Meet the Transplant Warriors

Every journey is epic, each one will move you. 
Believe in new beginnings. 
Understand the power of human kind. 
BE THE GOOD. 
DO LIFE.

Meet Rosie 

Name: Rosie

Parents: Samantha and Patrick

Family Members: Brothers Sam and Leo

Age at transplant: 4 months

Age now: Almost 3 years

Reason for Transplant: Biliary Atresia

Organ Received: Liver (split)

Type of Organ Donation: Deceased Donor

Transplant Hospital: Children’s Hospital of Pittsburgh

Pre-Care Hospital: Akron Children’s Hospital

Organ Donation in three words: Miraculous, Heroic, and Life-saving

URL: http://pcmanningandfamily.blogspot.com/

Email: pcmanning@gmail.com

Rosie's Story

“Organ donation is a wonderful, beautiful thing,” says Samantha Manning. And she would know since it was someone’s selfless decision to be an organ donor that saved her four month-old daughter Rosie’s life.

Although organ donation itself is wonderful, the process leading up to organ donation and transplantation is not easy. Samantha and her husband, Patrick, were terrified.

“We knew next to nothing about pediatric transplant and outcomes, and were concerned that our daughter may not survive or ever live a normal life,” Samantha says.

At just two months old, baby Rosie was diagnosed with Biliary Atresia (BA).

“We first realized something was wrong around the time of Rosie's 2-month checkup with her pediatrician,” Samantha says. “Her belly was a little swollen and her arms and legs looked thinner than they should have been.”

Thankfully, Rosie’s pediatrician noticed too and sent her for lab work. The labs came back showing she had an elevated bilirubin level. She was sent to the ER and from there, admitted to the main campus of Akron Children's.

“They suspected Biliary Atresia in the ER, and that diagnosis was essentially confirmed over the next few days as they ran tests at the hospital.”

Rosie was about 10 weeks old when she was diagnosed. At 11 weeks, she had her Kasai Procedure, which is a way to surgically bypass bile ducts and prevent liver damage. It is often the preferred treatment for biliary atresia and often buys more time before transplant is necessary. Unfortunately, her Kasai procedure ultimately failed and she was in need of a liver transplant.

In order to get on the liver transplant list, Rosie needed to go through pre-testing to determine if she met the qualifications necessary to get put on the list.

“We were worried about whether our daughter would qualify, or if we could be living donors,” Samantha says. “She was very small and undernourished and we weren’t sure she would be healthy enough for transplant.”

Rosie did qualify and officially was put on the transplant list. Her parents had mixed emotions.

“We were simultaneously hopeful and worried,” Samantha says. “Our daughter’s numbers, relatively speaking, were not that bad, so she initially had a lower PELD score. At the same time, she was really unhealthy and we weren’t sure how long she could wait for her liver.”

While they waited, both of Rosie’s parents were tested to see if they were able to be her living donor.

“We never thought twice about it,” Samantha says.

Patrick did not qualify to be Rosie’s donor but Samantha did. They started making arrangements for Samantha to donate a portion of her liver her daughter when they received a call about a deceased child who was a match for Rosie.

“We were completely surprised and overwhelmed,” says Rosie’s dad, Patrick. “This was great and unexpected news but at the same time, we knew that there were parents out there that had just lost a child and must have been hurting so much. We were so grateful that they had made the decision to donate their child's organs at what must have been an extremely difficult moment.”

From there things moved very quickly and before they knew it, Rosie was being prepped for surgery.

“We had very little time to process everything. We hardly slept at all that night.”

As a result of someone’s selfless gift to donate their child’s organs, miraculous doctors, and modern medicine, all went well with Rosie’s surgery and today she is a happy, healthy almost three year-old with a happy, healthy liver. She will be entering preschool next year.

“Our daughter is in amazing shape right now, she loves being with her brothers and you can find her going toe to toe with them - never missing a beat. Unless of course, she is busy with her favorite characters from Shimmer and Shine - or Trolls!” Samantha says. “She is very strong-willed and we really believe her fierce personality contributed to her success.”

“Rosie is a fiery, energetic little girl, bursting with personality and confidence,” Patrick adds. “In her mind, there's nothing she can't do.”

Go Rosie Go!  

 
 
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Meet Luke

Name: Luke

Parents: Jason and Lauren

Age at transplant: 8 months

Age now: 19 months

Reason for Transplant: Biliary Atresia

Organ Received: Liver

Type of Organ Donation: Deceased Donor

Transplant Hospital: Cincinnati Children’s Hospital Medical Center (CCHMC)

Pre-Care Hospital: Children’s Nationwide in Columbus and Cincinnati Children’s

Post-care Hospital: Cincinnati Children’s Hospital

Organ Donation in three words: Selfless, Powerful, Hero

Facebook Page: Luke’s Legendary Liver League

 

Luke's Story

Terrified. Devastated. How is this happening to us?

