COVID-19 and Transplant Patients

Posted by jolinda @jolinda, Mar 14, 2020

As a kidney transplant recipient I have been extra vigilant/worried about protecting myself as COVID-19 spreads. Like most transplant patients I am used to washing my hands, carrying hand-sanitizer, avoiding sick people, getting flu shots, etc. The COVID-19 outbreak has caused me to take additional steps to try to remain safe but I am worried for my health. I would like to hear what you are doing to stay safe and how you are feeling.

@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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@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/

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@sallycurrier

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

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Thank you, @sallycurrier, I appreciate it.
JK

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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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@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

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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

Jump to this post

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.

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@colleenyoung

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?

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Sorry Was in big hurry but wanted to share information in the story. I felt sharing article dated March 28th might be bit dated or already shared. I found the information on Covid patient that’s on Mico/tac very interesting. Same drugs I take. Thank you Colleen for explaining the context of link. I would encourage people to follow #NephJC.

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@joyces

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.

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@joyces. Are you aware of Caption Call? It’s a very nice phone supplied free to people with hearing disabilities by a state agency. The captioning is not always correct of course but it’s pretty good. I have one and used it extensively before I had Bluetooth hearing aids and phone. Now, because my iPhone is so good I do not use it.
JK

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@danab

@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

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@danab, Well said and thank you for sharing your response to Joyce.

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@zon

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

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Hi, @zon. I just got around to reading the information in the link you provided and want to thank you for it. I am a liver transplant recipient but I believe that much of the information is applicable for liver transplant patients also.
I have read, and unfortunately cannot remember the source, that although we are more prone to getting infected there is evidence that once an immunosuppressed person has COVID the prospects or recovery are pretty much the same as with more typical people. I generally do not give much credence to information unless the source is one I believe to be reputable so I think that must have been.
JK

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@zon

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

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@zon Thank you for posting this link. a very interesting read. Just a few days ago, my husband, who is a kidney transplant recipient, expressed that the respiratory illness he had back in January might indeed have been COVID-19 before it really had taken hold. Both he and his son had similar illnesses about the same time, and they have individually come to think that they were infected. Fortunately both are well again, but it does make one wonder if there are other situations like that, out there?
Ginger

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@joyces

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.

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@joyces As this thread is about transplant patients and COVID-19, I am not sure if people who could benefit from reading about Meniere's will see this! Perhaps it is better suited under the hearing loss group https://connect.mayoclinic.org/group/hearing-loss/
Ginger

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@gingerw

@zon Thank you for posting this link. a very interesting read. Just a few days ago, my husband, who is a kidney transplant recipient, expressed that the respiratory illness he had back in January might indeed have been COVID-19 before it really had taken hold. Both he and his son had similar illnesses about the same time, and they have individually come to think that they were infected. Fortunately both are well again, but it does make one wonder if there are other situations like that, out there?
Ginger

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Yes. My friend called me the other day about her brother. In mid December they had a big birthday party for him, a few days later her brother called and told her he's going to the ER because he was running a high fever and couldn't breathe. This is a guy who is healthy and never goes to a doctor. He was given Z pack (?) and sent home. It took him a while to get better. Now looking back at all his symptoms, she was wondering if he had the virus.

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JK, Volunteer Mentor: Yes, there are ways to get phones that have captioning, but apparently they're not compatible with our current phone system, which has long-range capabilities, meaning that I can be up to 400' from any corner of the house and use the landline phone as an intercom to check on Marty in the house, or get a call from him if he needs something. The convenience of being able to use the phone is offset by the inconvenience of having to walk back to the house every half hour to check on him. He recently got Dexcom to replace BS monitoring with finger sticks, but, because we have no cell reception it doesn't work to alert me to low BS crises when I'm outside. You can't live in paradise and expect to have all the modern conveniences!

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