A Family Loses A Son, But His Generosity Leads To New Life For Others

By Deirdre Barry

I can’t remember much about Christmas 2001, but it is definitely one I will never forget.

I received the gift of a lifetime, but it wasn’t from Santa. I received a double lung transplant. I was 19 years old.

I was born with cystic fibrosis and led a semi-normal life growing up. At 14 years old, I started getting very sick. I was going in the hospital more often, and I was unable to fight off infections. Originally, I needed oxygen, only when I slept, but as I continued to decline I needed it all day long. I was also not gaining weight and was deemed malnourished (“failure to thrive”). I weighed only 75 pounds. I tried my hardest to get better, but nothing seemed to work.  My doctors then told me I would need a double lung transplant. This was something very new to me and my family. We didn’t know much about it, or what would happen down the line. I was put on the transplant list at 15 years old and was very scared.

The next four years were really rough on me. I was trying to finish high school, but I was on oxygen and too weak to attend school every day, especially during my sophomore year. My teachers agreed to come to my house afterschool to keep me up to date with school work, but lacking the social interactions with my friends made me depressed.

I saw a pulmonologist every week to test my lungs and make sure they were not failing more rapidly. I also saw a nutritionist every week to help me gain weight. I was put on a 3000 calorie a day diet and still had problems gaining weight.   

I was able to return to school for my junior year and that helped with my depression, but I was still on oxygen and was still sick—which made me very different than my school friends. I did graduate with my class and went off to Salve Regina University in Newport, RI in September 2000.  However, being the “sick girl” on campus made things awkward for me. I didn’t have the same experience as a normal freshman in college because my health was in the way. Doctor appointments, oxygen, hospital admissions, and exhaustion held me back.

During my time on the transplant list, I did get somewhat “healthier”—my body compensated for the lack of oxygen. I gained weight (25 pounds) and my lungs slightly improved. I was still sick enough to qualify for a transplant, but I was now stronger to go through with the surgery.

During December 2000, I was finally called. I was petrified. Being a psychology major I started believing in the power of our minds over our well-being. I was only 18 years old, and was “comfortable” being on the transplant list and I was not ready to be called. I had to say ‘no’ to the lungs. Luckily, someone else was saved by those lungs originally meant for me.

On December 23rd, 2001, during my sophomore year of college, I was at home in Rhode Island for winter break. I was in my bedroom watching TV when my cell phone rang at 10:43pm. It was a Boston phone number…I knew what it meant. It was my transplant pulmonologist, and he said to me “Are you ready?”  This time, I was ready. My mom, brother and I drove up to Boston.

I went into the operating room awake. I moved onto the gurney by myself. I lay down and remember thinking “This is it, this is the moment that my life changes forever.” Surgery officially began at 4:00am on Christmas Eve morning, 2001.

I spent the next 2 weeks in the hospital learning how to walk, eat, and breathe with my new favorite Christmas gift. I opened Christmas gifts and I watched the ball drop in the hospital. I was on an emotional rollercoaster:  knowing I had a new lease on life, learning all the new medications I would need to take, and recovering from a major surgery.

One other thing I had to do was to remember the family who sadly lost a son during the holidays. I was celebrating my new life, but they were mourning over their loss. I had to remember that they didn’t choose to lose their son, but they did choose to donate his organs. I corresponded with the donor family a year after my transplant and they wrote that he wanted to be an organ donor for many years. It was his choice to pass on organs to people who needed them. His death saved 10 people, including me.

I know I lead a healthy life and volunteer my time with Donate Life Connecticut.  Please remember my story when you consider checking the box to join the Organ and Tissue Donor Registry at your next visit to the DMV.  Or join today and learn more about saving lives at www.DonateLifeNewEngland.org.

This article was submitted by Deidre Barry of Madison. If you have something you'd like us to run, please submit it to pem.mcnerney@patch.com.