General
Post Transplant Grief
Has anybody else ever experienced intense periods of grief post transplant? I'm nearly 3 years out, and most days I have a huge sense of pride in being a transplant recipient. I work in transplant related fields, I advocate a lot for organ donation and patient rights (some of which have recently made it to a national level here in Canada), I genuinely love what I do and can't imagine doing anything else.
And I've been experiencing these moments lately of intense grief. For a while I thought it was survivor's guilt, or guilt around I'm doing so well and I know so many fellow transplant recipients who aren't, and there's some of that there too I think. It's never that I wish I'd never gotten a transplant - if anything I wish I'd been transplanted sooner - but I'm experiencing a ton of grief over who I was pre-transplant and how sick I was and all the terrible things I had to go through. And hearing so many stories, I find I can easily get overwhelmed and start believing things that aren't true (I am healthy right now, this is a fact. My meds are working for me. Just because it isn't true for someone else doesn't mean it's not true for me.)
Has anybody else experienced this cascade of emotion? How did you work through it? I'd really love to shine light on the part of transplant that isn't all gratitude, light and everything is bright and shiny
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Yes, I have a lot of grieving days, especially around holidays and anniversaries. Each year, I think it gets better as I’m learning to process my emotions better. I used to keep my grief bottled up, but now I allow emotions somatically in my body. It’s really funny because I’m so science minded and I can’t even believe who I am now. But somatic work and somatic tracking is being validated in scientific journals now, so I’m all for it! Thanks for bringing up this question. I was certified as a life coach in 2021 and while we talked a lot about mindset and thought work, it’s only been in the last year that I’ve really dove into healing my nervous system somatically and it’s helped immensely with all the hard emotions you go through during the transplant process.
Transplant Patient
Indeed, @AliEm14 - you're not alone when it comes to experiencing all sorts of grief, post transplant. For me, it can come on at anytime, without notice and sometimes it can also last for longer periods. I'm now just over 8 years post heart transplant, however, when I was considered a 'fresh transplantee', I believe I dealt with bouts of grief more frequently. In my case, as the years went on I found that differrent things/events could 'trigger' intense grief. For example, because I interact with so many in the transplant community, I'm constantly reminded that transplant is a treatment and not a fix. There are so many individuals who need life-saving transplants, yet they simply never end up getting their Gift, for one reason or another. Then there are so many others who actually do receive the transplant they were waiting for, but they end up losing the organ, or end up succumbing to the complications. When I hear about these stories/events, they trigger grief. So, I do think that grief/sadness etc are all part of the transplant journey & process. The reality is that there will be days like that, we have to do our best to go through the motions and try to focus on the positive. I try not to focus too much on where I was, pre-transplant - it was a very dark, sad and bad place.
As you had stated, living with a transplant is not all about gratitude, and everything is not always bright and shiny.