My Mother’s Story

If it were not for the generosity of a stranger’s family, I would have never known my mother. In order to tell you this story, I have to go way back to 1987, the year I was born and the year my mother received a second chance at life.

My family has been plagued by a genetic disease called Primary Pulmonary Hypertension, or more recently named Pulmonary Arterial Hypertension. It is a disease characterized by high blood pressure in the primary artery between the heart and lungs that leads to eventual terminal heart failure. It has taken the lives of many family members far too early in their lives (in our family the disease presents itself around mid-twenties). Even worse, when presented in females in our family this disease is brought out of dormancy after child birth due to the spikes in estrogen that is associated with carrying a child. This is the disease that took my beautiful Aunt Debbie from us at the young age of 23. Shortly after my Aunt passed my mom had a dream of Debbie admonishing her “You have it too,” and unfortunately that nightmare came true.

My mom found out that she did indeed have early symptoms of the disease but still chose to have children. The only cure would be to get one of the first heart and lung transplants in Arizona. This is the story as my mom told it to the Donor Network of Arizona:

It was 1986 and my life seemed perfect…

I had a loving husband and two beautiful daughters, ages two years and six months. I started having headaches and fatigue. After many tests, I got the news that I had Primary Pulmonary Hypertension which is the hardening of the small muscles and cells of your lungs. Most people at that time died within two years of diagnosis. I went through the only clinical trials they had at the time, and they only made it worse. My only hope was to receive a heart and double-lung transplant. At this time there had only been a little over a dozen heart and double lung transplants in the nation.

My health eventually deteriorated so much that I had to go to the University Medical Center in Tucson. On July 17, 1988, a 17-year-old young man experienced a tragic fall and his family made the decision to donate his organs. The transplant team went to the hospital in Vegas to retrieve the organs. My husband was in the waiting room when he saw a doctor come in with a cooler and he asked if those were going to be my organs…they were!

The gift that my mom received in her heart/lung transplant has given me the last 27 years of my life with her. I will forever be grateful to the family that chose to donate their 17 year old son’s organs to my family. After the transplant, my mom was healthy and lived a normal life up until my teens. Because of all the immunosuppressant drugs that she has to take to keep her heart and lungs from rejecting, it took a toll on her kidneys and liver. She had to have a portion of her liver removed due to damage and also waited six years for her first kidney transplant. This kidney came from a donor that had passed away and there were some issues that didn’t make the kidney a perfect match, but my mom was desperate. She had been on dialysis to clean her blood, which is exhausting (think of a three hour blood transfusion every other day) and for my mom she battles horrible skin cancer when she is on dialysis. She received the kidney from a retired Marine who was in great shape and was a good match on paper, but the kidney rejected after a few years and my mom had to go back on dialysis.

When my mom first found out about needing a kidney, my sister and I were too young to even think about donating. This time around my mother would never think to ask anyone for a kidney because it is such a large sacrifice. Living donors have a much higher success rate and begin to work in the recipient almost immediately after transplantation where cadaver organs can lie dormant for hours or days before beginning to work in the recipient. Additionally, genetically related donors provide the closest thing to the recipient’s own organ making the chances for rejection less and the success rates soar. This kidney will work, I am faithful that it will work by the grace of God.

As for the fear of the genetic disease in our family, PPH or PAH; I have gone through genetic testing to search for a mutation in my bone morphogenetic protein receptor 2 (BMPR2) and confirmed that I do NOT have the mutation. This means that I do not have the disease and will not pass it along to my children. This has been an answer to the prayer my mom has prayed for me for the last 26 years. Praise God! There was a number of additional tests that I went through to ensure that I am a good fit, but I think I’ll tell you about that another day.

Thank you to all the families that choose organ donation for their loved ones. Because of your selfless decisions during an incredibly difficult time, families like mine have their mothers.

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One comment

  1. Amy, this is remarkable and remarkably heroic on your part. Please know that you will be in my prayers and I will be in petition for both you and your mom throughout. I know that this is not a decision that you have reached easily, but I also know that, in all likelihood, there was never a doubt in your mind. May God’s grace, perfect peace, and physical healing pour out upon your family as you embark on this journey. Blessings to you.

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