Liver
Grief During Post-Transplant
Hello everybody, I am new to TransplantLyfe and I accidentally stumbled upon this website’s forum looking for advice. I am in my late 30s, and almost four months ago I had received a DCD donor liver transplant. A month later, my mother passed away at the same hospital after battling with cancer and liver failure. Needless to say, I am very sad and here I am. This year has been a roller coaster mixed with trauma, blessings, loss, grief, and second chances. I do speak with a counselor once a week, and I will be joining a group therapy soon, hopefully, with members that are of pre and post transplant patients. I suppose the reason why I’m here is for some solace. Any advice or tips would be much appreciated. Thank you for taking the time to read this.
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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.