A little better since my last blog.
I never did eat that entire day. I just wasn't feeling good by any measure. Since then my appetite has been up a bit (1.5-2 cups/day), but I feel awful (nausea) after eating...every time. It does go away after about an hour, though.
The edema has been consistently bad since Friday. It goes through the same pattern every day--that feeling in my legs in the morning; increasing edema throughout the day, worsening to severe by the time I go to bed; awaken in the morning with my leg looking better, but I urinate a lot as soon as I get up, and again about an hour later; then repeat the entire day. I am still thankful that my kidneys continue to mitigate the edema.
My headache has been better. Aside from one day that was exacerbated by TMD symptoms, things in this area have been OK. Still having a constant headache, mind you; I've just had a little more control over it the last few days.
That pain over my R kidney has been terrible. If I move the wrong way I feel like a knife is stabbing me in the back. The pain is not yet constant, so I'm not yet overly concerned. IF it worsens to a constant pain, I'll go see my doc.
My sleep continues to be all over the place. My nighttime sleep generally goes from about 130a-930a, but is extremely restless. However, I am exhausted upon waking, and have been falling asleep around five hours after waking and sleep at least three additional hours; after which I am still exhausted.
My breath has gotten really bad. I've had to start airing out the house every day. This in spite of brushing my teeth and using the cinnamon Altoids every day. I'm not at all surprised given that my mouth has had a nasty taste every morning for months now. I'm told the prevalent odor has been ammonia. This is also an indicator of where my kidneys are at because if they were in failure, the odor would be of Uric Acid. Fortunately--or, unfortunately, depending on your point of view--that means that I'm still a while from renal shutdown.
That's about all for today. I hope, as always, to have better days ahead.
Good Health to All!
ScottW
Monday, September 26, 2011
Wednesday, September 21, 2011
21 September 2011
I'm going to make this quick today. My head is killing me, and I feel damned lousy; but saw it was past time to make an entry. So, here we go...
Lots of felling ill the past several days. No let-up with this at all. It's going 24/7.
My headache has been nearly uncontrollable. Even two T3's are barely keeping it in check.
Moderate edema in my feet for the last three days. My body has been trying to balance this with increased urination. I'm just thankful that it's able to keep the edema at a moderate level. However, I've had lots of pain in my feet and legs that is, of course, worse whenever I walk.
Been having lots of vertigo...even while sitting and laying. Woo-Hoo.
No change in my appetite. It's still as terrible as ever. Yesterday I ate all of about one cup of food. Today (so far), I haven't eaten anything.
The nausea has been reduced...thank goodness.
And that's about all for today. I just feel so lousy...
ScottW
Lots of felling ill the past several days. No let-up with this at all. It's going 24/7.
My headache has been nearly uncontrollable. Even two T3's are barely keeping it in check.
Moderate edema in my feet for the last three days. My body has been trying to balance this with increased urination. I'm just thankful that it's able to keep the edema at a moderate level. However, I've had lots of pain in my feet and legs that is, of course, worse whenever I walk.
Been having lots of vertigo...even while sitting and laying. Woo-Hoo.
No change in my appetite. It's still as terrible as ever. Yesterday I ate all of about one cup of food. Today (so far), I haven't eaten anything.
The nausea has been reduced...thank goodness.
And that's about all for today. I just feel so lousy...
ScottW
Friday, September 16, 2011
16 September 2011
Since Monday's post things have been up and down.
I have not had a return of the severe edema so far this week. In fact, the edema is barely visible right now in either my hands or my legs and feet. Despite this, I have been feeling terrible on the inside. I'm not talking about the nausea...that's another thing entirely. It's that ill feeling I referenced before; and it has been hitting me hard, and making me feel just awful.
As far as the nausea goes, that too has been up and down. As usual eating hits me hard and I feel nauseated for about an hour afterward. I haven't yet found anything to alleviate this. The usual onset of nausea is as unpredictable as ever. I have not been awoken this week--thank goodness--but have had nausea onset [when awake] several times each day. Nothing overwhelming or uncontrollable, though.
