Trying to encapsulate the story of my family’s journey with PSC and living donation on one blog page is like trying to describe every wave in an ocean. The following is just a piece of it, written from my perspective 30 months after the surgery. For another perspective, see the archives of my original blog (especially November 2005 through July 2006), where I wrote day by day on my experience as it was happening. – Becky
This is not at all my story — it’s our story — my whole family’s. It begins with an ache in my younger brother’s Joe’s abdomen sometime in the early 1990s. From there it proceeds through more than a decade of increasing and worsening symptoms, invasive tests, misdiagnoses and ineffective treatments, and frustration — I’ll spare you those details — to bring us to the end of the beginning, his diagnosis of Primary Sclerosing Cholangitis, or PSC, in the early 2000s. It moves then through his coexistence with that rare disease for a few years as it started to weaken his biliary ducts, wear down his resistence, turn his skin yellow, make him thinner and more tired and less able to sleep, until he became finally unable to work. And then it halts just long enough for a phone call on a lousy and overwhelming day in August 2005, when I called my parents at their home, where Joe was staying on medical disability leave.
He was waiting — had been waiting — on the long national transplant waiting list for a cadaveric liver donation, meaning, a donation from someone who donated after death. He was waiting with more than 15,000 other critically ill and anxious people who needed a liver. They were all waiting to get a call that only about a third of them would ever receive because of a shortage of donor organs. His disease, with all its cruetly, had the additionally terrible characteristic of allowing his MELD scores to stay relatively low, reducing his chance that he’d ever be high enough on the list to get a liver. Our bright, funny, loving, and accomplished Joe, the tenacious young man who had achieved a master’s degree and his medical degree and fought through his first year of residency until forced home by his illness, was suffering and dying in front of us, and there was so little we could do.
But I had learned, and I confirmed with Joe on that phone call, that there was something monumental that I could do. I could donate a portion of my liver. I knew in my heart that it should be me. My whole family is tight and loving and all of us would consider donating, but my parents were in their mid 50s while I was only 30, and our only other sibling, David, had a heart condition and a wife and two young children, while I had a clean bill of health and was single. I was financially stable and my employer was prepared to support me with time off and benefits. Above all, I wanted it. In my gut, in every cell, with urgency and passion.
Then began the next chapter, that nerve-wracking and mettle-testing one called “Waiting.” I had to clear the decision with my family. Our parents had to come to terms with risking the health and safety of their daughter to save their son. Joe had to make the same decision about his sister, weighing his likelihood of getting a cadaver donor organ in time against his feelings of guilt and fear for my well-being. And the doctors? They had quite a bit of deciding to do as well. Was I fit and healthy enough? Was I match, and did my antigens line up well enough? Was I psychologically prepared? Was I sufficiently altruistic in my motives? Was that gray fleck on my MRI scans a fatty liver parcel that would eliminate me from consideration, or just a blur in the image? It all took time. Six months of time, of itching and pain and anxiety and waiting.
On January 18, 2006, the waiting ended. Doctors Alan Koffron and Michael Abecassis wheeled Joe and me into side-by-side rooms 33 and 34 of the Kovler Organ Transplantation Center at Northwestern Memorial Hospital in Chicago early in the morning. Koffron inserted a scope through my belly button to cut out the larger of my two liver lobes laparascopically — the first time that had ever been done on a living liver donor in the world — and then made a four-inch straight-line incision down my chest, which was left open just long enough for them to reach in and remove Joe’s piece. Meanwhile, Abecassis had removed Joe’s angry and embattled organ, and began stitching my healthy tissue into its place.
My recovery was a blur, and in hindsight it went remarkably swiftly. The first four days were far worse than my imagination had anticipated — more painful, more awkward, more rife with side effects like bloating and malaise and nausea, more anxiety. But everything after that was much, much easier than I had guessed it would be. Once I started healing, I healed quickly. (A great Mom and Dad, a Pilates-strong set of abs, and a restful three months of medical leave all contributed to that, no doubt.) I had an MRI done about nine weeks after surgery showing that my liver had almost fully regrown to its original size. By one month out I was going on long walks, having dinner out with friends, and getting in some light exercise. By two months out I was capable of returning to work without much limitation except the occasional energy drain and some lingering soreness. After that, I was golden. Today, just the thin four-inch scar remains as bodily proof that any of it even happened.
Joe’s recovery was not so smooth, not by any means. Although he didn’t reject the organ, he had several battles with stenosis, strictures, infections, and other demons major and minor. It was nearly a year before he could return to work. Once he did, it was an ongoing fight to maintain his energy level and stay healthy, especially because he was working as a first-year medical resident. Over time, though, the strictures and other issues faded away, and he resumed a fairly normal life. Within months of returning to work, he decided to make a dramatic life change. He left his residency in Chicago to take a job as a transplant procurement coordinator in the Pacific Northwest, a job that calls on both his medical knowledge and his personal experience as a transplant recipient.
On the two-year anniversary of our transplant in 2008, Joe had a minor episode of rejection for the first time. We were all terrified. (I’m still not quite over it, and I got an uncomfortable surge of adrenaline and tinge in my stomach as I typed that last sentence.) But he made it through and is feeling healthy again. We will likely have ongoing health scares. We are lucky to have the privilege to have them. We are lucky for every day and every moment. We are blessed to have our Joe.
My original blog offers more detail, and I am happy to try to answer any questions that people might have about our experience – just comment or email me. The Greatest Gift Foundation’s mission is to improve the knowledge and support that living donors and their loved ones receive throughout their journey — and a central part of that mission is the sharing of our stories with each other.
Thank you for reading!