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Receiving an organ transplant is a major, life-changing event. Often we think of the physical changes patients experience after transplant. Patients slowly go from being sick to being well again; they’re adjusting to new medications; routines they previously required to stay alive may no longer be needed. But transplant patients also undergo significant emotional and psychological transitions following transplant. To better understand what transplant patients can expect, we spoke with Shelia Jowsey-Gregoire, M.D., psychiatrist in the transplant center at Mayo Clinic’s campus in Rochester, Minnesota. Here’s our Q&A.
What can transplant patients expect to experience emotionally following their transplant?
Transplant patients can experience a variety of emotions following their transplant. Often there is an immediate feeling of relief that the transplant is over. Despite the fact they are recovering from a major surgery, many patients notice a change in their physical well-being right away, which impacts their identity. They go from someone who was sick, debilitated and frail, to someone with increasing strength and vitality.
One thing we watch for is any changes to sleep or mood as a result of new immunosuppressive therapy. If there are any negative side effects, we work to address those right away.
What are some tools you recommend to patients as they adjust to life after transplant?
My favorite tool to recommend to patients was developed by Dennis S. Charney, M.D., and Steven M. Southwick, M.D., and published in the book Resilience: The Science of Mastering Life’s Greatest Challenges. The two studied what it takes for people to cope well with stress, and determined there are 10 behaviors that generally help. They are:
- Positive attitude
- Having a resilient role model
- Establishing a support network
- Embracing a moral compass
- Facing fears
- Problem solving
- Helping others
- Having a sense of humor
- Being flexible
- Attending to physical well-being
The reason I like this tool is because it’s free. There’s no copay, no side effects. These behaviors can be done anytime, anywhere.
Mayo Clinic did research a few years ago on the impact optimism had on heart transplant patients. If people reported themselves to be optimistic pre-transplant, they had better quality of life following transplant than the patients who identified themselves as pessimists did. Our findings were published in the medical journal, Progress in Transplantation. It’s important we don’t underestimate the impact our mind can have in physical healing.
Another tool I’d recommend is walking. Walking reduces stress – the brain actually grows in response to exercise! Taking a walk outside helps us put our worries aside and be in the present moment in a peaceful and calm way.
Caregivers can and should use these tools too.
What type of support can patients seek from others?
Patients often worry about being a burden to others, and it’s important they let that worry go. As human beings, we’re designed to help each other out, so that we can be strong enough to help others in the future. This is a time when it’s okay to accept help from other people.
Let others help with the practicalities of life, it’s important you don’t overextend yourself too soon. Perhaps a family member who is good with computers can maintain a CaringBridge website about your recovery so you don’t have to take calls from everyone. Try keeping a list of things you need help with so when people offer a hand, you have something for them to do. And of course, be sure to find a caregiver or caregivers to join you at appointments, keep track of medications and information.
Are there any new routines you’d recommend patients adopt post-transplant to help maintain positive mental health and well-being?
I think giving back to the transplant community can have a really positive effect on patients. Perhaps this means supporting the national effort to gain organ donors, or giving your time, creativity or financial support to an organization that helped you. Look for volunteer opportunities with your local organ procurement organization, transplant house, or at a national foundation like the American Heart Association or National Kidney Foundation.
Another new routine patients can adopt is honoring their donor each year on their “transplantiversary.” This is a special time to reflect on the gift you’ve been given. Perhaps write a letter to your donor’s family if they are open to having contact with you, or share your story with transplant patients who are waiting for their gift of life.
What other advice would you share?
There is often an unspoken guilt that patients feel after receiving their transplant. It’s important to free yourself from this guilt. Your organ donor didn’t die so you could have life, they died because that is the circle of life – we will all die. Your donor was just generous enough to give life through this process.
HELPFUL LINKS
- Get support from other transplant patients in the transplant discussion group on Connect.
- Explore Mayo’s Transplant Center.
- Request an appointment.
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@lcamino Lynn, I pretty much know my daughter. She is a real researcher in everything so I am sure knew in advance all of the pros and cons. From what I have read the liver regenerates. replacing the piece of liver taken, in a few weeks.