My back has been really painful all week. I was able to get those vertebrae in on my own, so that is no longer contributing to the pain level. Now the pain is all about what I presume to be the cysts on my kidneys...particularly on my R side. Laying, sitting, walking...nothing helps this pain. Plus, I've noticed that I also have a particularly painful area away from the mid-back, located about halfway between mid-line and the R side. It's not just painful on resting, but to the touch as well.
Other things in the symptomology are doing OK. My urine flow remains consistent in volume and characteristics; my eyesight continues to vary between good and bad (depending on how I'm feeling); the headache is terrible 100% of the time; my body is constantly cold; my breathe is always bad these days, especially in the mornings; etc.
My recent self-exam on how I am doing mentally has really helped my day to day. I am not struggling now, and have been getting more done every day. I still have a hard time with getting this blog done, and writing letters, but that has more to do with exhaustion than anything else.
That's all I can think of for now so I'll be signing off. Looking forward to a few better days.
Good Health to All!
ScottW
I have not had a return of the severe edema so far this week. In fact, the edema is barely visible right now in either my hands or my legs and feet. Despite this, I have been feeling terrible on the inside. I'm not talking about the nausea...that's another thing entirely. It's that ill feeling I referenced before; and it has been hitting me hard, and making me feel just awful.
As far as the nausea goes, that too has been up and down. As usual eating hits me hard and I feel nauseated for about an hour afterward. I haven't yet found anything to alleviate this. The usual onset of nausea is as unpredictable as ever. I have not been awoken this week--thank goodness--but have had nausea onset [when awake] several times each day. Nothing overwhelming or uncontrollable, though.
My back has been really painful all week. I was able to get those vertebrae in on my own, so that is no longer contributing to the pain level. Now the pain is all about what I presume to be the cysts on my kidneys...particularly on my R side. Laying, sitting, walking...nothing helps this pain. Plus, I've noticed that I also have a particularly painful area away from the mid-back, located about halfway between mid-line and the R side. It's not just painful on resting, but to the touch as well.
Other things in the symptomology are doing OK. My urine flow remains consistent in volume and characteristics; my eyesight continues to vary between good and bad (depending on how I'm feeling); the headache is terrible 100% of the time; my body is constantly cold; my breathe is always bad these days, especially in the mornings; etc.
My recent self-exam on how I am doing mentally has really helped my day to day. I am not struggling now, and have been getting more done every day. I still have a hard time with getting this blog done, and writing letters, but that has more to do with exhaustion than anything else.
That's all I can think of for now so I'll be signing off. Looking forward to a few better days.
Good Health to All!
ScottW
Monday, September 12, 2011
12 September 2011
I know it's been nearly a week since my last entry. My bad. In my defense, I have had a terrible week.
To start, I have had LOTS (!!!) of nausea. I've been awoken three times with near emesis nausea, and have had it hit me numerous times while awake, as well. During the times the nausea woke me up, it was always the same story... Near emesis on waking, down at least a half dose of the anti-emetic Promethazine, then wait between 30-75 minutes for the med to eliminate the nausea, and send me off to a deep sleep from which I awaken extremely groggy/foggy headed. I know...it's a party...one that you definitely don't want to be a part of! No, no noooo.
The nausea that hits me while awake comes on gradually at first, then smacks me really hard. The small doses of Promethazine do absolutely no good whatsoever (not to mention the waste of time it is to take Tums), and I have to take at least a half dose if I want to control it. As a result of all the Promethazine usage, my sleep is all over the place. The only thing I can count on sleep-wise is that I never know when I'll go down for me "nightly" sleep. I am however, extremely grateful that I can control the nausea when it gets out of control. Always.
My headaches have had no let-up. Lots of pain every day; and only the T3's keep them under control.
