General
How has your Organ transplant effected your family dynamics? Good? Bad? No change?
September 11, 2023
in General
I am interested to see how people have dealt with the family dynamic changes once you received your organ transplant.
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35 y/o cis-male Kidney/Pancreas here. Immense effect. Everybody is less worried about me and treats me like an equal. No more special exceptions (for health, food, can't do this and that), which is a huge relief because at the base of it I am simply another part of the family. The dynamics have shifted as they trust me with my health ( I have always taken good care, but now the physically SEE it). My partner and I have improved our dynamic too as we've transitioned away from caregiving/patient roles. It took some uncomfortable conversations and speed bumps, but dramatically improved over a year. If I'm honest, I'm more scared of dynamics slipping back if my transplant fails or starts going awry again.
Transplant Patient
My first (failed) transplant was from my little brother, which changed the dynamic of our relationship. We've always been close, but not only going through the transplantation process together but then having that not work according to plan really shifted our relationship. We're closer than I ever imagined. Also for my parents having two kids in the ICU across from each other, I can't even pretend to imagine what that experience was like. There are so many little shifts that take place, and to begin to unpack them all would take more space than I have time for in the comments section.
My marriage also experienced a huge shift, and I believe others have talked about this, as my partner became my primary caregiver. Our roles shifted, and never really went back to the way they were pre-transplant though we have adjusted and created new dynamics since then.
I think all relationships adjust under transplantation, things are shifted, new things are revealed. The depth I experience in relationships now, and the bond I have with other people who walked that experience with me, is something that revealed true character and that I'm very grateful for.
My LTP was so quick, I think the worse for me was when I had HE my 83 y/o caregiver support “ which was my Father” having to watch the scared look in his eyes, tiredness not knowing what to do. My father was w/me every step of the way with me thru my TP, my brother who lives out of town stepped up and was my caregiver after my TP, to see the males in my life do what they did for their daughter/sister is something I will always remember. It definitely changed our relationships we have always been close but this TP journey changed our bond forever. Unfortunately my Dad did not get to my one year liverversary b/c he developed a brain glioma 3 months prior. I was so grateful to be his caregiver. My LTP changed my outlook on life, I am a loner so I really have dealt w/my TP within myself. I have my brother always💚❤️
For me, it either brought my relationships closer or tore them apart. After my first hospitalization my husband at the time just couldn't handle it. We went through a divorce shortly after I got released from the hospital.
My sisters and I have been very close since the transplant. We are best friends. We don't live close to one another but we talk every day.
It's taken me almost the full 17 years to realize that not everyone has the capacity to have someone with a transplant in their daily life. Our life is always changing. Once I understood the people that I could actually lean on, it made things a lot easier when it came to relationships and friendships. It used to upset me, but now I am much more understanding about other's feelings and what they are capable of giving in a relationship/friendship.
YES, YES, YES!! So much yes to this! I agree so much.
I have struggled with my relationship with my wife after transplant. She says, "You're not the same person. I don't know you anymore." I have always been close with my daughter but the pandemic right after my transplant prevented us from going out and doing the things we had planned. She now has a boyfriend so that has been her main focus. Both my wife and daughter say that I should stop telling people I had a kidney transplant and move on. My daughter became an ambassaor for the Gift of Life early on. I often feel misunderstood. When I woke up in recovery after my transplant I was almost hoping for everything to be brand new. This may sound odd to say. I never got to go back to dialyis center to see anyone or thank anyone. I missed the attention and closeness I had with the people there. I guess I was supposed to just move on? I have dedicated myself to helping, encouraging, and assisting others on their journeys toward kidney transplant. Many of them have become like family to me. I wrote my memoir during the pandemic and published it last year. It was an emotional but extremely rewarding in many ways. My wife told me it might be an embarrassment to share all I did about my life. Her co-workers were the biggest supporters of my book and then she said, "That's my husband the author."... My book is called "Mysterious Ways: Discovering teh MIracles of Life as I Fight for My Own." It is on Amazon.
