COVID-19 and Transplant Patients

Hi Brendan White @brenwhite I saw your post and wanted to introduce myself. I would like to congratulate you on your son's recent Transplant and offer to answer any questions you have. I too was a Heart transplant recipient on Jan 5 2018. Now 2 years later I'm doing well. So please let me know how I may help during the upcoming days and months. May you have a blessed day.
Dana

As a mother and caregiver for my son with a newly transplanted heart (4/1/20), I appreciate the share of information and the support here.. He is still in ICU and, I, unfortunately, have not been able to be there but busily following his transplant team's advice and instruction here at home and thankful for video chat! I am sure that Mayo hospital had to make a tough decision regarding the timing of when this gift became available and the ever increasing concern that this declining LVAD patient was presenting. I am so aware of the heartbreak that wait listers and their families are now experiencing and NO, these are not elective surgeries. Now I am adjusting to living like a transplant recipient, as well, even though I am not one. My heart and best wishes go out to all of you. Stay well and safe.

As a mother and caregiver for my son with a newly transplanted heart (4/1/20), I appreciate the share of information and the support here.. He is still in ICU and, I, unfortunately, have not been able to be there but busily following his transplant team's advice and instruction here at home and thankful for video chat! I am sure that Mayo hospital had to make a tough decision regarding the timing of when this gift became available and the ever increasing concern that this declining LVAD patient was presenting. I am so aware of the heartbreak that wait listers and their families are now experiencing and NO, these are not elective surgeries. Now I am adjusting to living like a transplant recipient, as well, even though I am not one. My heart and best wishes go out to all of you. Stay well and safe.

Hi @brenwhite These are such difficult times to have a loved one in the hospital and be cut off from visiting. Congratulations to him and to you on his transplant. I am a liver transplant recipient.
Hopefully, his time in the hospital will not be much longer and he can be home with you soon. In the meantime, we are so fortunate to live in an age when we can communicate electronically.
Your attitude is admirable, considering yourself to be a transplant recipient so you can adjust to his needs and requirements. Overall, it's not really that bad, primarily some restrictions due to immunosuppressants.
JK

Hello @colleenyoung, I have been able to chat with him in ICU. I had given a brief clearance to visit him when he was experiencing some delirium coming off his vent (to calm him) and I set up his notebook to be able to chat with me when he came out of his haze. He was just released from ICU to the cardiac floor and doing pretty well. Thank you for the introductions and for the tips link posted. His name is Brendan and my name is Brenda. I set up this for him in 2017 just prior to his LVAD surgery.. he hasn't used it much.

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?

@joyces For every procedure, every medication, there is a spectrum of side effects and responses that may be experienced by a patient. It seems the degree of responses and side effects may be affected by other health conditions or medications, and general overall health. Medicine is not an exact science, and I really don't think a medical professional is purposely not disclosing information to patients. As patients, we do have the responsibility to look into procedures, and understand the ramifications as they pertain to us as an individual.

As an example, I had a kidney biopsy last October, my second one [first was in Jan 2015]. There is always a possibility of complications. What I did not expect, nor was it brought up, was the internal bleeding that happened right after meant there was added pressure by staff. I ended up with a cracked rib. Only by accessing the procedure reports was I able to determine what happened.

I am sorry your husband has experienced tremors as a side-effect of transplant medications. Has he spoken to his transplant team to see about if there is an alternative, based on how long ago the surgery was? Can he rig a device that will hold one part of the ties while he works on the tying? And most importantly, how is his health? It is not unheard of to experience depression after a life-altering operation like a transplant.
Ginger

Valid points, but sometimes you're told something that makes you believe you'll be in and out, when not only will that not be the case but you'll need to stay quiet for an additional day. In that instance (spinal MRI) that's what always is done. As for the hand tremors, that's a common side effect of one of Marty's meds, and his transplant docs want him to take that particular med, along with the usual prednisone and a second immunosuppressant. Because the important thing is not to lose the kidney, there's no alternative answer. He got the transplant at Legacy Good Samaritan in Portland, OR, which is one of the most successful transplant centers. Can't argue that their protocol works!

Four years before the transplant, he had three failed back surgeries, with a surgeon so godawful that we were part of the largest medical malpractice suit ever to hit court in Portland. This doc was an out-and-out criminal who zeroed in on people with underlying health issues so that he could do multiple surgeries on them, claiming it was due to their other issues. Not only did he earn $$ for the surgery, but he was one of the five owners of the day surgery center (more $$ for him), plus he was romancing the gal who sold all the expensive titanium parts and received a kickback on those (even more $$). In spite of the three surgeries, until the transplant Marty worked full-time in an active job selling drift boats and teaching new owners basics of trailering, launching, and rowing. He continued to work full time even while undergoing dialysis 3x/week, and we fished most weekends, taking turns rowing while I did the harder things, like cranking the boat up onto the trailer. He determined that when he got the transplant he'd quit the sales job because he felt he had earned total retirement. We had both worked for a fishing publisher for years prior to his job for our boat client, and there he only had to work 3-4 days a week as an editor because the publisher's motto was, "men need to fish and women like to work." I worked there for nearly 30 years, generally 60-80 hours per week, selling advertising in magazines and books and being the overall manager of all the publications--editing, design, circulation, distribution, promotion. I'm also five years older, so his belief he had earned total retirement while I continued to do design and marketing for our various clients didn't go down very well. <g>

