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Grief of transplant

Transplants | Last Active: 1 day ago | Replies (15)

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@dotygl

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.

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Replies to "Thanks for sharing about depression and feeling different after transplant. I am sorry you are coping..."

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.