Those were the first thoughts to go through Jason and Lauren Morris’ minds when they found out their baby boy Luke would need a liver transplant after being diagnosed with Biliary Atresia.

Lauren’s mommy instincts were telling her something wasn’t right with baby Luke. At his two-month check-up appointment, Lauren asked the doctor about his yellow coloring.

“The doctor told us that it was probably breast milk jaundice and it should resolve itself within the next few weeks,” Lauren says. “Two weeks later, it wasn't getting any better and I called for a blood test because I had a bad feeling.”

Unfortunately, her gut feeling was right. Baby Luke was very sick and at just 10 weeks old, needed a new liver.

“How is this happening to such a perfect little boy? My little boy?,” Lauren thought.

The first attempt to help Luke’s little liver was a procedure known as Kasai. He was just 10 weeks old.

The Kasai Procedure is often done on infants who are diagnosed in very early stages of Biliary Atresia. It is a way to surgically bypass the bile ducts that are blocked and prevent liver damage.  Often it is a temporary solution to buy the child more time until transplant is required (in some cases it has lasted decades).  

The next month they already knew the procedure had failed.

“His ascites was continuing to increase, he was still very yellow, wasn't gaining weight, throwing up his meds constantly, and his labs weren't heading in the direction we wanted,” Lauren says. “Liver numbers were still ugly.”

The next step was to get Luke on the transplant list. And when he finally was, his parents felt both a sense of relief and disbelief.

“We were relieved that he was finally on it because it meant we were getting closer to saving his life, but we never in a million years thought we would ever have a child on a transplant list,” Lauren, says.

Lauren was tested to see if she was a match to donate part of her liver to save her son’s life. She was. But shortly after finding out, the decision about whether or not she would be her son’s donor was taken out of her hands.

“We found out not too long after that Luke’s portal vein was clotted and at that point the hospital said a deceased donor liver would be the absolute best option for him.”

So they waited. They waited to get the call that a liver had become available and their son’s life would be saved. And for Lauren, who likes a plan and needs to know what comes next, this was extremely challenging.

“Living the ‘what if’ and riding the emotional roller coaster was very hard,” Lauren says. “Waiting for the call is absolutely exhausting and overwhelming.”

While they waited, Luke’s health continued to decline. Making it even harder was Lauren’s desire to “fix” or sick baby.

“Seeing Luke get sicker and sicker and not being able to do anything about it was challenging,” Lauren says. “As the mom, it is your job to fix everything and I couldn’t.”

Luke got so sick that he was hospitalized, which is where his parents were when they got the call that a liver had become available. A successful liver transplant occurred and the focus was quickly on recovery.  

Lauren expected that after Luke’s transplant surgery, the worst was over. But unfortunately for them, this was not the case.

Luke spent the following two months post-transplant in the hospital and his parents were once again reminded of the many setbacks and hardships that come with the organ donation process.

“Luke had major complications after original surgery and ended up going back in for 2 more surgeries within a few weeks of the original transplant surgery.”

Finally after those exhausting and grueling weeks, they have learned there is a light at the end of the tunnel. And that light, is their thriving, full of energy 19 month-old little boy.

“Seeing the selfless gift another family gave us and watching my son get to live his happy, healthy life,” says Lauren. “Watching him become his own little person is absolutely the best!”

Luke loves to play outside and if you see him being brought in, chances are you will see him having a meltdown. Don’t worry, this can quickly be solved with any sort of potato treat or some Paw Patrol action. If you catch him on a down day you can probably find him snuggling with one of his parents (who are both teachers) reading some of his favorite books.

Luke and his family got their happy ending because of a noble gift another family gave their son.

“A ‘thank you’ will never be enough,” Lauren says. “There just aren’t words. The terrifying fear of losing your child is something they actually had to endure, not just come close to. And in their moment of loss, they decided to give another life a second chance. How amazing is that? They are and will forever be our hero.”

 

Meet Blake 

Name: Blake

Parents: Nick & Heather

Age at transplant: 14 Months

Age now: 2 years

Reason for Transplant: End Stage Renal Disease caused by being born with one kidney that was damaged with severe Hydronephrosis

Organ Received: Kidney

Type of Organ Donation: Living Donor

Transplant Hospital: BSSM Health Cardinal Glennon Childrens Hospital & SSM Saint Louis University Hospital

Organ Donation in Three Words:             Beautiful, Rebirth, Selfless

Facebook: Brave Blake’s Battle

Twitter: @braveblake

Blake's Story

Heather and Nick were excited parents-to-be who couldn’t wait to find out if their first child was a girl or a boy. They opted to have some early testing done to find out the baby’s gender.

The testing determined that they were having a baby boy but also revealed that their baby boy only had one kidney and the kidney was in bad shape due to severe hydronephrosis.

“We really didn't know the severity of everything at that point,” Heather says. “We were referred to other specialists for more advanced ultrasounds and testing.”

