then I get to wait, feeling as awful as I do, at least another 1-2 months before moving forward; and we all know how much fun I'm having! Just a lot of uncertainty right now. I want to know one way or the other so I can concentrate on holding steady, or moving towards interventions.
I've been on my walks every day this week that the weather was nice. I got in 4 walks, I believe. Again, I am sitting more that walking, but at least I'm getting outside, being productive and proactive. The walks intensify any pain I am feeling in my kidneys, but I can tolerate that in order to be doing these walks.
Personally, the walks use up just about all of my energy for the day. Again, that's OK. It is a sacrifice I am willing to make. In the long run, the benefits will be greater than the pain I must put up with.
That's all for now. My next entry (on Monday?) will have the latest on where things are at. I'll include as much detail as I can remember. Until then...
Good Health to All!
ScottW
Thursday, June 17, 2010
17 June 10
In the three days since my last entry I've had three different days of S/S's.
Tuesday was a fairly good day. I experienced my now usual nausea, kidney pain, etc.
Wednesday was opposite of Tuesday. All day I had diarrhea, my kidneys ached more than usual, my headache was up slightly (about a 7), I was extremely nauseated literally all day, and I had zero energy.
Today, the nausea is back to its normal self, the headache is reduced; but my kidneys really hurt, I'm cold (on a very warm day), and food just isn't sitting well. My nausea increases every time I've put anything in my stomach today. Plus, in spite of a good six hours of sleep, I feel really tired.
I decided last week that I wanted to try to be a bit more active. So, every day that the weather is nice (and, assuming I'm up for it), I'm going to a local park to walk for a bit. I think I do more sitting than walking, but at least I'm out trying to get a little exercise. I may not be able to do much, or go for very long; but it is helping me to get outdoors, enjoy the weather, and keep my mind in a positive place. The walks are extremely taxing on my body, but I strongly feel it is important that I go.
That's all I've got for you today.
Good Health to All!
ScottW
Tuesday was a fairly good day. I experienced my now usual nausea, kidney pain, etc.
Wednesday was opposite of Tuesday. All day I had diarrhea, my kidneys ached more than usual, my headache was up slightly (about a 7), I was extremely nauseated literally all day, and I had zero energy.
Today, the nausea is back to its normal self, the headache is reduced; but my kidneys really hurt, I'm cold (on a very warm day), and food just isn't sitting well. My nausea increases every time I've put anything in my stomach today. Plus, in spite of a good six hours of sleep, I feel really tired.
I decided last week that I wanted to try to be a bit more active. So, every day that the weather is nice (and, assuming I'm up for it), I'm going to a local park to walk for a bit. I think I do more sitting than walking, but at least I'm out trying to get a little exercise. I may not be able to do much, or go for very long; but it is helping me to get outdoors, enjoy the weather, and keep my mind in a positive place. The walks are extremely taxing on my body, but I strongly feel it is important that I go.
That's all I've got for you today.
Good Health to All!
ScottW
Monday, June 14, 2010
14 June 10
Had my blood drawn this morning for the latest round of tests.
It's already been two months since my last tests. My how time flies when you're having as much...ummm...fun, as I have been! ;0) My next nephrology appointment is next Monday. I'll get to see if my kidneys have maintained their loss of function pace of 1% per month.
The last few days have been OK, and terrible. Yesterday was terrible. I was nauseated all day, had a number of bouts of diarrhea, and generally felt about as awful as one can feel without throwing up. And it lasted all day! (yuck!) I awoke this morning feeling TONS better. Thank Goodness!!!
Friday and Saturday was my usual up and down, with my kidneys aching, headache, etc. It wasn't bad...just the current norm. Certainly nothing to complain about.
That's everything for today.
Good Health to All!
ScottW
It's already been two months since my last tests. My how time flies when you're having as much...ummm...fun, as I have been! ;0) My next nephrology appointment is next Monday. I'll get to see if my kidneys have maintained their loss of function pace of 1% per month.