My mid-back over the kidneys continues to be extremely painful. I also have a vertebrae or two out in the same area which adds pain to whatever the cysts on my kidneys are doing. If I can't get them in on my own, I'll go see my chiropractor. I'm just wary of anything pressing on my kidneys right now.
After I awoke a few days ago and placed my feet on the floor then stood up, I knew instantly that i would have a huge increase of edema that day. I can't describe the sensation in my legs other than, my knees down to my feet felt really weird. Sure enough, as the day progressed my feet went from just minor edema to terrible. I had rebound of minutes+, and color return of 10+. One spot I tested on my R foot had an imprint that lasted for nearly 15 minutes. Another place on my L foot had my finger pressing in a good half inch. This edema was really bad.
It gradually reduced over the next couple of days, then it happened again...this time with that sensation in my legs starting mid-thigh on both legs. Once again the edema increased to about the same level. This whole experience is definitely something new. Right now the edema doesn't stay severe though, so I am not yet alarmed. Plus, my kidneys are continuing to aid reduction of the edema with increased rates of urination after the edema has gotten to its worst. So, my body is still able to maintain at least some balance.
The lack of appetite continues, as does my liquid intake. I can barely smell any foods these days, and as I've stated before, most foods taste very, very bland; so I rarely enjoy eating, either. Over the last week I'd estimate my daily intake to be 1.5 cups of food, and around 60 oz of liquids.
After some self examination, I determined that I was struggling mentally way too much. I was doing less and less from day to day, and feeling a bit grumpy and unenthused. So, I decided to do better. I am being cognizant of my body language, aware of my motivation level, and am working daily with increased effort to be happier, a little more active, and more aware of how I am coming across to others. This has helped me immensely this past week; and will continue to get my mind in a better place. It's good that I do these self checks every so often. Otherwise I might end up in a place of darkness and despair that would be terribly difficult to get out of.
That's all for today. I promise that I won't wait another week before writing my next entry.
Have a wonderful day!
Good Health to All!
ScottW
To start, I have had LOTS (!!!) of nausea. I've been awoken three times with near emesis nausea, and have had it hit me numerous times while awake, as well. During the times the nausea woke me up, it was always the same story... Near emesis on waking, down at least a half dose of the anti-emetic Promethazine, then wait between 30-75 minutes for the med to eliminate the nausea, and send me off to a deep sleep from which I awaken extremely groggy/foggy headed. I know...it's a party...one that you definitely don't want to be a part of! No, no noooo.
The nausea that hits me while awake comes on gradually at first, then smacks me really hard. The small doses of Promethazine do absolutely no good whatsoever (not to mention the waste of time it is to take Tums), and I have to take at least a half dose if I want to control it. As a result of all the Promethazine usage, my sleep is all over the place. The only thing I can count on sleep-wise is that I never know when I'll go down for me "nightly" sleep. I am however, extremely grateful that I can control the nausea when it gets out of control. Always.
My headaches have had no let-up. Lots of pain every day; and only the T3's keep them under control.
My mid-back over the kidneys continues to be extremely painful. I also have a vertebrae or two out in the same area which adds pain to whatever the cysts on my kidneys are doing. If I can't get them in on my own, I'll go see my chiropractor. I'm just wary of anything pressing on my kidneys right now.
After I awoke a few days ago and placed my feet on the floor then stood up, I knew instantly that i would have a huge increase of edema that day. I can't describe the sensation in my legs other than, my knees down to my feet felt really weird. Sure enough, as the day progressed my feet went from just minor edema to terrible. I had rebound of minutes+, and color return of 10+. One spot I tested on my R foot had an imprint that lasted for nearly 15 minutes. Another place on my L foot had my finger pressing in a good half inch. This edema was really bad.
It gradually reduced over the next couple of days, then it happened again...this time with that sensation in my legs starting mid-thigh on both legs. Once again the edema increased to about the same level. This whole experience is definitely something new. Right now the edema doesn't stay severe though, so I am not yet alarmed. Plus, my kidneys are continuing to aid reduction of the edema with increased rates of urination after the edema has gotten to its worst. So, my body is still able to maintain at least some balance.
