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

+++++MODERATOR'S NOTE+++++
The tips shared in this discussion helped to create this article written for the Mayo Clinic transplant blog. Knowledge for caregivers by caregivers and beyond Mayo Clinic Connect.

– What to Expect as a Transplant Caregiver https://connect.mayoclinic.org/blog/transplant/newsfeed-post/what-to-expect-as-a-transplant-caregiver/

Interested in more discussions like this? Go to the Transplants Support Group.

@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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@tasher3433

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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@tasher3433 Welcome to Mayo Clinic Connect. We are a diverse group of people, patients, caregivers, and family members alike. You're right, you will have a lot on your plate, having two to watch over after the surgery! How exciting, and how tremendously grateful everyone must be! I hope that you will take time to look through the discussions on the transplant group, and let us know if there is anything that confuses you or leads to more questions. https://connect.mayoclinic.org/group/transplants/
My husband was a kidney recipient.
Ginger

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Thank you so much! We are looking at mid April in Scottsdale!

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@tasher3433

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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Hi @tasher3433 Welcome to Connect. That's wonderful that your daughter has stepped in to donate a kidney. I had a liver transplant and my daughter wanted very much to be a donor for me but then was not able to. It must be helpful also to know in advance when the surgery will happen. That makes things a bit less stressful.
It's good to hear that you have other family members you can rely on also. For the most part, my husband had to do it all since our son and daughter both live in other states.
We will be looking forward to April and hearing how things are going.
JK

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@gingerw

@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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It has meant so much to both my daughter and her Dad – she is so thankful and appreciative of his sacrifice. He definitely feels very good about being able to do such a dramatic thing for her. As my friend said, "You gave her life once, and her father will give her life again."
The transplant clinic invited donors to come together to discuss their experiences and the folks to whom they donated. He found it very powerful. In time, they will most likely share their story in a more public way.

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COVID-19
I want to be sure that you are aware of a new Discussion Group – @stella25, @hansonca03, @lisamb, @jbilton, @jodee, @fatherscaregiver, @genocurt, @chevynova67, @gaybinator, @28snash, @myson, @kaegee, @debbief, @nkdonahue,@richardsville,@tasher3433.

Here is the New Discussion Group – COVID-19
https://connect.mayoclinic.org/group/covid-19/
and
here is where the transplant patients are participating. COVID-19 in Transplant Patients
https://connect.mayoclinic.org/discussion/covid-19-in-transplant-patients/
Of course, you are invited anywhere. Share with your friends.

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Thanks for all the tips so far! My husband is tentatively scheduled to have a living liver donor transplant on Aug 3. Our daughter just turned 2 and I am due with our second child on Sept 7. We have a great support system of family, friends, and church, but I will be his primary caregiver. Any advice or tips for our situation?

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@saratodd

Thanks for all the tips so far! My husband is tentatively scheduled to have a living liver donor transplant on Aug 3. Our daughter just turned 2 and I am due with our second child on Sept 7. We have a great support system of family, friends, and church, but I will be his primary caregiver. Any advice or tips for our situation?

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Hi! I will be thinking of you all, and congratulations to your family! Sounds like multiple gifts will be arriving close together. I am so happy to hear you have an extended caregiver system in place. I was/am my husbands caregiver, our daughter was his living kidney donor. Sleep as often as you can, let someone do laundry, change bedding, clean bathrooms, and shop. If you feel able, YOU be in charge of his meds. That way, you will be sure he receives the correct doses at the correct times. I found this to be my biggest accomplishment, that and knowing he was hydrated and as comfortable as possible in the beginning. ( June 2 was our Bean Day!) and know that while there may be ripples in the road, every day will be a tiny bit better than the day before. I found I could not “see” improvement every day, but I sure can week to week! And most importantly, know how much you are appreciated. Best wishes.

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