Transplant Caregiver Advice: Got Tips to Share?

Posted by Ginger, Volunteer Mentor @gingerw, Jan 3, 2020

In October 2016, my now-husband had a kidney transplant. In fact, we met at a kidney disease support group! We were barely starting a relationship, and there was a lot yet to learn about each other. After his transplant I had to learn how to deal with numerous follow-up appointments and accompanying labwork, plus his changes in attitude and lifestyle after many years on dialysis. To go from a very active person to staying quiet and not on-the-go all the time during recovery, was difficult for him. To suddenly have what seemed to be a pharmacy-in-a-box was brand new and challenging to manage. I accompanied him to all appointments and kept detailed notes. I asked a lot of questions, and asked for answers to be repeated in “laymen’s terms” so we could be certain we understood clearly.

I wish I had better known that each transplant is different, due to different circumstances, and each person being individual in their approach, reactions, etc. Doctors can speak in generalities, but I needed to learn about my husband’s particular case. The tips I would offer another caregiver are:
– Learn to ask questions.
– Keep a journal. It was a valuable tool for us.

What would you like to tell to the caregiver whose loved one is on the transplant list? What advice do you have for fellow transplant caregivers? What do you wish you had known?
Ginger

I would like to know why a person who has depression can’t give a sibling a lung , I read that someplace

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@richardsville

I would like to know why a person who has depression can’t give a sibling a lung , I read that someplace

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@richardsville, I commend you for inquiring about living organ donation. I can tell that you are very concerned about your sibling, and I want to assure you that your interest along with searching for information has to be a bright spot for him/her. I have no background or knowledge from my experience to share about living lung transplant. This is cedrtainly something that your sibling's doctor and transplant center can discuss with you.

Organ transplant is a complex procedure and comes with benefits and well as risks. The aim of transplant surgery is to provide the best possible outcome for the patient (and donor when there is a living donor). Both physical and mental health are considered when someone is considering being a living donor. I have located the following information from UNOS Transplant Living. This information applies to ALL living organ donors.
"Living donor candidates should be:

In good physical and mental health
At least 18 years old
Be willing to donate: No one should feel that they MUST donate
Be well informed: A good donor candidate has a solid grasp of the risks, benefits, and potential outcomes, both good and bad, for both the donor and recipient
Have a good support system
Transplant program assess the medical and psychosocial health of potential living donors. "
https://transplantliving.org/living-donation/being-a-living-donor/qualifications/
@richardsville, Is your sibling already on the transplant list, or about to be listed? What questions do you have? How can we help you while you walk beside your sibling?

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@rosemarya

@richardsville, I commend you for inquiring about living organ donation. I can tell that you are very concerned about your sibling, and I want to assure you that your interest along with searching for information has to be a bright spot for him/her. I have no background or knowledge from my experience to share about living lung transplant. This is cedrtainly something that your sibling's doctor and transplant center can discuss with you.

Organ transplant is a complex procedure and comes with benefits and well as risks. The aim of transplant surgery is to provide the best possible outcome for the patient (and donor when there is a living donor). Both physical and mental health are considered when someone is considering being a living donor. I have located the following information from UNOS Transplant Living. This information applies to ALL living organ donors.
"Living donor candidates should be:

In good physical and mental health
At least 18 years old
Be willing to donate: No one should feel that they MUST donate
Be well informed: A good donor candidate has a solid grasp of the risks, benefits, and potential outcomes, both good and bad, for both the donor and recipient
Have a good support system
Transplant program assess the medical and psychosocial health of potential living donors. "
https://transplantliving.org/living-donation/being-a-living-donor/qualifications/
@richardsville, Is your sibling already on the transplant list, or about to be listed? What questions do you have? How can we help you while you walk beside your sibling?

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His lung Dr is making the call to see about a date for brother the be evaluated

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@richardsville

His lung Dr is making the call to see about a date for brother the be evaluated

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Please let me know what u find out thank u

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@richardsville

Please let me know what u find out thank u

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Hi, @richardsville. I am not sure what you want to find out and I would be happy to help you in any way that I can. What do you want to ask me?
I have a question for you. Has the doctor given your brother an appointment yet?

Here is a Discussion that I want to share with you. You just click on the link that I have provided below, and you will be taken directly to the conversation. I invite you to read, ask questions, or just say, Hi and meet some members who are talking about their experiences.
What can I Expect for my Lung Transplant Review?
https://connect.mayoclinic.org/discussion/lung-transplant/

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@gingerw and others, thank you so much for having this great discussion. I am hopeful that everyone is learning from each other about how to navigate the caregiver role. As a transplant care team, we try to provide the information as best we can, but as you all know, going through it gives you a much higher level of expertise than we could ever have. That said, we wanted to collate some of your discussion information into a blog post with the hopes that even more people would benefit from your knowledge. We were able to post that info yesterday, and we hope that you will all read and comment about other things that you've experienced in your caregiver role. Thanks!
https://mayocl.in/38qVNwM

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@debbief

I’m also interested in receiving advice regarding caring for a heart transplant recipient. I’m struggling right now. On the one hand I’m so thankful for the surgery. On the other hand I’m ready to start living again. It’s only been 4 months. What do you do when one partner is recuperating and the other is healthy and active?

