Things will shift significantly tomorrow once we're discharged from the hospital floor 10E, and it's going to be hard to deal with that emotionally. A lot of donors talk about a depression that comes on afterwards, no one knowing if it's physical or mental in nature and source. Essentially, after all this intense effort and work to get to this goal, the transplant team is done with me. I have one follow-up appointment two weeks from today so they can check the incision and give me departing instructions, and then follow-up labs that are required by UNOS at 2 months, 6 months, and 2 years. I can do those from home.
The team has been great to deal with and they took good care of me throughout the process. This included the nurses, other care providers or assistants, the pharmacist, the team doing rounds with the surgeon, etc. They have all visited me regularly since Monday morning. Today the Independent Living Donor Advocate came to visit and asked if I would suggest any differences that would help make the program better. I said it was all good, but if anything, more attention to the donors in the early stages of the process. I had my brother Seth to answer my questions since he is a nephrologist. But most donors don't have someone so readily available at the time they most need support and attention. Once the matching is done and the testing is done and everything passes muster, it's rare for someone to pull out although a donor can still opt out at any time up until they go into the operating room. But how many potential donors are lost to the beginning stages, before they are really on the radar of the transplant team, because they have questions and doubts and no one to answer them? This is where I would put extra emphasis, though I understand what drives their time and attention -- basically, when they have one hooked, focus goes there. The other fish just cruising around just haven't earned that extended effort yet. So I'm not sure they can change, and filling this gap may be up to advocacy efforts. Towards that effort, this blog and the sharing of our story is a start, as I'm sure we've raised awareness in at least a few people.
Back to me, I think what I need to remember is that this next 13 days while I'm still here in OKC and just resting and healing, I have to heal in every way. That means give myself whatever time and tools I need to deal with emotions that come up. Journaling is one for sure. I've kept a journal about the kidney donation that goes from 1/5/19 to 6/24/19. Now I need to start a new one for after. I'd like to re-start meditating. I might read some books for fun (fiction, even!) to just give myself that gift of leisure time. The biggest thing is reconciling this into my identity. I am a kidney donor. I'm a one-beaner. Some people say I'm a suerhero or an angel... I don't know about that. But I did actually do this thing, and it has changed me. I need to understand how, and that will take a bit of work.
Today (day 3) was not hugely eventful but we all had some signs of progress, some good visiting time, and more confidence that things are still looking really good as far as the transplant being successful. Dustin and I both did a lot of walking today which is very helpful in getting back to normal quickly and avoiding complications. Our families supported us for another day, and I for one am feeling lucky and appreciate Dale very much!! I also got a visit from my friend Lee which made me happy. Got more messages, etc. from many people, and got to meet Dustin's dad as well as his Mom whom I had met back in April. I'm so glad I could help this family and specifically the family member they all value so much.
I am not sure if the next few days will be useful to blog or not. We'll see. Anyway, thanks for reading!
Anna Cannington has offered to be part of this program. As a kidney donor with a nephrologist brother (not to mention next level human) she will be able to provide unique insight into "other side" of the transplant process. It is particularly apt for her to join up as she is Dustin's Donor. To schedule a conversation with either of Anna or Dustin just connect with either of us!
Dustin was diagnosed with IgA nephropathy (Berger's Disease) in early 2007. He and his family know well the struggles that come with suffering kidney failure, dialysis and the transplant processes. Born from these fustrations and Dustin's love of strengths-based coaching (centered on what is best in people) comes the Kidney Koach program. This NO FEE program is for Renal patients, their families and nursing staff that want support, understanding and a little help on the path.