Celebrating Being a Living Donor

This article is a compilation of the posts I have shared of my journey with living organ donation in honor of National Living Donor Day.

Friday, December 31, the end of 2021, marked the start of the 60 day-countdown to my donating? one of my kidneys. I started posting about my journey on LinkedIn around then, as I feel it is important to be open about things like this even in a professional context.

I'm young and healthy - and I was a match for my second cousin Brandy, who suffers from Polycystic Kidney Disease (PKD). We got the notice that I was approved in September and scheduled for March 1 (National Kidney Day, in fact). I'd never stayed in a hospital before. I'd never had a major medical procedure. I have body image issues that made me upset about scar placement from the planned surgical incisions.

But I did it. And my hope for those who see this is that it puts a seed in your mind of what's possible in 2022. Healthy folks function great with one kidney - no long-term effects - and it can give double the transplant life compared to a cadaver kidney (15-20 years’ viability vs only 10). You can donate your liver and it grows back. Living donation can be more than blood, plasma, and platelets. (Please do donate that too!) Please also consider marking yourself as an organ donor on your license.

How Did I Get Here?

My cousin quietly suffered from kidney issues starting in 2001. It wasn’t until 2018 when things got bad, and doctors started talking about an early transplant to keep her off dialysis, that she publicly let us know what was happening. I asked if she’d need a transplant, and she said, “Maybe.” I didn’t think much about it after that until 2020 when she was getting sicker. She went on dialysis January 2021 and was approved for transplant list May 2021.?

That’s when I came back into the picture. She asked if I’d still get tested, and I most certainly did. I applied in May, did intake in June, was tested in July and August, and was approved in September. Prior to approval as a donor, I went through a battery of tests to determine my eligibility. Just being a match isn’t enough - you have to be compatible with their guidelines for lifestyle, mental health, and physical health, too.?

Someone asked how I decided to do this and I just shrugged; I didn’t really decide, I just did it. I’m a blood donor and an organ donor on my license, and I’m on the Be the Match registry for bone marrow (that needle is way scarier!), so why wouldn’t I do this? Lucky for us, I was a match with great kidneys ripe for the taking - er, transplanting.

It Takes a (Pricey) Village

I'm grateful for all the people who supported me in this. It really takes a village. I was told I’d be off work three weeks and had to be supervised 24 hours a day for two of those weeks. My mother would come to stay for most of the 2 weeks; however, with my 3 youngest siblings still at home, at 3 different schools, it was an undertaking to arrange for a parent to be gone for that long. But my parents’ friends stepped up for trips to school while Dad worked and Grandma brought them home from school, so that Mom could be with me. Several of my friends offered to be my "babysitter" for any additional days needed when Mom wasn’t around or to just be company while I was stuck at home.

There are a lot of expenses and plans that go into the massive process that is living donation. We were lucky in that we got a grant to cover my missed wages because with the job change I had no vacation time to use. But there was so much more than that for Brandy: she set up a GoFundMe because her husband was off work to be with her in Portland, and her brother off work to care for their kids back home, etc, and insurance wouldn’t pay for everything.

It's a lot of moving parts! It was great to see the people volunteering to give rides and such, though, in support of what we're doing.

While I was approved in September, I spent October to January in the UK, so all of my pre-surgery final testing happened in February. It started with infectious disease testing round 2 (about a dozen vials). The following week was additional testing to make sure I had no long term impacts from having COVID (got that right after I got home in January!) like a chest x-ray and EKG. Then at the end of February I had another final round of blood draws on the weekend (plus COVID testing, of course) before the final pre-op that included the surgeon on Monday the 28th. Between calls, testing, and in person appointments, I had 5 pre-ops in February! I'm grateful for the repeated good test results over the 9 months of this process for me. It reminds me just how healthy I am to be able to do this.

I started my current role in December while still abroad in Scotland, so it’s doubly awesome they were immediately on board with me needing to go out for surgery so quickly after my start date. There were numerous meetings to do the hand-off conversations so my teams were set up for success in my absence. (They did great because they're all awesome.) I'm appreciative of both AP Professionals and Nike for their flexibility as I embarked on this journey. Having support from my employer(s) was key to my ability to donate.?

That First Hospital Stay Experience

The hospital stay started early morning after little sleep with a terribly sugary protein drink in my stomach, nausea, multiple IV attempts - not to mention a decontaminating shower with a soap that was basically a squeeze bottle of foamy Pepto Bismol. (My nurses think I’m quite funny with my colorful descriptions.) They sneakily put in the anesthesia and I don’t remember the trip to the operating room!?

My kidney disappeared to do a new lifesaving duty in Brandy. There was no time for anxiety (Mom says I was anxious, and the anesthesiologist mischievously informed her he’d already dosed me - I was told after.) The first day in recovery was fine, but it gave a false sense of security on how recovery would go - Wednesday (day 2) was TERRIBLE. Thursday (day 3) was thankfully more tolerable and the day of my discharge.