The lack of appetite continues, as does my liquid intake. I can barely smell any foods these days, and as I've stated before, most foods taste very, very bland; so I rarely enjoy eating, either. Over the last week I'd estimate my daily intake to be 1.5 cups of food, and around 60 oz of liquids.
After some self examination, I determined that I was struggling mentally way too much. I was doing less and less from day to day, and feeling a bit grumpy and unenthused. So, I decided to do better. I am being cognizant of my body language, aware of my motivation level, and am working daily with increased effort to be happier, a little more active, and more aware of how I am coming across to others. This has helped me immensely this past week; and will continue to get my mind in a better place. It's good that I do these self checks every so often. Otherwise I might end up in a place of darkness and despair that would be terribly difficult to get out of.
That's all for today. I promise that I won't wait another week before writing my next entry.
Have a wonderful day!
Good Health to All!
ScottW
Tuesday, September 6, 2011
06 September 2011
Well, my suspicion proved itself out.
After two more months, and feeling worse than ever, there has been zero movement in my numbers. My kidney function remains at 17.6%. In fact, my doc stated that aside from the dying kidneys thing, I'm "actually a really healthy guy." The way I'm feeling is just a part of the process; and will continue to worsen as the disease slowly does its thing.
Numbers are as follows:
*Iron 79 (NR 35-155)
*Na+ 140 (NR 135-148)
*K+ 4.4 (NR 3.3-5.5)
*Glucose 102 (NR 65-109)
*BUN 40.0 (NR 5-25)
Creatinine 3.9 (NR 0.5-1.5)
*WBC 6.08 (NR 4.5-11.0)
*RBC 4.46 (NR 4.7-6.1)
Hematicrit 34.0 (NR 42-52)
As has previously been, the PCKD remains the sole health issue. I continue to withstand development of associated issues such as diabetes, liver impairment, edema in the heart a/o lungs, etc.
The only good news to come out of today's appointment was that I lost 9 pounds over the last two months. My weight now stands at 243 and dropping. This is in part because of my extremely poor appetite, as well as have almost zero peripheral edema [right now], and because of continued loss of muscle mass due to not being able to work out.
My next appointment [with the nephrologist] is in two months. Unless something happens that accelerates the symptomology, or I see clear signs of an impending crash, I won't have any further official news until then. I will continue blogging, so be sure to stay up to date with everything.
If you have any questions, please write and ask whatever you'd like. I'll always get back to you as soon as I feel up to it. Thank you for all of the prayers, good thoughts, etc. I need it all, and appreciate the efforts far more than I can express.
Good Health to All!
ScottW
After two more months, and feeling worse than ever, there has been zero movement in my numbers. My kidney function remains at 17.6%. In fact, my doc stated that aside from the dying kidneys thing, I'm "actually a really healthy guy." The way I'm feeling is just a part of the process; and will continue to worsen as the disease slowly does its thing.
Numbers are as follows:
*Iron 79 (NR 35-155)
*Na+ 140 (NR 135-148)
*K+ 4.4 (NR 3.3-5.5)
*Glucose 102 (NR 65-109)
*BUN 40.0 (NR 5-25)
Creatinine 3.9 (NR 0.5-1.5)
*WBC 6.08 (NR 4.5-11.0)
*RBC 4.46 (NR 4.7-6.1)
Hematicrit 34.0 (NR 42-52)
As has previously been, the PCKD remains the sole health issue. I continue to withstand development of associated issues such as diabetes, liver impairment, edema in the heart a/o lungs, etc.
The only good news to come out of today's appointment was that I lost 9 pounds over the last two months. My weight now stands at 243 and dropping. This is in part because of my extremely poor appetite, as well as have almost zero peripheral edema [right now], and because of continued loss of muscle mass due to not being able to work out.
