Liver
Grief During Post-Transplant
Updated April 15, 2024
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Transplant Patient
I found my grief journey post transplant was the hardest. It was the least talked about, the thing that was the most real for me and the most critical thing for me to navigate. Having such an intense death so close to your transplant is another layer of grief, and i firstly want to say I see you. The loss of my son during pregnancy was what preceded my need for a liver transplant (I also currently have a deceased donor transplant) and the intense grief I felt was what spurred me on to making connections from others I hoped would get it. Holding a deceased donor organ in your body like this is its own form of grief, I think. And while we’re grateful, of course, and it would be wonderful if it was all sunshine and roses from here on out, I do believe acknowledging that grief is an important part of healing. Our bodies are incredible story keepers. That includes stories of grief and loss.
I’m so glad you’re already seeking help and support, and I hope this community support can be another layer of that for you. For me in navigating my own grief, I leaned into a lot of somatic and embodied grief practices. Movement, mirror work and writing were all practices I personally found really helpful.
part of my work now, especially within the transplant community, is working with body grief, and navigating this complex, layered and often disenfranchised grief. If there’s any way I can be of support to you, please reach out. And please lean into this community, knowing we’re here to support you in any way we can.
Hi Augusto885, I am so glad u have stumbled upon this site I to found this site after my LTP. I to received a DCD I found a lot of sadness when the Dr walked in and told me we have a match I immediately thought of the family who lost a loved one. My father was my support thru my LTP journey I lost him to a brain glioma 1month b/f my 1yr. Liverversary it was the most difficult time for me to, I was so grateful that I was able to take care of him b/f he passed.
I am so glad that you r getting help and just know this site is here to support you and be here for you. The best part is we can share our TP journey which is so helpful. I have communicated w/some wonderful folks thru Transplantlyfe 💚 I hope we can help u thru your journey to.
@Augusto885 Welcome! I am happy you found us. My mom passed away 4 years ago unexpectedly. She was my primary caregiver when I received my kidney transplant almost 18 years ago. And honestly, I am still sad she is not here. I am at peace that she is not here. But some days I am absolutely devasted and miss her so much. I had a bone marrow biopsy not too long ago and I kept having tears wishing my mom was with me. Although I have amazing support, moms bring something special. Reach out any time if you want to talk about it. We are all here for you!
Jeanmarie I know what you mean, when I had my acute liver rejection all I could think of was my Dad to, I was just thinking of him 2night his bday is in a couple of days❤️ so hard.
Wow, thank you for your wholesome responses and warm welcomes! Thank you for sharing your stories. I’m so sorry for all of your loss and grief. This community seems to be filled with courageous individuals. I commend you. I can learn from this community. I hope that you all will continue to live your lives in your peace.
@AliEm14 To experience what you had experienced simultaneously is something I don’t think there is a manual for. I’m glad that you ‘see me’ and can understand me. I have felt alone on this journey. And knowing that I can relate to others is helpful. I haven’t practiced somatic and embodied grief practice or body grief, though I have done meditative breathing exercises. They saved my life, especially right after the operation when I was intubated with a ventilator in the ICU. The machine and I weren’t in sync when I came to, and I panicked. I had begged them through hand signals and writing on paper to take out the tube. Even after the came tube out, I couldn’t find my breath to talk. It was very frantic and terrifying to say the least.
@Melsamm Liverversary, having such loss surrounding a major life-saving life course event is very difficult to navigate through. It’s all so much for one person to endure, yet here you are strong. I cried too when I got the call, because I thought of the donor and their family. I haven’t made contact with the donors family yet, but I plan on writing a letter to them soon.
@Jeanmarie Moms do bring something special! My mother and I had similar health issues which both began to decline rapidly this past May. We were on that journey together. I miss her more than I know. I keep thinking of things she’d tell me and taught me. Knowing what I missed out on and what I will miss out on without my mother, is hard for me to grasp. I have strong emotions of guilt and of survivals guilt. I didn’t realize how powerful this feeling is. This reality I’ve entered into is so very brand new to me. These are the most difficult and challenging moments of my life without a doubt.
I admire all of your bravery and courage. I hope I will continue to be brave and courageous like you all!
Welcome my friend we r all here to get you thru this. 😊💚 we all have so much to share and it really helps.
I will be thinking about you. That is really hard. Are you going to do anything special for his Earth bday?
Thank u Jeanmarie, my brother is in from Fla so I am so happy. Not sure but he will be celebrated for sure💕
@Augusto885 I want to welcome you to this group. I am 7 months post transplant and have spent hours reading and crying with these transplant warriors. I found that leaning on the this "family" has allowed me to begin a mental healing. I pray for you in your time of grief. I, like all on here, am always available to listen. I learn almost daily about the trials of transplantees.
The original post relates to liver transplantation but I had a similar experience, I think.
Im a kidney transplant recipient and the time immediately after transplant was a reconditioning period. Transplant is a major shift from one mode of operations to another. The change can be traumatic.
