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COVID-19 and Transplant Patients

Transplants | Last Active: Mar 6, 2021 | Replies (459)

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@contentandwell

@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

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Replies to "@joyces I am replying here because I checked the discussions that @colleenyoung mentioned and the postings..."

Mostly I only lightly follow posts but I must say your post here is excellent! Nice job, JK!

@contentandwell, Joyce made an excellent post in the Aging Well group. I hope you'll respond there too.
- Major Changes as Spouses Age https://connect.mayoclinic.org/discussion/major-changes-as-spouses-age/

Meniere's is much more than simply not hearing. It offers severe distortion (you can hear that someone is speaking, but it's just whispery or raspy noise sans actual words) and recruitment (sharp noises or even someone rattling paper can slice painfully through your head). Worst of all, the degree of ability to hear fluctuates from hour to hour. Someone you could understand yesterday is impossible to decode today. Electronic things like phones and TV make the distortion far worse. I first had serious trouble with Meniere's about 40 years ago; after four years of crises (12-15 hour vomitfests) I had lost all hearing and balance function on my right side. That ear was declared not aidable 35 years or more ago. I got the monster shoved into the closet, but must not have nailed it tightly shut, as he got out a year ago when I went bilateral after a remission of over 30 years. At first it was only inability to hear, but then it became daily visits of such vertigo that you simply must lie down wherever you are, hard cement floors included, and not move until it passes hours later. Then the vomit fests returned. Each crisis means that I've lost even more hearing/balance because each crisis kills the tiny hair cells.

I had started wearing an aid in my left ear a couple of years ago due to age-related deafness. It has been adjusted several times as my hearing has changed quickly during the past year. On really bad days, I simply cannot tolerate the explosions of my dog's toenails tapping across our laminate flooring or my husband crumpling a bit of paper, let alone when my large dog barks. Yikes! On those bad days, I can't hear anything useful even with the aid turned up to the max, but the recruitment is downright hurtful. I know that aids and smartphones can work together to pipe the sound directly into your ear, but we have zero cell reception where we live and our WiFi isn't strong enough to enable use of a smartphone. My only hope for phone calls is that Marty will be willing to listen and translate for me, but he gets very annoyed at being asked to do this. We virtually don't converse, as he gets very angry when I misunderstand something or flat can't decode anything. I've relied on lip reading to back up what little I've heard for years, so today's masks are an additional challenge.