COVID-19 and Transplant Patients

Posted by jolinda @jolinda, Sat, Mar 14 5:17pm

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.

@danab

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

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Hello Dana @danab, I appreciate your share of your story and your thoughtful offer to be of help. I will probably take you up on that offer for any questions that may come up. I really enjoyed being a source of help to new LVAD patients and their families.. Amazingly, somehow in the midst of all the fear of things in the beginning, and with experience, we one day, find ourselves the expert. Another chapter starts! Thank you so much to you and everyone for being so helpful.

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@brenwhite

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.

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@brenwhite, I want to add my welcome to you and I congratulate your son, you, and the transplant team for this transplant during these most difficult of times. I want to commend you for your positive attitude and trust in the care that your son is receiving at Mayo. Mayo is where I had my transplant 11 years ago (liver and kidney) and I assure you that your son is is the best possible care. I know that you will be overjoyed when he is able to safely come home. I am happy that you are adjusting to living like a transplant recipient, because that makes you one of us! Sending prayers as recovery continues.

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@brenwhite

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.

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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

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@contentandwell

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

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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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@brenwhite

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.

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@brenwhite Brenda, While you may have set up this account for your son, I'm glad that is proving to be beneficial for you. @lupedelarosa12 describes some of the issues, like delirium, that her son experienced after his heart transplant back in 2017. You may wish to see some of those discussions like:
– Heart transplant: recovering but steroids are affecting behavior https://connect.mayoclinic.org/discussion/heart-transplant-231a15/

There is also an Intensive Care (ICU) group https://connect.mayoclinic.org/group/intensive-care-icu/
You may find relevant discussions there too.

Has his delirium passed? When do they expect him to be able to leave ICU?

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@joyces

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 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

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@gingerw

@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

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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.

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@joyces

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.

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Hello @joyces I have experienced similar depression with my father. He is 74 and received his heart transplant almost 3 years ago. His heart is doing great, however he isn't. His hand tremors had decreased with time. He had been in outpatient physical therapy for years trying to regain strength, muscle and balance. He has not been able to walk without a cane or now a walker since his transplant. He did not need assistance prior. He has recently been diagnosed with Parkinson's which only makes everything worse. Transplant often causes depression. My father sits in the chair in front of the living room window and watches world go by (on commercial breaks of course!) He does nothing for himself anymore. I thought it was all on him, being lazy, but the depression has an extreme hold on him, he just can't do anything. I have been working with his transplant psychologist to get him more help. I am also working to move him into an assisted living as it is not safe for him to stay home by himself any longer. He is too much of a fall risk. I fear we will find him severely injured one day. As a caregiver it is extremely frustrating to watch somebody who received a life saving gift seem to take it for granted, not be compliant and not willing to help themselves. We have had several disagreements on this. I have learned all I can do is try to get the mental health help he needs and then let go of what I can't make him do. (not sure if that is giving up, but I can't do anymore).

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@joyces

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.

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@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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I must wholeheartedly agree with these words. My first weeks after my transplant were, in retrospect, quite difficult as my potassium levels were very high and I didn't seem to react well to many of my drugs. My tremors were so bad that a friend bought me a funny mug to hold my drinks as I could not hold any of the hospital variety. I treasure it this day. I also had a rare type of aphasia which affected my speech. My brain knew what I wanted to say but my voice could not translate the command. This was immensely difficult for someone known to talk quite a lot! My doctors were concerned that I had brain damage but, in the end, it was a rare but known reaction to tacrolimus. So…we have all faced these challenges and most of them will pass. Certainly, as far as I know, the hand tremors are temporary. Mine had gone before I left hospital.

The months following a transplant are experimental as far as your drugs are concerned as doctors search to find the right combination for you. One doctor told me it was almost an art rather than a science. These times will pass. I can say with my hand on my heart and there is nothing I did before my transplant
( and that includes fine craft work) that I cannot do today. And I never forget that this is all due to the sacrifice of one family whom I will never be able to thank.

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wildcat – congrats on your recovery and more power to you!

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@gingerw

@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.

REPLY
@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.

Jump to this post

@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.

REPLY
@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.

Jump to this post

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.

REPLY
@joyces

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?

Jump to this post

@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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