MCSMN Blog

September 7, 2018

PS: Enjoy your life – Experts by Experience

By Rosemary, Volunteer Mentor

When routine labs indicated abnormal liver function numbers, my doctor referred me for further testing. I was diagnosed with Primary Sclerosing Cholangitis (PSC), a chronic liver disease with no known cure except for liver transplant surgery.

I was frightened beyond words, but with my doctor’s support, I concentrated on staying healthy by focusing on a healthy diet and increased physical activity. With no bothersome symptoms and routine monitoring, I successfully put the thought of surgery out of my mind for nearly seven years.

Fear

In September 2008, the doctor informed me that my cirrhosis had progressed and I would need to have a liver transplant…and soon! I was placed on the organ transplant waiting list and the fear of major surgery dominated my mind again; for the first time, I realized that my life, my future, would depend on the donation of a healthy organ from another person. And, that person would have to die so that I could live.

For me, this was a moral and ethical dilemma. My pastor guided me, helping me understand that through organ donation, a person (while living) makes the decision to give his/her organs to someone in need after he/she no longer needs them. It is a person’s final act of human love. I decided then, that I would honor this gift if it was offered to me.

Guilt

Over time my health deteriorated as my symptoms worsened with the advancing cirrhosis. My life was on hold. When my kidneys failed suddenly and I needed dialysis, I was afraid that time was running out. I was now in need of both a liver transplant and a kidney transplant, and I began to pray and hope I would receive a transplant soon. This rekindled a sense of guilt and became an even bigger dilemma for me–did I want someone to hurry up and die? It was time to rethink, to refocus on what I was hoping and praying for. Early one morning in April 2009, I received the call from my transplant surgeon–they had organs for me.

Relief

The surgery went well, my new organs began to work right away, and I was beginning to feel like a healthy person again. Family visits were joyful, and I remember hearing the sound of laughter–I looked forward to a future with my loved ones.

But I envisioned another family somewhere, grieving. A life had ended, and another life was beginning. On one hand, I was overjoyed and wanted to shout, “I’m alive!” On the other hand, I grieved for the family who had just lost a loved one–my organ donor.

Several months later, I wrote a letter to my donor’s family–it was difficult to find the right words. How does one send condolences, and say thank you at the same time? Relieved, when I finally dropped the letter in the mailbox, I silently wondered how they would receive my message.

Peace

One day, the mailman handed me a special delivery envelope–it was from my donor’s family. Clutching it, I had to sit down for a while before I could open it. Carefully opening the envelope, I slowly read the contents with tears in my eyes. The last words, “We want you to enjoy many years of a happy life,” gave me the resolution of any guilt that I still felt. A sense of peace came over me as I read the hand-written message and learned a little bit about my donor–a day which I will forever treasure.

Joy

I received the gift of life and more! I was given the permission to enjoy my life. And I do, every day.

Experts by Experience is a collaboration between Inspire and Mayo Clinic Connect, online support communities for patients and caregivers. By sharing their stories, patients and caregivers awaken, inform, and strengthen the capacity to partner in their care. The stories also help clinicians and non-medical professionals in health care implement patient-informed practices in their interactions and communications, by uncovering opportunities for quality improvement. The series showcases the value of shared experiences and features contributors from around the globe.

About the authorRosemary Huckleberry, a simultaneous kidney/liver transplant recipient, lives in central Kentucky and is a volunteer Mentor on Mayo Clinic Connect. Her favorite pastimes include knitting and crocheting, and she has started a prayer shawl ministry at her church. Rosemary loves solving Sudoku puzzles, playing the violin at church, and taking annual hiking vacations with her husband.

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