April is organ donation awareness month and the need for organs keeps growing every year.  Transplant is not something every patient with cystic fibrosis (CF) will face. Though modulators, especially Trikafta, have meant that less people face the reality of having a transplant, many still do. There are currently 917 people on the list for a lung transplant, 41 on the heart-lung transplant list, and 9,714 on the liver transplant list in the United States (Organ Procurement & Transplantation Network)

Facing mortality at an early age is difficult, so the hope of getting a transplant to prolong your life is incredible.  I had my double lung transplant at the age of 23 in 1996.  I have been able to do so many things since my transplant, like becoming an avid swimmer.  Post-transplant, I have attended 11 U.S. Transplant Games and 1 World Transplant Games competing in mostly swimming events.  I have met many transplant folks over the years and see how the gift of life has helped others to live their best lives.  I have been able to watch my niece and nephew grow up, (my nephew graduated high school), foster dogs for an animal shelter, finish my degree in college, and travel to places around the world. Still, there is much I want to do. 

Organ Donation awareness month is so important to get the word out for folks to sign up to be organ donors in case they pass unexpectedly and can donate their organs.  I did not mention the biggest wait list of all, which is kidney.  Some of the medications we take for transplant do a number on the kidneys.  There are over 89,297 people on this list, and I am one of those people.  Waiting for a donor is the hardest part.  Knowing in most cases, someone must die for you to live is daunting.  For kidneys on the other hand, you can receive a living donor transplant.  After my lung transplant, I grieved for my donor, and still do every day, but I decided my donor would want me to live a full life and not be sad. 

I have met so many donor families over the years.  The most recent was while shopping and I noticed a mom wearing a Donate Life bracelet.  After she saw me notice, I asked “Are you a donor mom?”  She said yes.  We have become friends, and she is one of the most kind and grateful people.  Her daughter has my name.  She passed away a year before I had my transplant.  We cried and hugged.  There is nothing better than getting to hug a donor mom and thank her for her gift to others.  If you have not told your family you want to be a donor yet, now is the time so they are aware of your wishes.

By: Missy Peterson