Since his transplant, he spends most of his time in a recliner reading, watching TV, eating, napping. The more he sits, the more pain he has. In spite of that, his labs are always great, so the docs are all happy. I drove him to a really good PT person two hours away every other week, but she fired him for non-compliance after 10 months. Even though he flat refused to do the exercises or walk between visits, he was considerably better, had far less pain. In the two years since, he has really gone downhill with extremely poor balance (which causes pain in and of itself) and almost no muscle tone. He now spends about half the daytime hours lying on the couch, moaning. He almost never leaves the house as it's "too much trouble." His labs are still great, better than mine with the same kidney doc, dammit! Our boat is now MY boat, and I fish by myself. He does virtually nothing around the house: when he finishes a gallon of milk, he just leaves the empty jug on the counter. I have to goad him into taking a shower once a week as it's "too much trouble." He sits in the damned recliner and tells me what he wants me to get for him. I'm now 77, and I still work for three client regularly, volunteer for Backpack for Kids, am Curriculum Dir. for a lecture series, and maintain the house and yard, including all repairs. The "yard" is acreage, so my contractor's wheelbarrow gets lots of action. I'm sure that part of his trouble is depression, part sheer laziness as he's always done the least amount of work possible, but, because his labs are so great, all his docs say he's doing fine.

Valid points, but sometimes you're told something that makes you believe you'll be in and out, when not only will that not be the case but you'll need to stay quiet for an additional day. In that instance (spinal MRI) that's what always is done. As for the hand tremors, that's a common side effect of one of Marty's meds, and his transplant docs want him to take that particular med, along with the usual prednisone and a second immunosuppressant. Because the important thing is not to lose the kidney, there's no alternative answer. He got the transplant at Legacy Good Samaritan in Portland, OR, which is one of the most successful transplant centers. Can't argue that their protocol works!

Four years before the transplant, he had three failed back surgeries, with a surgeon so godawful that we were part of the largest medical malpractice suit ever to hit court in Portland. This doc was an out-and-out criminal who zeroed in on people with underlying health issues so that he could do multiple surgeries on them, claiming it was due to their other issues. Not only did he earn $$ for the surgery, but he was one of the five owners of the day surgery center (more $$ for him), plus he was romancing the gal who sold all the expensive titanium parts and received a kickback on those (even more $$). In spite of the three surgeries, until the transplant Marty worked full-time in an active job selling drift boats and teaching new owners basics of trailering, launching, and rowing. He continued to work full time even while undergoing dialysis 3x/week, and we fished most weekends, taking turns rowing while I did the harder things, like cranking the boat up onto the trailer. He determined that when he got the transplant he'd quit the sales job because he felt he had earned total retirement. We had both worked for a fishing publisher for years prior to his job for our boat client, and there he only had to work 3-4 days a week as an editor because the publisher's motto was, "men need to fish and women like to work." I worked there for nearly 30 years, generally 60-80 hours per week, selling advertising in magazines and books and being the overall manager of all the publications--editing, design, circulation, distribution, promotion. I'm also five years older, so his belief he had earned total retirement while I continued to do design and marketing for our various clients didn't go down very well. <g>

Since his transplant, he spends most of his time in a recliner reading, watching TV, eating, napping. The more he sits, the more pain he has. In spite of that, his labs are always great, so the docs are all happy. I drove him to a really good PT person two hours away every other week, but she fired him for non-compliance after 10 months. Even though he flat refused to do the exercises or walk between visits, he was considerably better, had far less pain. In the two years since, he has really gone downhill with extremely poor balance (which causes pain in and of itself) and almost no muscle tone. He now spends about half the daytime hours lying on the couch, moaning. He almost never leaves the house as it's "too much trouble." His labs are still great, better than mine with the same kidney doc, dammit! Our boat is now MY boat, and I fish by myself. He does virtually nothing around the house: when he finishes a gallon of milk, he just leaves the empty jug on the counter. I have to goad him into taking a shower once a week as it's "too much trouble." He sits in the damned recliner and tells me what he wants me to get for him. I'm now 77, and I still work for three client regularly, volunteer for Backpack for Kids, am Curriculum Dir. for a lecture series, and maintain the house and yard, including all repairs. The "yard" is acreage, so my contractor's wheelbarrow gets lots of action. I'm sure that part of his trouble is depression, part sheer laziness as he's always done the least amount of work possible, but, because his labs are so great, all his docs say he's doing fine.