My next appointment [with the nephrologist] is in two months. Unless something happens that accelerates the symptomology, or I see clear signs of an impending crash, I won't have any further official news until then. I will continue blogging, so be sure to stay up to date with everything.
If you have any questions, please write and ask whatever you'd like. I'll always get back to you as soon as I feel up to it. Thank you for all of the prayers, good thoughts, etc. I need it all, and appreciate the efforts far more than I can express.
Good Health to All!
ScottW
05 Sept. 2011
Two of the last three days I've had overwhelming nausea in the early morning hours.
Both Friday and Sunday night I was awoken with terrible nausea. In both cases I immediately took a full dose of the Promethazine; and both times had to wait miserably for over an hour before I was comfortable enough to fall back asleep. After what happened earlier in the week, I think it is safe to say that my nausea is consistently worse than ever. However, still no actual emesis; which is in and of itself a mixed blessing...Glad I'm not yacking up, but knowing that if I were, I would be closer to dialysis.
The edema inexplicably continues to be nearly absent. I just don't know what to make of this. With how I'm feeling all the time, I would think the edema would be really bad.
All the rest of my symptomology remains consistent with my last blog entry--which means I've been feeling really bad in just about every way I can.
My next nephrology appointment is tomorrow morning. (I have a sneaking suspicion there won't be much movement in my numbers this time.) I will give you the details as soon as I get home. Until then,
Good Health to All!
ScottW
Both Friday and Sunday night I was awoken with terrible nausea. In both cases I immediately took a full dose of the Promethazine; and both times had to wait miserably for over an hour before I was comfortable enough to fall back asleep. After what happened earlier in the week, I think it is safe to say that my nausea is consistently worse than ever. However, still no actual emesis; which is in and of itself a mixed blessing...Glad I'm not yacking up, but knowing that if I were, I would be closer to dialysis.
The edema inexplicably continues to be nearly absent. I just don't know what to make of this. With how I'm feeling all the time, I would think the edema would be really bad.
All the rest of my symptomology remains consistent with my last blog entry--which means I've been feeling really bad in just about every way I can.
My next nephrology appointment is tomorrow morning. (I have a sneaking suspicion there won't be much movement in my numbers this time.) I will give you the details as soon as I get home. Until then,
Good Health to All!
ScottW
Friday, September 2, 2011
02 Sept. 2011
In the four days since my last entry there has once again been consistent symptomology.
About the only changes have been for the worse. One, the nausea just won't settle down. on Wednesday night/Thursday morning I had an overwhelmingly intense bout of nausea just smack me from nowhere. I took a half dose of the Promethazine, then thirty minutes later took another half dose. I then spent the next forty minutes leaning over the kitchen sink, ready and feeling as if I was going to throw up. After those forty minutes there was no let-up in the nausea, so I laid down in bed. Even then, I waited another fifty+ minutes before the nausea retreated, and I finally fell asleep. To say that this was a particularly nasty emetic episode would be a vast understatement. The only thing that could've made this one any worse would be if I actually threw up. Even with a full dose of Promethazine, it took nearly two hours to calm down. (Shuddering!...)
Two, my back over the kidneys has been extremely painful. The pain is only relieved by T3's. Sitting in my office chair helps relax things, but the pain is only relieved with the pain meds. As before, I still have no obvious *blood in my urine, and zero indication of kidney stones. (*I have continued to have a red tinge to the extreme foam created when I urinate in a toilet.)
My fistula continues to mature. I can now see the path of the super vein up to the crook of my elbow. I am still doing the strengthening exercises every day. When the vein is clearly visible on my arm, I will post a pic here so everyone can see the end result.
My sleep remains poor in its quality, and in my declining ability to control my dreams. About the only time I sleep deeply is when I've got a lot of the anti-emetic in me--like Thursday. I awoke from my sleep at about 1230p, then settled in to watch a three hour broadcast of Australian Rules football (AFL)--a far, far better game than the NFL or college ball--and after one quarter (20 minutes) began getting sleepy. I turned off the TV and promptly fell into a deep, groggy sleep that lasted another 4.5 hours. As usual, when i awoke my brain was foggy, and I stumbled around a lot...but hey! The nausea was gone for a little! Woo-Hoo!