After being on dialysis for three years having a kidney presented a new set of challenges and daily activity. I went from doing peritoneal dialysis three times a day to having so much extra time in my day. My mind raced to find structure in my day but it wasn’t easy. Post transplant I had anxiety attacks and I am still looking for more structure in my daily life.
There are so many expectations one has after transplant and my advice is to recover at your own pace.
I totally agree darth_james it is so strange to actually start feeling well again , having a some what normal life again. It has taken me 3yrs. to feel like myself a little again.
I had my liver transplant 7 months ago, I was in the final days of getting on the transplant list when my nephew passed away. He was an organ donor and I was grateful that I was able to receive his liver thru Direct Donation. So the saddness I face with his passing, will alway be here but I have to deal with that in my own way. My main goal is to thank him, by living a good life. He is a hero for his selflessness for giving me a second chance at new life for my wife,children and grandkids. My advice to you is to cherish the gift that was given and do what you can to have a good life. I think this is what all donors would want for us.
Shakeyjake,
I was three months out of transplant and a dear friend of mine was killed while riding on her bicycle in a congested part of my city. The driver ‘didn’t see her’. When she had her ID/ license made she signed up to be a donor. Months before my transplant she said she became a signed her ID to be a living donor due to the problems I had been through during dialysis. I was told a six year old girl got her heart. I know her choice saved lives.
I dearly miss my friend— Jen— but she was a tremendous source of inspiration for those around her when she was alive. In death she saved a few lives. I think I felt survivor’s guilt after my transplant.
Update: 01/21/2024
To all those who have lost loved ones, I am truly sorry that you all had to go through that while experiencing the discomfort of the transplant recovery.
Thank you all for the connected and relatable experiences that you have shared.
I have zero social support from my immediate family. My only support is my therapist, who I only see once a week.
In fact, my older brother has formed a habit of making sure that he lets me know how he wants me dead and that nobody loves me in my family. None of my other relatives think it’s a big deal, they claim “that’s just how he gets,” then they brush off my concerns. His words have taken a huge toll on me psychologically, and I was I was stronger to not let his words and actions bother me. My Father throughout his life has neglected me and I am the scapegoat of the family, where they think it’s okay to verbally abuse me when they’re not feeling good, then they pick fights with me when I respond to them while defending myself.
Last night, both of them got in my face and tried bullying me, but I stood my ground.
These past 6 months since my operation has felt like a horrible ‘twilight zone’ episode that I can’t seem to get out of. I am beginning to really lose sight on what is possible for me currently, and my future existence. Things will not get any easier it seems, and now I am stuck feeling like I am running out of options.
What does a person do in my scenario? Any thoughts are welcome.
Kick them to the curb, My thoughts have aways been if you don't want me here, Fine I will leave.You have to be look out for yourself first and not care what others think family or not. Move on and don't have anything else to do with them. They have apparently chosen to not about care about you. Life is to short to have anything or anyone negitive in it. Go out and enjoy what ever it is that makes you happy and surround your self with friends that support you.
My support network is in place but I worry about the health and stability of my network. My parents are aging and I have friends but they are not as close as I wish they were. I am an ‘only’— no siblings and my cousins would be my next of kin in the future.
In 2017 my kidney began to fail and I had a divorce/ separation from the woman who donated my kidney to me. It was a mutual loss of interest and she took more money from my deposit on our home and I was too exhausted to fight the situation. She could be abusive. At times she hit me when she had too much to drink, which brought up so many bad memories of childhood.
At the point I moved in with my mom in a large home but she was dating a guy who was likely undiagnosed and unmedicated for OCD, narcissistic personality disorder. (We will call him Gary) At one point Gary’s son moved in with my mom for some reason but Gary insisted that I should give up the comfort of my room at my mom’s house— to his son. Gary threatened to kill my cat, which was a beautiful Tonkinese cat that gave me great comfort. He was worried that my cat might scratch one of his two dogs. To make matters more complex Gary was a compulsive hoarder and my mom’s house became his hoarding space. He had no concept of basic organization or respect for the space of others.
Thankfully my family members had an intervention after I photographed the mess that Gary made with his hoarding tendencies. Gary is long out of my mom’s life. My family and my mom sent Gary packing, we had to throw away his hoarded junk…
My mom met one of her high school classmates (we will call him Robert) and they hooked up and got married. I love her husband and he is a respectful man with a lovely family. I could not have asked for a better man to be my mom’s husband. Robert has made me a better person and he helped me through some tough times.
Have you considered getting a basic bicycle to get away from the madness at home? My bicycle used to be my getaway from the house if things seemed too heavy. I still ride my bicycle to help clear my thoughts.
Have you ever asked your father for a conversation to tell him how you are feeling. He might be open to discussion but you need to set rules for the conversation. For example: No yelling, no ad hominem attacks. Come to the table without your brother and try starting a casual conversation about how you are feeling. Ask him how he is feeling. If your father refuses to discuss the situation, you might try explaining your situation to one or more of your family members.
