Well I'm finally on my way home. I've been in the hospital since last Friday. I was admitted for a couple of different things...shortness of breath and weakness. At first we all thought the weakness was due to my flareup but we have since figured out that most of the weakness is due to the drugs I was given and the pheresis treatments.
Apparently I have a bit of neuropathy going on in my left left/foot and in my right arm/hand. They did a nerve conduction test and an EMG (a muscle test that's not all that comfortable). The tests showed some myopathy but they didn't know yet if it was getting better or worse. They want to repeat the test in a few weeks and have me get a brain scan (I'd finally know if I had one!!!). The tx team doc said that as long as I was comfortable with it I'd get discharged today and see Dr. Zaas next Wednesday. At that point they will decide if I should have a brain scan or not. They would just do it out-patient.
I still feel weak as can be but I decided this morning that I have my baseline set too high. I keep pushing myself to reach a level of ability that I had several months ago. Then I get frustrated with myself that I can't achieve it!
Three months ago...I didn't use my walker; I didn't stop at each doorway to catch my breath before I kept moving; I didn't get worn out chewing steak or chicken or other "firmer" foods; I could talk on the telephone without having to hang up because I didn't have any breath left; I had enough strength to pick up a jar of spaghetti sauce; I could reach down and pick things up off the floor; etc.
None of that is possible now so logic says that I have my new baseline. By knowing this I can measure progress and slippage. I won't get frustrated if I dip a little because it's from my new baseline - not the old!
Lee was so awesome this week! He came every day and brought me whatever I needed and didn't wake me up when he came if I was sleeping. One day he brought Dominoes to play and another day he brought playing cards. Both were easy to use on my table tray. They were really fun diversions from the rest of the day...you gotta love him! He also found sugar-free wafer cookies that are really good. I'm still struggling with the diabetes and it's gotten more active with the steroids.
Other than medical stuff, we've been developing our "Things to do Post-Transplant" list. There are so many things that I can't do now due to breathing issues. Number One on my list is Disneyworld the first week in December. We've never been to Disneyworld and we've never been to Disneyland when it's decorated for Christmas. That will be soooo fun. Of course that trip will probably bankrupt us (but it's so important that the cost isn't as important as it should be). We had better to plan the other activities so they don't cost much :-) Going back to CA for Christmas this year is a really big want for both of us. We're hoping we can make it!!!!
I hope everyone is having a super summer. We really are having a good time here even though it sounds sort of "sick". We've made friends through the church we attend and a couple in the apartment. Lee and I are learning to appreciate the very little things...like just sitting next to each other holding hands and watching House reruns from our DVR or sitting across from each other while we each play Sudoku.
Life really is good even when you can't breathe!!!
We love all of you and wish you a great weekend,
Lee, Wendy and Missy