Grief of transplant

I do not want to write at the moment as just yesterday was the anniversary of my daughter's death, 17 years after her heart transplant. I will catch up a bit later.
In the meantime a hug goes out to you.
Silvia

Sending you love and hugs I can’t imagine what you’re going through as anniversary dates are hard for me to. Grief is a beast of a different nature. I would like for you when you are feeling up to writing to please respond I would love to hear about your and your daughters journey.

I have had a double lung transplant and it has changed me, I cannot pinpoint how as it is hard to explain. I don't know anything about the donor or how they died but I have had severe depression since having the transplant. I don't know if it is the medication I have to take, something changed within me. I have thought of doing things that go against the whole reason I had the transplant. It may be because of the trauma I went through in hospital. I just thought I would tell you some possible reasons I have thought of.

His last transplant he said he wasn’t supposed to be here and was an angry person. He had what was called recall so when they did the transplant he was paralyzed but not sedated enough and could tell us what music they listened to what they were saying the sound of the saw. The trauma is very real and I don’t think addressed enough or supported enough with the patient or the family. To expect these changes. You are human and those thoughts even with a transplant of depression are okay. I would find someone to talk to maybe to process the trauma. My son has dementia and sometimes I thank god for that because his he forgets most of it now. I am interested in hearing more about your journey.

Thanks for sharing about depression and feeling different after transplant. I am sorry you are coping with all this. My spouse had his kidney transplant over 6 yrs ago has yet to have a good day. First 14 mos were hell with assorted serious problems including a rejection (resolved). Then Jan 21,2020 his blood labs came back 'normal' first time ever and mid March 2020 COVID-19 arrived to the globe. WE still live isolated like lockdown 99% of the time and only do necessary things. People I tell this to do not 'get it' for they can live normal. WE've been married over 45 yrs,no kids , no family near so I gladly oversee his care when he needs that, but the antirejection meds and 2 different insulin shots 4X a day he takes has caused his depression and mood swings and more. I used to be a happy go lucky personality ,not any more due to living isolated and seeing how he feels everyday. I just got him out of the hospital yesterday due to 3 UTI's in 30 days. ORal antibiotics did not kill the stubborn bacteria and his local nephrologist said IV antibiotic inpatient was warranted. He had not had a UTI for over 5.5 yrs. It was a nightmare for us, this hospitalization due to no COVID-19 protocols in action for medical staff despite us repeating our needs to everyone over and over; his diet was not for a diabetic person, and dose and timing of insulin was so wrong it was unreal. WE spoke often to everyone while we rarely removed our masks while in hospital. I called night nurse 5am and explained who my husband is and his journey with this transplant and no immunity from COVID-19 and more though heavily vaccinated. THe next morning a sign on his room door: wear a mask to enter. Unreal experience and I will write the head management of the organization about it all when I am clearheaded. I have facts written down. He's on another antibiotic oral at home and I wait and see in January if this UTI comes back. So many negative things since transplant happened and we feel 'no light at the end of the tunnel' with this journey he and I are both on. We realize everyone's journey is very different. I am sorry to hear about your problems. I feel for you. Take care of yourself and advocate for yourself is all you can do. My spouse did that often while getting treatment I could not do at home. I wish you a healthier New Year.

Let me be clear this is my son who had the transplant. We opted out of vaccines due to my extreme interest in what was happening to my son and at one point having his vaccines after his transplants to catch up. He is so unhappy and the lack of care and follow up with other things it was like switching one set of issues for others. I’m trying to be thankful but there are times I feel guilty for the gifts we received.

I will write to you later today after reading through all of thes posts; I have not forgotten you.

I am sad to hear that I am not alone in the way I feel. I have also had a UTI which required intravenous drip antibiotics, something I never had prior. But it is the medication that is the issue, I no longer need to have insulin as my diabetes is controlled by taking Metformin 1000mg and Ozempic 0.25mg.
I have done some research with the limited information that is out there, Prednisolone is a big part of mood swings that are out of your control. Tacrolimus is also known to cause psychosis. I have my good days, but most are not so good. I have started to stop taking what I deem as unnecessary for the sake of my liver and kidneys, medications such as Rosuvastatin for cholesterol and Esomeprazole for GORD.
The transplant doctors are not very forthcoming with regards to what causes all this, statistically 50% of lung transplant patients die in the first 5 years, I thought it was due to complications with the transplant. I am leaning towards the fact they could possibly be taking their lives, it leaves me wondering why I am not thankful to be given a second chance. I feel ungrateful for feeling the way I do. I sincerely hope things work themself out for you and your husband, it is possible I have seen it. May we have a better New Year be vigilant and work together to get through this. My wife doesn't get it, and I am no longer understood or shown any empathy.

