A few very difficult days.
On Friday night I started getting a big uptick in nausea. It awoke me at 4A, and I took a dose of the anti-emetic (Promethazine). As always, it took about 30 grueling minutes to kick in. Once it did, I was finally able to get back to sleep.
Unfortunately, just like every time I take that med, I was extremely groggy almost all of Saturday. I took naps totaling about five hours over the course of the day. When I wasn't sleeping, I was continuing to feel nauseated, and going through multiple bouts of diarrhea. I was able to keep some food down on Saturday evening, but that didn't stop the nausea from getting terrible a few hours later. So, it was another dose of the Promethazine.
I slept fitfully (that's really not that unusual, though) and awakened with more nausea. I only took a half dose of the anti-emtic this time in hopes of not sleeping all day. As I write this, I've only taken one short nap today. However, I remain very nauseated. I took another dose of Promethazine about an hour ago. While the nausea is better, it is by no means gone. It is definitely still there; making me uncomfortable and not wanting to snack or even drink anything.
In the middle of all this nausea, my mid-back over the kidneys has been extremely painful; more so on the right (as usual). The ONLY thing that alleviates it--or rather, masks it--is the T3's. This pain has been going on since my last doctor visit on Thursday when the kidney area was palpated to determine sensitivity...and I can tell you with 100% confidence that that area is painful!
I was able to buy myself a big comfy recliner for when I do my home dialysis. I think I already told you that I am doing as much as I can ahead of time so that starting dialysis isn't a monumental production. So, I am doing things such as buying the chair, changing sides of the bed [so I don't occlude the maturing fistula], etc. The more I can do ahead of time, the easier will be the actual transition to having dialysis. Anyone reading this who might be facing dialysis, I strongly encourage you to educate yourselves as to what needs to be done, or what supplies you might need, and get it done well in advance. At the very least, your costs are spread out to manageable amounts.
Well, that's all I can think of for tonight.
Good Health to All!
ScottW
Sunday, February 27, 2011
Thursday, February 24, 2011
24 Feb. 2011
Here's the latest news...
My kidney function is essentially the same. That now makes it two consecutive visits with under 20% function--which means my kidneys are officially screwed. ;o)
My labs indicate that there is still nothing else going on besides the PCKD. (YAY!!!!)
Today we discussed how to know that I am needing immediate dialysis. This discussion was needed in case my kidneys take a dive before the fistula is ready to use. Things to look for include:
-Not eating anything for at least three days;
-Lots of emesis (vomiting);
-Stop drinking anything;
-Skin smells like urine;
-Highly evident systemic edema (beyond anything I've yet experienced);
-and a few other things I can't recall.
Again, if I need the dialysis prior to the fistula "maturing," then a temporary exchange site--either subclavicular, or in the neck--will be utilized until the fistula is ready. This is NOT a desirable option because both catheter routes run a high risk of infection introduction.
My latest labs are as follows:
-PTH 108.0 (22.2-108.9) *Big jump since last month's 71.9.
-K+ 4.4 (3.5-5.5) *+.20
-Glucose 97 (65-109) *<7>
-BUN 37.0 (5-26) *<2>
-Creatinine 3.6 (0.5-1.5) *<.2>
-WBC 5.2 (4.5-11.0) *+.24
-RBC 4.3 (4.7-6.1) *+.11
-Hematocrit 35.2 (42-52) *+.5
-Other blood wastes are on the high end of the scale.
The only number above which concerns me is the PTH, or ParaThyroid Hormone. It is AT the top of the scale, and took a huge leap this last month. Too much PTH can lead to cardiac issues, bone degeneration, etc. Let's hope that does not increase this month.
So that's the latest. More waiting...waiting for my AV Fistula surgery...waiting for disease advancement...waiting to feel worse with each passing week. In other words, things are going almost exactly as they should--which is great!
There was something else...
...sorry, can't remember (what a shock, eh?).
As always I will continue to keep everyone informed as to progression. I want to again thank everyone for your thoughts and prayers. Without your efforts I have no doubt that this trial would be far worse. Thank you!
Good Health to All!
