21 Things People Don't Tell You About Transplant Surgery
I respectfully disagree with #8 but everything else is true. 😊
I respectfully disagree with #8 but everything else is true. 😊
Tuesday, September 1, 2015
Sunday, August 2, 2015
Organ Donor--Carrie Boswell
Yeah, I Know I took a brief break. I was out of town last weekend and only just got a story submission.
Instead of pictures, I have an actual video clip!!
Organ Donor Saves Three Lives
After her untimely death, Carrie Boswell saved three lives through organ donation. I've gotten to know Dave via social media and he's the sweetest, friendliest guy around and I'm so glad I've had the opportunity to "meet" this donor dad!!
***Story and video link used with permission via Carrie's father, Dave Boswell***
**note to recipient Debbie Thompson: If you would like, I would be more than happy to showcase your side of the transplant story as well. What led you to needing transplant, knowing your donor family, etc.**
Instead of pictures, I have an actual video clip!!
Organ Donor Saves Three Lives
After her untimely death, Carrie Boswell saved three lives through organ donation. I've gotten to know Dave via social media and he's the sweetest, friendliest guy around and I'm so glad I've had the opportunity to "meet" this donor dad!!
***Story and video link used with permission via Carrie's father, Dave Boswell***
**note to recipient Debbie Thompson: If you would like, I would be more than happy to showcase your side of the transplant story as well. What led you to needing transplant, knowing your donor family, etc.**
Friday, July 17, 2015
Organ Donor--Jonathan Paul Kuzminski
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| Organ donor and hero! |
Jonathon Paul Kuzminski was born to Paul and Crystal Kuzminski in September of 2009. Jonathan was also the grandson of Barbara Pedone Kuzminski. On May 10, 2011, at the age of 20 months, he suffered a traumatic brain injury and passed away three days later.Throughout that difficult week in 2011, the New Jersey Sharing Network was a rock for the Kuzmenskis. Here is their website if you would like more information: NJ Sharing Network
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| A rose dedicated to Jonathon's memory at the Tournament of Roses Parade, Donate Life Float |
His parents were brave enough to say YES to organ donation and their son's kidney saved a 16 year old girl from dialysis and his liver went to then-two-year-old Wyatt.
Since then, Wyatt and his family have met the Kumzmenskis after reached out to them, wanting to thank them for what young Jonathon did for their son. Four years later, Wyatt is still in remission and still healthy thanks to Jonathon.
****PHOTOS AND STORY USED WITH PERMISSION***
Friday, July 10, 2015
In Sickness and In Health: Part Tres
A few years ago, I wrote two blog posts regarding relationships (first one is here: In Sickness and In Health). One of the reasons I took some lengthy breaks? Guess who was in a relationship? Yup, ME and it was awesome while it lasted but please notice the key phrase: while it lasted.
Unfortunately, I was dumped in March of last year and in a shitty way (long story short: bastard dumped me by unfriending me on Facebook less than a week after I'd gotten home from having gallbladder surgery and...oh yeah, a sudden move!). On top of that, I found out a few months ago that my ex-boyfriend was also....drum roll please.....MARRIED TOO!! UGH!! At 34 years old, he wasn't man-enough to tell me the truth!!
So.....I'm back at square one, at 35 years old. It. Is. SO. HARD!
Not only am I a transplant recipient with quite a bit of medical baggage, I'm also your classic introvert. In the past, whenever I would attend a social gathering, I would be coiled tighter than a snake and, unfortunately, people would mistaken my shyness (or, feeling uncomfortable) as snottiness. Thankfully, the transplant games have helped me loosen up A TON; so much so, that my transplant friends have a hard time believing that out-going Kim is really super awkward on her home turf.
I've tried dating websites (oh, where do I begin?) and have gone on the occasional date with said guy but as soon as he finds out about my transplant (either via Google or my own big mouth) he automatically assumes I'm untouchable, freezes and doesn't speak to me again. It really sucks that ,the guys I've come across, can't seem to see past that.
I just want a caring, sweet, attractive (in my eyes), funny, smart (but not so smart that he makes me feel like a dope), family-oriented man.....who is brave enough to take me on and doesn't freak out over my scars--the physical and otherwise.
Unfortunately, I was dumped in March of last year and in a shitty way (long story short: bastard dumped me by unfriending me on Facebook less than a week after I'd gotten home from having gallbladder surgery and...oh yeah, a sudden move!). On top of that, I found out a few months ago that my ex-boyfriend was also....drum roll please.....MARRIED TOO!! UGH!! At 34 years old, he wasn't man-enough to tell me the truth!!
So.....I'm back at square one, at 35 years old. It. Is. SO. HARD!
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| Still looking for Mr. Right |
Not only am I a transplant recipient with quite a bit of medical baggage, I'm also your classic introvert. In the past, whenever I would attend a social gathering, I would be coiled tighter than a snake and, unfortunately, people would mistaken my shyness (or, feeling uncomfortable) as snottiness. Thankfully, the transplant games have helped me loosen up A TON; so much so, that my transplant friends have a hard time believing that out-going Kim is really super awkward on her home turf.
