Need transplant but don't have a caregiver.
I have been on the kidney transplant list for 2 years. My wife was going to be my primary caregiver after surgery and my mom agreed to be my secondary. Now, things have changed and neither are an option for me. I don't have any friends or coworkers that would take that role either. Are there any options for someone in my position?
Interested in more discussions like this? Go to the Caregivers Support Group.
If the hospital has a department of social services, They will be able to guide you to a solution.
Wishing you the best.
Similar situation; I understand, My husband and daughter said they would be there for me. Stem-cell transplant August 2022. Husband helped 2 weeks and walked out on me for good . Daughter call on phone, told her I needed her physical body., proceeded telling me all the things that she don't do which included everything I needed for her to do for me . Sharing it's me and Jesus Christ who I always lean on for my needs. This is my own belief.
There is ONLY one answer.
JUST GIVE IT TO GOD & WALK AWAY. HE WILL TAKE CARE OF YOU.
LAY IT OUT FOR HIM & CONSIDER IT AS ACCOMPLISHED.
YOU WILL BE SURPRISED.
@cwendel77, Welcome Connect. I am a volunteer mentor who had a liver and kidney transplant in 2009. I want to try to help you by sharing some discussions where other transplant patients have also found themselves in a similar situation as you – needing a caregiver.
The role of a transplant caregiver is explained in this article: – Caregiver Q&A with Steve Vorseth, L.M.S.W.
– "Why do transplant recipients need a caregiver?
The majority of a transplant recipient’s recovery takes place on an outpatient basis, so the caregiver is there to be their helper in that process. The caregiver accompanies the transplant recipient to all of their appointments, monitors medication changes and vitals, serves as an advocate for the patient, and oversees their recovery to ensure adequate progress is being made. We want the patient to focus all of their energy on regaining strength and healing from surgery, so the caregiver takes on any responsibility that would distract the patient from those goals."
Here is a discussion that will put you in contact with others like you, with unique caregiver solutions.
-What was your caregiver situation while getting a transplant?
Bone Marrow Transplant patients also share unique solutions and tips for their caregiver solution.
-BMT for multiple myeloma and have questions about Caregiver
When I needed my transplant, my husband was retired, and he was able to be my full-time caregiver. As you will read in the links that I shared, not everyone is so lucky. I remember when we lived at the Gift of Life Transplant House in Rochester, that there were some patients who had several part-time caregivers, who took turns as their schedules allowed. My observation was that it worked quite well for them! This is an option that could work for your friends or coworkers.
@cwendel77, that must be so tough that circumstances have changed that your wife and mom can no longer be your primary and secondary caregivers and that you don't have any other possibilities in your circle of friends and co-workers that might fit the role.
At the transplant center where you are listed, you have likely been assigned to a transplant social worker. Please share your circumstances with your social worker and they can work with you to discuss caregiver solutions.
Do you have a transplant social worker?
Thank you for the response. I do have a transplant coordinator, but I fear that if I tell them I no longer have a primary or secondary caregiver they will change my active status on the wait list to inactive. So I am trying to figure out other options to prevent that from happening. Thanks again for any help.
@cwendel77, that is a valid concern. It is quite possible that a patient will be temporarily listed as inactive if they don't have caregiver support. Without a caregiver. organ offers cannot be made. But inactive is not a permanent status.
In my humble opinion, you really need to be honest and talk to your care team – coordinator or social worker. Ask them to help you problem solve this situation so you can find someone to be your caregiver. You have to concentrate on your health. A social worker can take the load off and help think creatively to find a potential solution with you.
Social workers and nurses can possibly give you new ideas and actions to take that have worked for other patients that you may not have thought of. That's part of their job and they do it well. They want you get a transplant as much as you do.
I encourage to talk to your coordinator and ask for a consult with a social worker. I'm rooting for you.