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COVID-19 and Transplant Patients

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

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@joyces

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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Replies to "Early on, I had heard that depression often follows transplant, which isn't logical but apparently pretty..."

@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.

At 77, you must be in incredible shape to do all the things you do!! Your husband is a very lucky guy to have you. You have done do much to motivate him. Alot if people in the same situation would have given up a long time ago. Your patience is admirable. From what I gather, he used to be very active, his depression could stem from the feeling of losing control. I'm not giving medical advice, just speaking from experience. I was in a very horrific auto accident when someone ran a red light and plowed into my car. I had PT for months and couldn't, still can't, do simple things like going for walks without pain. I was depressed and angry. I couldn't eat or sleep. I lost alot of weight. My doctor referred me to a therapist. I decided that I need to work on myself, mentally. It took me a while but I got out of the black hole. Caregivers have the hardest job, they suffer along. Who gives care to the caregivers? Just keep doing what you enjoy for your own sanity. You can take a horse to water but you can't make it drink. Take care, we're here for you if you just need to vent.

@joyces,Hi, All I can say is I do understand I too as a Heart Transplant recipient went thru similar thoughts about this new organ in my chest. I went from working a job I loved to wondering if I could ever feel normal again. One of the first thoughts was the fact that someone had to die for me to live. I went thru a very guilty feeling that I didn't deserve this Heart if someone had to die. Well it was my Pastor that turned my mind around. He pointed out that person was going to not survive what ever caused there death but what a wonderful gift it was that at least they could help someone else maybe a few people. I was thinking about it the wrong way. That person died wither I got a heart or not.

Some how my computer went crazy here is the rest

That person died wither I got a heart or not. So it was an eye opening way to look at it.

On the fact that He has issues on weakness and a lack of drive to get better. I will admit at first i thought i would recover much faster than I did but after talking to other transplant patient's and realized that I will get stronger if I work at it. I am a little over 2 years post transplant and feeling more normal everyday. Walking 4+ miles 5 days a week and just the other day built a bench I really needed in my shed. Today i did some other maintenance that was much needed around the house. Playing Golf again etc. Yes I still cant do everything I could do 5 years ago but I can see its up to me to achieve goals in the future. I also remember that the reason I needed a Heart in the first place was causing me a version of PTSD. Yes I could do more physically but with the constant fear of my pacemaker having to Shock me back into normal Rhythm.

I really hope and Prey that something will spark an interest in Him to want his life back. I do know that I was checked out by a Psychiatrist and at least at Mayo is a member of the team. Particularly in the beginning prior to transplant. I'm also am surprised that the team wont address your concerns also. I know my Wife was there and required for me to even get a transplant so maybe if you say something to the team they will address it. It may be tough to give a little tough Love but I prey he realizes that you really care and want him to get better.

I hope you Have a Blessed Day
Dana