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@debbief, I have been thinking about you and wondering how you and your husband are getting along with his recovery. I hope that he is feeling better each day. I would like to share this article with you and with him. It is from patients who have shared their "how to" ideas for getting on with post transplant life.
Top Transplant Hacks: Patients Share Their Best Tips and Tricks
https://connect.mayoclinic.org/page/transplant/newsfeed-post/top-transplant-hacks-patients-share-their-best-tips-and-tricks/
How is this recovery period working out for you? What have you decided to do as you start to return to some of your normal activities?

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@richardsville

I would like to know why a person who has depression can’t give a sibling a lung , I read that someplace

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Living with depression is not a reason to be disqualified as a living donor. The donor evaluation team will discuss your history with you. If you have required inpatient care for your depression, it will likely be something that the team will need to explore further. My husband and I were both evaluated as living kidney donors and we brought this up early with the donor evaluation team ourselves. I wish you luck in your effort to donate to your sibling.

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@nkdonahue

Living with depression is not a reason to be disqualified as a living donor. The donor evaluation team will discuss your history with you. If you have required inpatient care for your depression, it will likely be something that the team will need to explore further. My husband and I were both evaluated as living kidney donors and we brought this up early with the donor evaluation team ourselves. I wish you luck in your effort to donate to your sibling.

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@nkdonahue You're absolutely correct. And each transplant center seems to have its own criteria. You mentioned you and your husband being evaluated as living donors. I am presuming this was for your daughter. Was she able to have a peremptive transplant as planned? I am curious!
Ginger

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@gingerw

@nkdonahue You're absolutely correct. And each transplant center seems to have its own criteria. You mentioned you and your husband being evaluated as living donors. I am presuming this was for your daughter. Was she able to have a peremptive transplant as planned? I am curious!
Ginger

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Hello Ginger,

Yes, we were fortunate that my husband was a good match and qualified to donate. Their surgery took place on November 5th, before she required dialysis. Both my husband and our daughter have recovered very well. It's been about 12 weeks now. Neither one is back to full strength yet, but we understand that it can take quite a while. For a twenty four year old girl that only learned in February that she had any issues with her kidneys, it has been a very challenging. Her creatinine level climbed and her GFR dropped so quickly, we knew that if she didn't get a transplant before the end of the year, she would require dialysis.

We know that we were very lucky that she didn't have to wait longer. In October, as the HLA testing was happening, we learned that she had something called an "artefact" which could make it very slow to find a match through Paired Donation. It's just amazing that in such a short period of time, my husband was able to be fully evaluated and then to donate directly.

It's kind of you to check in.
Best regards!
nkdonahue

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@nkdonahue

Hello Ginger,

Yes, we were fortunate that my husband was a good match and qualified to donate. Their surgery took place on November 5th, before she required dialysis. Both my husband and our daughter have recovered very well. It's been about 12 weeks now. Neither one is back to full strength yet, but we understand that it can take quite a while. For a twenty four year old girl that only learned in February that she had any issues with her kidneys, it has been a very challenging. Her creatinine level climbed and her GFR dropped so quickly, we knew that if she didn't get a transplant before the end of the year, she would require dialysis.

We know that we were very lucky that she didn't have to wait longer. In October, as the HLA testing was happening, we learned that she had something called an "artefact" which could make it very slow to find a match through Paired Donation. It's just amazing that in such a short period of time, my husband was able to be fully evaluated and then to donate directly.

It's kind of you to check in.
Best regards!
nkdonahue

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@nkdonahue Wonderful news! There is a different kind of "tie" now with your husband and daughter, and I am sure everyone is celebrating the chance to make a difference, including the transplant team. Will your daughter and husband think about sharing their story with others about the gift of life?
Ginger

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@genocurt

Wow, these are great questions! I feel at the Mayo Clinic they do a very good job in preparing the caregivers for what is coming; however, there are always surprises. We stayed at the Gabriel House and saw and learned from a diverse group of patients and caregivers. My recommendations would be:
1) Be prepared for the unexpected. My husband had a lung transplant and was released after a week with no issues or side effects. A month later he had to have a hiatal hernia surgery and that seemed to set him back. In addition, I was required to blenderize his diet for two weeks, which was a challenge for him because his stomach could not take the liquid food and for me because I struggled with the lack of space and tools to make this happen. In addition to this, he fell and sprained his ankle which put him behind in his pulmonary rehab, which made us doubt that we would be released at the end of 90 days.
2) Get support from friends and familiy. When my husband had his transplant I was all by myself for 6 hours in the waiting room. Those were the longest hours of my life, but I felt that I was embraced by a virtual community as I was in permanent contact with my husband's sister and brother, our daughter, and our Pastor. After that, I found a wonderful group of friends at the Gabriel House. In particular, I had a lady friend that would walk with me and we became each other's confidants of our frustrations (which will happen).
3) Be prepared to deal with your loved one's frustrations. The Mayo Clinic reinforces the importance of the caregiver to be very involved in the patient's care. We are supposed to learn all the medications, reading lab results so that we can ask intelligent questions, cook nutritious meals and observe the patient for changes. We also have to help with other activities of daily living (i.e. showering). Although this can be overwhelming for the caregiver, it can also be overwhelming for the patient if the caregiver is smothering. The patient, who is usually independent, has to be allowed to do what they can for themselves. At the Gabriel House, they conducted a focus group with male patients who had had a transplant, and while they all appreciated the care received from their partners, they all complained that they felt smothered.
I hope this helps caregivers to be.
Denice

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Thank you so much for the advice! My husband will be the kidney recipient,our daughter, the kidney donor. I am a natural smothered! However, family members all know this and will be stepping in.

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