Date Night on the Organ Transplant Floor

What do you do when you’re given more than you ever expected?

It’s a Wednesday night and my wife Cara and I are out for a walk together, a moment we’ll never forget. Yes, we’re in hospital gowns, and we’re both holding IV poles as we walk, but we’re still calling it a date night.

How did we get here exactly?

For a while I knew I’d need a kidney transplant. I just thought it’d be later in life. Several years back I learned that I have polycystic kidney disease (PKD), a genetic disease that runs in my family. I received care for the last few years from a great nephrologist. But unfortunately, my kidneys went south quicker than I expected. The funny thing about a kidney disease like mine is it’s completely hidden to the world. I was in good shape otherwise, staying active, working full-time, showing no obvious sign of needing major surgery. One of the providers I saw at my pre-op appointment confirmed this, saying kidney patients like myself are often in good shape. It’s just those pesky kidneys that are a mess.

Once my kidney function went below a certain level, which it did late last year, I could be listed as a candidate in the national organ transplant network. My nephrologist was determined to have me listed before my kidneys failed and I’d have to go on dialysis. I started working with the organ transplant team at Strong Memorial Hospital, part of University of Rochester Medical Center. Since I’m an employee there myself, I had visions of being whisked through a deluxe employee-only transplant process. But apparently such a thing doesn’t exist and all patients are treated equally well. Can’t argue with that.

As we let friends and family members know about this news, several of them offered to be tested as potential donors. I honestly couldn’t believe it. How did we get such selfless people in our lives willing to do something this incredible? It blew my mind. We are ridiculously blessed.

I thought the only options for receiving a kidney were from a deceased donor or a living person donating directly to me. But it turns out another option is a paired exchange, a.k.a. a kidney swap. In an exchange a person can donate on behalf of someone they aren’t a match for, to another recipient they are matched with. Then, depending on how many other pairs there are, the person linked to the original donor receives a kidney from another donor.

Cara decided that since she couldn’t donate directly to me, as we have different blood types, she wanted to be a potential donor in a paired exchange. What a wife I have, wanting to do this for me. I really don’t deserve her. I told her she didn’t have to do this but she wouldn’t budge. She went through an extensive screening process, including a physical exam, a battery of blood tests, a stress test, cardiac test, x-rays, scans, and interviews with a psychiatrist and a social worker. After all of this was completed, the transplant team approved her as a donor candidate. I again asked her if she really wanted to do this and she said definitely. It turns out her blood type was fairly in demand, which would help me get matched in a paired exchange.

The organization that finds the matches for transplant exchanges is the National Kidney Registry (NKR), which was started less than a decade ago. They have revolutionized paired exchanges by developing a kidney matching algorithm light years more advanced than existed previously. When the team at Strong entered Cara and I into the NKR database, they told us we could be matched pretty quickly. Cara was thrilled to hear that but I refused to get my hopes up. Maybe it’s because I well know that a person can wait years for a deceased donor, so I found it hard to believe that this could possibly be so quick. Plus, we were entered into the database on April Fool’s Day, so I was a little worried that a colossal joke was being played on us.

Shows what I know. We got a call from Strong about a week after being listed, saying we were matched with a donor and recipient in a paired exchange. Holy cow. It looked like the exchange would involve six people total: Cara & I and two other pairs of connected donor/recipients.

At the same time, a couple of people close to us had gone ahead and started working with Strong as potential direct donors, going through the screening process. So somehow, I had multiple options to potentially receive a kidney. Again, how was this possible? It almost didn’t seem right.

The team at Strong ultimately recommended the paired exchange as my best option, because the kidney I’d be receiving was the best match for me. I again told Cara she didn’t have to do this and she again said she was all in. We agreed to go ahead with the swap.

It wasn’t a done deal yet, though. We both had to submit updated blood samples to be approved by the other hospitals. Then all of the hospitals had a conference call scheduled in May to work out all of the logistics. From there it was just a matter of waiting and hoping that no surprises popped up to derail the exchange.

As you’re probably guessing, there weren’t any surprises, and June 21st was locked in as the big day. My sister Carla generously offered to stay with us and help take care of our kids as they started their summer activities. Friends and family members offered dinners, lawn care, rides, and anything else we might need a hand with. We didn’t feel worthy of such incredible generosity and caring.

