05 June 2011

Wow...Lots of icks in the days since my last report.

To start, lets talk about edema. I had several concurrent days of my feet looking like Hobbit feet, but with painful swelling and LOTS of pain on walking. The edema seems better [for a while] keeping my feet up. However, I've also had times that my feet have swollen when they are elevated. Today the edema is nominal for the first time in a week. However, both my feet are painful just about all of the time now. I don't know if this is permanent; but I guess we'll be finding out very soon!
Additionally, the edema has been present up past the knees, and in the hands...especially my fingers.

Next, let's talk about the ongoing headache. Now just short of 19 months in duration, the headache has continued its increased intensity; though the sharp pains have backed off a bit (thank goodness!). For the first time in this whole thing, my daily T3 usage has upped to an average of 3.75 doses/day. This includes several days of taking 4-6 doses which only just kept the pain under control. I continue to use my TMD occlusive devices just to eliminate the possibility of S/S's of the TMD rearing up; but so far, I've only had a couple of days with TMD complications on top of this damned headache.

My appetite has been mixed once again. I'm getting hungry a lot (as before); but that hunger quickly morphs into intense nausea. Oftentimes when I eat these days I end up with nausea anyway...a no-win situation. Plus, my range of foods that are appealing is shrinking again. Right now I continue to crave protein (meats--not legumes), but only tolerate fresh veggies. I can't stand pastas, right now, but will eat some breads. Sugars are becoming unpalatable--even drinking Coca~Cola is becoming a chore. Salt in any amount seems overwhelming to my palate. I avoid fresh fruits because they just aren't appealing. Potato's seem to be holding out for me; though too much and they become inedible for me. Dairy products seem to be consistently appealing as well, though my taste buds are becoming tired of these in large amounts. All of this leaves me with a smaller and smaller pool of foods from which to eat--well, at least, eat as little as I do these days.

While my skin does not yet smell of ammonia, I have definitely noticed that my skin is becoming clammy and feeling dirty a lot sooner than even a month ago. Where before I could go two of three days between showers (simply because I'm not doing much; not generating sweat, dirt, etc), I now find myself wanting to get clean after just one day. I don't always act on this just because I'm feeling lousy, or because no one is home and I'm wary of the increasing chance of getting bad vertigo while in the shower and really don't want a ground-level fall with no one else home.

Speaking of vertigo, it marches only as relentlessly as my headache. I never know when it will strike. There have been days where it has been only minor all day, only to suddenly increase its intensity, and I have to grab something to stay on my feet. When out walking, my cane is increasingly keeping my from falling a number of times each outing. The last few weeks even a minor raising of my head [while standing] has caused intense vertigo. This is getting progressively worse as the disease runs towards its conclusion. As far as waking to the room spinning, it is still happening, but only occasionally. However, I am getting immersed in dizziness even when sitting in my recliner--and for no apparent reason. THAT one really sucks. I literally grab the arms of my recliner, keep my eyes open (because closing them only increases the sensation), and just hang on until it passes. NOT fun!

My urine has been consistently cloudy, and extremely odoriferous. It is especially so when I've had a lot of edema. Yes, of course it's tied in to the edema; I just thought I'd throw out that info. In addition, I have remained correct in the decrease of overall urination (volume and frequency). The decreases have now been going on for about three weeks.

My sleep and naps remain terrible. Exhaustion is now a way of life...unfortunately. Naps this last week have averaged four hours in length. So, coupled with my nightly sleep average, I am now getting about eleven hours of sleep per day. For someone who for years functioned extremely well on 5-6 hours per day, the current eleven hours feels like I am wasting an incredible amount of time, which id extremely frustrating to me. On the other hand, I'm not really doing much these days, so I really shouldn't be worried or frustrated. It's just a thing I must mentally deal with.

My state of mind remains very good. I continue to look forward to a post-transplant life; but I do become impatient for it to get here. My back injury and subsequent surgery and recovery taught me a whole lot about state of mind. As I've mentioned before, I apply those lessons every day, and endeavor daily to avoid the pitfalls of depression, discouragement and hopelessness. No bueno, my friends. Those are NOT places I am willing top go!!!

On that note, I'll end this entry.

I've got the two month follow-up with my vascular surgeon on Wednesday. I'll tell you all about it!

Until next time...

Good Health to All!

ScottW