My lung transplant journey started back in the early 1980s when I began to notice an inability to breathe normally, and it was taking me longer to recover from shortness of breath. I was within two years of retirement from the Navy when I learned I was the second member of my family to be diagnosed with Alpha-1 antitrypsin deficiency (A1AD) and that I had lost about 75 percent of my lung function. I was given about five years to live.
Alpha-1 is a genetic disease of the liver and lungs, identified in 1963 by a doctor in Sweden. It is one of the most common fatal genetic diseases among people of European descent. When diagnosed, it was thought that 1 out of 4 siblings would have what is known as the ZZ phenotype of alpha.
In my case, both my mother and father were carriers and both died of complications from alpha. I have two sisters who have the ZZ phenotype. My brother is yet to be tested but already shows many of the early signs of alpha. My older sister contracted pneumonia and after a 20-plus-year struggle with alpha-1, she passed away. She no longer struggles to breathe. In her death, she helped others by being an organ donor.
I was able to maintain my 25 percent lung function for a few extra years by changing my lifestyle when I retired and by receiving Prolastin IV treatments to help slow down the lung deterioration. Exercise was key in preparation for my lung transplantation. The better shape you are in physically and mentally, the better your chances of an easier recovery from the surgery.
At times, people would find me pushing the wheelchair with my oxygen in the seat or in a backpack as I peddled the boardwalk at the oceanfront. During bad weather, or during the last two years before my transplant, I was pretty much relegated to walking the "TreadMonster" with six liters of oxygen. At the time of my transplant, my lung function had dropped to approximately 10 to 12 percent.
During my 16 years of struggling to breathe, my wife Betty and our children were my life, my support. It was difficult for them -- especially the kids who were 6 and 13 when I was diagnosed. They grew up with a Dad who had trouble getting to many of their school functions or having a chance to enjoy their growing years. Such things as no perfume, body powders or hair sprays and not able to bring friends by if they were sick with even a simple sniffle/cold were hard for them to adjust to.
My wife found herself having to do many of the tasks I used to do, from yard work to vehicle maintenance. For us, going out meant loading the wheelchair in and out of the car, carrying extra oxygen cylinders, bags of necessary medicines, a nebulizer and more. Eventually, I got to the point where I would rather stay home.
After being put on the transplant waiting list in August 1997, I GOT THE CALL at 1:30 p.m. on Feb. 4, 2000! A donor had been found who was a match! I contacted my wife who was at work, and by 2:30 p.m., we were packed, extra oxygen tanks and all, and on our way to Inova Fairfax Hospital.
We'd had many heart-stopping "false alarms" where we'd be enroute to the transplant center only to have the cell phone ring and be told the donor lungs were damaged or something. The emotions of that were a constant roller coaster. The cell phone rang just as I was turning into the emergency department parking lot. "Oh God, no," I said. Luckily, they were just checking to see how far out I was from the hospital and were shocked to hear we were there an hour ahead of time. My wife and I met my "lung brother" Dave and his family. I was to receive the right lung and Dave the left. A lady in DC was blessed with the heart.
My lung brother Dave went into surgery first. As I waited on the gurney with my wife, we talked about so many things in our lives and the love we shared. I felt confident going into surgery as I kissed my wife good-bye and said what a husband says to his wife of many years. As I looked around the operating room, I was calm. My faith in the transplant team, as well as my God, was solid. Either way the surgery went, I was coming out a winner.
I awoke Saturday morning, Feb. 5, in the Intensive Care Unit on a ventilator to help me breathe and a new healthy lung to help my "native" left lung do its job. I was taken off the ventilator and the thrill of my "first breath" is something I cannot describe.
The closest thing I can liken it to is when I was younger at the swimming pool. My friends and I would dive in and swim the length of the pool holding our breath, feeling like our lungs would burst, but not wanting to break the surface until at the other wall. Just as a kid when I broke the surface at the pool, my lungs kept filling with sweet cool air and my chest kept expanding. My skin color changed to a healthy tone and the air just kept coming. I, and everyone there, had tears welling up as I thanked God, my donor and his family for honoring his wishes, and my family for sticking by me all those years. I thanked my transplant team for saving my life and monitoring me constantly to ensure my lung stays healthy and is not rejected.
The reality of it all hit home even more when I was informed my own lung was so bad, I would not have made it another month or two had I not been blessed with my new lung. It's been 26 months since that day when my life was given back to me and my family. Through my donor's death, others have lived due to his love and caring nature. I've written to my donor's family, thanking them for raising such a fine son and for instilling such wonderful values in their son. I think about them every day.
I'm presently getting ready to participate in the Transplant Olympics in Florida in June 2002. I am a volunteer with the American Lung Association, do bike treks, clean air challenge walks, and assist in an online alpha-1 antitrypsin deficiency international support mailing list and Website (http://www.alpha2alpha.net). Also, I am a volunteer for LifeNet of Virginia, and I was recently selected to be the Virginia transplant recipient representative of the Virginia Transplant Council.
Stay well, and remember to sign your organ and tissue donor card/driver's license and tell your family.