@joyces I agree with @gingerw, I do not think many doctors would consciously omit potential side-effects. If the side-effect is uncommon they may minimize the risk of it though. I had an ablation for malignant lesions in my liver and was told that more than likely I would go home a couple of hours afterward. I did not, I had to stay overnight. The day after I got home I awoke in terrible pain. It turned out it was because they had to pump a lot of air or something into the area because I had lesions right on the border of my liver and they didn't want to affect anything else. The following day I was fine again.
I never heard of tremors after transplant. I had very bad ones prior to transplant -- I couldn't get a spoonful of soup to my mouth and it was impossible to take a picture. Now my hands are steady once again. I guess this is a difference in the immunosuppressants a person takes. I am on sirolimus and prednisone. Do they anticipate that your husband's tremors will go away eventually? I hope so. That would give him more hope for the future.
You mention that he is very sedentary. You said you are 77 but I didn't see his age. Assuming it is close to your own, he may just be experiencing old age. My husband has always been amazingly active but in the last year or so he does a lot of sitting on the sofa and watching TV. Right now he is actually outside doing some raking but he rarely does that, we have most of our yard work done by a service. If you can encourage him to gradually be more active that would probably help a lot. I know, you probably already know that and have tried, but keep trying.
@gingerw @fatherscaregiver @joyces I have heard of people having depression after transplant too, akin to PTSD. I never had anything like that so I am very surprised that people do. I do feel a great deal of remorse when I think of the wonderful young woman who passed away due to hospital mishandling. She should still be alive and it always makes me sad when I think of her, to the point of getting some tears in my eyes, but that is not depression.
@fatherscaregiver Your father is only a year or two older than I am, I will be 73 in September and am very active. I figure if I am not my health will suffer. My PCP and my son are like cheerleaders for me because I am so active and go to a gym to exercise, etc. I wish you could somehow get your father to be more active also. Perhaps if he was in some type of rehab center for a while they could encourage him - basically push him - to more activity. I was in one for a week after a knee replacement and they forced me to do three therapy sessions a day. I didn't mind the therapy, just the timing. I was tired and never seemed to get time to take a nap!
@wildcat I agree that finding the right combination of drugs must be an art as much as a science since we are all different. I think that's why it's so important to find a great transplant center, with an excellent record post-transplant too. It's interesting to see the statistics published by SRTR.org on transplants that include survival after transplant. My hospital, Mass General, is not high in getting a liver but is very high in survival after transplant. I didn't see these stats prior to transplant. I wonder if it may have made me choose differently, but I am very happy with my results.
JK
Reply to JK, volunteer monitor: My husband is five years younger, just turned 73 (I'll be 78 in a few weeks). He was active in spite of back problems/pain, low kidney function, and dialysis three nights a week, but retired when he got his transplant and hasn't done anything except lounge in his recliner (which increases the back pain and has caused bone loss in his hips). He reads, watches TV, eats all meals in the damned recliner, spends his days there, except when he has so much pain he lies down on the couch to watch TV.
Apparently, Portland's Legacy Good Sam has a stellar record/does lots of transplants and has med dosages pretty well dialed in. Again, he's only had two small changes in meds, one soon after transplant and one a couple of years ago, both small reductions in dosage. He takes mycophenalate and tacrolimus in addition to prednisone; I don't know which causes the hand tremors, but they a permanent feature of one of the meds. Because he's never had even a hint of rejection, we certainly aren't in a position to complain about the meds that make that possible!
I feel that this marvelous gift of a kidney that should have made his life whole again is being wasted. Due to almost total lack of inactivity, he's gained 20 pounds, which only increases the back pain. Because I have Meniere's and zero normal balance, I'm very familiar with the fact that imbalance alone causes back pain; if I have to stand in one place for any time, I have dreadful pain because I have to work so hard to avoid tipping over. The excess weight and imbalance are two of the reasons that the pain mgmt. clinic insisted he needed to obtain some level of fitness.