There was only so much information they could gather and Heather and Nick were told they would need to wait until their baby boy was born to know more.

Heather was monitored closely for the remainder of her pregnancy and eventually put on in-hospital bed rest for 15 days leading up to her baby boy’s birth.

Heather and Nick welcomed their baby boy Blake into the world on November 11, 2014.

Blake’s health started to deteriorate quickly after he was born. On his second day of life, he went into kidney failure and was taken by ambulance to Cardinal Glennon Children’s Hospital in St. Louis. Unfortunately, Heather needed to remain in the hospital and was not able to go with Blake.

“It was kind of an out-of-body experience,” Heather says. “It was very hard to be split up from my baby.”

It was determined that the one kidney Blake was born with was only functioning at 7-10% and he needed kidney dialysis and eventually, a transplant when he was big enough, to survive.

This meant Blake needed to have surgery immediately to place a peritoneal dialysis catheter. Luckily, Heather got an early release from the hospital and was able to get there to see Blake before he was taken back for his first surgery at just three-days-old.

“During his first year of life, Blake spent 135 days in the hospital, faced five surgeries and spent over a year on peritoneal dialysis anywhere from 13 to 24 hours every day,” Heather says.

In order to get added to the transplant list, Blake needed to be 24 pounds. For kids with kidney problems, this is typically when they are close to two years-old. But Blake isn’t a “typical” kid. He hit that weight at just seven months but his doctors wanted to wait until he was one year old so he could get his live vaccines, something children aren’t able to do after they’ve had a transplant.

Throughout Blake’s journey, Heather used a Facebook page she had created called “Brave Blake’s Battle” to keep family and friends informed. She wrote updates and shared pictures and videos showcasing the family’s daily struggles as they waited for Blake’s kidney to be found.

“I started the page after being in the hospital for many months on dialysis and I felt like I was repeating myself all of the time to family and friends,” Heather says.

Never did she imagine that the Facebook page she created would save her son’s life.

She posted a picture of Blake the day he had officially been added to the transplant list to keep family and friends informed. The picture was seen by many more people than family and friends. It was shared over 1,000 times and people from all over the world saw it.

It was through the power of social media that a complete stranger, Laurie from Missouri, saw the picture and messaged Heather.

“Laurie reached out to me the day after Blake went on the national donor registry,” Heather says. “She was so candid about her mom being a transplant recipient and her wanting to be tested and told me she was not a ‘crazy lady.’”

Laurie had prepared herself to donate her kidney to save her mom’s life but never got the chance when her mom died unexpectedly due to complications from End Stage Renal Disease, the same disease Blake had.

Laurie didn’t get a chance to save her mother. But she had a chance to save Blake and she was eager to do it.

After they talked a bit more, Heather realized Laurie was living in the same small town she grew up in and that they even had mutual friends.

“It just seemed like God connected our paths for a reason,” Heather says.

After months of testing, Laurie turned out to be a perfect match for Blake and the kidney transplant occurred on January 18, 2016. Laurie's surgery was three hours and Blakes was eight, removing his kidney first followed by the transplant.

Everything went perfectly and almost 15 months later, Blake is a happy, healthy two year-old who has not needed to go back to the hospital (except for tests and follow up appointments) since his transplant.

“Prior to transplant he was tube fed and immobile and now he is a walking, talking, eating, tube-free miracle,” Heather says.

Blake is full of life and loves people. His laughter is contagious. He has thousands of Facebook followers who continue to cheer him on and provide Heather and Nick with tremendous support and love.

But the most unexpected act of love in Blake’s journey was the gift of love from a total stranger in Missouri.

“Blake’s life forever changed when an incredible woman came into our life offering to give him a second chance at life,” Heather says. “There will never be enough ways to thank her for saving Blake.”

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Meet Sean 

Name: Sean 

Parents: Courtney & Steve

Siblings: Brother Ryan

Age at transplant: 20 Months

Age now: 7 years

Reason for Transplant: Citrullinemia

Organ Received: Liver

Type of Organ Donation: Deceased Donor

Transplant Hospital: Cincinnati Children's Hospital

Organ Donation in Three Words:             Incredible, Blessing, Gift

Facebook: facebook.com/CourtneyDolinar

Twitter/Instagram: @CourtneyDolinar

Courtney and Steve were still enjoying their new baby boy, Sean, when they received a phone call that one of his newborn screening tests came back irregular. He was just five days old.

“We didn’t notice anything out of the ordinary, Courtney says. “Except that he did sleep a lot.”

They immediately went into the Cleveland Clinic to meet with a doctor and get run additional tests.

“As soon as we did the blood work, they immediately admitted Sean to the NICU at the Cleveland Clinic,” Courtney says. “They eventually diagnosed him.”

Sean had Citrullinemia, a disorder that causes ammonia and other toxic substances to accumulate in the blood.