The Big Day

Cara’s surgery was scheduled for 5 am so she had to go in the night before. She had a great attitude about it.

At first I wasn’t worried but, of course, what-if thoughts creeped into my head. Here she is, voluntarily having major surgery — to remove an organ, by choice — so that I can receive a kidney. If anything happened to her, any complications at all, it’d be about the worse thing ever. I prayed for the surgery to go perfectly and Cara to come out fine.

The next morning I figured I should do something productive on my last day at home. Plus I needed a distraction while waiting for news on Cara. I didn’t have to go to Strong until noon, so I went out and mowed the lawn. In hindsight, it may be unusual for a transplant patient to mow the lawn on the day of surgery.

At 10 am one of the surgical residents called and told me Cara’s surgery went smoothly and she was in recovery.

Thank God.

Having major surgery is an incredible experience. But I realized I only feel that way because I was confident in the team caring for me. Throughout the entire process the team at Strong was so rock-solid, I had no worries about putting my life in their hands. They’ve done many, many kidney transplants and have an impeccable rate of success. The only time I felt otherwise was when one of the transplant coordinators told me of the possible complications in surgery. They have to inform you of these, even if they rarely happen. Before meeting with him I had just chugged a big cup of coffee, which can upset my stomach. Bad timing. The coffee plus the list of things that could go wrong made me seriously queasy. I told myself to keep the faith that I’ll be fine.

I was able to visit Cara before checking in myself. She was half-asleep and sore but in good spirits. Most importantly, she was doing great.

For me, first I was taken to Pre-Op, where I was prepped by two friendly nurses. Next, I was put on a gurney and rolled into Pre-Anesthesia, where the anesthesiologist confirmed that my vitals looked good and I was ready to go.

Anesthesia is an amazing thing. One minute I’m lying in the OR, looking up at lights the size of small UFOs, and the next I’m waking up in Recovery/PACU (Post-Anesthesia Care Unit). I was massively parched and for some reason told anyone nearby that I could use an iced coffee from Dunkin’ Donuts. No luck. I couldn’t have any fluids. Eventually I got something from the nurse: a stick with a tiny wet sponge on the end that I could suck on. I was thrilled.

The doctors checked in on me and told me the surgery went like clockwork. A couple weeks later one of the transplant coordinators told us the donor kidney wasn’t placed in my abdominal cavity where my kidneys and other organs are, but in a space inside the abdomen called the intraperitoneal space. The new kidney was gray as it was placed, as is the norm. Then once it was connected and blood started flowing through, it immediately turned pink, which is what they want. It also started producing urine right away, which is the next goal. (At this point one of the team says “We’ve hit liquid gold!”) She also said the surgeons have to learn, sometimes the hard way, to wear shoe covers if they don’t want their shoes to get peed on.

Life on 4–3400 (Solid Organ Transplant)

At our pre-op appointment we were told that we may be on different floors since capacity is maxed out in the whole hospital. So it was great to hear after surgery that we’d be neighbors. Cara’s first night was rough. She shared a room with another patient who needed care through the night. Plus the bathroom was on Cara’s side. But fortunately she was moved to a solo room after her surgery. I was initially in a room far from Cara, by the nurses’ station, then was moved to be diagonally across the hall from her.

If you have to be in the hospital recovering from surgery, it’s a huge plus to have your wife across the hall sharing the experience with you. I’d be lying in bed or sitting in my chair — in a light fog either way — and Cara would amble in to visit, her IV pole by her side. We could commiserate on how each other was doing or just chat. She’d usually encourage me to go for a walk, as we were advised to do. She later described those first days as a surreal haze of receiving care, talking walks, drowsiness, and sleep. Being on industrial strength pain meds of course had a big role to play in that.

Even if Cara weren’t there it would’ve been a fairly pleasant time on 4–3400, believe it or not, because of the nurses. They were simply awesome. So caring, friendly, and patient, all while performing non-stop thankless work all day (or night). If any of them were stressed or having a rough day, they didn’t show it at all.