My daughter, as I said, was very insistent. When I first objected she turned to her fiance and said to him, "wouldn't you do that for our mother?". He has a great, dry sense of humor and immediately responded with "definitely, I have them take pieces of my liver regularly just in case she ever needs it". He loves to crack me up.
JK
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1 ReactionDr. Jowsey's article is really good. She was one of the providers I saw when I was at Mayo (Rochester, MN) for my annual pre transplant review.
I have a transplant history in my family and for myself. In 2003 my father-in-law had a kidney transplant. My daughter was his living donor. He was so grateful that he showed her extra favor giving her things (a new car etc) and spending time with her. It was awkward for the other 6 grandchildren especially for my other daughter. Both girls agreed to be tested, both matched. They worked it out between the two of them that the younger would donate to Grandpa and the older one decided to save her kidney for me because I have CKD. Grandpa lived 3 years and was grateful for everyday. Sadly he passed from Lymphoma after 3 years (it may have been associated with his immune suppression). My daughter had a period of time regretting that she had donated and wishing she had her kidney back.
In 2005 I had a pancreas transplant ( from a cadaver donor). My father-in-law was the first person I told when I got "the call". He told me he had been praying for me to get the right pancreas as soon as possible. Those prayers were answered and it has been like my own personal miracle. I don't think I ever experienced guilt about it. I wrote a letter to the donor family and never heard anymore about it. I feel bad that I couldn't personally tell them how thankful I am and what a great difference it made in my life. I did have a strange dream in the first days after transplant that little toy GI Joe soldiers were climbing up my bed and all over me trying to reclaim my transplanted pancreas to take it back to its original owner. That may have been pain or immune suppressant meds.
Forward to now. That pancreas transplant has helped keep my type 1 diabetes relatively stable, has reversed and staved off some of the complications but now the CKD is ESRD and I need a kidney transplant. I am listed with UNOS through Mayo but am also looking for a living donor. That journey is full of emotional chaos both for the future recipient and potential donors. I put postcards with Mayo Living Donor team info in all my Christmas cards and asked everyone I knew to consider or at least help me spread the word. I couldn't bring myself to actually outright ask someone to donate and haven't. Then I heard that a relative thought it was weird, inappropriate and offensive that I would ask them to donate. I was absolutely devastated. (There is a divorce underway in that family so maybe I shouldn't take it personally.) I have a cousin that told me he was apprehensive about testing for me because if he found out we matched he might feel compelled to donate and he wasn't sure how he feels about that. I love his honesty. Then there's my daughter who was saving her kidney for me back in 2003. She is grown, married, has 3 little kids and a busy life. She has always had trouble with self esteem and compared herself negatively with others especially her little sister who did donate a kidney back in 2003. She has come forward and we do match. She is scheduled for full donor work up at Mayo next month. My greatest request is for prayers for everyone involved and patience while I wait to see how this journey will unfold.
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4 Reactions@cehunt57 what a tough situation for your daughters since both had volunteered to be donors. Did the recipient of these gifts share with her older sister? That would have made the situation a bit easier. Despite the recipient's passing after three years, she did give him three years, she should be happy about that. I had a cadaver liver donor one year ago and am grateful for every day of health that I now have. Each is a day I would not have without my donor.
I too wrote to the donor family and have not heard back but I really did not expect a response. I am sure they live every day with the grief of losing a loved one and a response would be a difficult reminder of their loss. I know some donor families find some joy in meeting the donor recipient, knowing their loved one gave a renewed life to that person, but we are all different in how we deal with things.
Your daughters both sound very caring, you are blessed to have daughters who do care so much.
JK
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4 Reactions@cehunt57 - What a story your family has but what a loving family too. My father lived 3 years following his kidney transplant (my brother was his donor) but those three years were the best he had felt in years because he had been on dialysis. Plus they allowed him to enjoy 3 years with my oldest daughter and one year with my youngest daughter. Those times were so special for him, and his quality of life so much better, that I know he was extremely grateful to my brother for his kidney.
