How much caregiver support is needed after a kidney transplant?

Hi, dhrubasen.

Normally a kidney transplant patient would need the same type of support as a patient who has undergone most types of surgeries. There may be things that the patient needs help following the surgery because of their incision and possible pain. The patient will have restrictioms on how thy are allowed to lift (weightwise).

For the first few weeks after my transplant I was grateful for help with household chores and meal preparation. I was up and about as much as possible because this is what the transplant team recommended. I was not bedridden and, so, I did not need that type of 24/7 help. It was also good to have a support person available to call if I had a problem or needed specific help. I was not allowed to drive for 6 weeks so I definitely needed help with grocery shopping and other errands. Bottom line, the support person is there for support and usually does not need to be present 24/7.

Here's a great link to a thread on Connect that I think you will find helpful in which Mayo Clinic confirms that 24/7 care is not necessary ...and you can read comments from others:
https://connect.mayoclinic.org/blog/transplant/newsfeed-post/what-to-expect-as-a-transplant-caregiver/
Here's another helpful link to a UNOS article:
https://transplantliving.org/before-the-transplant/caring-for-transplant-patients/
@rosemarya may want to chime in here with some additional insights for you. She's a "veteran" liver/kidney transplant recipient and has a wealth of experience, information, and knowledge. I've learned so much from her.

Are you a potential transplant patient, or a possible support person for the patient? In either case, if you are, you have my prayers and best wishes as you pursue this journey. 🙏🏼💕

There is a tremendous amount of homework following a transplant. Most has to be done by yourself! Hubby did as much as he could.
I was lucky to have wonderful friends and neighbors to provide food. I had a biweekly nurse and physical therapist which I didn't need. Would have much preferred a housekeeper to a nurse lol.

@dhrubasen, Great questions. I updated the title of your discussion to reflect your questions about caregiver support after kidney transplant. In addition to the helpful posts from @my44 and @maggieinfp, I’d like to bring @gingerw and other kidney transplant caregivers into the discussion.

Dhrubasen, are you preparing for a kidney transplant or will you be the caregiver?

@dhrubasen Welcome to Mayo Clinic Connect. My husband had his kidney transplant Oct 1, 2016. Granted, each patient and caregiver team is different. Here's what I recall:

-Be there for the patient. They may feel great, but all of the sudden, fatigue will overcome them. Try to ensure they don't overdue it the first couple of weeks , while making sure they do get up and move.
- The first 6 weeks or so the patient shouldn't be driving. While there are many medical appointments to be kept, that's where the caregiver comes in.
- The transplant team will advise physical restrictions as far as lifting,etc.
- Most importantly, be there for the patient in a supporting role. They have just undergone major surgery. There are the aftereffects of anesthesia, plus the emotional aspects of receiving an organ, whether deceased or live donor. Be their sounding board.Encourage them to discuss how they feel with you.
Ginger

Great advice

At my place I am asked to provide two post transplant caregivers 24x7. People living with family this is not a challenge but those living alone - this will be a challenge. No rehab or pvt nursing home is acceptable to the transplant team. Hiring 24x7 at home nurses for say 6 weeks is expensive. Any suggestion on how to deal with this situation?

Thanks!!

@dhrubasen, not having family at home makes finding full time caregiving tough and expensive. @bevprescott @katebw @cwendel77 may have experiences and tips to share about their caregiving circumstances.

It sounds like you have talked to your transplant team about what qualifies as a caregiving facility. Have you spoken with a transplant social worker to help find acceptable services?

@dhrubasen My husband and I were not together at the time of his transplant, not even living in the same town! What we did is, his daughter took a couple days a week for the caretaking, and I took the other days. This allowed her to continue working and take care of her family as needed. I was already retired from my full-time job and could manage to get my part-time hours changed around. My suggestion is to approach either family members or good friends who would perhaps team up and offer their help. It's not a medical position, and truly in my mind, it was nothing more than common sense for the caretaking. Besides, you might get tired of looking at the same person 24/7 LOL! Is this something you could look into, or perhaps a team from your faith community. Let's see what the others have to say about how they handled caretaking duties.
Ginger

Thanks so much.

Is there a wahtsapp or some online discussion group where I can join to discuss with those who have already gone thru this? I am looking for video /audio meetings.

@dhrubasen, if you are a Mayo Clinic patient, you can join this online support meeting:
- Kidney Transplant Support Group Meeting https://connect.mayoclinic.org/event/kidney-transplant-support-group-meeting-1-b3377c38/

The group meets the 2nd and 4th Wednesday of each month at 3 pm CT on Zoom and is open to all Mayo Clinic patients who are in need of a kidney transplant or have previously undergone a kidney transplant.

@dhrubasen I had a liver transplant 3 years ago. I was 54 at that time, widowed for several years with a daughter in college. I had a patch work system of caregiving both pre and post transplant with family, my partner, friends. I am not a wealthy person so did not pay out of pocket for caregiving. My team was understanding and guided me. Pre and post transplant I had VNA and PT at home which was practically helpful
and eased the minds of my patchwork caregiving team so they felt no pressure to be experts. I will say that the immediate transition was not nearly as hard as I worried. Prior to my transplant I obsessed over this but all was well and no one’s life actually prepares you for this in a neat and tidy way. Keep reaching out around what you need pre and post transplant, we are here to help settle your worries!