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Tue, Aug 1 9:30am

Post-Transplant Mental Health & Well-being: Q&A with Shelia Jowsey-Gregoire, M.D.

By Mayo Clinic Transplant Staff, @mayoclinictransplantstaff

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.

Jowsey Gregiore

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:

  1. Positive attitude
  2. Having a resilient role model
  3. Establishing a support network
  4. Embracing a moral compass
  5. Facing fears
  6. Problem solving
  7. Helping others
  8. Having a sense of humor
  9. Being flexible
  10. 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.

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Liked by lcamino, Rosemary, Volunteer Mentor, Lisa Lucier, Connect Moderator

Comment


contentandwell
@contentandwell

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Posted by @contentandwell, Tue, Aug 1 10:38am

@mayoclinictransplantstaff Great article. I believe my transplant made a huge difference in everything about me. I have had a positive attitude since starting a few weeks after diagnosis (for a short time I did suffer from “justifiable depression” as my PCP put it), except for the few weeks prior to transplant when things were going downhill, but otherwise I was good, and people thought I looked good. I did not allow my diagnosis to interfere with my life except for times when symptoms raised their ugly heads. Things have been great since transplant, the organ donor cause is very near and dear to me so I am trying hard to get other people to consider signing up. If each of us gets even just a few people to sign up, in time it could make a huge difference on how many people are able to get transplants.
I too have felt that guilt but I have also read things written by families of deceased donors and it actually helps them to know that part of their loved one lives on, and that some good was able to come of their death, usually an untimely death.
My signoff signature on emails is:

“But that was yesterday, and I was a different person then.”
​​From Alice in Wonderland ​

Seems apt to me.
JK


Rosemary, Volunteer Mentor
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Posted by @rosemarya, Fri, Aug 4 9:03am

I want comment on the “unspoken guilt that patients feel after receiving their transplant”. And I want to add that I also felt this guilt while waiting for my transplant. My pastor was very helpful in explaining to me that my donor’s death was not because of me. And he helped me to understand the beauty of my donor’s ultimate gift of love. Early on, I asked my friends and family to begin praying for my donor and his/her family; that as my gift to them.

After my transplant, I wrote a letter to my donor family. Shortly after that, I received a letter from them. They told me that it as their desire for me to enjoy my new health and life. My guilt was replaced with gratitude.

I am forever grateful,
Rosemary


contentandwell
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Posted by @contentandwell, Sat, Aug 5 8:07pm

@rosemarya I am sure it is inevitable to feel some guilt. I too wrote a letter to my donor’s family but never did hear back. That’s fine, whatever they feel comfortable with is OK with me. I presume all the transplant centers handle this similarly, the note went to an organ donation center and then is sent to the family by them. I was told that it is often to wait a while so their grief will not be quite as severe and intense, so I waited about 4 months. I do pray for them.

I can only imagine how it would effect me if something happened to my son or daughter and they had signed up to be a donor (I have the feeling that my liver came from a young man). I of course would be happy that they were helping someone in need so hopefully that would assuage some of the pain.

Jane


lcamino
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Posted by @lcamino, Mon, Aug 7 7:48pm

@mayoclinictransplantstaff – I learned from your blog but I am awaiting a kidney transplant and it is the plan that I have a living donor. I’m wondering if there are any different emotional issues people from living donors experience?

Lynn (@lcamino)


Natalie R, Marketing Manager
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Posted by @NatalieR, Wed, Aug 9 10:10am

@lcamino Good question! We spoke to Dr. Jowsey-Gregoire who advised that so far there is no research evidence of significantly different psychological outcomes for recipients of living donors.


lcamino
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Posted by @lcamino, Wed, Aug 9 2:04pm

@NatalieR – thanks for inquiring on my behalf. My comment (2 below) delineates my concerns and hesitancy asking people to consider donating on my behalf.

Lynn


contentandwell
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Posted by @contentandwell, Mon, Aug 7 9:48pm

@lcamino, I would think there would be no difference overall unless the donor had problems from being a donor. Other than that it would be quite positive because you would not feel that your good fortune was the result of someone else’s grief. I presume someone you know has volunteered to be a donor?
JK


lcamino
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Posted by @lcamino, Tue, Aug 8 9:11pm

@contentandwell – I agree I would not feel badly for the family of a deceased donor but it is quite an imposition for the living donor (significant testing, major surgery, out of work for 3 weeks minimum – more if not a desk job), especially since they will have to travel to Mayo vs. going to a local hospital. I fell like I’m going to feel guilty for the financial and time commitment for the donor. I have had 3 kind people offer but I do not know if they will follow through once they realize what it entails. The person that goes to my church is open to the information I have shared via the Mayo website and I feel like I’m talking her out of it because she has school age kids and is the major breadwinner of the family. My husband and I are going to try to help with airfare and hotel accommodations but don’t think we will be able to help with lost income, time away from home, childcare issues etc. Plus the donor is supposed to bring a caregiver to Mayo so if that is the spouse than who takes care of their children?

Lynn


contentandwell
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Posted by @contentandwell, Tue, Aug 8 11:53pm

@lcamino That does make things tough. I never really thought of all of that because it was not something I would have had to consider. My daughter really pushed to be a donor for me. Initially I said no but as time went on I was more receptive to it. She nagged me to get the information so she could start the process. I did, and that was the last I heard of it so I have no idea why her offer was withdrawn. She would have been an ideal living donor because she of course would just come home with us when released from the hospital and since she mostly telecommutes she would just be able to work from here. The two summers prior to this one she spent about 6 weeks at our “camp” in Maine, enjoying the lake and telecommuting so she could certainly do it from here.
It will always bother me that she would never address why she pulled out, I can’t help but wonder if she went for some tests or something and due to something about her they did not consider her to be an acceptable donor. If that is the case I hope she does not have a medical condition that caused that.
JK

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lcamino
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Posted by @lcamino, Wed, Aug 9 1:43pm

@contentandwell – One task a transplant team does with living donors is give them a staff person that is their contact. That employee walks them through the process and at ANY time the donor can withdraw. I think they tell the staff person who then tells the person needing the transplant and no explanation is given other than the person can no longer donate. This is set up so the donor feels comfortable withdrawing their offer if they change their mind. I do know the recovery process for a living liver donor is much longer and harder. The remaining kidney adjusts quickly to do the job of two kidneys but it takes longer for the liver to “regrow” (don’t know the right term). She may not have realized what was involved until you sent her info, maybe she was nervous about the operation, the additional stress on your husband to care for both of you etc. There could be a myriad of reasons and I think you are doing the right thing to honor her privacy, as hard as that may be.

Lynn


contentandwell
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Posted by @contentandwell, Wed, Aug 9 10:45pm

@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


cehunt57
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Posted by @cehunt57, Sat, Oct 7 12:53pm

Dr. 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.


contentandwell
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Posted by @contentandwell, Sun, Oct 8 4:00pm

@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


lcamino
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Posted by @lcamino, Sun, Oct 8 7:42pm

@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


Rosemary, Volunteer Mentor
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Posted by @rosemarya, Mon, Oct 9 8:25pm

@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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