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Rosemary, Volunteer Mentor (@rosemarya)

Organ Donation and Transplant: What is Your story?

Transplants | Last Active: May 16 4:38pm | Replies (58)

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My Story-
My transplant story started when my primary care physician noticed abnormal results on a routine blood test. He referred me to a gastroenterologist and I was diagnosed with Primary Sclerosing Cholangitis (PSC). For nearly 8 years, I was asymptomatic and under his care.

During the summer of 2008, I began to notice fatigue, itching, and nausea that I credited to a recent vacation and hiking. As soon as the jaundice appeared, I knew that I was wrong! A week later, I had an appointment at the Liver Transplant Clinic. The surgeon said that my disease was progressing and that I would need a liver transplant in the near future.

I was evaluated and placed on the UNOS liver transplant list in November of 2008. My condition deteriorated and my symptoms got worse. The fatigue was overwhelming, and the ascites made walking difficult. I only left the house if I had a doctor’s appointment.
In January 2009, I got news that I might have cholangiocarcinoma and was inactivated from the transplant list until a biopsy could confirm otherwise. Due to biliary blockage, the attempts at biopsy were not successful. My transplant team made arrangements for me to be seen at the Mayo Clinic in Rochester.

My appointment was to be in 5 weeks, but I missed it. Acute kidney failure put me in ICU and on emergency dialysis. My condition stabilized and after 5 days, I was flown from ICU in Kentucky to Mayo in Minnesota, a distance of nearly 800 miles.

I spent 2 weeks in the hospital with inpatient dialysis and other interventions. Biopsy results were negative for cancer and I was re-evaluated and reactivated on the UNOS list – for a simultaneous liver and kidney transplant. I requested to stay at Mayo for my transplant.

My husband was at my side the entire time and for 13 weeks our home was at the Gift of Life Transplant House where we met other transplant patients. We discovered that we were not going to be alone, even though our family and friends were many miles away.

The days and weeks leading up to my transplant were long and exhausting. Time seemed to slow down, as day after day I struggled to regain some strength and weight so I would be strong enough for surgery. The jaundice, the nausea, the fatigue, the ascites, the inability to sleep, the procedures, and the dialysis were my normal.

I got the Call from my transplant surgeon early one April morning in 2009. We rode the patient shuttle to the hospital. I remember getting cheers and high fives from the nursing staff as my husband pushed my wheelchair down the hallway! The morning was busy, as I had a short dialysis treatment, and was visited by surgeon, anesthesiologist, chaplain, several doctors, and even our 2 sons who were in town to visit us that week.

My surgery was successful. My new organs began to function immediately. My days of recovery went well, and every day, I was stronger than the day before. It was a joyful time for me and my family.

After 3 weeks, I returned home. Gradually my strength and my endurance continued to improve. Since my transplant, I am once again able to go hiking with my husband, I have resumed playing my violin on Sundays at my church, and have also started a prayer shawl ministry there. I have also joined Mayo Clinic Connect where I volunteer as a Mentor.

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Replies to "My Story- My transplant story started when my primary care physician noticed abnormal results on a..."

@rosemarya thank you for sharing. you re true gift to all of us in our journey.

Don't know what to say after reading your story. Just that you are an asset to all of us that have or are having a transplant. You are contributing back to other more than you realize.