Courtney and Steve needed to decide how to treat Sean’s diagnosis. They were given two options: follow a rigorous (and lifelong) diet and medicine schedule, or undergo a liver transplant.

Even with the strict, low-protein diet and medicine every three hours of his life, there would always be a risk of something going wrong and causing permanent brain damage.

Receiving a liver transplant was Sean’s only chance to be cured of this disorder, but Courtney knew that it would come with its own set of struggles and worries. She was most scared of complications and that Sean’s body would reject his new liver.

She did a lot of research.

“I read every medical study, journal, visited every message board, visited three transplant centers in the area,” Courtney says. “I talked to numerous geneticists, transplant doctors, liver doctors, transplant coordinators.”

They decided to go the transplant route, as they felt it would offer Sean the best quality of life. Unfortunately, Courtney and Steve were advised against being living donors for their son.

“In our case, this is genetic, meaning my husband and I carry a recessive gene that cause the Citrullinemia,” Courtney says. “Because we have this gene, they advised against us being donors.”

Life leading up to the transplant was uneasy. They waited 7 months for the call that there was a match for their son’s liver.

Finally, it came.

“We got a call at 3 a.m. on May 27, 2011,” Courtney says. “It was a perfect match.”

Sean received his new liver and everything went well.  He spent two weeks in the hospital and about a month in a nearby hotel.

“It’s been great,” Courtney says. “In our case, everything has been textbook. Life after transplant is much better than our life before transplant.”

She attributes it to their great medical team.

“Our liver doctor, who has been with us every step of the way, Dr. Alexander Miethke, and MaryKay Duncan, our transplant coordinator, were always open and honest with us,” Courtney says. “They made a very difficult experience seem less difficult. Both are wonderful people. Sean is lucky to have them.”

Sean is now seven years-old with a great quality of life and not a day goes by that Courtney doesn’t think about the family who made it possible.

“While we are grateful for Sean’s outcome, the donor family has had a great loss,” Courtney says. “Sean’s new liver was a perfect match, meaning it came from a child the same age as him.”

The donor family’s difficult decision is not something Courtney has taken lightly.

“We are blessed that in a family’s tragedy, they did something as kind as organ donation. I thank God for this family and their decision every day.”

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Meet Brodie

Name: Brodie

Parents: Russ and Traci 

Family Members: Sister - Harper

Age at transplant: 5 Months and 5 Days

Age now: Almost 2 years

Reason for Transplant: Biliary Atresia

Organ Received: Liver 

Type of Organ Donation: Living Organ Donation

Transplant Hospital: Cleveland Clinic Children's 

Pre-Care Hospital: Cleveland Clinic Children's 

Organ Donation in three words: Amazing, Beautiful, Love

Facebook Page: www.facebook.com/brodiesgoodvibetribe

Instagram: brodiesgoodvibetribe 

Email: tracitigue@bgvt.org

Reflection:  Because of living organ donation we were able to get in front of any other complications - we forged ahead 4 weeks after diagnosis we did transplant.  Because of this assertive treatment we are positive that is why Brodie is doing brilliant.  After a brief 11 day stay he was sent home for recovery and has been nothing but a shining star.  Brodie LOVES his new liver.



 

Meet Humans Who are Heroes - AKA Organ Donors

Have you ever wanted to save a life?  Would you if you could?

You have the capability to allow someone to stay on this planet longer, be with their family longer, enjoy laughter and life by making a living decision to gift life forward.  

You can do this by becoming a LIVING Organ Donor or checking a box to become an Organ Donor.

Selfless acts of ORGAN DONATION enable someone living to have a second chance and DO LIFE.

These are the stories of heroes.  Understand the power of human kind. 

BE THE GOOD. 

DO LIFE.

 
 
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Meet: Mindy 

Donor Name: Mindy Stella

Recipient Name: Tom Arnold

Relationship to Recipient: Daughter

Age at transplant: 37

Age now: 38

Organ Donated: Liver

Hospital Received Transplant: Cleveland Clinic

Organ Donation in Three Words: Surreal, Life-Changing, Blessed

Contact Information: Mindy Stella (FB), mindy.stella@yahoo.com

Mindy Stella was at the appointment with her dad, Tom Arnold, when he received the news that he had Liver Cancer, Non-Alcoholic’s Cirrhosis and would need a liver transplant and unfortunately, time wasn’t on his side.

“The risk we ran was the longer we waited, the higher the likelihood  the cancer could spread, and he would no longer be a candidate for a transplant of any kind,” Mindy says.

For that reason, Tom was told a living donor would be his best option.

“I remember thinking in that moment, it would be me,” Mindy says. “I prayed I was a match.”

Her prayers were answered: She was.

“When it was confirmed I was a match, I had a sense of peace with it and knew the outcome was going to be in our favor,” Mindy says.

As a mother of two, it was a big decision to be her dad’s living donor. But she never second-guessed the decision.

“I was confident it was the right thing to do,” Mindy says. “He’s my Dad and without a liver, whether it was from me or someone else, he wouldn’t fare well.”