ScottW
My kidney function is essentially the same. That now makes it two consecutive visits with under 20% function--which means my kidneys are officially screwed. ;o)
My labs indicate that there is still nothing else going on besides the PCKD. (YAY!!!!)
Today we discussed how to know that I am needing immediate dialysis. This discussion was needed in case my kidneys take a dive before the fistula is ready to use. Things to look for include:
-Not eating anything for at least three days;
-Lots of emesis (vomiting);
-Stop drinking anything;
-Skin smells like urine;
-Highly evident systemic edema (beyond anything I've yet experienced);
-and a few other things I can't recall.
Again, if I need the dialysis prior to the fistula "maturing," then a temporary exchange site--either subclavicular, or in the neck--will be utilized until the fistula is ready. This is NOT a desirable option because both catheter routes run a high risk of infection introduction.
My latest labs are as follows:
-PTH 108.0 (22.2-108.9) *Big jump since last month's 71.9.
-K+ 4.4 (3.5-5.5) *+.20
-Glucose 97 (65-109) *<7>
-BUN 37.0 (5-26) *<2>
-Creatinine 3.6 (0.5-1.5) *<.2>
-WBC 5.2 (4.5-11.0) *+.24
-RBC 4.3 (4.7-6.1) *+.11
-Hematocrit 35.2 (42-52) *+.5
-Other blood wastes are on the high end of the scale.
The only number above which concerns me is the PTH, or ParaThyroid Hormone. It is AT the top of the scale, and took a huge leap this last month. Too much PTH can lead to cardiac issues, bone degeneration, etc. Let's hope that does not increase this month.
So that's the latest. More waiting...waiting for my AV Fistula surgery...waiting for disease advancement...waiting to feel worse with each passing week. In other words, things are going almost exactly as they should--which is great!
There was something else...
...sorry, can't remember (what a shock, eh?).
As always I will continue to keep everyone informed as to progression. I want to again thank everyone for your thoughts and prayers. Without your efforts I have no doubt that this trial would be far worse. Thank you!
Good Health to All!
ScottW
Monday, February 21, 2011
21 Feb. 2011
It's now been four days since I ate a meal.
Besides a few snacks and liquids, that's quite literally the truth of the matter. For the most part I haven't been hungry. As a result, my daily food intake has plummeted to about a single cup. No kidding. Even most of my usual snacks are completely unappetizing. I don't know why this sudden change has occured; but I will be telling my doc about it this Thursday at my next appointment.
Speaking of that, I'll be doing my usual blood draw tomorrow. I usually get it done a week out, but because of how I've been feeling I haven't gotten to the lab.
The ammonia smell has been terrible.
My headache is at a constant 9.5. I'm sure part of it is my lack of food intake. Plus, my sleep continues to be fitful, at best; and my naps are completely unrestful. It all combines to increase my headache to its current level.
I continue to be without energy. The exhaustion is so overpowering. I am doing my best to get through from day to day. My body is just dragging. Meanwhile, though I am sleepy all of the time, my mind remains in a good place--at least THAT hasn't changed! I am so thankful that this struggle continues to be physical; I really do need my mental resolve throughout each day.
I still am awaiting word of the fistula surgery scheduling. I don't know what the holdup is; I'm trying to be patient about it; but time is getting on and I really need that procedure.
I've been given a new thing to do every day. I mentioned in November that my father died. As part of his estate gift to me, I received numerous pictures that I can now scan into my computer, fix up, label, etc. This little project will take me quite a while--depending on how I feel from day to day. I'me very much enjoying working on the pics!
That's about all I've got for now. I know I had something else to say, but...
(well, you know how my brain is right now...)
Good Health to All!
ScottW
Besides a few snacks and liquids, that's quite literally the truth of the matter. For the most part I haven't been hungry. As a result, my daily food intake has plummeted to about a single cup. No kidding. Even most of my usual snacks are completely unappetizing. I don't know why this sudden change has occured; but I will be telling my doc about it this Thursday at my next appointment.
Speaking of that, I'll be doing my usual blood draw tomorrow. I usually get it done a week out, but because of how I've been feeling I haven't gotten to the lab.