The last few days have been OK, and terrible. Yesterday was terrible. I was nauseated all day, had a number of bouts of diarrhea, and generally felt about as awful as one can feel without throwing up. And it lasted all day! (yuck!) I awoke this morning feeling TONS better. Thank Goodness!!!
Friday and Saturday was my usual up and down, with my kidneys aching, headache, etc. It wasn't bad...just the current norm. Certainly nothing to complain about.
That's everything for today.
Good Health to All!
ScottW
Thursday, June 10, 2010
10 June 10
Tired.
That one word encompasses how I'm feeling. The nausea has not returned to what happened last weekend--Thank Goodness!--though it is always present, and will flare up to intense. The biggest thing this week has been tiredness. I have almost no energy, and I feel like I could sleep at just about any time; yet if I try, I can't sleep. I just remain tired. So, I do my best to shake it off, and get about being as busy as I can.
My kidneys continue to hurt 24/7. A single T3 no longer alleviates the pain; it merely takes the edge off--which I am extremely grateful for! I am reluctant to take two at a time because I just don't like the way I feel. I may just change my mind if the kidney pain intensifies, but not yet.
Urinary output remains down. I am still downing around 64 oz of water every day, plus milk (24-32 oz), juice (occasionally), and about 16 oz of Coke. I can guarantee you that I am not even close to getting rid of 100+ liquid ounces ever day. Hence the edema that continues developing in my lower legs.
My appetite is still awful. Though I try to eat more, I am still averaging just one meal a day--and it isn't even a very big meal! I do try to snack, or have a little something at other times of the day. The bottom line is, I am just not hungry.
I continue to be strong mentally. I do have thoughts of doubt entering my mind as to my desire or ability to continue to fight. But, recognizing them, I am able to quickly eliminate those thoughts from my mind. I've still got a long road ahead, and have no room for doubt, self-pity, defeat, or any other negative thought process that will only lead to discouragement.
That's all I've got for today. I hope you, my readers, are healthy, happy, and achieving all that you set your minds on. Remember, no one will believe with the same conviction and strength that you will. Hold onto the dreams you possess, and endeavor every day to attain them!
Good Health to All!
ScottW
That one word encompasses how I'm feeling. The nausea has not returned to what happened last weekend--Thank Goodness!--though it is always present, and will flare up to intense. The biggest thing this week has been tiredness. I have almost no energy, and I feel like I could sleep at just about any time; yet if I try, I can't sleep. I just remain tired. So, I do my best to shake it off, and get about being as busy as I can.
My kidneys continue to hurt 24/7. A single T3 no longer alleviates the pain; it merely takes the edge off--which I am extremely grateful for! I am reluctant to take two at a time because I just don't like the way I feel. I may just change my mind if the kidney pain intensifies, but not yet.
Urinary output remains down. I am still downing around 64 oz of water every day, plus milk (24-32 oz), juice (occasionally), and about 16 oz of Coke. I can guarantee you that I am not even close to getting rid of 100+ liquid ounces ever day. Hence the edema that continues developing in my lower legs.
My appetite is still awful. Though I try to eat more, I am still averaging just one meal a day--and it isn't even a very big meal! I do try to snack, or have a little something at other times of the day. The bottom line is, I am just not hungry.
I continue to be strong mentally. I do have thoughts of doubt entering my mind as to my desire or ability to continue to fight. But, recognizing them, I am able to quickly eliminate those thoughts from my mind. I've still got a long road ahead, and have no room for doubt, self-pity, defeat, or any other negative thought process that will only lead to discouragement.
That's all I've got for today. I hope you, my readers, are healthy, happy, and achieving all that you set your minds on. Remember, no one will believe with the same conviction and strength that you will. Hold onto the dreams you possess, and endeavor every day to attain them!
Good Health to All!
ScottW
Sunday, June 6, 2010
06 June 10
It's been a very rough two days since my last entry.
