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COVID-19 and Transplant Patients
Transplants | Last Active: Mar 6, 2021 | Replies (459)Comment receiving replies
One of my pet peeves is that medical people do not tell you everything about a procedure before it has been done. One of the downsides of some immunosuppresants is that your hands may tremble or shake. For most people, this might meant that their handwriting isn't as clear or nice, but my husband had been a very serious fly tier, tied for a few minutes or longer at least once every day. This isn't tying flies in order to catch fish, but tying superior flies to catch people who appreciate tying as an art. We thought that we had learned all the important things about transplants long before a kidney became available, but no one had ever mentioned the trembling hands! I believe that the fact he can no longer tie "perfect" flies led to the depression that has made life difficult for both of us since his transplant. If we had known about this effect, we certainly would not have rejected a transplant, but knowing it in advance might have made a real difference in how he accepted the trembling...or not. If you know that there will be a certain effect but elect to do whatever in spite of it, you feel that you made an informed choice, rather than having a bad effect imposed upon you.
My fear of docs that only mention the plus points and overlook the minus points is what has made me be very cautious about the possibility of a CI, which cannot be reversed. I have Meniere's, which has "special effects" of distortion and recruitment, along with fluctuation. These discouraging effects make it totally impossible for me to wear an aid on really bad days, as all I hear are horrible loud, sharp noises. I won't proceed toward a CI (a moot point during this time!) until I can find a Menierian who has had the procedure done and isn't bothered by amplified distortion or recruitment. So far, the docs at the hearing clinic have said, "Everyone just loves the improvement in their hearing with a CI," but when I ask about Meniere's they avoid commenting.
Sometimes the omission is only bothersome, like when he had a spinal MRI. When we saw the doc beforehand, he said that they do lots of them and that we'd be home in no time at all. So, we were surprised to learn that he had to stay in the hospital for several hours plus stay flat for another day afterwards. As it turned out, he had an appt. with our kidney doc the next day, which means a five-hour drive, obviously impossible for someone who has to stay flat, so we had to cancel the appt., which was awkward for us and even more awkward for the renal clinic. What's the point of a pre-procedure visit if you aren't given all the facts?
Replies to "One of my pet peeves is that medical people do not tell you everything about a..."
@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
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@joyces For every procedure, every medication, there is a spectrum of side effects and responses that may be experienced by a patient. It seems the degree of responses and side effects may be affected by other health conditions or medications, and general overall health. Medicine is not an exact science, and I really don't think a medical professional is purposely not disclosing information to patients. As patients, we do have the responsibility to look into procedures, and understand the ramifications as they pertain to us as an individual.
As an example, I had a kidney biopsy last October, my second one [first was in Jan 2015]. There is always a possibility of complications. What I did not expect, nor was it brought up, was the internal bleeding that happened right after meant there was added pressure by staff. I ended up with a cracked rib. Only by accessing the procedure reports was I able to determine what happened.
I am sorry your husband has experienced tremors as a side-effect of transplant medications. Has he spoken to his transplant team to see about if there is an alternative, based on how long ago the surgery was? Can he rig a device that will hold one part of the ties while he works on the tying? And most importantly, how is his health? It is not unheard of to experience depression after a life-altering operation like a transplant.
Ginger