I hope my answer wasn’t too intense
Transplant Patient
@Jay I love your answer. I've been rolling it over in my head, trying to find the best way to respond because I think you hit the nail on the head of what I've been trying to find words for. So much changes during the transplantation process, but I'm also a firm believer in we carry things with us. Like the old wherever you go there you are idea. Wanting something new entirely, witnessing the changes that just happened, and then also interacting with the world around you is such a challenging place to be.
I think there's a whole conversation here, and so many different angles and things to look at
@Jeanmarie I wanted to respond to the most prolific commenter i've seen on this platform! You are a brave warrior to me and a role model...and we are really strangers(even though i saw you on the zoom last night)...thank you for sharing your experience. I am inspired by your 17-year journey of self-discovery post transplant.
Jay, I cannot relate to your situation b/c I do not have a partner in my life. Reading your situation made me a little sad in that people tend to not really care to hear your story/healing after TP, they all have moved on and expect we she/he got the TP so they should be better. It hurts a little more when your family thinks you should move on.
You stay strong continue sharing your journey 💚😊
I have really appreciated each and everyone of you for sharing this.🌻🌈
I haven’t noticed a very big change in my immediate family. Our son waited until I had my transplant and was home a while before moving out I think he feels more at ease now. Some of my biggest supporters have moved on and but I have gained new ones as well. As for my husband I became his caregiver and now he faces a kidney transplant himself in the future. Our lives are a crazy merry- go- round it seems but I wouldn’t have it any other way. Everyone on here has a story to share and I feel so close to all of you!!
Deb❤️❤️💚 ty. I to have been touched by every one’s journey.
Thank you @Jay ! It is a long complicated journey. I am happy to share my experiences, as long as it can help others navigate through it too.
It’s taken me some time to feel ready to comment on this. As someone who is just now 4 months post kidney transplant, Im still navigating some really hard ‘stuff’ with relationship dynamics.
I started dialysis in a very traumatic and emergent way which catapulted my boyfriend into a new role. We were together only one year before I went into kidney failure. I have been on dialysis and now through transplant longer than NOT in our relationship. As Ali said, there is so much to unpack and share in regards to this topic that the comment section just cannot hold space for. Presently, I am integrating back into the world while learning how to remain in integrity with myself, as this new version of Self. This means new boundaries, new ways of living, new everything.
As for family, majority of my family became distant during my time on dialysis. Very little contact with them because I wasn’t reached out to and always told “not to be a stranger”. It was as if they expected me to seek support rather than trying to be there for me and show up for me themselves. Now, after transplant, it’s expected that I should just be grateful, everything is all good now, and very little space held or any acknowledgement of the struggles and trauma. They don’t really ask me about me. They don’t really check in with me. And I feel very misunderstood, not seen, not heard.
@fern22 thank you so much for sharing … I am almost in tears just feeling relieved and grateful that other people here are being vulnerable and brave enough to share some of the tough realities of their journeys. I hope this is coming out right. I truly almost deleted what I initially posted about my family relationships and didn’t even tell the full story thinking it would be too foreign to people on the platform and maybe too depressing. Fern…I appreciate how you took the time to detail sone of your story which made me feel less “alone” if that makes sense… I am 53-years-old and I find your maturity to be amazing. Thank you so much again as I had a really tough day today.
It sounds like we all have family and friends that feel the same, it’s as if they think oh you’ve had your transplant now you’re all better just move on. It’s definitely not that easy. So many struggles or at least for me it is. Juggling meds, doctors appointments, constant labs, some days I just can’t go and do like I used to. I’m glad I’m not alone here. This has been such a great topic. Bless each and everyone of you and may each feel better with every passing day with our gifts of life!
Deb you hit it on the nail, I miss my other life b/f LTP. So much has changed for sure, I was so healthy, took no prescription meds, lived life . Then this sneaky liver disease came into my life and changed everything. I am so blessed tho that I was given the second chance at life it’s just a different life now.
All my TP friends we r strong have each other on this platform WE will win this journey we’re on. Stay healthy everyone.😊💚
Jay, we r here for you my friend.