I've tried dating websites (oh, where do I begin?) and have gone on the occasional date with said guy but as soon as he finds out about my transplant (either via Google or my own big mouth) he automatically assumes I'm untouchable, freezes and doesn't speak to me again. It really sucks that ,the guys I've come across, can't seem to see past that.
I just want a caring, sweet, attractive (in my eyes), funny, smart (but not so smart that he makes me feel like a dope), family-oriented man.....who is brave enough to take me on and doesn't freak out over my scars--the physical and otherwise.
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| Are you brave enough to help me unpack my baggage? |
Living Liver Donor--Becky Waller Bausman
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 |
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| 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!
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| 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!! |
Sunday, July 5, 2015
Life & Death--Part 2
As I mentioned in a previous blog (Transplant Games--Part 1) I met Anabel (Ana) Stenzel at the 2002 Transplant Games and we quickly became friends. Two years later, I learned (the hard way) that Ana had an identical twin sister named Isabel (Isa) Stenzel Byrnes. Since then, I've gotten to know the girls and learned that they both have Cystic Fibrosis, both received double lung transplants (in fact, Ana got re-transplanted in July of 2007) and both of their parents are from foreign countries (their mom is from Japan and their father's native country is Germany).
They also wrote a book called The Power of Two: A Twin Triumph over Cystic Fibrosis--a great read, in my opinion, that chronicles the girls lives and what lead to transplant. Lastly, Ana and Isa starred in a documentary film of the same name (The Power of Two Movie) explaining their lives with CF and transplant and also showcasing the transplant system in their mother's native country, which is drastically different from ours. These women helped change the transplant law in Japan!
Ana was always an amazing athlete at the games, both in the swimming pool and on the field. She won numerous awards at various games and via the CF community. Sadly, in 2011, she was diagnosed with CF-related small bowel cancer and, like always, fought very very hard but, unfortunately, less than a year before the 2014 Transplant Games, the transplant and cystic fibrosis communities lost an amazing woman who didn't let her CF, transplants OR cancer slow her down. She passed away on September 22, 2013 at the age of 41.
Though each of my friends' deaths scare me, they also motivate me. After my donor and donor family, THEY are the reason why I keep pushing, keep me moving; they remind me that while they're no longer here, I sure as heck am and will continue spreading organ donation awareness as long as there's breath in my body.
They also wrote a book called The Power of Two: A Twin Triumph over Cystic Fibrosis--a great read, in my opinion, that chronicles the girls lives and what lead to transplant. Lastly, Ana and Isa starred in a documentary film of the same name (The Power of Two Movie) explaining their lives with CF and transplant and also showcasing the transplant system in their mother's native country, which is drastically different from ours. These women helped change the transplant law in Japan!
Ana was always an amazing athlete at the games, both in the swimming pool and on the field. She won numerous awards at various games and via the CF community. Sadly, in 2011, she was diagnosed with CF-related small bowel cancer and, like always, fought very very hard but, unfortunately, less than a year before the 2014 Transplant Games, the transplant and cystic fibrosis communities lost an amazing woman who didn't let her CF, transplants OR cancer slow her down. She passed away on September 22, 2013 at the age of 41.
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| L-R: Isa, Ana and me at the 2008 U.S. Transplant Games in Pittsburgh, PA. Ana was nearly 1 year post re-transplant!! |
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| L-R: Ana and Isa at the 2012 Transplant Games of America in Grand Rapids, MI! They ended their speech with, "Live as if your donor is watching." by fellow lung recipient, Dottie Lessard! |
At the 2010 Games, in Madison, Wisconsin, I was at the pre-opening ceremony dinner social. I was walking around, reuniting with old friends and making new ones. I was minding my own business when, out of nowhere, someone came at me with the biggest hug and, though in my life for a short time, would make quite an impact. Someone named Stephanie Wetzel from Team Illinois.
Stephanie received a life-saving kidney transplant via her brother in 2000 but, by the time I met her, she was now on dialysis waiting for her second kidney. We were at the same hotel and, during the next few days, I learned why one of my closest transplant friends (Jennifer Klouse) considered Stephanie to be one of her closest transplant friends. Stephanie was sweet, funny, caring, upbeat, positive....just an all-around awesome person!
Towards the end of the games, we exchanged numbers and addresses. A few weeks after Madison, I went to my very first nephrologist appointment (thanks to being on so many drugs for so many years, my kidneys had started to go kaput on me) and I was nervous so, being the sweetheart that she was, Stephanie sent me a card with hand-written words of encouragement. That was so thoughtful and meant the world to me!
On December 31, 2010, she received "The Call" and underwent her second kidney transplant on January 1, 2011 (yes, 1/1/11). Unfortunately, there were complications from the start and though she fought tooth and nail (like all of us within the transplant community) I received a phone call in the middle of the night, right around midnight of April 21, 2013, of a crying Jen telling me that our beloved Stephanie had passed away an hour before, passing away on April 20th at the age of 40.
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| July, 2010: meeting Stephanie for the first time yet acting as if we'd been best buds for YEARS!! |
Saturday, July 4, 2015
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