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A COTA Family is Grateful for Their Daughter’s Cutting-Edge Islet Cell Transplant

November is American Diabetes Month: 

 

November 2, 2020 -- As the chill of November sets in many thoughts turn to holiday planning, Thanksgiving preparations and gratitude. November is also recognized as American Diabetes Month with World Diabetes Day being celebrated each year on November 14th. A Georgia transplant family whose lives have been uprooted by pancreatic challenges, a cutting-edge transplant and now diabetes are grateful for state-of-the-art medical procedures that are ensuring their daughter will be celebrating Thanksgiving and eating her favorite foods this year … and for many years to come.

For more than five years Mary Kate Pritchett of Chickamauga, Georgia, suffered with severe, acute abdominal pain. As a gifted and competitive softball player, Mary Kate was quite familiar with enduring and ‘muscling through’ various episodes of pain. However, this pain in her abdomen had over time become severe, persistent and immobilizing. Her mother, Leigh-Ann Guthrie, became increasingly worried about Mary Kate’s intensifying pain and decided they needed to seek specialized medical attention.
 

In November 2013 when Mary Kate was approaching her 15th birthday, she experienced her first hospital admission for the pain. At that time gallbladder removal surgery was recommended and performed. After that surgery the hope was Mary Kate’s pain would be gone, but after a short time the pain returned and it was even worse. Leigh-Ann recalls that between November 2013 and June 2018, Mary Kate endured 36 more days in the hospital, many doctor visits, countless tests, a feeding tube, several MRIs, visits to specialists in Chattanooga and Nashville, four surgical procedures and an in-depth evaluation of her pancreas to find some pain relief and normalcy.

But instead, her pain persisted. Very few people knew about the difficult path this teenager was travelling through Gordon Lee High School and into Chattanooga State -- playing her beloved softball in spite of the incredible amount of pain she was experiencing.

In June 2018 Mary Kate was referred to Cincinnati Children’s Hospital Pancreatic Team who studied her many test results and her chronic pancreatitis. They decided to surgically place two stents in her pancreas, but this did not reduce the pain she was then suffering on a daily basis. The team determined her pancreas was failing, which meant Mary Kate was unable to digest fats. Eating even limited quantities resulted in chronic, acute pain. In August 2018 Mary Kate and Leigh-Ann were told she needed a Total Pancreatectomy Islet Auto Transplant (TPIAT), which meant her pancreas, spleen, appendix and part of her intestines would be removed. The TPIAT would include extracting Mary Kate’s islet cells, which produce insulin, from her pancreas and then transplanting them into her liver where they would hopefully produce insulin. There are few transplant centers nationwide performing this transplant so Mary Kate’s TPIAT would be done at Cincinnati Children’s Hospital more than 370 miles from their Georgia home.

During this time of fear and uncertainty a social worker at Cincinnati Children’s suggested the family reach out to the Children’s Organ Transplant Association (COTA) to learn more about fundraising for transplant-related expenses. COTA uniquely understands that parents who care for a child or young adult before, during and after a life-saving transplant have enough to deal with, so COTA’s model shifts the responsibility for fundraising to a community team of trained volunteers. On August 21, 2018, Leigh-Ann called COTA and several days later, the formal agreement to become part of the COTA Family was received at the organization’s Indiana headquarters. On her initial call to COTA, Leigh-Ann expressed concern that a group of very well-meaning softball teammates had launched a GoFundMe campaign “simply because they wanted to do something to help.” She was concerned about the tax liabilities of this type of fundraising. Leigh-Ann was relieved to know the funds raised to date could be transferred to COTA and then the taxable GoFundMe effort could be quickly shut down and people who wanted to help could be encouraged to visit www.COTAforMaryKate.com.

Several weeks later a COTA fundraising specialist trained the volunteers for the COTA campaign in honor of Mary Kate. COTA is a 501(c)3 charity so all contributions to COTA are tax deductible to the fullest extent of the law, and COTA funds are available for a lifetime of transplant-related expenses. This group of family members and friends quickly got to work organizing fundraisers to help with mounting transplant-related expenses.

“From the moment we started working with COTA, the staff worked very closely with my brother and sister who were our lead COTA volunteers and were planning fundraisers and working on our team’s COTA website,” Leigh-Ann said. “It was so humbling that so many people donated and left encouraging messages for Mary Kate on the website. The people at COTA were very helpful from day one and they have always been positive and supportive ever since. During some very stressful times as we started Mary Kate’s transplant process, COTA definitely made our lives easier.”