Hello again, I have been reading these posts today and quite frankly I am stunned to read about the care some have received from their transplant teams/hospital staff! We have had excellent care even if it was for several different reasons. My daughter was sixteen when we saw our first transplant group; she turned down the new heart as soon as they told her she would have to get rid of all of her pets. At that point, it was a no go for her, her choice. The whole journey has been hard adding to the fact I worked as an EKG Supervisor as well as a Medical assistant...in other words, I "knew" what was going on and sometimes knowledge is not a good thing. It can certainly cause problems with doctors who are new where you understand your child's heart problem more than they do! Ouch! Having that knowledge made me question the possibility of my daughter having some kind of a heart problem when she was 4 years old; the problem was that a few weeks after her 3rd birthday, she developed Juvenile Rhuematoid Arthritis. From that point on I began to feel like we lived in her pediatrician's office...she was always getting sick and the drugs she was taking caused her to start bleeding internally when she was six. She was admitted to the hospital at RAF Lakenheath (we were stationed in England for 7 years). During that hospitalization, the nurses noticed her heart rates were around 40 beats a minute. They did an EKG and thought the machine was broken the complex being one that no one had ever seen before. They repeated the EKG, same result so they did an echo. There were 2-3 electrical issues with her heart and all of her ventricular walls were already thicker than a grown man's walls. They said she had Hypertrophic Cardiomyopathy and sent her straight away to Great Ormond Street for their opinion on her. They said she was fine, probably because I questioned the things they were telling us! At seven we were living in San Antonio to be near the Air Force medical center, Wilford Hall. They sent her to Texas Children's Hospital and she had an electrical open heart surgery there to get get rid of one of the tracts' she had developed a couple of new tracts. At eight she was back in Houston to have a duel chamber pacemaker put in because her heart was beating in the 30s range which can cause the heart to stop beating. At the same time all of this was going on she had a stroke at 10 (occipital) caused by a blood clotting problem that no one knew she had! She had a problem with her kidneys and a problem with her muscle strength and co-ordination. Her EMGs were abnormal, but her muscle biopsy came back normal for Mitochondrial Disease. Those poor doctors had a lot to try and put up with! By the time she was 22 she was dying and could hardly get from one room in our house into the next, she could hardly do anything with haviong chest pain 100% of the time, she developed life threatning arrhythmias and her thinking ability was impaired. That was the hardest thing to see because she had such a mind; she could play chess at 3 and beat her father at times. She was advanced in the British school system and she was doing algebra at 6. Watching her incredible mind going downhill was horrible! After her transplant, one of the first things she said to me was "Mom!! I can do math in my head again!!" She was SO excited because that was something that was robbed from her. She recieved her heart in the wee hours of July 5th, we got the call on the 4th of July. It was a new beginning for all of us. There were things that she hated prior to her transplant that she loved afterward like tomatoes and spicy foods. She told me that her donor came to her one night in her dream and explain a few things that he wanted her to know. She was very surprised by that visit. There is so much more to this story, that's why I am writing a book about her life. I have to go for now. Keep in touch and let me know how you are doing; if you need an ear, I am here. Take care.

@cmccall813, your post reminds me of a few older discussions, while not the same, there are overlapping elements.

@lupedelarosa12, spoke of her son's behavior changes related to the treatments involved in heart transplant:
- Heart transplant: recovering but steroids are affecting behavior https://connect.mayoclinic.org/discussion/heart-transplant-231a15/

And others have discussed changes in personality too:
- Anyone experience personality change post solid organ transplant?
https://connect.mayoclinic.org/discussion/personality-change/
And then there is post intensive care syndrome, which can be experienced by both or either patients and family members.

- Post-Intensive Care Syndrome (PICS) - Let's talk https://connect.mayoclinic.org/discussion/post-intensive-care-syndrome-pics-lets-talk/

@cmccall813, I like the title that you chose for this discussion "Grief of Transplant", which differentiates it from the discussions linked above. While you accept your son's complex medical care and how it has and continues to affect him, you're recognizing the loss as a parent. It is a loss that deserves acknowledgement and self-caring. Yes, you soldier on as mom and caregiver. But you permit yourself time to grieve.

Thank you for opening up this space to share your thoughts and to give people a place to share theirs.