28 June 2011

Another  downward turn the last four days.


My little break...such as it was...is now over. A strong return of the major S/S's to their increased level was evidenced on Saturday morning. Let's start with edema.


I told you earlier that the edema was diminished in the mornings and bad at night. On Saturday the edema never went down. My feet were swollen and ugly all day. Since then they decrease about 50% (from their worst), but my feet are quickly swollen not long after waking. When my feet swell the skin gets tight, itchy and incredibly uncomfortable, and even painful when walking. Even when my feet are elevated the swelling does not decrease, yet the pain and discomfort persist; so much so that my calves on both legs become painful from resting against the recliner foot rest.
The other day I absentmindedly rested my right leg (on the calf) over my left knee. I was somewhat comfortable for however long it was there until my R leg became painful. I realized my mistake in keeping the leg in that position. I looked at the calf and say a very visible depression in the skin that looked like my kneecap. It was about 1/8" deep, and the impression stayed there for over an hour before finally rebounding. I keep forgetting to get comparative pics to post on here. i'll try to remember to get it done in the next day or so.


Next, my nausea. Ick, Ick, Ick! I've come very, very close to emesis a number of times since Saturday. The promethazine kicks in just in time. I'm talking feeling like it's time to go kneel before the great porcelain goddess to offer up what isn't in my stomach, and then the anti-emetic takes hold and the nausea is gone. I've come that close. No fun there.


Because of taking the Promethazine, my napping has taken a predictable turn for the worse. The last four days my naps have been, in order, (1) Three hours, two hours, (2) four hours, 45 minutes, (3) three and a half hours, one hour, (4) four and a half hours. This has been on top of a minimum of 7 hours of restless sleep. Speaking of sleep, it has been poor, to say the least. A lot of the time I'm just not feeling well so my sleep is not good. My dreams have been OK; I am controlling things just fine; I am just restless from the physical nature of what's going on.


Next, the mid-back pain. On Sunday afternoon I had a sharp increase in pain in my mid-back area, over the kidneys. This increase led the pain to go from present and very uncomfortable (I'd gotten used to that level of pain) to downright painful. Plus, the pain is referring around both sides to about the middle of the rib cage. I don't think the pain is from any spinal misalignment because on palpation, the pain is worse than ever. Plus, the pain does not go away when laying, sitting, etc. It is constantly there. On a pain scale I'd estimate that things went from a three to an eight.


My headache returned to its elevated normal of about 9.5. No surprise there. I'm continuing to control it with T3 usage. My average daily usage on the T3's is now 3.92 (as of last month's total usage).


My urine has been exceptionally odoriferous. Lots of cloudiness, too. No pain on urination which might indicate a kidney stone (thank goodness!); but the volume is never consistent, either. Plus, there are two things going on with my bladder. One, it feels full every time I urinate; but only about 33% of the time is the flow indicative of a full bladder. Two (and I'm told by my doc that this is normal for advanced PCKD patients), I have to always wait to finish urinating. My bladder may not be done even though the obvious flow has ceased. So, I wait to know that the flow has stopped. Doing otherwise has led to leakage that I cannot feel is happening. I don't know about this in female patients; but amongst male PCKD patients, this is a common occurrence. My advice...just wait to zip up until you're sure things are done!


I am often asked if what I share on this blog is embarrassing in any way. I tell anyone asking that there is no room for embarrassment. In order for me to provide an accurate, truthful account of this journey, I must set aside any embarrassment. I cannot do my readers and fellow PCKD patients any good if I omit certain facts that many others would consider too personal. I have not found a similar account of PCKD, and I strongly feel it is vital to provide as much fact and insight as I can.


Anyhow, I'm tired, so I'll wrap this up.


Good Health to All!


ScottW