Mary Kate’s life-saving transplant occurred on October 11, 2018, and lasted 14 hours. She was in the ICU for one week and spent two more weeks on the endocrine patient floor at Cincinnati Children’s. On Halloween Mary Kate was released to the nearby Ronald McDonald House where she stayed with her mother and step-dad, Gary. She had appointments and physical therapy daily for almost three weeks. She was released to go home to Georgia on November 20th -- just in time to be home for the Thanksgiving holiday with family and friends, for which she and her mother were very grateful.

Leigh-Ann wrote a gratitude-filled reflection of Mary Kate’s transplant journey to date:

No one can ever prepare you to deal with all that comes with having a chronically ill child. Daily life is a roller coaster ride where good healthy days turn into bad sick days in a moment’s time. No one is ever able to totally relax. Our life has been like this for about seven years. In 2013 Mary Kate had a five-day hospital stay due to extreme abdominal pain which resulted in a cholecystectomy. After the surgery, she never fully recovered and ended up being admitted to the hospital again and being diagnosed with gastroparesis and put on a feeding tube. Over the next few years she was admitted to the hospital several more times with the same abdominal pain. She missed taking her SAT because she got sick that morning. She missed her high school junior year regional softball tournament because she was in the hospital. She got out of the hospital just in time to go to Disney World on her senior class trip … but her sister, grandmother and I had to go to Orlando with her to prepare food she could eat and to give the chaperones peace of mind in case she got sick while she was there. She missed one entire season of playing high school basketball.

 

It is so difficult to explain the never-ending ups and downs we have all experienced. Mary Kate would seem so healthy one day and would end up in the hospital the next. Her pediatrician was on speed dial, and it seemed we talked to her almost daily at times. When the team at Cincinnati Children’s determined a TPIAT would help relieve her pain, it was a huge and terrifying decision for us. 

 

The recovery and months since the transplant have not been easy or without complications, but Mary Kate has no more pancreas pain and has been able to play softball in college. She was able to graduate with her Associates Degree from Chattanooga State Community College. Mary Kate was able to play on Chattanooga State’s softball team that won the conference championship and then went to the national tournament in St. George, Utah. She committed to attend Covenant College and play softball for them for the next two years as she earns her bachelor’s degree.

 

Mary Kate has an amazing testimony and has handled everything she has been through like a champ. She has never wanted anyone to pity her or to treat her differently because she has had a chronic illness and a rare and risky transplant. She embraces her life, her faith, and she makes the most of all of her good days. She is an inspiration to all of us. We are incredibly grateful.

 

There have been challenges since the TPIAT. Mary Kate went from not being a diabetic to becoming a Type 1 diabetic as soon as her pancreas was removed. She was put on an insulin pump and she and her family had to be trained how to use it and how to count carbs. Mary Kate had to learn how and what to eat again, and how to give herself medications and formula in a feeding tube. She faced it all with courage and was uplifted by family and friends. Mary Kate remained on an insulin pump for a year and four months. Then, through a lot of prayer, the islet cells in her liver began to produce enough insulin so that she was able to come off the pump. Her journey, however, was not over and was not without further complications.

Summer 2019 brought more health challenges to this family and specifically to Mary Kate. She was inpatient for a couple of weeks in June for surgery that cleaned up some scar tissue that had been causing obstructions in her stomach and intestines. It did not take long until her recovery was on track so she could start running, conditioning and preparing to play softball on her beloved ball field at Covenant College. A year later, Mary Kate and her mom spent another six weeks in Cincinnati during the summer of 2020. Mary Kate had another surgery to remove more scar tissue and to remove part of her stomach and reattach the large intestine. For the third time, she has started the recovery regimen so that she can exercise, run, hike and do all of the things she loves.

Mary Kate is currently studying to be a child life specialist. She is a senior at Covenant College; she continues to take life one day at a time while getting healthier and stronger each day. Gratitude has become a very important part of her daily routine … and a regular practice for all of her beloved friends, family and teammates.

“In a matter of two months our lives turned upside down. Our collegiate athlete teenager had struggled for a long time with abdominal pain, but hearing she needed a rare transplant made our lives hectic, confusing and totally unpredictable. We had never even heard of the Children’s Organ Transplant Association (COTA), but in a very short amount of time COTA gave us a huge sense of relief. With COTA we knew there would be money to pay for transplant-related expenses, including the transplant, travel, temporary housing and so much more. It is a blessing that so many friends and family members used COTA as a way to help and show their support. It is also a blessing to know COTA funds are available today and will continue to be available … for a lifetime,” said Leigh-Ann.

This year the family’s Thanksgiving table will be full of grateful people and their Thanksgiving blessing will likely include a chorus of thanks for Mary Kate’s medical team and for their army of COTA Miracle Makers for whom they are forever grateful. 

Happy Thanksgiving Mary Kate from your COTA Family!
 

For more information about the Children’s Organ Transplant Association (COTA),

or to find a COTA family in your area, please email kim@cota.org.

 

 

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