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COVID-19 and Transplant Patients
Transplants | Last Active: Mar 6, 2021 | Replies (459)Comment receiving replies
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.
Replies to "Reply to JK, volunteer monitor: My husband is five years younger, just turned 73 (I'll be..."
@joyces it's the Prednisone that causes the tremors at least with me. I'm on only Tacrolimus only now they took me down to 0 during the first 6 months on the prednisone. I'm actually heard that prednisone is usually one of the first to eliminate because of the tremors and lack of appetite which for me was a blessing. Food for me that first 6 months tasted awful.
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@joyces I am replying here because I checked the discussions that @colleenyoung mentioned and the postings were not there yet.
It sounds as if his transplant center is doing a good job of moderating your husband's medications to prevent rejection. I too have had my medications changed a few times. More often shortly after transplant and then once recently when I decided to take my immunosuppressant without food - they say to take with or without food, but it does make a difference in how much of the medication is absorbed so I chose to take it without food so I could take a lower dose. I was on tacrolimus for a while but it was causing me to have high creatinine numbers so I was switched to sirolimus. I did take mycophenolate (Cellcept) for about 6 months after transplant. Apparently both of those medications can cause tremors. Are the tremors worse in the two hour period after taking the immunosuppressants? In the info on tacro it indicated that is most common.
I too have never had any hint of rejection but my transplant surgeon has very confidently told me that if that should happen they can handle it. My transplant was across the country from you, at Mass General Hospital.
Men tend to be loathe to admit they may be having a psychological problem. He might believe it more if he was encouraged by his doctors to seek some help -- wives are often the last ones they will take advice from. I believe you are absolutely correct that his lack of physical activity is exacerbating his problems. I guess it's the old "you can lead a horse to water but you can't make him drink".
You say you didn't get a call for his yearly check-up. I'm surprised that when he went in for his last check-up they didn't automatically make an appointment for the next year. My transplant center does that and I think that it is pretty common.
You mention not being able to use the phone. Do you have hearing aids, many people with Meniere's do. If you do many brands can connect directly to phones if both have Bluetooth. I have Oticon HAs and I can hear better on my iPhone than I can on our landline. I have taken my landline number off of all of my doctor's information.
@fatherscaregiver I believe my transplant team consists of all of the doctors you mention, but the only ones I see are my transplant surgeon and my oncologist -- I had malignant lesions in my liver which they are still watching to make sure they did not metastasize.
Your father and @joyces husband could definitely benefit from some counseling. I hope they will finally see the light and let themselves take advantage of that help.
JK