COVID-19 and Transplant Patients

This was interesting, but a bit dated.

This page from the NephJC, nephrology journal club, discusses the common questions transplant professionals as well as transplant patients may have with respect to Novel Coronavirus (COVID-19).
http://www.nephjc.com/news/covidtx

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.

@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

@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

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

Early on, I had heard that depression often follows transplant, which isn't logical but apparently pretty common. The transplant team blew off my concerns. Ditto for our kidney doc, who is a wonderful, caring person, very important in both our lives. Our primary doc retired not long after the transplant, and Marty's new doc only knows what he sees, what Marty says, what the damned labs tell him. He accepts this greatly reduced mobility as Marty's normal, only sees him once a year. Six months after the transplant, I got a referral from the transplant office to see the pain mgmt. people. They evaluated him (again, after only six months of sitting day in and day out) and said that before they could tackle the pain issues he'd need to do PT to regain some muscle tone. They said nothing about depression. He refused to go back for the follow-up appt. Two years later, much worse, I forced him to go to a local PT, a cheerful person who asked very little of him, accomplished little during a couple of months of bi-weekly visits. The pain got worse, his willingness to leave the house or go outside to enjoy our lovely wooded property much worse. About 2.5 years ago, his balance had gotten so much worse that I insisted he go back to pain mgmt. I got a referral, and they suggested a great PT person in the Portland area two hours away. I drove him there (in spite of the constant whining and complaining about pain, traffic in the city, my terrible driving, etc., etc.) every other week for 10 mos. He did improve, even though the only time he actually did much was during the one-hour PT sessions, plus the "activity" of sitting upright in the car for four hours each trip total. He refused to get out of the car while I loaded bread at Dave's city warehouse for our local Backpack program (a weekly thing I still do) or whenever I stopped at a park to give our dog a break from the bread van. The PT finally just gave up, because he simply refused to do more than the easiest exercises occasionally.

At the eight-month mark, he actually accompanied me on a four-day trip three hours away for the riverkeeper program I'm part of. He was even able, with his walker, to view some of the sites the group visited and was forced to go from our cabin to the main lodge for meals. It was all wonderful, less depression and fewer ugly scenes. He did spend lots of time sitting in the car with the seat tipped back while the group hiked to more difficult places to access, but it was nice to visit some of the areas where we had fished together in the past.

Toward the end of the PT, twice he had shots directly into his lower back, but he totally refused to do the increased exercises and movement he was supposed to do while the shots eased the pain. He was supposed to go back to pain mgmt. but refused, perhaps because even he was ashamed of how little he had done to maximize the value of the shots. They had emphasized that the shots were only to enable him to move more and improve his situation while the pain was decreased, and that the shots couldn't continue.

He's supposed to see the transplant team once a year, near the anniversary of his transplant, but they didn't call him last year and he didn't want to contact them. His depression and continuing slide downhill certainly aren't his kidney doc's responsibility, nor does she have contacts for referrals for either pain mgmt. or depression. His primary doc is a nice fellow, but has no clue of the problems present.

Marty's totally unable to do any of the active outdoor activities we did until six years ago. I miss fishing, which was not only recreation but our entire lives as we both worked for a publisher of fishing books and magazines and after that started our own company that does design and marketing for sport fishing companies. Because far more men than women fish, it's awkward for me to fish with guys, so it's become a rather lonely sport. We started the riverkeeper project together in 1993, but he quit doing surveys there the year he had back surgeries. I still drive two hours each way, alone, and hike miles in really difficult terrain to survey and place, check, and remove temp monitors every summer. Although it's lonely to always be by myself, I do enjoy it, even though I'm now 77. Last week, I actually met someone while hiking the lower river for the day, which made it a red-letter day even though we stood apart to compare notes. I did prod Marty to join the local fly fishing club, which ordinarily meets monthly and has monthly outings and fly tying sessions. Marty attended one very easy outing a year ago, but he could only stand to sit in our boat for one quick trip around the lake before he had to be rowed back to the car to lie down while I went out to test cast a new rod manufactured by one of my clients. We also joined a weekly lecture series, but he often finds excuses to not attend. He has little interest in proofing work I do for clients, which he used to be eager to do. I hired someone to build a deck in front of our house, but it takes real effort to get him to sit out there in a chair that requires him to sit upright. I bought a lounge chair for the deck, but he doesn't like it. A couple of times the past few years I've suggested going out to dinner, but he replies that we could order something delivered "if you don't want to cook." AARGH! I bought him a walker with extra-big wheels--he's supposed to walk every day--but it takes threats of no dinner to make him walk even as far as on the road in front of our place. He's no longer able to ride the big mower, something he used to do well and was proud of how nice the acre of, ahem, grass looked after he had mowed the open areas and I had used the push mower to "trim" all the smaller spaces and edges. We used to cut wood together, but, of course, that's now my job. I enjoy it, but it's far harder when you must put down the chain saw to move the wood along as it's cut.

Our marriage is in the dumper; we're living separately in the same house. I'm pretty much out of ideas of how to improve things.

@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

This is excellent @zon. I added the source of the URL in your post so that members know what they're clicking on. 😉

For those who aren't familiar with NephJC, it a nephrology journal club that uses Twitter to discuss the research, guidelines, and editorials that drive nephrology. This means physicians, researchers, patients and more use the hashtag #NephJC on Twitter to share all things nephrology. They have a website http://www.nephjc.com/ and @NephJC host a twice monthly Twitter chat on Tuesdays.

Thanks to @zon, I just found out they also have a podcast. Wow.

Zon, all things COVID change so fast and frequently. What aspects of the COVID-19 Q&A are dated already?

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.