COVID-19 and Transplant Patients

@joyces I hope you read the response from @fatherscaregiver There are some very valid points laid out there.
As a back story, my husband had a deceased donor kidney transplant just over 3 years ago. His kidney issue was the result of high blood pressure, and he did nightly peritoneal dialysis for 5.5 years. He worked full time plus all during his dialysis years, and still made time and concessions to go motorcycle camping, creating a deep cycle battery system to charge up his warmer for night use. Since his transplant he has continued to work full time plus. I have asked him about tremors, and depression. He tolerates the medications well, and the transplant team continues to monitor for side effects. The depression he felt was sorrow for the family who lost a member in order that he might live, and he vowed to honor that life lost, by doing everything he can to give back. Is is possible to talk to your husband and see if he would look at his gift of life with a new kidney, in that light?

Have you or your husband considered counseling to address his inactivity and depression? Your transplant team may have an associated psychologist who can assist you. And as @fatherscaregiver mentioned, caregiving is hard when the patient is non-compliant. You can only do what you can, and not force someone into action they do not want to take. What activities can you and your husband enjoy together, or work towards enjoying together again?
Ginger

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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.

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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.

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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?

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@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 you sound incredibly healthy and active. Does your transplant team include a psychologist? My dad's team does, she specializes in transplant. We work closely with his entire transplant team and often speak with his coordinator and psychologist. They have both grown to know my father and I very well. I do have POA so I will often call and let them know if something is something is going on that needs to be addressed. His primary care doctor we only see once a year and has little input, he prefers to always consult back with the transplant team.

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