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.

Rosemary, Volunteer Mentor | @rosemarya | Apr 4 7:51am

@npoynter23 @brishawn24
I, too, had been told about the possibility of hepatic encephalopathy (HE) at the beginning of my liver failure. My husband was instructed to be aware of the signs. I was fortunate to have avoided that particular condition. However, I did get seriously 'ill' and spent time in ICU and even being flown to Mayo due to my critical condition. My memory of that time is full of gaps and it really bothered me to not know all that had happened to me during that time. As I recovered, I wanted to know and so I would ask my husband who was at my side during the entire event. It pained him to have to recall those difficult times that he had experienced. He, my caregiver, still does not like to talk about it. As for me, the patient, I really needed to know. I did finally look at my medical records and fill in some of the gaps and that helped me.
I tell you this just so that you know that it is something that your spouse/patient might experience.

Here is a support group for you to share with your loved one! There are better days ahead.
- Snapshots of hope: Life on the other side of transplant.
https://connect.mayoclinic.org/discussion/snapshots-of-hope-life-on-the-other-side-of-transplant/