Thank you, Jay. You are most definitely not alone. It was lovely to meet you on Zoom the other day. This is Taiylor by the way! Nickname is Fern. I don't think I can change my username on here, ha!
Hi Taylor you are awesome 😊 thanks for sharing, I think a lot of us can relate to Jay and you.
Transplant families need education along the way too. They may be the most in the dark and least equipped to deal with things. There are more than a few gaps that could be addressed by transplant teams/social workers, etc. in the "transplant journey process" ... but it is hard to predict the unexpected emotional and psychological changes that may occur with different patients, and the dynamic between their caregivers, extended family, significant others or friends.
Wow..we are all here communicating for a reason. Do you think we can help to bring about meaningful changes through our experiences for future transplanted patients? I think we have enough lived experience, brain power, sensitivity, and compassion to make a difference here. Do you agree with me?
PS: @fern22 there is something about you that is undeniable. I think we are all picking up on it. You have some special traits that just shine through. We are seemingly all drawn to your energy. Can't explain it. I think @Melsamm also picked up on this. I hope I get to know you all better.
Jay I really do, we as TP patients are trying to understand what is happening to us, I cannot imagine what our caregivers were going thru. My caregiver has passed away so I never really got to share w/him what he was feeling thru all this. I was diagnosed w/end stage liver disease in 1/2020 was TP by 10/20.
As i read all of these responses from my initial question. It pleases me that we have such a beautiful vulnerable community. Thank you for that. i hope to continue to bring more thought provoking ideas and questions. You all rock.
So when i got my first kidney transplant in 2007 my wife stood by me was a great caregiver and advocate. BUT she wouldn’t allow any help from my family. i wish i knew why. i has much appreciation and resentment at the same time. Our marriage lasted 9 years. We too got robbed a lover relationship. she became my caretaker so quickly. then when i got my transplant in 2008 it was hard to switch back. glad to know i wasn’t alone in that.
This is one of the most common things I hear as a patient advocate. Caregivers need support too. I just met with a local transplant patient today and he mentioned this as well. How he has a wife and 5 children and each one of them were affected in different ways and they didn't have the 'toolbox' to know how to navigate it all. Organ failure and transplant is traumatic for everyone involved. In the work I do, I also extend the services to the caregivers and support system. I was glad to see Jay mention this as well because its definitely needed. I am currently experiencing a lot of bumps in the road as my partner and I navigate what our relationship looks like post transplant. Its incredibly difficult but it can be done with compassion. Theres a huge integration period in post transplant life.
Thank you for posting the question... and now for sharing some intimate details about your own transplant relationship experience and dynamics.
Our nuclear family was always close-knit. Yet, my final year of deterioration before my miraculous transplants (heart/liver) brought us even closer, to a new level of bonding. Post transplants the added bonding has held up, as it seems that, without saying it, everyone now appreciates how fleeting life is and the importance of not missing opportunities with loved ones. Even the grandchildren that lived through it seem to see life differently. We’re a strong Christian family and no doubt our beliefs played a major role in all of this.
My children have really enjoyed presenting new grandchildren to me over the past 5 years since my survival (3 so far!). We all understand that each day is another day’s gift of life, miracles are real, and my final day in this world may be today.
Honestly, the only way I can possibly do all the doctors expect of me is to remind myself of the privilege I have in still being in this world to do it. And, whenever I’m pessimistic, my family reminds me as well.
Our entire family is closer because of our journey with transplant. Our first experience was with my youngest. He had 6 days a week dialysis for 2 years beginning when he was 5 months old. He received a liver and kidney transplant at 2 1/2 and we almost lost him during recovery. A few years later, my oldest started dialysis and my youngest went back on dialysis. It was hard having two kids in dialysis and not being able to care for my middle child, but we always had someone in the family with him to focus on his needs. I have 4 step children that were all older than my children. They now have children of their own and it has changed their perspective completely on all that we went through before and the feelings they have now as parents. My husband and I are closer now than we ever were. We are both full time care givers to our children and help with our parents. Everyone in our family think of us as the people to go to when there is any medical situation with anyone in the family. I think they just trust our judgement and our ability to get through the tough times.