The ammonia smell has been terrible.
My headache is at a constant 9.5. I'm sure part of it is my lack of food intake. Plus, my sleep continues to be fitful, at best; and my naps are completely unrestful. It all combines to increase my headache to its current level.
I continue to be without energy. The exhaustion is so overpowering. I am doing my best to get through from day to day. My body is just dragging. Meanwhile, though I am sleepy all of the time, my mind remains in a good place--at least THAT hasn't changed! I am so thankful that this struggle continues to be physical; I really do need my mental resolve throughout each day.
I still am awaiting word of the fistula surgery scheduling. I don't know what the holdup is; I'm trying to be patient about it; but time is getting on and I really need that procedure.
I've been given a new thing to do every day. I mentioned in November that my father died. As part of his estate gift to me, I received numerous pictures that I can now scan into my computer, fix up, label, etc. This little project will take me quite a while--depending on how I feel from day to day. I'me very much enjoying working on the pics!
That's about all I've got for now. I know I had something else to say, but...
(well, you know how my brain is right now...)
Good Health to All!
ScottW
Friday, February 18, 2011
18 Feb. 2011
I don't have a whole lot to say today aside from passing on that my headache has intensified to between 9-9.5, and that I am exhausted far beyond anything I have previously experienced.
I barely even have enough mental or physical energy to write this update. For the last two days I have done next to nothing beyond showering. I have taken numerous naps both days and still get no relief from the tiredness.
Plus, my food intake has been terrible [again]. Yesterday I ate all of about two cups of food; today, I have not eaten at all--It's now 9p local time. I haven't been hungry in the slightest.
That's all I've got the energy for. Hopefully, I'll be up to writing a better entry the next time around.
Good Health to All!
ScottW
I barely even have enough mental or physical energy to write this update. For the last two days I have done next to nothing beyond showering. I have taken numerous naps both days and still get no relief from the tiredness.
Plus, my food intake has been terrible [again]. Yesterday I ate all of about two cups of food; today, I have not eaten at all--It's now 9p local time. I haven't been hungry in the slightest.
That's all I've got the energy for. Hopefully, I'll be up to writing a better entry the next time around.
Good Health to All!
ScottW
Sunday, February 13, 2011
13 Feb. 2011
Nothing has changed in the last week.
All of the previously noted S/S's are going strong, and no letup in sight.I should find out tomorrow (Monday, 14 Feb) about the scheduling for the AV Fistula surgery. I wish the process wasn't taking so long; but hey...healing from that is one less thing I have to deal with right now. The surgery will happen when it happens; and I will be given the strength to push through the healing.
My dreams have started becoming uncontrollable. Even with semi-conscious awareness of what I need to do to control situations, I am growing increasingly unable to do so. I really shouldn't be surprised by this. After all, my body is dying (literally), and there isn't a damned thing I can do about it. Plus, with how I am feeling month after month, my mind has to sort things out for itself.
Consciously I am doing great. No depression, no sadness, etc. I know that though the struggle is terrible right now, it WILL be overcome with transplantation. Also, along the way I am going through the steps to have dialysis--which should help me feel better--so, while my body continues to shut down, there is a gigantic ray of certainty and hope that all will be wonderful once again.
There is no reason to be sad or feel hopeless. I continue to adamantly believe that I still have too much to accomplish in the years ahead. So, while I will allow myself a day now and then to feel exhausted from the fight, the strength I receive from others picks me up, and I continue to fight the good fight. It's not easy to do by any stretch; But again, the alternative is just not palpable. It's just not within my inherent makeup to give in to trials and despair. I'm way too stubborn to do that! :o)
Anyway, that's all I really wanted to pass on today.
Good Health to All!
ScottW
All of the previously noted S/S's are going strong, and no letup in sight.I should find out tomorrow (Monday, 14 Feb) about the scheduling for the AV Fistula surgery. I wish the process wasn't taking so long; but hey...healing from that is one less thing I have to deal with right now. The surgery will happen when it happens; and I will be given the strength to push through the healing.
