I'm not sure where to begin, perhaps it best to explain the situation in case that matters.
- I volunteered to donate to someone I didn't know (that part turned out awesome)
I've never had any surgery before in my life, despite being half a century old
My motivation was to help someone's family have their loved one longer and better.
I told just 3 people about my journey before I did it.
Another important bit to acknowledge, that is not at all obvious to anyone - at least no one I've found yet:
As a donor, my position was completely voluntary, and not necessary. Any other patient in the hospital is there with a need - a need for healthcare folks, who are all doing their job. So right off the bat the relationship between patient and doctor with a donor is tacitly very different, as they are used to having the power and being needed.
OK, so blah blah blah, there's the initial online registry and those first few phone calls from people who are VERY excited, then some detail starts to emerge about a potential match. Then begins the round of testing - from tip to toe, inside and out - to make sure I qualify as a healthy donor. All tests I easily justifiied as "should have", "need to", and "good to know". Then come the zoom interviews with a half dozen people I don't know, don't truly introduce themselves, and many of whom I never saw again - yet all of whom say they are part of my 'kidney donation team'. More forms, more tests, then I get a surgery date. All very exciting!
This is when I start to ask some more specific questions about the process - pre-op, the surgery, post-up, etc. - what to be prepared for. I don't really get specifics, so I hit Google with determination. I'm someone who wants to know. And yeah, maybe I should have asked earlier in the recruitment process, but now's as good a time as ever given the surgery is in less than 2 weeks.
Google was a Mistake. I know now there's a reason you have to search deep into Google to get the answers to my questions: you do not really want to know. So now my ignorance turns to fear.
Act #1
I express some personal concerns about the preop process in an email and was told the surgeon would be calling me that afternoon. On that call, instead of understanding and and a discussion about solutions, I was told that she would "think about my case and get back to me as to whether or not she thought I would make a good donor." For the record, this is 10 days from the scheduled surgery date. Tests are done. I'm cleared.
Act #2
In a last ditch attempt to really be heard, I write a very personal and private email to the coordinator (because no doctor emails are released) offering painful clarity for the reasons I have my concerns. This email is then forwarded to the intended recipient. I discover later, it was emailed to the entire coordinator team. If I had known any of this was a possibility, I would have cancelled rather than to experience such embarrassment. I didn't write that letter to everyone. I wrote it to ONE doctor.
Act #3
In an attempt to smooth things over with the "erratic and unstable donor", I am reassigned to the "good cop" surgeon on the team, who now wants to talk with me. The link I'm given for the call brings me into a Zoom meeting of ANOTHER donor team discussing very specific details about their patients: very clearly, I might add - with charts, and remarks I'm sure they would not have said if they had noticed another person had entered the meeting. I tried to be noticed, as they continued on. When I was acknowledged, they actually told me to stay! They all eventually left and I was the only one remaining in a meeting that was not for me, with information any one of those patients could have sued them over for lack of privacy. All I could think was my file. My situation. What I had revealed. Did someone come early into a meeting unnoticed and hear my personal issues?! I will never know, always fear.
I'll stop here, I'm not sure how much more you want to know - the point is, as a donor, I was treated like a needy patient, which is bulls***. I will speak up. This is still my body. And yes, you will, eventually listen.
I learned how to stick up for myself, and that I
could. In hindsight, it still makes me sick that I had a contract made requesting simple courtesies one would naturally assume to be standard. I know now those courtesies are never respected otherwise, and so few even know.
Playing the role of donor, among an army of caregivers, requires a clear understanding of your position and your rights, the ability to know who is really listening, and more trust I than I was prepared to give.