She had also watched her friend and sorority sister, Traci Tigue, co-founder of BGVT, go through the process the year prior which gave her even more confidence and hope throughout the process.

“It was almost a year to the day that Traci donated a portion of her liver to her son, Brodie, that I donated to my dad,” Mindy says. “I do not believe that was just by chance.”

Within a few weeks of finding out she was a match, it was time for the big dual transplant surgery where Mindy would donate 60% of her liver to her Father.

“I knew I was in the best possible hands I could be at the Cleveland Clinic. I was reassured every step of the way.”

The surgery was a success and Tom improved very quickly after receiving the transplant.

“It was amazing that in a few days, his color was coming back,” Mindy says. “He had a smile again. He was my Dad again!”

Being a living organ donor, paired with the transplant experience - has taught Mindy to fight through the hard times and look for the silver lining in all situations.

“No matter where your life takes you, tough times are going to come,” Mindy says. “No one is immune to that.  If you can open your eyes to the people that surround you, those that may come into your life, the circumstances you have at hand; you can find the silver lining, a lesson to be learned, and you’ll find you aren’t alone.”

The backwards L-shaped scar on her stomach is a constant reminder that life can change in an instant.

“Live with intent,” Mindy says. “Dream big. Do the things that make you and others around you happy. Stay strong and live with a big faith.”

Meet: Karen 

Donor Name: Karen Ciolek

Recipient Name: Mindy 

Relationship to Recipient: Friend

Age at transplant: 39

Age now: 40 years young ;)

Organ Donated: Liver

Hospital Received Transplant: Cleveland Clinic

Organ Donation in Three Words:                 BEST DECISION EVER!!!!!

Contact Information: Karen Wallace Ciolek (FB), karenciolek@hotmail.com, karenciolek (IG)

Karen's Story

Sadness was the most overwhelming emotion that Karen remembers about her good friend Mindy’s diagnosis.

“My friend was so sick and we were limited in our ability to help,” Karen says.

Or so she thought.

Mindy was diagnosed with Primary Sclerosing Cholangitis in 2012 and Cholangiocarcinoma (Bile Duct Cancer) in 2015. Due to the complexity of her diagnoses it was determined that Mindy’s treatment course would include chemotherapy, radiation, internal radiation, and a full liver and bile duct transplant.

Once a plan was in place, Karen was hopeful that her friend would get the treatment she needed. Unfortunately, this wasn’t the case. Her insurance company refused to cover treatment.

“She was actually told by the insurance company that because her survival rate was less than 5%, they wouldn’t cover her treatment,” Karen explains. “Hearing her share this news was heartbreaking.”

Thankfully Mindy’s husband Scott works for a fabulous company, The Garland Company, who went to bat on her behalf and covered treatment while Mindy and Scott fought the insurance company.

In the fall of 2015 when Mindy started this journey, the Cleveland Clinic had only treated five people with Cholangiocarcinoma who were continuing on with a Liver/Bile duct transplant following cancer treatment. Of those five, four died before making to to transplant.  The fifth patient is a young male attorney who lives in Israel and had successful cancer treatment and liver transplant.

“Mindy was on track to be the first American female in CCF history to beat cancer and be transplanted,” Karen says. “This was huge!”

Mindy was placed on the deceased donor transplant list in early November 2015 while still receiving cancer treatment. As time started to pass, it was determined that the best option for Mindy was to obtain a liver through Living Donation.

“Her health was declining much quicker than expected by all involved,” Karen says.

Originally Mindy’s medical team thought they’d have about one year before her liver failed following the cancer treatment. In reality, she was experiencing liver failure in less than three months. She was in and out of the hospital every few days with complications and unexpected surgical procedures.

Mindy’s husband Scott posted updates on a Caring Bridge blog site. Karen read them all. Including the post where he was pleading for liver donors.

“I followed the Caring Bridge site faithfully and read Scott’s post that Thursday morning,” Karen says. “I knew immediately that I wanted to volunteer.”

So she told her husband, Kevin, what she wanted to do. His response surprised her.

“His response was perfect,” Karen says. He told her, “I’m surprised it took you this long to say it, I knew you’d volunteer as soon as I read Scott’s post.”

Karen contacted the Cleveland Clinic transplant requesting to be considered for Living Donation. “Honestly, I had pretty much counted myself out as a donor for two reasons,” Karen says. “First, I’m adopted and I assumed that my lack of medical history would make me a terrible candidate. Second, I have asthma that requires steroid medication daily.”

She tried not to get her hopes up as a possible donor but also didn’t want to skip an opportunity to help her friend if she were able to.

“To my surprise, I received a call from Donna Ferchill, Donor Transplant Coordinator (and BGVT board member) while traveling to Chicago for Christmas,” Karen says.

Although more information would need to be collected, on paper she looked like a good candidate for Mandy. Donna contacted her a few days later to share that she was the clinic’s “top pick” as a hopeful transplant match for Mindy.