Around 3a on Saturday morning I started getting nauseated. It increased slowly, and I was using Pepcid, Tums, Emetrol and Coke in a series of unsuccessful attempts to alleviate the nausea. By 5a, the nausea had grown so bad I could no longer rest either sitting or laying. Though it never got to the actual point of emesis, I was on the verge for a good three hours. My abdomen was tender, my stomach ached, and I felt flush. Miserable is a good word to describe how I was feeling.
I finally got it to settle down (after a total of 4.5 hours!) by repeated doses of Tums, Emetrol, and Coke. I finally got to sleep at 1030a, but only slept for five hours due to being awakened by more nausea. Since yesterday, the nausea has been controllable--but only just barely.
In all of this, my headache increased, my kidneys hurt more, and my vision became blurry.
I'll be calling my doctor tomorrow for a prescription nausea med. Hopefully this will take care of things when I feel that bad.
I'll continue to keep you apprised.
Good Health to All!
ScottW
Around 3a on Saturday morning I started getting nauseated. It increased slowly, and I was using Pepcid, Tums, Emetrol and Coke in a series of unsuccessful attempts to alleviate the nausea. By 5a, the nausea had grown so bad I could no longer rest either sitting or laying. Though it never got to the actual point of emesis, I was on the verge for a good three hours. My abdomen was tender, my stomach ached, and I felt flush. Miserable is a good word to describe how I was feeling.
I finally got it to settle down (after a total of 4.5 hours!) by repeated doses of Tums, Emetrol, and Coke. I finally got to sleep at 1030a, but only slept for five hours due to being awakened by more nausea. Since yesterday, the nausea has been controllable--but only just barely.
In all of this, my headache increased, my kidneys hurt more, and my vision became blurry.
I'll be calling my doctor tomorrow for a prescription nausea med. Hopefully this will take care of things when I feel that bad.
I'll continue to keep you apprised.
Good Health to All!
ScottW
Friday, June 4, 2010
04 June 10
Three days was a good run.
I got a nice decrease in the S/S's of the PCKD for a few days. Unfortunately, it ended yesterday with the nausea ramping up, the headache intensifying, kidney pain increasing, etc. Like I stated earlier though, I am just thankful for the respite, no matter how long or short a time.
I've got my next nephrology appointment coming up on the 21st of this month. As usual, I'll be getting a blood draw a week ahead of time for the CBC, Renal panel, etc. Unless there is an increase in my kidney function, I won't be surprised by the results. My last tests showed I was at 21% function--just above stage 5 of the disease. It will have been two months since my last visit. My kidney function has been decreasing at about 1% per month since the diagnosis; so, a 19% function rate [on the upcoming tests] would be in line with what has already been occurring.
My sleep continues to be screwy. As usual these days, I can't get to sleep until early morning (3a-6a), then sleep for about 5-6 hours. The last week or so, I've been sleeping more, but wake up feeling tired; like the sleep I'm getting does not have much REM time. I don't know. It would seem that being tired all the time is becoming a new norm. I've even had friends tell me that I look tired every time they see me--this after a "good" night of sleep!
I'll continue to observe.
In spite of all of this, I continue to work every day to keep my mind in a good, positive place. It is a definite challenge to do so as time goes by, and the disease worsens; and some days I'm not successful at all. But, I still try every day to be positive and upbeat.
That's all I've got for now. Let's have a great weekend!
Good Health to All!
ScottW
I got a nice decrease in the S/S's of the PCKD for a few days. Unfortunately, it ended yesterday with the nausea ramping up, the headache intensifying, kidney pain increasing, etc. Like I stated earlier though, I am just thankful for the respite, no matter how long or short a time.
I've got my next nephrology appointment coming up on the 21st of this month. As usual, I'll be getting a blood draw a week ahead of time for the CBC, Renal panel, etc. Unless there is an increase in my kidney function, I won't be surprised by the results. My last tests showed I was at 21% function--just above stage 5 of the disease. It will have been two months since my last visit. My kidney function has been decreasing at about 1% per month since the diagnosis; so, a 19% function rate [on the upcoming tests] would be in line with what has already been occurring.