My former kidney immediately functioned beautifully in my cousin. Some of her labs were better than they'd been in 10 years! She went from 5% function to 60% function as soon as Nicole Kidney was hooked up. We even have a video of it working in the operating room before they closed her up.

I wish it was as simple as leaving it at those brief descriptions of the three days in the hospital, but many people, especially women, are ignored about their own body and their pain management, so I do think it's important to highlight how I spent 8 months advocating for myself (specifically asking for flexeril, a muscle relaxant, because I've had post-surgery spasms before) and being told that should be no problem. But the day after surgery, when I asked, they wanted to wait and see. Not 5 minutes later, I seized up in agony as my torso spasmed around new incisions - hyperventilating, tight-fisted, unable to speak, sobbing. I ended up with IV pain meds, and my nurse chased down the doctor to throw a fit on my behalf. I should not have had to experience it that intensely (I'm sure with the meds I'd still have felt something) to get what I'd been told I could have. I'm lucky it happened during my vitals check because I couldn't call the nurse or say what was wrong. My donor team in the clinic didn't know this happened in the hospital (separate teams!), but it highlighted a gap - I'd advocated, was told it was fine, the surgeon heard once and forgot, and nothing made it to the hospital. I'm hopeful this won't happen to someone else now that the communication breakdown was highlighted by my experience.

Aside from this, they made us go for walks three times a day and sit in chairs (also three times a day). It was a painful, heavy effort to get in and out of the bed, so we’d get up to use the restroom, sit in the chair to recover, then go for a walk - me to Brandy’s room next door, or Brandy to my room. Then down the hall for a little loop. Brandy got to order food off the normal menu at the hospital because she was no longer considered in need of a renal (kidney) diet. Small wins!

Sneezing is a No-No Post Surgery

Following release on day 3, I had to be supervised for almost 2 weeks up to my post-op appointment. I was unable to be alone, with no driving, bending, lifting, twisting; there was a whole cocktail of medications that I was carefully removing or spreading out until I didn’t need them anymore.

I love food, but post-surgery I had no appetite. My coworkers aimed to change that with Grubhub gift cards on a meal train they set up for me and a fully cooked homemade meal delivered to my door. I also love to laugh, but laughing caused pain so I wasn’t sure if I was crying from laughing or from pain, when Mom set me off about a week after surgery. I hurt through to the next day. Sneezing was the evilest action my body could do; it took weeks for me to sneeze without major wincing!

I flew through surgery and the immediate recovery time without much issue. Mom was here for me. I was warned that it was possible to have a shockingly emotional response after donating. I avoided a lot of pre-surgery jitters and seemed to be pretty even-keeled after... until mom went home.

Oh boy.

I was frustrated because I felt like my response to her departure was irrational. But damn, I went straight to tearful anxiety on the Saturday morning she left, and it did NOT want to let up. I was otherwise recovering very well. Apparently I just had to be an emotional mess for the weekend, either because I’d suppressed some anxiety or because having the change in post-surgery status quo triggered the emotional response the team warned me about. Don't know what did it, but it wasn't fun! It’s important to be transparent about this experience and these feelings, because our mental state is an integral piece of our health that shouldn’t be ignored. The anxiety that started Saturday didn’t go away for weeks.

By the time I hit my post-op appointment 15 days after surgery, I was basically off any sort of pain medication. They gave me permission to drive (carefully) and were very happy with my healing. I could be alone in the house! I was exactly where they wanted and will go back in 6 months for my next round of testing. I had bruises on both arms - the ones people don't see are the most painful ones because they were so deep. I had 3 healing incisions on my stomach. I didn't entirely understand the signals my body was giving or the way my body felt, and I might not for a while. I wasn’t considered “done” healing until this very week, when I’m posting this article, about 8 weeks after surgery.

Most Important Certificate of My Life!

I received a framed certificate that essentially thanked me for donating. My cousin is doing well post-transplant. My kidney gives her back a normal life - not tied to dialysis three days a week, on a super restricted diet, etc. She'll have energy and freedom again! At her 6-week appointment, the kidney function was up to 77%, which is considered amazing for a single kidney.

I'm lucky that I have supportive coworkers, bosses, family, friends - my network on and off LinkedIn - that allowed me this time and space to recover/process. Many people don't. I hope my experience gives a glimpse into the world of living donation but also creates awareness so that we keep holding space for what is happening in others' lives. I hope employers read this and think about the processes in place for their employees that would make this possible - or impossible.

Was it a blissful, perfect experience? No. Did I get a 3 week spring vacation? Not in the least. Would I do it again if I could? ABSOLUTELY.?

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