My appetite is still terrible. I rarely snack anymore, and my liquid intake remains poor, as well. When I do eat, it is usually around a cup of food in total; and that is only once per day. I am having more and more difficulty deciding on something to eat. Most foods are tasting extremely bland, and my appetite is shut down by anything that might be considered a little off-putting such as coming across an artery in a chicken breast. Plus, I can't smell most foods now [because of the ammonia]; so I very rarely have my appetite stimulated by food smells that are obvious to everyone else.
I had my blood drawn today for Tuesday's nephrology appointment. The labs done today are for Iron, Renal Panel, and CBC. My blood appeared to me to be darker than normal, and cloudy. As always, I'll fill you in with the results after the appointment.
That's all for now. I'll likely do an entry on Monday so that on Tuesday I can only talk about the results of my Doctor visit.
Have a fun, but safe Labor Day weekend. I wish I was going out and about!
Good Health to All!
ScottW
About the only changes have been for the worse. One, the nausea just won't settle down. on Wednesday night/Thursday morning I had an overwhelmingly intense bout of nausea just smack me from nowhere. I took a half dose of the Promethazine, then thirty minutes later took another half dose. I then spent the next forty minutes leaning over the kitchen sink, ready and feeling as if I was going to throw up. After those forty minutes there was no let-up in the nausea, so I laid down in bed. Even then, I waited another fifty+ minutes before the nausea retreated, and I finally fell asleep. To say that this was a particularly nasty emetic episode would be a vast understatement. The only thing that could've made this one any worse would be if I actually threw up. Even with a full dose of Promethazine, it took nearly two hours to calm down. (Shuddering!...)
Two, my back over the kidneys has been extremely painful. The pain is only relieved by T3's. Sitting in my office chair helps relax things, but the pain is only relieved with the pain meds. As before, I still have no obvious *blood in my urine, and zero indication of kidney stones. (*I have continued to have a red tinge to the extreme foam created when I urinate in a toilet.)
My fistula continues to mature. I can now see the path of the super vein up to the crook of my elbow. I am still doing the strengthening exercises every day. When the vein is clearly visible on my arm, I will post a pic here so everyone can see the end result.
My sleep remains poor in its quality, and in my declining ability to control my dreams. About the only time I sleep deeply is when I've got a lot of the anti-emetic in me--like Thursday. I awoke from my sleep at about 1230p, then settled in to watch a three hour broadcast of Australian Rules football (AFL)--a far, far better game than the NFL or college ball--and after one quarter (20 minutes) began getting sleepy. I turned off the TV and promptly fell into a deep, groggy sleep that lasted another 4.5 hours. As usual, when i awoke my brain was foggy, and I stumbled around a lot...but hey! The nausea was gone for a little! Woo-Hoo!
My appetite is still terrible. I rarely snack anymore, and my liquid intake remains poor, as well. When I do eat, it is usually around a cup of food in total; and that is only once per day. I am having more and more difficulty deciding on something to eat. Most foods are tasting extremely bland, and my appetite is shut down by anything that might be considered a little off-putting such as coming across an artery in a chicken breast. Plus, I can't smell most foods now [because of the ammonia]; so I very rarely have my appetite stimulated by food smells that are obvious to everyone else.
I had my blood drawn today for Tuesday's nephrology appointment. The labs done today are for Iron, Renal Panel, and CBC. My blood appeared to me to be darker than normal, and cloudy. As always, I'll fill you in with the results after the appointment.
That's all for now. I'll likely do an entry on Monday so that on Tuesday I can only talk about the results of my Doctor visit.
Have a fun, but safe Labor Day weekend. I wish I was going out and about!
Good Health to All!
ScottW
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