I am confounded by the relative of yours who said ‘that’s just how he (your father) is… Maybe that family member would be open to a discussion about your need for a support network.
I am not a therapist so I cannot be a mediator in your situation. Would your brother or father be willing to attend a therapy session with you? Maybe they would listen to your therapist and realize your needs.
I think you need a plan in place with another family member or friend and if you need to get away from your house- explain you are having rough times and you need to get away from the stressful environment that you live in.
I with I could do more.
Shakeyjake&darth_james, I so cannot imagine what you both are going thru. I hope and pray that things will be better for you both. Family can be difficult for sure, especially when you are going thru your TP journey and need support.
Oh, I'm ok. I have a great support system with my wife, children and grandkids. I try to enjoy life as best I can, I ride motorcycles, hopefully get out in my new boat more often this year and catch more fish and just take life as it comes. like I stated earlier. after a Transplant life, you realize is to short to worry about the small things, Live like everyday is a weekend. (Just no drinking)
I used to ride a Honda motorcycle, so I know the urge to get back on a motorcycle.
Shakeyjake Amen I absolutely agree with you! You live life so different after TP I am learning to quit sweating over the small stuff deal a/the big things.💚❤️💚 LIFE.
darth_james be careful riding that motorcycle it’s not you it’s the other folks on the road. I used ride off road motorcycles in my younger days.
Hey, hope all is well with the group. I was diagnosed with cirrhosis in May of 2021. At first it was a huge surprise because I never was much of a drinker but after diagnosis it became apparent that many people who have cirrhosis are not drinkers. Well from May 2021until September 2023, I only had one major problem and that occurred when I had a hemorrhage in August 2021. They were esophageal varices. And then in early September 2023, I became very weak. I went to the hospital and they could see that jaundice set in. They eventually released me after 5 days. I then had another blood test where my hepatologist determined that I had to go back in the hospital. This hospital was now the university of Penn hospital. And while there I started to improve ( around 10 days in ). Well, on the day before I was to be released I had another esophageal hemorrhage. And this time, it was right in front of my sister. It was the saddest moment of my life because my Sister is a beautiful human being and to see her hurting was disturbing. Well, after going to the ICU and having an EGD and having more varices banded, it became a waiting gm. My meld was 40 and because of the hemorrhage I was taken off the transplant list because they thought I might not make it through the surgery. A day later they put me back on the list and a day after that on a Sat morning, Sep 30th, they said they had a match. I definitely was one lucky human. On the late night of the 30th and until about 7:30am on the 1st of October they performed the surgery. I had too many complications to list but I am grateful to my donor and my support team. Without either I wouldn’t be here. I still have aches and pains and I suffer from depression because of the aches, pains and weakness. My question would be, are there LT patients in this forum who think things may get better during the 1st year? Just glad to be a part of such a support group. I believe just reading what all you went through will aid me in understanding the journey.
Welcome KevR your body has been thru a lot, it definitely takes time. It is a journey w/a lot of up downs. I hope sharing and talking w/all of us will help you feel better. It’s a great bunch of folks and they have a lot of webinars to help to. 😊💚
Mine was a similar one to yours, I had NASH (nonalcoholic steatohepatitis), that sounds better than FATTY LIVER. not that I'm fat shaming or anything. I've had it for a long time, 33 years I think. I had no issues at all, untill dec. 2022 and started bleeding. I had 3 surgreys in a month for esophageal varices bleeds and also as with you, the night before I was to go home, I started to bleed out and they had to do aTIPS procedure on me. They told my wife, if I didn't have it done, I would not survive. So being the wonderful wife that she is, she said "do it". I Think she was making sure I was around to help spend our retirement money together like we planned or it was to finish the garden???.. I then started completing all the things needed to be put on the trasplant list, as they were doing the finale review on me, my nephew passed away and he was a donor, The family wanted me to have his liver and by Direct Donation is was done. That was last June 2023. I have not only God and family to thank but especially my nephew. His selfish act of being a donor, is the reason I'm here today. As for all your pains and other things that are going to happening for a bit, we all had them and we are all still here. You can fine some solice form some of these post and also some advice, I sure have. Take care of yourself and don't rush the healing that needs to be done, both mentally and physically. You'll be ok. you've made it this far so that must mean something and welcome to the family.
Hey KevR
i had a similar story to your quick transplant, on list 4 hrs. I am now just over 11 months post LT. I also wondered if I would ever feel right again. I got tired of hearing “your body has been so through a lot! It takes time!”
However, they were right. One day a switch changed and I have progressed daily since. Everyone on here understands your situation. We truly sympathize, empathize and hurt with you. I really can’t believe that I am saying this, “trust the process.”
i will be keeping you in my prayers as well.
Thank you all so much for listening to my story.
Thank you ole_ball_coach, Shakeyjake, and Melsamm. I will keep you and all in this group in my thoughts and prayers.