My sleep continues to be screwy. As usual these days, I can't get to sleep until early morning (3a-6a), then sleep for about 5-6 hours. The last week or so, I've been sleeping more, but wake up feeling tired; like the sleep I'm getting does not have much REM time. I don't know. It would seem that being tired all the time is becoming a new norm. I've even had friends tell me that I look tired every time they see me--this after a "good" night of sleep!
I'll continue to observe.
In spite of all of this, I continue to work every day to keep my mind in a good, positive place. It is a definite challenge to do so as time goes by, and the disease worsens; and some days I'm not successful at all. But, I still try every day to be positive and upbeat.
That's all I've got for now. Let's have a great weekend!
Good Health to All!
ScottW
Wednesday, June 2, 2010
02 June 10
Well, three relatively good days in a row! I will certainly not complain about that!
So, Monday I was having a good day. I had hoped it would carry over, and it has! The nausea has been somewhat better, my headache has been up and down, and my kidney pain has backed off intensity-wise (don't get me wrong...they still hurt. Right now they're just mildly painful instead of moderately (or more) painful!). My energy is still low, and I'm eating on average just once per day; but all in all, I've now had three good days in a row! Nothing to complain about, for sure!!!
A while ago I was telling you about a web site I found called The Transplant Experience. *I have it on this page under the side bar heading 'Helpful Renal Websites.'* Anyway, I received my free info packet from them a couple of weeks ago and it is filled with great, helpful info for anyone preparing for a transplant. They included literature, a DVD, common med forms and a seven-day, four-compartment pill box for when you are post transplant and need to take meds at varying times of the day. Additionally, they send me info via email about every two weeks. The program providing the information is sponsored by Astellas, a pharmaceutical company out of Waukegan, IL.
I was glad I got their information. The more anybody can know about a transplant prior to it actually happening, the better it is for them. I think it causes less worry, stress and uncertainty about the things that are happening.
As I've alluded to a number of times, I want to know as much as I can so there are as few surprises as possible in this whole thing. Anybody reading this blog who is awaiting or anticipating transplant, I strongly encourage you to read, ask questions, educate yourselves, do whatever you can/need, and learn as much as you possibly can.
It really does relieve the tension one feels as you go through what I am now.
That's all for today. I hope you all are healthy, happy, and striving towards your bright futures!
Good Health to All!
ScottW
So, Monday I was having a good day. I had hoped it would carry over, and it has! The nausea has been somewhat better, my headache has been up and down, and my kidney pain has backed off intensity-wise (don't get me wrong...they still hurt. Right now they're just mildly painful instead of moderately (or more) painful!). My energy is still low, and I'm eating on average just once per day; but all in all, I've now had three good days in a row! Nothing to complain about, for sure!!!
A while ago I was telling you about a web site I found called The Transplant Experience. *I have it on this page under the side bar heading 'Helpful Renal Websites.'* Anyway, I received my free info packet from them a couple of weeks ago and it is filled with great, helpful info for anyone preparing for a transplant. They included literature, a DVD, common med forms and a seven-day, four-compartment pill box for when you are post transplant and need to take meds at varying times of the day. Additionally, they send me info via email about every two weeks. The program providing the information is sponsored by Astellas, a pharmaceutical company out of Waukegan, IL.
I was glad I got their information. The more anybody can know about a transplant prior to it actually happening, the better it is for them. I think it causes less worry, stress and uncertainty about the things that are happening.
As I've alluded to a number of times, I want to know as much as I can so there are as few surprises as possible in this whole thing. Anybody reading this blog who is awaiting or anticipating transplant, I strongly encourage you to read, ask questions, educate yourselves, do whatever you can/need, and learn as much as you possibly can.
It really does relieve the tension one feels as you go through what I am now.
That's all for today. I hope you all are healthy, happy, and striving towards your bright futures!
Good Health to All!
ScottW
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