“I was speechless with excitement,” Karen says. “This meant that out of all candidates that volunteered, the medical team chose me to begin testing.”

Karen began the extensive testing process anonymously. She didn’t want to share with Mindy until she knew for sure she could be the donor.

On January 20, 2016, just two weeks after she started the testing, Karen and her husband were able to tell Mindy and her family that she was going to be her Living Donor.

“It’s impossible to put into words what it feels like to tell a person news of that magnitude,” Karen says. “It’s exciting, invigorating, frightening, humbling, and nerve-wracking to name a few emotions.”

Once the surgery was scheduled, the biggest obstacle was keeping Mindy healthy enough to receive the liver.

When word had spread about the upcoming surgery, the two families received an unimaginable outpouring of support from their families, friends, the community of Olmsted Falls, and more.

Karen’s family was nothing short of amazing throughout the process.

Her parents made plans to live with them for five weeks post-surgery to help take care of her family. Her sister made arrangements to leave her family in Chicago to stay Karen n the hospital for the week post op. Her in-laws and sister-in-law made themselves available to help wherever needed.

“My children were remarkable in stepping up their responsibilities around the house and showering me with love and care while I recovered,” Karen says.

She received visits from friends from near and far. The people of Olmsted Falls organized meals for both families, provided them with gift certificates for house cleaning, gift cards to various restaurants, and even shuttled their kids to and from activities without hesitation.

“We are forever grateful and indebted to their generosity,” Karen says.

When people compliment Karen on her decision to donate, it’s hard for her to remember to say “thank you.”

“In my mind, there was no decision to be made,” Karen says. “I was raised to believe that if an opportunity presents itself to help another person, you do it.”

Karen doesn’t consider her act heroic or even a gift.

“It was a choice that I wouldn’t change in a million years,” she says. “A small sacrifice on my part resulted in life for another person.”

Lucky for Karen, that person is her friend. She has the opportunity to watch her leave her footprint on the world daily.

“She is an amazing wife, mother, daughter, friend, teacher, and so much more,” Karen says. “We should all be so lucky to have a Mindy Craft in our lives.”

 

Meet: Michelle

Donor Name: Michelle Mari

Age at transplant: 33

Age now: 35

Organ Donated: Liver (partial)

Transplant Hospital: Hospital at the University of Pennsylvania/Children’s Hospital of Philadelphia

Relationship to Recipient: Aunt

 
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Michelle's Story

“From the moment I first held Madison after she was born, I felt a strong bond that I have never felt with any other baby,” Michelle Mari says.

It was that strong bond that led Michelle to want to save her niece’s life.

Madison, Michelle’s niece, was born in 2013 with a rare disease called Biliary Atresia, a life-threatening condition that causes the bile ducts to become inflamed and blocked soon after birth. The bile then stays in the liver where it starts to destroy it and eventually requires a liver transplant.  

When she was eight weeks-old, Madison had the Kasai procedure done in order to try and restore function to the liver. Unfortunately, this procedure did not work and Madison was placed on the transplant list.

“My mother told me pretty early on that Madison and I share the same blood type and that I could possibly donate to her,” Michelle says.

Michelle was advised that donating her liver would be the last resort and that they would likely get a deceased donor more quickly.

“Regardless of what we were told, I knew from that moment I was going to be the donor,” Michelle says. “Just a gut feeling.”

A deceased donor didn't come along as quickly as the transplant team had thought and Madison's health was quickly fading.

“It was truly heartbreaking to watch a sweet, adorable, and mostly happy baby suffer so badly,” Michelle says.

As Madison got closer to her first birthday, her health continued to get worse.

“She was terribly malnourished, weighing only 10 pounds, had a very noticeably swollen belly from the ascites as well as extremely yellow skin and eyes,” Michelle says.

Michelle started the testing process in the middle of July 2014. The testing process took about four weeks but in the end, she was cleared to donate.

“I have to say, I questioned a lot of things during this time,” Michelle says. “Why was this happening to an innocent baby? Could this have been prevented?”

The surgery was set for 9/10 but had to be pushed back due to Madison needing some additional vaccinations that could not be given right before the surgery.   

On October 1, 2014, the transplant team removed 25% of Michelle’s liver and placed it in Madison.  

“They said my liver was so tiny and perfect for Madison's little body that they immediately started seeing positive results!”

After surgery, Michelle was in a fog for about four days then snapped out of it on the fifth day. She was released on that fifth day.

“After I was released my mom would drive me down to visit Maddy,” Michelle says. “I remember feeling scared that the transplant didn't work because Madison still seemed ill.”

The doctors assured her that everything was going very well and that Madison would gain health soon.

“About a week after I was released we went in for our visit,” Michelle says. “I was holding Madison when suddenly she reached her little hand up, grabbed my face, looked at me and just had this huge smile! I knew right then and there that she was going to be ok. That will always be one of the happiest moments of my life.”

