Connect
Transplant Caregiver Advice: Got Tips to Share?
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/
Like
Helpful
HugInterested in more discussions like this? Go to the Transplants Support Group.
Connect
Such a great topic to start, @gingerw. Caregivers are so critical to the success of the transplant and the recipient's well being, as we all know. I'd like to bring fellow transplant caregivers into this conversation too: @stella25, @hansonca03, @lisamb, @jbilton, @jodee, @fatherscaregiver, @genocurt, @chevynova67, @gaybinator, @28snash, @myson, @kaegee
What do you wish you had known? What tips would you share with other transplant caregivers who will be accompanying a loved one on their gift of life journey?
-
Like -
Helpful -
Hug
2 ReactionsI never had a caregiver 😔 I had to for it on my own. Husband was and is of no help whatsoever 😡
-
Like -
Helpful -
Hug
2 Reactions@gaylea1 I am sorry to hear this. If you would ever have an opportunity to explain how this affected you, what would you say?
Ginger
-
Like -
Helpful -
Hug
2 ReactionsI’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?
-
Like -
Helpful -
Hug
5 Reactions@debbief if the person can be alone then you should be able to do many things, but bear in mind that the post-transplant patient would probably like to be doing more too so try to not abandon him or her constantly. When I was post-transplant (liver) I encouraged my husband to do stuff. I was very able to be left alone after a few weeks. Of course that does vary with each patient.
If the patient continues to need a lot of care you need to be patient, they will be able to do more fairly soon. In the meantime is there anyone who could be with him/her? When I was pre-transplant my husband went away for a weekend so my daughter stayed with me. For a shorter time my sister came.
@gaylea1 that must have been very difficult for you. When I have been recovering from something - transplant, TKR - my husband has done all the shopping, something he abhors and never does otherwise, and he was very solicitous of me, sometimes too much!
JK
-
Like -
Helpful -
Hug
5 Reactions@gingerw ..honestly Ginger I am somewhat better dealing with things better on my own. What did affect me was when I had to retrieve things like a glass of water, something to eat, or bathing. I overcame these obstacles by taking measures pro actively. Such as, keeping a pitcher of ice water beside me, making sure I had ready snacks (nuts, granola bars, crackers) within reach, and I outfitted the tub/shower with hand grips and a shower chair ( all rented). I had my family get me zip up sweat shirts and track pants. I organized all this on my own. I had the drug store deliver my medications to my house. There were still obstacles but I persevered. My husband left for work at 6am and returned about 4:30pm so I was alone most of the time. I wasn't allowed to drive and we lived in a somewhat rural spot. I was housebound and thats when I fell in love with Netflix and britbox lol...
-
Like -
Helpful -
Hug
5 ReactionsI am a liver/kidney transplant recipient. When I asked my husband who is my caregiver about advice for caregivers, here's what he shared:
-Get used to a new normal, based on the patient's need.
-Whatever is on the caregiver's agenda is secondary to the patients needs.
-Caregivers have to be ready to make sacrifices in order to fulfill the caregiver role.
-You can't change the way it is.
-Being a caregiver becomes less demanding as the transplant recipient improves.
-
Like -
Helpful -
Hug
8 Reactions@debbief, Congratulations to both you and your husband for a successful transplant.
I would like to invite you to meet other heart transplant patients who will be able to assist you with caring for your husband. You just have to click, then post a question or say, 'Hi'. Heart transplant recovery: What to expect?
https://connect.mayoclinic.org/discussion/heart-transplant-recovery/
Is your husband able to be left alone for periods of time? You sound worn out to me. Is there anyway that you can get away to relax and to take care of you?
-
Like -
Helpful -
Hug
1 Reaction@debbief It is a whole new way of life, for the transplant recipient and all family members. Following the instructions from the transplant team is critical for everyone. And the recipient needs to understand also that their caregiver team has needs to be met, too. Don't forget about yourself! You can't be the best caregiver you want to be, unless you are also taking care of yourself. Is there someone who can spell you for a while and give you a break to get out and just enjoy yourself for a few hours? Being 4 months out from transplant, see about reinserting yourself into the things that brought you Joy before the surgery. It is a challenge to involve the patient in new things that they had also put on the back burner when they were ill. My own personal experience shows that if it is needed, don't hesitate to reach out for counseling help.
Ginger
-
Like -
Helpful -
Hug
5 Reactions@gaylea1 You brought up little things like water, snacks, easy clothes. Thank you! This is a great start to the tips we caregivers need to hear, and pass on.
You sound like a strong woman, and I am glad you posted today, and are doing well.
Ginger
-
Like -
Helpful -
Hug
3 Reactions