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

@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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@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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@saratodd Well, I sure don’t know much about transplants, but I do have some tips about children and new events. My son was 3 and we moved from 1 state to another (my husband was in the army) and I was 9 months pregnant. We had to unpack our belongings and set up the house and make sure the 3 yr old wasn’t forgotten. The one thing we did was to buy a toy that the new baby could give to his older brother. This helped him feel important and not forgotten during this crazy time. (Both boys remember this 46 years later)
Your 2 yr old may act out unless she can be a part of everything that happens. Think of fun ways she can help. Maybe a friend can concentrate just on your daughter while you rest. I’ll think of some more . What an exciting time!!

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