Michelle’s mom was there to capture the special moment.

Although the past few years have had ups and downs for both Madison, who was diagnosed with Post-transplant lymphoproliferative disorder (PTLD), and Michelle, who had hernias after her surgery, they are both doing well.

Madison is a lively three year-old who continues to be strong and brave.

“I feel so blessed that I am able to play a role in her overcoming this dreadful disease,” Michelle says. “I cannot begin to explain how rewarding it has been to watch her grow, walk, eat without a feeding tube, and just be a happy baby. She has such a big presence wherever she is with a huge infectious smile, adorable laugh, and a goofiness that can brighten anyone's day.

Michelle says the experience has changed her life for the better, too.

“I would do it again in a heartbeat,” Michelle says. “The surgery is not as bad as described.”

She wears the scar proudly like a badge of honor. And it is.

“The first summer in a bikini, I was a little self conscious of my scar but now I rock that scar,” Michelle says.


“I saved a life and that shows it.”

 

 

 

 

 

 

Donor - Traci Tigue

Organ: Liver

Recipient: Son

Transplant Day:  10/19/2015 - NEW LIVER BIRTHDAY! 

Reflection:  My heart was so torn on whether to be my son's donor, I was so confused.  I didn't want to leave my 3 year old daughter and husband in distress.  Who would care for my baby? My family?  It was logic vs. emotion.  When I heard the words.  You. Are. A. Match.  My emotion won.  So did my husband Russ'.  There was no question.  We were going to do what it took to save our son.  Now a year later in hindsight, I wish I could go back and let logic and reason know it was the right choice.  If you have a chance.  Gift life. Give Life  It is AMAZING. 

 

 

Medical Heroes

Heroes are people who transform compassion into heroic action. In doing so, they put their best selves forward in service to humanity. 

I think there are everyday people  in our lives - we know that they are heroes for what they have done, what they currently do, what they are aspiring to be. 

They walk amongst us every day. They are everywhere.

You have to stop and really pay attention to what is going on around you - because sometimes these heroes are so unnoticeable, so under the radar, so undetected that if you do not realize in real time how they are impacting you - you may never have the chance to tell them how amazing they are. Or help them understand why they are so important.  Or just smile at them. Or just say - thank you. 

During our journey we have been overwhelmed by the amount of people it has taken to get our warrior Brodie to be on his path to the good healthy life and every single family who goes through this journey has the same heroes in their life.  

All of these people are our heroes and they selflessy give and dedicate themselves to medicine.  Our Medical heroes and yours will always be part of Brodie's Good Vibe Tribe and for them and their talents we will be forever grateful. 

 
 
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Dr. Koji Hashimoto

Name:  Koji Hashimoto

Title: M.D., Ph.D., Associate Professor of Surgery, CCLCM Cowan Family Endowed Chair in Living Donor Liver Transplant

Education:  Kyushu University School of Medicine in 1995 (MD), Kyushu University Graduate School of Medical Sciences in 2001 (PhD)

Hospital: Cleveland Clinic 

Department: Liver Transplant, General Surgery, Digestive Disease & Surgery Institute

Fun Fact: Voted one Cleveland Magazines Most Interesting People

Dr. Hashimoto's Story

Every doctor has their “why.” The “reason” that led them to become a doctor and the “thing” that gets them through the long hours and hard work.

For Dr. Koji Hashimoto, his “why” is simple - a patient’s smile.

“This fuels me every day and makes me feel strong to go for next surgery,” Hashimoto says. (A typical transplant surgery is 8-12 hours).

He also says he was “born to be a doctor.” He made that decision at a very young age when he became fascinated with a book about the human body. The decision about what kind of doctor he would become, though, didn’t come until later.

“When I was a freshman in my medical school, I read a book about the first living donor liver transplant in Japan,” Hashimoto says. “This was the most important book I have ever read, which struck me to change my life. That was the moment I decided to be a transplant surgeon.”

The medical field, specifically the Cleveland Clinic where he works, is a better place as a result of his decision. Hashimoto has spent the last decade researching how to split a donor liver in order to saves two lives from one liver.

“Transplant is very mysterious,” Hashimoto says. “As soon as a new liver gets blood supply back in a recipient, donor immune cells residing in the new liver migrate into the recipient blood circulation and stay in the entire body forever.  Since the beginning of my career, this phenomenon has been attracting me and this is why I am doing both clinical practice and research.”

The life of a surgeon includes days that are long and gruelling - he doesn’t have a lot of free time. Hashimoto is also a husband and father of two so when he has free time he enjoys being with his family and, occasionally, he enjoys watching movies and the Cleveland Cavaliers. “But I usually fall asleep,” he says.

“Transplant is a lifetime commitment,” Hashimoto says. “Choose the right team and right doctors who make you feel confident in your complex transplant care. Come to Cleveland Clinic!”