I wish you all the best as you embark on a second organ transplant. I admire the courage of those who have had multiple organ transplants. The whole process is overwhelming and frightening to me but to read stories of some of you who are living life to the fullest with one, and sometimes two, organ transplants is reassuring. Thank you for sharing your journey.
Lynn
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4 Reactions@cehunt57, I am stepping up to let you know that I will be praying for you and your potential donor. I believe in the power of prayer, and I do believe in miracles.
I wish for you to be blessed with patience and hope while waiting. Those were the things that I needed before my transplant,
Rosemary
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4 Reactions@rosemarya I believe in miracles too.
Being away with my son was really great, he is truly grateful that I am still here. He has some interesting theories that I never thought of, and he is not at all medically inclined so my condition obviously made him think and do some research.
He figures that my I will live longer than the average transplant recipient because of all I am doing to be healthy -- possible I suppose, I do a lot.
Also,when it came to the subject of not being able to drink any alcohol he said this foreign liver is already under stress and adding alcohol to it would cause it to have even more stress. To me that made sense. I had been thinking how odd it was that everyone in my family dies of heart problems and they say wine, particularly red, is good for your heart, but I cannot indulge because of my liver, even though my problems were not caused by alcohol. To me that was the best explanation I have heard.
JK
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2 ReactionsI can't speak for everybody, but I received a kidney from a living donor in early 2020. I am currently dealing with having a short temper and depression. These things did not start until about the last 6 months, leading me to believe that they are due to pandemic and work related frustrations rather than the transplant itself.
I had several complications immediately after the transplant, (dissection of the artery) but they were able to fix it, and I recovered quite well afterwards.
Please be aware that while some things improve almost immediately, at least in my case I didn't feel like myself until about 9 months after transplant. It's difficult to describe, but I think I expected to be really happy after transplant, and for a long time I was just okay.
I am happy to report that my kidney function is now pretty good, and I'm physically back on top of my game. I am a paramedic / firefighter, and can run circles around some of the younger guys.
While I have some lingering issues with my mood, I spend each day remembering to be grateful for the gift I was given.
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2 ReactionsWow for whatever reason I just reread this Dr. Jowsey-Gregoire article from August 2017 and comments going back to then. I love that article especially the 10 behaviors described that are helpful post transplant. That was 5 years ago. Then I was undergoing yearly pre transplant evaluation/review for kidney transplant. My older daughter Elizabeth was at Mayo, Rochester later that fall (November 2017) for a full living kidney donor review for me. We matched perfectly and she had been saving her kidney for me for when the time came that I needed it. She claims that when she did the psych evaluation part that Dr. Jowsey-Gregoire told her that she was “psychologically unfit and emotionally unstable to donate”. My daughter was livid at the time. I’m still looking for a living donor (not on dialysis or transplanted yet). I bounce between Stage 3 & Stage 4 CKD. I’m inactive listed on UNOS with last GFR of 34.
Fast forward to now. Elizabeth is Stage 4 HERZ2 positive breast cancer. She just began chemo on 3/4. Just found out that when she was at Mayo in 2017 something questionable turned up on a lung scan. It was deemed to be “nothing” then. Her diagnostics now show something suspicious in the lungs. I LOVE Mayo. It is the most thorough & trustworthy place I know. But the mama bear in me can’t help but wonder if my daughter’s cancer couldn’t have been discovered sooner.
@cehunt57, I'm so sorry to hear about your daughter. Perhaps you or your daughter would appreciate connecting with other members living well with stage 4 metastatic breast cancer in the Breast Cancer group https://connect.mayoclinic.org/group/breast-cancer/
I want to underline the living with part of that sentence. More and more women LIVE with stage 4 for many years.
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1 ReactionHi @seve, interesting that your entry in the Mayo Clinic Connect community brought you to this blog post. Welcome!
I also invite you to join the discussions in the Transplants group: https://connect.mayoclinic.org/group/transplants/
Perhaps you'd like to add your story here:
- 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/
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