22 March 10

Still no relief from how I have been feeling.

Though today is better than it has been, I am by no means feeling great. Wishing I could figure out if this is going to stick around. At 11 days now (and running), this would seem to be the case.

In any event, because of my feeling like this I am not wanting to eat anything as doing so only increases the nausea, discomfort, etc. However, I know that I must eat so I literally am eating even in the midst of feeling lousier with each successive bite. When I eat, it is usually just two small meals per day.

The malaise that accompanies the development of the PKD is starting to show itself. I continue to try hard to stay focused, positive, and forward-looking; but it is getting more difficult. Though I am keeping up with my online courses, my on-campus classes are suffering because I just am not feeling up to getting to class. This of course impacts my ability to get passing grades. I am trying; but I can only do what I can do. I accepted that possibility going into the semester.

My headache marches on into its 19th week. No relief in sight.

My sleep has been really off the past two weeks. Even though I am tired/exhausted most of the time, actually getting to sleep is a definite problem. I have read that insomnia is an issue with many advanced PKD patients, so I really shouldn't be surprised. I don't like it, though!

Also, with the way my stomach has been feeling I have been unable to rest anything on my stomach. Whether its my hands, a plate, a glass, my grand kids...it all increases the discomfort over my upper abdomen. When I sleep , if anything is even pressing a little over my gut it starts to hurt. This also impacts my ability to sleep.

I am seeing a little bit of edema in my feet. It's not much at this point, but it is definitely there. I can normally see ligaments and veins on the top of my feet both day and night. Now, I can't clearly see them even when my feet have been elevated. The edema is an important S/S of the PKD because it tells me that my kidneys are becoming unable to filter all the water out of my body that is needed to. Because of this, peripheral edema evidences as water begins to collect in the feet. (I think I explained that fairly well.)

The other S/S's that I have previously discussed continue as they have.

So, it would seem that the disease is definitely progressing faster than anticipated. If, during my next visit with my doctor, this turns out to be the case, I expect to be scheduled for shunt placement very soon. A fistula (my preferred shunt) must be in place 4-6 months ahead of the start of dialysis. This would mean I could start dialysis anywhere from Aug. to Oct. I'll let you know about this development as soon as I have concrete info [instead of my current speculation].

Good Health to All!

ScottW