Happy July! Yesterday was fragmented but was a good day. Although I did some writing I really couldn’t pull together coherent thoughts. Today seems better so here's another blog post. I am currently settled at friends Randy & Jenny’s house who are graciously hosing my “week 2” R&R here in Oklahoma City. Yes, it’s now Week 2! One week ago right now the surgery was underway. Now we’re WAY on the other side of it. That week was the steepest slope for me I'm sure. It will be rather uneventful now; technically I could be home now because I have no mandatory labs or check-ups until partway through week 3 on 7/10, but since I have to be here then and I need to focus on resting in the meantime, staying here was a good scenario and has been the plan since the dates were known. I’ll have a few outings here and there to keep from going stir crazy. Last night we went out to dinner at a Vietnamese noodle place. WOW! It was really outstanding!
Dale went home yesterday and is already back at work. He hated to leave me, but I assured him he was here for the important part where I needed him. He really came through for me on this whole thing. Of course he took great care of me in the hospital and after, but the part that really makes me teary-eyed is thinking of how sweet he was on the trip up here and leading into surgery. He was endlessly patient and we were never irritable with each other, even though he was really not wanting to do this or see me cut or hurt or disabled in any way and had understandable doubt and fears about the whole prospect. He trusted me and supported my choice, and he participated in the entire operation and we made it ours. I hope most of the fears are gone now. I was feeling like myself by day 3 and I’m physically getting better by the day. All of that seems to be related to surgery recovery and none to having only one kidney, but the long-term story will have to play out. My brother Seth has always had confidence about that.
I said a few entries ago that I would write about Seth so I'd like to do that today. Seth is my younger brother by 5 years and we seem to get in the habit early in life of not paying sufficient attention to our younger siblings as we get busy with our more advanced lives, right? Then they go and do amazing things while we’re not looking. While I was active duty in the Air Force in the '90s, Seth graduated from Harvard University and then went to Medical School at the University of Massachusetts. After a residency in Internal Medicine he became a Nephrologist, or kidney doctor. He is currently an Assistant Professor at Tufts University School of Medicine with clinical focus areas in “Dialysis, general nephrology, chronic kidney disease (CKD), diabetic kidney disease, glomerular disease, vasculitis, hypertension, cardiovascular disease in patients with kidney disease, acute kidney disease, acute kidney injury and kidney stones.” Why nephrology? He says, he likes nephrology because he gets to take care of the most complicated, and sometimes sickest, patients. (Randy, knows some cardiologists and says they bow down to nephrologists, because the complexity of the care is astounding.) I have really come to appreciate both the kidneys and my bother Seth’s expertise over these past 6 months since my kidney journey started.
Seth was the first person I contacted on January 3, 2019 when I decided to be a kidney donor for Dustin. I remembered talking a year or two earlier with Seth about living kidney donation during a family visit. Even with him being a nephrologist already for many years, and of course hearing stories of kidney donation, I really had very little awareness of the whole thing until that conversation. I remember asking a lot of questions and coming away from it with the thought, “I think I’d be willing to do that” if it ever came up, such as for a family member. Anyway, it put me a pre-set mindset of willingness to consider donation, and the news story about Leilani made me progress to action, so the next logical step for me was to contact Seth to see if there was any big thing I needed to consider. With his initial helpful input and no sign of actively dissuading my thought process towards it, I proceeded to talk with Dale and other family members, contacted Dustin’s team, completed the initial screening, and the ball got rolling.
January – March were the busiest months for me question-wise. Not yet confirmed “matched” to Dustin (that came March 22, 2019), the transplant center (actually “centers”… I dealt with three of them! A story for another day!) treated me as a prospective donor, just another fish in the pond. I can’t blame them. They must have a lot of those. Once they have a match and the comprehensive testing is complete and you are approved as a donor, they are quite at the ready with anything you might need! But not so much in the early stages. Early on you are somewhat on your own, and the questions are farther out of left field because the whole thing is new and there are so many possible progressions of the journey in addition to the straight path. The mind is busy with doubts, concerns, things that could go wrong or less than ideally. My mind tends to get “wrapped around the axle” with these sort of thoughts sometimes and Seth saved me from that again and again. I’d send a question and he would reply almost immediately, giving me the information and context that I needed to progress past that sticking point or just relax. A few times I’d send a test result or something that I thought could be a problem, and he would say, “I am not worried.” That always settled me right down.
Seth helped set my expectations from the beginning. Kidney donation is usually not a lifetime thing for the recipient, though of course it is for the donor. Early on, we talked about Dustin’s specific condition and the possibility that it could reoccur in the new kidney but would likely take many years if it did. Seth said, “In general, I advise that the donors not to get hung up at any specific expected outcome: view this as giving a good chance at a fairly long (many years) dialysis-free interval, and a small chance of a short or very long interval, But it’s unknown ahead of time.” I was OK with that going in, and still am now. Every day of success just makes the whole thing more worth it, but I’m glad I did it no matter what happens from here on out.
My questions to Seth actually slowed down after my 3 days of testing in April which I called "Kidney MEPS" and included an ultrasound of the kidneys, CT Scan of the abdomen with contrast, multiple labs (blood/urine), chest X-ray, EKG, Echocardiogram, treadmill test, Renal flow test, and individual appointments with Nephrologist, Surgeon, Nurse Living Donor Coordinator, Social Worker, Psychiatrist, and Independent Living Donor Representative. At that point I got the fill input from the transplant team and they were fully available to me afterwards and from that point on. But Seth always gives a reassuring view if things seem unclear.
The biggest comfort to me is that I know that Seth will be there for me for the rest of my life as I navigate life (probably uneventfully, but unknown) with one kidney. Every doctor will have their own new opinion on the significance of my “one bean” status as health issues and checks arise. Seth will always understand the big picture and what it means to ME, and let me know what matters. Knowing this going in made a huge difference to me. In fact, as I told Dustin and Kenzie in a video I made a while back talking about why I’m doing this, if I had to pick the one reason that most people DON’T do this, it’s probably that big unknown. They don’t want to subject their family members and others to possible health problems on down the line for a choice they make now. When that impact isn’t really understood, they don’t feel free to make that choice. With that resolved or at least reasonably quantified, I felt like I could truly make an informed decision to do it.
I do have more words in me today but I suppose that is enough for here! I might actually try to get a few hours of work done today. I don’t know if anyone misses me yet, but I am beginning to miss work! That’s got to be a good sign!
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.