This is one week before the operation, our granddaughters came to trick or treat at Grandma and Grandpa's house. Two weeks later, when they came back with their mom to get some things to send to Tim and I they told their mom that "It isn't much fun at Grandma and Grandpa's house without them here" It will be even more fun to visit when we come home with a healthy Grandpa!
It has been a bit hard for me to write lately. Sometimes writing is a good release and other times, when I am a bit too frustrated, it is hard. Recovery is not easy, and I want it to be. On Tuesday we went to the support group and there were several (4) pre-op liver patients. They were frustrated with the same thing we were frustrated with before the operation; you have to be sick enough to undergo the operation. If recovery were easy, if the process were easy they would not have to wait until the % chance of dying without the transplant is greater than the % chance of dying from it. When I consider the options for the short-term outcome of this operation, I have to come to terms with the fact that it comes with difficulty, frustration, and no promises. That being said, I am the eternal optimist. I choose to look at the best outcomes, and work to that end. So I believe that we will walk the MS walk together this spring, with some family and friends. But every once in a while, I look down while I walk and see the empty spaces on which I stand. If one chooses to stand still, or continue to walk, it makes no difference, what supports us does not change. So we might as well take the next step.
Aliens: The medication that suppresses the immune system and tricks the body into keeping the liver is a steroid. It has multiple side effects. One side effect is a range of emotions, sometimes called riod rage. Tim and I were talking about this the other day and he said that sometimes he looks back on the day (or hour) and wonders if aliens have taken over his body. In a moment of clarity he asked me to give him some time to recognize his ill behavior and beg for forgiveness. I begrudgingly agreed. We laughed at the idea of preemptive pardons. Later my sister said there should be some type of statute of limitations, how long do I wait - not very long usually - and how far back in our 37 years can he claim medications as the cause of his actions.
The medication has other side effects; night sweats, swings in blood sugar levels, diabetes for people that were not diabetic before, seizures, tremors... the list goes on. People do not usually get all of them; some are common, like the night sweats and high blood sugar.
The other night Tim played a bad joke on me, but it had the right outcome. We both laughed so hard that it started to hurt. Nighttime is always the hardest and the other night I could not go to sleep. It was early morning 1-2 am and I had to watch him. He could not relax, his body kept twitching, some times small, a finger or foot, other times it seemed his whole body jumped. I tried to rub his arm, and shoulders to help him relax. Don’t think this is because I am a good wife, it was 2am and I wanted to sleep, so it was with mixed motives that tried to sooth his movement. I would stop and watch him, and then it would start again. At one point his hand became ridged and I rubbed his fingers and palms, put his hand down on the bed. This repeated itself several times and I began to think of all the things that could be wrong. The list of side effects ticked off inside my head, tremors, seizures... and then he opened his eyes and smiled. He has a little boy laugh when he pulls a prank. I was so mad, relieved, and mostly aware that I was fussing over him a bit too much. A good belly laugh can pull all the tension from your body, and we both slept well for the rest of the night.
Rejection: Tomorrow we go in to see if the doctors can find the cause of Tim’s elevated blood levels that indicate his body is trying to reject the liver. We do know that the blood work shows that he is not getting the correct dose of medication - the one with so many side effects, so we have temporarily increased the dose to 3 times his start value. Low levels of this drug allows the body to begin attacking the new liver, high levels suppresses his immune system so that he cannot fight off any infection. It is a balancing act. I have been reading up on how the medications work, how this process works, but I have discovered again why they call medicine a practice. Each transplant group goes about the process of recovery a bit differently, and they modify their protocol with every patient. The goal remains the same; the way to get there can differ. When I teach, I try to help my students identify their own misconceptions, to help them understand the traps and barriers we construct that will eventually keep us from understanding. As I am working to learn in this new situation, I have to check my own misconceptions, so I do not have false hopes, or be too arrogant to know that my own understanding is still short. I am reminded of the verse in the bible that says "But now we see in a mirror dimly...”. No one can know everything, not even the experts, so they must practice, and I must trust their practice, and ask questions.
It is good to have friends and family help keep me grounded and focused. It is even better for Tim to have friends and family that keep me grounded and focused; your work might never be done, but thank you for trying.
Love to all
Tim and Judy
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