Cathleen M. Tichy-Dreher

Title: CNNP-Certified Neonatal Nurse Practitioner, CPNP-Certified Pediatric Nurse Practitioner

Hospital: Cleveland Clinic 

Department: Pediatric Liver/Intestine Transplant

Fun Fact: Loves animals and would like to volunteer at a pet rescue

 

Tichy's Story

When a parent hears the words, “your child is going to need a transplant to survive,” their world comes to a screeching halt and the walls start to close in around them.  

Parents are left with questions about what comes next and what needs to be done to save their child.

Having a kind, compassionate medical professional by their side to guide them through the process, answer their questions, and offer support, is a critical part of the journey.

That is the role Cathleen M Tichy-Dreher, or “Tichy” as she is called, serves for patients and families at the Cleveland Clinic.

A wife and mother of four, Tichy knows the depth of a parent’s love for their children and uses this to offer compassion to families while she coordinates their care during this difficult time.

“I function in collaboration with the transplant surgeons on pediatric patients involved with both liver and small bowel transplant,” Tichy says. “I treat the child and parents the way I would want my family treated navigating a complicated medical situation.”

When a child is referred by a gastroenterologist, they first meet with a surgeon and Tichy for the evaluation process. This process includes a series of evaluations and tests to determine if transplantation is the best option for the child.

“If it is determined the child will be transplanted, my role is to be an extension of the eyes, ears, and hands of all the team members involved in the transplant,” Tichy says “I have always enjoyed working with surgeons and found this is one of the most compassionate groups I’ve ever worked with. Our surgical transplant team works as a family to care for the child.”

As a child and their family prepare for the transplant, there is frequent communication with Tichy. She provides updates throughout the transplant and keeps in contact during the critical time after the surgery.

“When your child is in my care, I am only a text message away from your next question or concern,” Tichy says.

And she means it.

It is a unique situation to meet a child when they are at their weakest and then watch them come to life after their transplant. This is what drives Tichy in her role.

“My ‘why’ is the satisfaction I get from meeting a child in the worst time of their illness, caring for them as they are transplanted with a new organ. and witnessing them restart their new life,” Tichy says. “I see parents who are crying, their eyes asking me to help their child, evolve to watching videos emailed to us of that child playing and laughing in their own backyard again.”

Recently she came across a gentleman who she cared for when he was a premature baby in the Neonatal Unit. Now, decades later he was thriving as an adult and a recent newlywed.  

Medicine paired with extraordinary care allows those “full circle” types of life stories to happen. Tichy’s commitment to her patients’ care is every parent's best-case in their worst-case-scenario. Children are better when they are in her care and the Cleveland Clinic is world class because they have caretakers like her.

 
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Dr. Kadakkal Radhakrishnan 

Name: Kadakkal Radhakrishnan, MD

Title: Pediatric Hepatologist

Education: Leicester General Hospital, London (Medical School), University of Kerala, Kerala (Medical School), Government Arts College Trivandrum, India (undergraduate)

Hospital: Cleveland Clinic Children’s

Department: Pediatric Gastroenterology

Dr. Radhakrishnan's Story

Dr. Kadakkal Radhakrishnan works a lot. But when he isn’t working, he loves to read.

“Nerdy stuff about medicine, history, science, etc.,” he says.

His favorite food is Sushi and he is an avid runner, frequently running in half marathons. He has completed 23 races. But his most proud accomplishments haven’t taken place in races or ended with medals but rather in the operating room.  

He is a Pediatric Hepatologist, a doctor who specializes in liver disease in children, at the Cleveland Clinic.

“I manage the care of children who are getting ready for liver transplant and manage their medical needs post-transplant with the Pediatric Liver Transplant surgeons,” Radhakrishnan says.

He entered the field of organ transplantation because, in his words, “he loves the liver!” But his reason for doing what he does goes much deeper than that.

“It is very gratifying to see children do well after transplant,” Radhakrishnan says. “I feel humbled that we can offer an option to improve the life a child. In my case, a liver transplant!”

One memory that stands out from his career happened 10 years ago when a boy came to him with liver failure.

“He deteriorated quickly and his uncle was found to be a suitable living donor,” Radhakrishnan says. “Our surgeons were able to transplant him three days after he came to us and he has done well since then.”

Radhakrishnan still follows that young man’s story, an example of how deeply he cares about his patients.

“He is active and doing well in school.”

Radhakrishnan has seen the highs and lows that come from the transplant process but he knows that in the end, it is worth it. He encourages anyone going through it to stay strong.

“The build up to the transplant can be frustrating,” he says. “The process during and after transplant can be exhausting! But it gets better as the days go by.”

If you are ever looking for Dr. Radhakrishnan, you can probably find him either running outside or running along side his patients, celebrating the highs and helping them maneuver through the lows. He is there for the long haul - 5, 10, 15 years later, he is still with his patients making sure they are okay and loving their liver.

 

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