Today, was one of those good news, bad news days although I think -- and am not sure at this point and not at all sure from David's POV -- that the good out weighs most of the bad.
So, first, David was suffering rejection of his new heart the last few days. The biopsy revealed that David was undergoing a 3b organ rejection. Rejection ranges from 0 to 3, with 3a being the most serious. Thus, 3b is pretty rough. Added to this, the docs don't know whether this is the normal type of rejection -- 60-70% of heart transplant patients have some rejection during their first year -- or whether it is due to the autoimmune condition that may have caused the body to damage his native organ. As serious as this is, David's new heart seems to be responding to the anti-rejection meds and so no matter the cause, the meds are meeting the challenge.
David received the Thymoglobulin today again and this time without reaction. He was better prepped for it this time with tylenol, steroids and some other med, as well as having the Thymoglobulin delivered slower than it was yesterday. We don't know right now whether he will continue to receive this medication. It can be delivered for one or two days or for an entire week. We'll see how David's number are tomorrow, and the docs will decide.
Because of these developments, David will be in the hospital for one, maybe two more weeks. It seems like forever right now, but we will do it.
David walked around the nurses station twice today. On one walk, he was able to go around twice. He was tired at the end of these walks but not as exhausted as he was yesterday. The PT gave him more exercises -- small weights and grippers to squeeze. It is still hard for David to motivate himself to do what he needs to but that's why Cheshire and I are there. It is hard to imagine how weak and exhausted he is -- maybe it is good that we cannot feel his weakness. Maybe if we did, we would not push him and he needs to do as much as we can get him to do physically.
David's other challenge right now is food. He does not feel much like eating and nothing tastes good to him. However, he managed to drink some ensure today and to eat some ice cream. I realized today that it is probably not a bad idea to bring him some of the wonderful food that people are bringing over. Even if it is only small tastes of good tasting things, it gets him eating again. Today, it is chicken and rice soup and cherry pie, both homemade. He did not eat enough of either to make a difference in his calories for the day, but it is a start.
2 comments:
Suzanne, I keep sending warm thoughts and prayers to all of you. I feel like I have some connection to David although certainly his procedure was much more complex than mine. But I relate and I sympathize.
Food was a problem for a long time. I ate jello for weeks and I don't even like jello. I remember once asking for and getting a t-bone steak. Just a steak, that was it. Mostly it was a struggle. I remember asking Judge Shields to bring me a milk shake but she said she couldn't find one so she pulled a brownie out of her suit pocket. She had picked it up at a funeral on her way to the hospital. It wasn't wrapped in a napkin or anything. She was truly surprised I wasn't more grateful. You will understand that because you know her.
There are no words to explain the utter exhaustion and lack of energy you feel. I remember the "parade" around the nurses' station. It seemed like miles. I wish I could do the work for him. And it is work. And it takes forever to gain strength back. Yes, you will have to continue to urge and push and encourage and maybe even yell at him to move. But it's all worth it in the end.
Wish I had just the right words to soothe you, but I don't. Know that everyone is pulling for you all. And I won't tell you to breathe. I might, however, tell you to drink!
Best wishes, Julia
I believe our sister Barbara would say keep pushing him, that is what he needs. I do believe that is correct and I remember when Mom was in rehab she refussed the therepy they all got upset with her. We all know how that turned out. So no matter how hard it may be keep pushing him.
Please believe we are all pulling for him and sending up lots and lots of prayer. All my love, Carol
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