I titled my last post something that included telling the family and realized later I didn’t talk about that at all! We’re now at less than 9 days to surgery and have to admit my anxiety level is escalating, yet try to temper that with Lisa’s is probably higher. So, part of the consideration process is just determining if you’ll have the support of family and friends in what you are doing. While donating may be selfless, you find out that some folks have fairly selfish considerations when told. Overall, I think the first reactions of family members were more stunned and surprised. They don’t know Lisa; but knew the story. Oddly, my younger sister also had a poor pregnancy experience (but not the dire consequences) so perhaps that helped my family understand. I also come from a family of healthcare workers so perhaps helping others is ingrained in all of us? Anyway, overall when you explain your rationale for donating, and explain the health considerations post-surgery I’d say most conversations went well. This whole support concept is actually one of the key areas the social worker assessment delves into prior to being approved for surgery.
Some of the other things I thought about were what happens if someone in my family eventually needs a kidney? I’m also the designated guardian for my nephews should anything happen to my brother and sister-in-law, would they feel differently due to my doing this? My dad is diabetic, I’ve had 2 grandparents with kidney failure (late in life) am I being an idiot that I can beat this? What it came down to for me – is never know if I’d match with a family member and they don’t need a kidney NOW, Lisa does. I have a bunch of siblings and cousins so chances are there might be a family match with me out of the mix. My brother and sister-in-law seem fine with my decision. Getting diabetes myself – entirely preventable through lifestyle choices…
I have a friend in El Rito, NM whose sister accepted a kidney from their father last year. Their dad is doing great, maintaining a healthy weight (he had to lose 30 pounds prior to donation) and has no regrets about donation. The sister is back on dialysis. She has had repeated infections this past year and is back on the transplant list. That’s the reality of donation and if you’ve read Lisa’s blogs, you know that there are some chances that my kidney may not have a long time home with Lisa.
So that brings us to the topic of depression. I know you’re excited….come on! I spent a few years at my past job (NCQA) leading up the behavioral/mental health quality measurement work. So, this is an area of special interest for me. One of the health considerations for a donor is the aspect of mental or psychological health. The risk of depression post-donation is escalated for non-related donors. For all donors, it’s similar to postpartum depression. Similar to pregnancy, there’s a lot of anticipation for the “event”, and once it’s over – donors sometimes feel adrift. Unrelated donors sometimes experience hardship at returning to a “normal” life. The social worker explained to me that often donors are given a lot of extra attention and are all hyped up and when that attention goes away and goes back to the recipient post-surgery – depression can hit. Yesterday I shared a link about post-donation programs that are starting up – this is where those are essential! Lisa promises she won’t ignore me after next week – but we’ll see… Actually, it’s good to know this. Anyone who knows me knows I don’t seek attention; I don’t like being in the spotlight – so for me – looking forward to lack of attention. I’m just me.
A few weeks ago, I had pre-surgery discussion with the surgeon from UC-Denver. Poor guy. Hopefully he’s recovered from our conversation. With Lisa’s “special” circumstances – all those big words she keeps talking about…. there is an even higher risk of depression for me. So, part of the conversation with the surgeon was about taking care of myself physically and then he kind of glossed over the psychological impact of what happens if the kidney fails – immediately, a few months down the road, whenever? Unfortunately, research tells us this is how a lot of physicians deal with behavioral health issues. Without the gory details, let’s just say I pushed him on the subject to get the discussion on the table. Did I know the answers? Yep – but I consider it training!
If considering donation, it’s important to consider all aspects of health. The reality is, there is not a great depth of research on living donors so gathering a lot of information about consequences isn’t easy. But as the owner of your body, you need to ask the tough questions and be prepared to face the answers and how they will impact you. In our medical system today, you need to advocate for yourself!