Tuesday, October 6, 2020

Being a Living Kidney Donor: Lessons Learned & Surprises Revealed!

Even though I never imagined being an organ donor until passing away, I am one now.

People can survive with just one healthy kidney, so someone with two healthy kidneys may choose to donate one. This is called a living donor transplant. I am a living donor.

The two most common reactions are "Why would you do that for a stranger?" and "Wow, that is selfless". While some of you know that "Why" questions create defensiveness, I simply smile and share back the truth - my thought was "Why not? What would be the reason I wouldn't assist another human being if I could, even with the risks - I would hope someone would do that for a loved one of mine if it came to that.", and "As it can seem selfless, I look at it as self-aware, meaning I was aware that me, myself, could make this impact, and wanting to give of myself, I was aware of the potential complications, and yet, with that awareness and desire, going through it did not seem like less, it gave me a chance to give more."

Beyond those questions/reactions and answers, four key areas strike me that were learning lessons and experiences that were not expected prior to becoming a living donor on 8/6/2020 (yes, two months ago today!), and they are here below as I am in the "HEALING" phase of change with this decision and donation. Before getting to those four, a few "reveals" include:

It takes more than a matched blood type to be a kidney donor (admittedly, I hadn't thought about it before this year, and if pressed, blood match would have been what I would have guessed was how people donated a kidney). While that is the start, there are such an array of tests from urine to tissue typing to kidney function and stress tests that the amount of time it takes is not terrific, it is enough that requires scheduling and planning to spend work hours getting poked and prodded!

  • 650,000 is the number of Americans facing end-stage renal disease
  • 468,000 is the number of Americans on dialysis, which is what is required if no kidney match is found
  • There are approximately 4 times the number of people in need of kidneys than there are available kidneys
  • Various sources give statistics on being a match, and it is over a 1 in 100,000 chance a non-relative will be a match for donating a kidney (I was for the recipient, Debra), and yet there are paired exchanges, or 'kidney swaps.' During a kidney swap, transplant recipients who have willing live donors essentially swaps donor organs. For patients who have a willing but incompatible donor, the strategy allows people who need a kidney to receive an organ that is a match. How cool is that!?!? 

With all that in mind, through the entire 5-month process, I have been, and continue to be grateful to be ahead of the statistics. Based on the experience with the Transplant team and the Kidney Donor Athletes group, so much of this is due to the state of mind and health I was in pre-donation, as others in that encouraging group have shared similar experiences. Above all else, health and happiness are foundational for everything, and now, here are the four take-aways or areas of learning, so far:

Pain & discomfort. The pain was FAR LESS than ever imagined, and the discomfort was far different than anticipated. The pain is gone. I had pain, true pain, at a low level through the 4th day only. It was a 2/5 at most. I am grateful for that, and still working through the discomfort. The tugs on the skin, the overdoing it at times brings that discomfort right back. It will likely all subside. Other donors say they have some discomfort forever when lifting weights or pushing their limits. The protrusion in my lower abdomen feels strange, admittedly, and yet the four scars are not a big deal to me. The surgeon said think of them as a "Badge of Honor", and still, many people state they won't go through the process due to the scaring. That never crossed my mind that a few marks for life would keep me from contributing to someone else's extended life and quality of life.

Sleep & rest. Never underestimate the need for sleep (no, not speed, sleep!). Prior to the donation, I was someone who could sleep at the drop of a hat. If I wanted to, and I did, sleeping through an opening act at a concert while people screamed around me was something that was not only possible, it was done. Before donating my right kidney, I trained myself to sleep on my back (before face/stomach sleeping was typical). Even though that habit was formed, sleep was the most strange and disrupted. I highly recommend ensuring anyone who has surgery get or have a recliner first. A recliner was my resting place. It was a place to get a lift where needed. We ended up buying a sleep number bed after a week of the crazy battle to get zzzzs, and it seems to be working. I was a huge proponent of 20-minute power naps previously, and I still am now, only they are in "Zero G" on the sleep number! The tiredness was shocking and still kicks my but even though I am working out, eating clean, and walking and/or running 35-50 miles a week.

People & personal. People have been spectacular supporters. The generosity of strangers has been heart-warming. The consistency and kindness has inspired me, someone who reaches out a lot, to do more! Some people have been radio silent, and that works, too. I will not be upset, and yet I will be excited to see some people more than others. Going through the 4-part process of change that I refer to as Impact/Recovery/Healing/Excellence, I am in healing and plan to move through to excellence and achieve it. The people who will be there will be hugely appreciated. Every card, text and message of thoughtfulness personally was a point for pushing. People say "Don't take things personally", and yet we are persons, so how else will we take them. The personal touches people gave me were, and are, valued! Michael, my husband, was an outstanding support, and having a team of 8 communicating out was reassuring, too. Now, Michael forgets that it may take a while for me to get up or lifting something is still something to consider before quickly doing it, so our joke is "You know I only have one kidney, and it has only been X number of week, right?" We both nearly forget at times and that is good, as it is becoming part of how we as people navigate it!

Identify & Identity. As proud as I am to identify as someone who gave a kidney, a #OneBeaner, and to be an Organ Donor, a living organ donor at that, being any of these labels is not my sole identity. This has changed my life, yes, and habits such as water intake, bathroom planning, protein lessening, getting up and down from a chair and other things will be incorporated as my now-moving-forward-self, they are aspects of how I function, and not my only function or focus. I want people to see me as Debbie Lundberg, and all I do, and being a kidney donor as something for which I identify with and smile in hopes of encouraging others.

A hope I have is to encourage people to be health-minded, and another is to be your own health-advocate, as well as certainly wishing others will consider being a living donor once reading that the process is one to use the change strategy to work through with success while donating life!

The lessons will surely continue to reveal themselves and grow, and the scars will go away some while the protrusion in my abdomen will lessen also, and forevermore I will be amazed by, and appreciative of the opportunity I had and accepted to change a life!