My dreams have started becoming uncontrollable. Even with semi-conscious awareness of what I need to do to control situations, I am growing increasingly unable to do so. I really shouldn't be surprised by this. After all, my body is dying (literally), and there isn't a damned thing I can do about it. Plus, with how I am feeling month after month, my mind has to sort things out for itself.
Consciously I am doing great. No depression, no sadness, etc. I know that though the struggle is terrible right now, it WILL be overcome with transplantation. Also, along the way I am going through the steps to have dialysis--which should help me feel better--so, while my body continues to shut down, there is a gigantic ray of certainty and hope that all will be wonderful once again.
There is no reason to be sad or feel hopeless. I continue to adamantly believe that I still have too much to accomplish in the years ahead. So, while I will allow myself a day now and then to feel exhausted from the fight, the strength I receive from others picks me up, and I continue to fight the good fight. It's not easy to do by any stretch; But again, the alternative is just not palpable. It's just not within my inherent makeup to give in to trials and despair. I'm way too stubborn to do that! :o)
Anyway, that's all I really wanted to pass on today.
Good Health to All!
ScottW
Monday, February 7, 2011
07 Feb. 2011
It's been seven days since my last entry, and all seven days can be easily summed up in three words...Exhaustion; Fatigue; Headaches.
I haven't written these past seven days because of being so fatigued that I haven't had the mental energy to write up an update. My body is really feeling terrible as time goes on. A week or two ago I began having lots of leg pain and body aches. These things continue. I looked up possible causes, and in the little reading I've done so far,the most likely cause appears to be calcium deprecition in the bones and muscles. This is, of course, caused by the kidney's inability to properly regulate calcium in the blood, so they draw the calcium out of the bones and mucles in order to compensate (I think I've gotten that right...). From what I've read, approx. 85% of End Stage patients report similar pain. I don't yet know what I'll be doing about it. I'll let you know.
Because of the leg and body aches, my ability to sleep has once again been compromised. Most nights I cannot sleep laying down, and have ended up sleeping in a big comfy chair (with ottoman). On the rare occasion I can sleep in bed, I am only asleep for four hours (at most) before I am either awake, or I try and sleep more in the chair.
My headache has been intensifying over the last week. It is sharper, stronger, and far more difficult to control. Even the T3's are only just keeping it from exploding. The headaches are now averaging about a 9. I hope they decrease soon.
I'm still awaiting word on a scheduling for my AV Fistula surgery. I'll post the date as soon as I know.
My appetite, smelling Ammonia, edema, and how cold I feel are all unchanged. The only good news in all of that is that I continue to have a better food intake from day to day.
That's all I can remember that I wanted to write. If I think of anything else, I'll just edit this blog.
Good Health to All!
ScottW
I haven't written these past seven days because of being so fatigued that I haven't had the mental energy to write up an update. My body is really feeling terrible as time goes on. A week or two ago I began having lots of leg pain and body aches. These things continue. I looked up possible causes, and in the little reading I've done so far,the most likely cause appears to be calcium deprecition in the bones and muscles. This is, of course, caused by the kidney's inability to properly regulate calcium in the blood, so they draw the calcium out of the bones and mucles in order to compensate (I think I've gotten that right...). From what I've read, approx. 85% of End Stage patients report similar pain. I don't yet know what I'll be doing about it. I'll let you know.
Because of the leg and body aches, my ability to sleep has once again been compromised. Most nights I cannot sleep laying down, and have ended up sleeping in a big comfy chair (with ottoman). On the rare occasion I can sleep in bed, I am only asleep for four hours (at most) before I am either awake, or I try and sleep more in the chair.
My headache has been intensifying over the last week. It is sharper, stronger, and far more difficult to control. Even the T3's are only just keeping it from exploding. The headaches are now averaging about a 9. I hope they decrease soon.
I'm still awaiting word on a scheduling for my AV Fistula surgery. I'll post the date as soon as I know.
My appetite, smelling Ammonia, edema, and how cold I feel are all unchanged. The only good news in all of that is that I continue to have a better food intake from day to day.
That's all I can remember that I wanted to write. If I think of anything else, I'll just edit this blog.
Good Health to All!
ScottW
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