IN HER WORDS:
Trying to encapsulate the story of my family’s journey with PSC and living donation in one short story 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 and updated two years later.
This is not at all my story — it’s our story — my whole family’s. It begins with an ache in my younger brother Joe’s abdomen in the early 1990s. From there it proceeds through a decade of worsening symptoms, invasive tests, misdiagnoses, 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. The story moves then through Joe’s coexistence with that rare disease for a few years as it weakened his biliary ducts, wore down his resistance, yellowed his skin, emaciated him, made sleep impossible, and finally robbed him of being able to work. And then the story halts just long enough for a phone call with my parents on a lousy and overwhelming day in August 2005.
Joe was waiting — had been waiting — on the long national transplant waiting list for a cadaveric liver donation. He was waiting with more than 15,000 other critically ill and anxious people who needed a liver, and only about a third of them would ever get the call, due to a shortage of donor organs. His disease, with all its cruelty, 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.
On that phone call that day, I confirmed with Joe 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. 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? Everyone but me had questions. It all took time. Six months of time, of itching and pain and anxiety and waiting.
On January 18, 2006, the waiting ended. Surgeons Alan Koffron and Michael Abecassis wheeled Joe and me into side-by-side rooms at Northwestern Memorial Hospital early in the morning. Koffron inserted a scope through my belly button to cut out the larger of my two liver lobes laparoscopically — 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. The emotional joy has never left me.
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 called 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. By 2010, he needed a second transplant, this time receiving it from a high-risk cadaver donor, an ex-convict. He made it through and is feeling healthy again. As his health returned, so did his ambitions to become a doctor. He completed medical school and his residency, and as of 2015 he’s now a practicing radiation oncologist in Kansas City. He works frequently with patients who have terminal diagnoses, and his peers and patients tell him he is wonderful with the toughest conversations about death and illness. Is it any wonder?
We will have ongoing health scares. We will experience sadness and stress and pain and joy together. All of this, every moment, is a privilege. We are lucky for every day, every moment, every emotion. We are blessed to have our Joe.
***NOTE FROM KIM***
Becky, thank you ever-so-much for sharing your family's story!! I met Becky and her family at the 2008 Transplant Games in Pittsburgh and we've since kept in touch over the years!! I hope to see the Wallers at another transplant Games in the future!
Trying to encapsulate the story of my family’s journey with PSC and living donation in one short story 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 and updated two years later.
 |
| L-R: liver recipient, Joe and his sister, Becky, living liver donor! |
This is not at all my story — it’s our story — my whole family’s. It begins with an ache in my younger brother Joe’s abdomen in the early 1990s. From there it proceeds through a decade of worsening symptoms, invasive tests, misdiagnoses, 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. The story moves then through Joe’s coexistence with that rare disease for a few years as it weakened his biliary ducts, wore down his resistance, yellowed his skin, emaciated him, made sleep impossible, and finally robbed him of being able to work. And then the story halts just long enough for a phone call with my parents on a lousy and overwhelming day in August 2005.
Joe was waiting — had been waiting — on the long national transplant waiting list for a cadaveric liver donation. He was waiting with more than 15,000 other critically ill and anxious people who needed a liver, and only about a third of them would ever get the call, due to a shortage of donor organs. His disease, with all its cruelty, 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.
On that phone call that day, I confirmed with Joe 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. 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? Everyone but me had questions. It all took time. Six months of time, of itching and pain and anxiety and waiting.
On January 18, 2006, the waiting ended. Surgeons Alan Koffron and Michael Abecassis wheeled Joe and me into side-by-side rooms at Northwestern Memorial Hospital early in the morning. Koffron inserted a scope through my belly button to cut out the larger of my two liver lobes laparoscopically — 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.
 |
| Before removing part of Becky's liver |
 |
| After removing part of Becky's liver! |
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. The emotional joy has never left me.
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 called 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. By 2010, he needed a second transplant, this time receiving it from a high-risk cadaver donor, an ex-convict. He made it through and is feeling healthy again. As his health returned, so did his ambitions to become a doctor. He completed medical school and his residency, and as of 2015 he’s now a practicing radiation oncologist in Kansas City. He works frequently with patients who have terminal diagnoses, and his peers and patients tell him he is wonderful with the toughest conversations about death and illness. Is it any wonder?
We will have ongoing health scares. We will experience sadness and stress and pain and joy together. All of this, every moment, is a privilege. We are lucky for every day, every moment, every emotion. We are blessed to have our Joe.
***NOTE FROM KIM***
Becky, thank you ever-so-much for sharing your family's story!! I met Becky and her family at the 2008 Transplant Games in Pittsburgh and we've since kept in touch over the years!! I hope to see the Wallers at another transplant Games in the future!
 |
| At the 2010 U.S. Transplant Games in Madison, Wisconsin and yes, she's as adorable in person as she is in pictures. She's happily married with a six-month-old baby boy!! |
No comments:
Post a Comment