The verb “care” is funny because its meaning can change based on the word that follows it. Caring for someone is different than caring about someone. Nurses (and doctors and techs) are expected to care for you, i.e. provide care. But our nurses went beyond this, caring about us and making sure we were recovering in every way. I don’t know if this is typical for nurses in general, but I do know it made a real difference for us. Our mindset and ability to heal up was in large part thanks to the care — in every meaning of the word — that those nurses provided.

The nurses were also constantly helping each other anytime they had to be in two places at once. After Cara pointed this out to one nurse, she said “every patient is our patient”. On one of their posters in the hallway, they call themselves a family. Seeing how they took care of each other, that was the perfect word to describe them.

We definitely felt like the floor misfits, totally different from all the other patients: younger, walking around the floor together, hanging out in each other’s room. The nurses all knew when looking for one of us, if we weren’t in one room, they could find us in the other. Our days weren’t bad at all: getting checked on by our nurses and the transplant team, going for walks, eating, napping, and getting visits from friends and family members. Our pain and soreness steadily went down until we didn’t need regular pain meds anymore.

I hope I don’t have to stay in the hospital again by myself, because Cara being there made it almost enjoyable. And again: she chose to be there, giving up a kidney for me. That’s just crazy.

For some reason I packed clothes for the hospital. Somehow I forgot the iconic element of the in-patient experience: the hospital gown. It may be the most unfashionable item on Earth, and you couldn’t care less. After surgery, you’re perfectly content to have that no-frills gown on you when you’re lying in a hospital bed or up and walking around. Of course, for the walking part, you may get a suggestion to add another gown, reversed, since they are open in the back.

We found out that the kidney exchange actually was different than we had understood beforehand. Cara’s kidney went to a recipient in Washington, D.C., and the donor tied to that person donated to a recipient in South Carolina. My new kidney came from an even more amazing source: a non-directed donor, not linked to any recipient. A Good Samaritan, who decided to do this as a good deed, to help a stranger somewhere. Amazing. Unbelievable. You almost can’t believe there’s still people like this in the world, but there are.

So here’s what hit me: this person had absolutely no need to undergo major surgery and donate one of his kidneys. But he not only did decide to do this, he also was a perfect match for me. How is this even possible? Of all the people waiting for a kidney, why on Earth was I the right match? It’s almost like God is sending me a message that I’ve been given an immense gift, and I better make the most of it in this life.

Our extended date night ended when Cara went home on her fourth day. She was definitely ready; she’d started wearing her own clothes the day before. Once you’re done with the gown, that’s the official signal that it’s time to go home. At least in my book. It was sad not having her there with me anymore. I sat in my chair and started watching shows on TV that I’d never watch at home. Fortunately I was cleared to go home the next day. I knew it was time because I was actually happy to ditch the gown.

My terrific nurse walked me through my discharge instructions, including managing the three dozen pills I would be taking daily. She then helped load up my supplies on a wheelchair, which she took downstairs with me to the patient pick-up area. Wow. I guess I assumed someone else would do that. She then gave me a hug before heading back upstairs.

Did I mention how great the nurses were?

Cara and I haven’t been able to organize it yet, but we are going to figure out some way to thank the nurses on 4–3400. They made our hospital stay way, way better than we would’ve ever imagined.

Since we’ve been home friends and relatives have taken care of us, our kids, and our house, and given us a mountain of food, cards, and well wishes. In the words of Wayne Campbell and Garth Algar: We’re not worthy.

At the heart of this whole experience are two things. One, the immense sacrifice that people (including my wife) were willing to make for me, including the new lease on life I’ve been given by a total stranger. And two, the unimaginable care and support we were given by so many people. I want to say it’s humbling, but it’s more something else. I think I’m a good person but I don’t feel deserving of all that I’ve been given. It’s like when you give someone a pretty good Christmas present and they hand you back a gift that barely fits through the door. You feel bad accepting such a gift but you’d be an absolute heel to refuse it.

I realize the only solution is to do all I can to return the generosity. Take what’s been given to us and pass it along to the next person that needs it. Considering the unbelievable gifts we’ve received along this journey, it’s only right that we share them with others. We’re not sure how we’re going to do this, but it’s definitely going to happen.