My name is Karen, and I donated my kidney to a friend in October of 2018. My story is a little different than most of the ones you read here, because I experienced a very rare complication that took a lot of time and suffering to fix. I think it’s a valuable story to read though because it shows that even very healthy people can go through very difficult recoveries. While kidney donation is an amazing gift of life, it is still serious surgery. The good news is (spoiler alert!) I am now completely healthy and an athlete again… so let’s jump right in.
Before donating my kidney, I was a newly minted triathlete. I was also a competitive figure skater, but due to a knee injury I was trying to transition away from skating and into swimming and biking – plus power-walking where other triathletes run the third leg of a tri. The winter before my donation, I medaled twice in the Adult Figure Skating National Championships. Then the summer before my donation, I achieved my newest goal of becoming a triathlete. I completed two super-sprints and four sprint triathlons in a single summer.
I donated to a good friend of mine, Angie. I was so grateful that my strength and health could be shared with one of my friends – what an amazing opportunity! Today, happily, Angie is doing very well, enjoying and living her best life without any need for dialysis.
The initial surgery went very smoothly. I woke up feeling sore, but pretty good all things considered. My husband was there for me, my rock and my moral support, and everything seemed to be going great. My recovery progressed at a normal pace at first, and I went home three days post-surgery. I started walking right away. Just a little bit at first, but more each day. I had read all about the best ways to recover from surgery on a FaceBook group called the “Living Kidney Donor Support Group,” and I felt well-equipped to get back to my regular life rapidly.
One week post-donation I returned to the kidney clinic, concerned because I was much more swollen than I thought I should be. The surgeon examined me personally and said he didn’t see anything wrong. He encouraged me to sit less, and walk more.
Two weeks post-donation I returned for my official 2-week followup. By then I was even more swollen, not less. I looked seven months pregnant, and I kept telling everyone I saw that I was dreadfully uncomfortable and that my only complaint was how awfully swollen my belly was. They were puzzled, but they x-rayed my abdomen and didn’t see anything amiss. The surgeon told me to keep an eye on it, walk more, try probiotics, and call if it didn’t get better in a week.
I held out for another week like I was told, but by three weeks post-donation, it was clear that something was seriously wrong. I wasn’t just swollen, my entire abdomen was distended. Eating (and digesting) caused significant pain. Also, I was having trouble breathing – my swollen belly would put pressure on my lungs, causing me to be short of breath. When the surgeon saw me in the clinic, he admitted me to the hospital immediately. I returned to the transplant floor and said hello to some of the nurses I’d just said goodbye to a few weeks ago.
It turned out I wasn’t exactly swollen, instead it was fluid leaking into my belly. They drained 5.6 liters of fluid from my abdomen! Imagine trying to hold three two-liters against your stomach, and that’s what I was carrying around. I felt amazingly better once it was drained, but I wasn’t out of the woods yet.
Upon analyzing the fluid, I was diagnosed with a “chyle leak”, also called “chylous ascites”. Essentially it was lymphatic fluid leaking into the abdomen from a disruption caused during surgery. My surgeon had never seen such a complication from kidney donation in his twenty years of doing kidney transplants. He had to do the doctor equivalent of a google search (called a literature review) to figure out how to treat it. (Turns out it has only happened in about 0.1% of documented cases – so in 1,000 nephrectomies you might see it happen once.) They started with the least invasive approach possible – they had me switch to an ultra-low fat diet. The low-fat diet was to reduce the amount of fluid moving through my lymphatic system so that the leak could heal itself. I stayed in the hospital for a few days while they monitored me, and I didn’t bloat up again, so they let me go home.
My belly didn’t swell up again, but a week later I was back in the hospital, having trouble breathing and chest pain. Even worse than the week prior. It turns out that the same fluid was now building up in my chest cavity instead of my belly. There wasn’t any extra room in there (since ribs don’t flex), so it was crushing my lungs.
This began what turned out to be a 26-day hospitalization – almost the entire time between Thanksgiving and Christmas. The transplant staff tried everything they could to make me healthy again. They started with putting in a long-term drain (called a chest tube) into my back, to remove the fluid and relieve all the pressure on my lungs. They added some extra medications to slow down my lymphatic system. After the low-fat diet proved ineffective, they switched me to TPN, which is where you get all your nutrition from an IV. I wasn’t allowed to eat or drink anything for almost 3 weeks, other than ice chips.
I learned more about hospitals than I’ve ever wanted to! Even though I was so sick, I tried to stay as positive as possible. I became friends with all the nurses, and the cleaning lady, and the meal-delivery guy, even though he wasn’t allowed to bring me food. The transplant team’s living donor coordinator would come to visit every few days, and we would go for walks exploring the hospital. My husband came to visit almost every day after he got off work, as often as he could. My nurses decorated my room for Christmas. At one point the nurse manager felt so bad for me, she let my hubby sneak our dog in to visit me one delightful afternoon.
I had two lymphangiograms, both of which failed to fix the leak. Finally, I had a second major surgery in December, where they opened up all of my previous incisions and tried to repair the leak manually. This did not work entirely, but it did allow them to install two drains in my belly. The belly drains caught the fluid before it went to my chest, so they were FINALLY able to remove the chest drain. At this point, I was released from the hospital. You can take care of abdominal drains from home, unlike a chest tube that requires hospitalization. They also let me start eating again. That darn low-fat diet tasted amazing compared to ice chips!
I was so happy to celebrate Christmas from the comfort of my own home. The ordeal wasn’t over yet though… shortly after Christmas, I developed a blood clot (DVT) in my arm, a result of the PICC line (which was used for the TPN). The good news was that was at least a normal complication, and easy to treat.
As January progressed, my drainage slowly lessened. My leak was finally starting to seal. Halfway through January, they removed one drain. At the end of January, they let me try eating fatty foods again. I didn’t get any more leakage, so they finally removed that second drain, and I had my body back again! Minus a kidney, plus a bunch of extra scars – bruised but not defeated.
After that drain came out, I began the slow process of reclaiming my health. I had already returned to work in early January, after a total of ten weeks off work. I started walking more, and in March I started swimming again. At the end of March, I finished my last DVT treatment. In April, my husband took us to Disney World to celebrate getting healthy again, and I walked my first 1-kidney 5k with him while we were there. (It rained. Actually, it poured. We were awesome anyway.)
It took a long time to get strong, and an even longer time to stop being afraid of “what might happen next?” Much to my relief, the answer was “nothing”. Nothing bad happened. My body healed the missing kidney, healed the chyle leak, and even healed the blood clot. Over time, my health became something I could trust again.
By the end of the summer of 2019, somewhat to my surprise, I had achieved the goal I had set for myself pre-kidney donation: I completed two Olympic-distance aquabike races (that’s a triathlon minus the run). I also did a Warrior Dash, took a bicycling vacation in France, and I joined a new skating team! When I visited the transplant clinic in October 2019 for my one-year checkup, everything looked great.
Maybe my kidney donation story is a little scary, but it is also an honest one. Not all of us have perfect recoveries, even those of us who were very healthy and athletic going into the surgery. It’s important to ask your team beforehand what they’ll do about complications, and make sure they are fully covered. Today I’m grateful to my body and to my transplant team that I’m healthy again, even though it was a complicated road getting here.