It is now October 2005. I am 36 years old, and I will never spend a day on this earth without being thankful to God and my lung donor for the gift of being alive. My transplant came just a few months before my heart was ready to give up and just a year after my PH diagnosis. For those of you with PH who are still sliding downhill despite all medications, please read my story...
I have never been seriously sick at any point in my life until recently. No allergies, no chronic conditions, no real health problems at all. I was blessed with a strong body and enjoyed many athletic pursuits. In the fall of 2002 I noticed that I was becoming short of breath when I exercised. At first I thought I was simply getting out of shape and getting older, so I redoubled my efforts at the gym. By December it was clear to me that something was seriously wrong, as I was having trouble walking up stairs or exercising at all.
Just after New Year’s Day in 2003, I visited a cardiologist who immediately sent me to the hospital for a chest CT scan. The scan confirmed his fears—I had blood clots in my lungs. Large pulmonary embolisms typically cause sudden death, but in my case there was a shower of small clots scattered throughout all the lobes of my lungs. The good news, I was told, was that they would put me on blood thinners that would cause the clots to dissolve and I would be fine in a few months. So I left the hospital full of hope.
As February and March progressed, my shortness of breath became worse. On April 1, 2004 our 4th baby was born (more on that later) and on April 4th I was back in the hospital because they couldn’t figure out why I was having such trouble breathing. This time I was diagnosed with pulmonary hypertension.
As my wife and I read about PH we alternated between hope and great fear. Determined to do everything possible, I found the wonderful clinic at UCSD and found my way from Washington DC to San Diego in June 2003 in search of help. Initially I hoped that I would be a candidate for the PTE surgery to remove my blood clots and perhaps cure the PH. After many tests I learned that my clots were too small and dispersed to be removed through surgery, so they started me on Flolan. Full of hope and feeling better on the Flolan, I returned home to DC.
However, from that point things went downhill fairly quickly. As the summer turned into the fall of 2003, I had to begin using supplemental oxygen 24 hours/day. I was consulting with the doctors at UCSD as well as Johns Hopkins and Inova Fairfax. They raised my Flolan levels, tried Tracleer and Viagra. All of these medicines designed to stabilize my condition were not working for me.
I struggled greatly with the decision to become listed for a lung transplant because of the magnitude of the surgery and the poor survival rates after transplant. But as my condition became worse the decision became easier - it was clear at that point that a lung transplant was the only option left to save my life. I was listed for a lung transplant in September 2003. Since I am over six feet three inches tall, finding a match in size was going to be very difficult for me.
By Christmas of 2003, my lungs had started to bleed internally and I was coughing up about 1 cup of blood per day. My need for oxygen was so great that the small portable tanks couldn’t supply enough air for me, so I was bound to stay home with very large oxygen tanks that could pump enough air to keep me alive. I realized that this very well be my last Christmas to celebrate with my family. My family flew in from all over the country to be with me at Christmas. My wife and children stood with me in fear and hope as the New Year turned and we entered 2004.
When you are waiting for a lung transplant, a big concern is to stay healthy enough that you have a chance to get through the surgery and difficult recovery. I was rapidly getting worse, and I knew that I would soon be too ill for the transplant. In January my doctors estimated that I had less than 6 months to live. It was a very difficult time for all of us because I wanted to hold onto confidence and hope that everything was going to turn out alright, but I couldn’t ignore the fact that I may very well be leaving this world and my precious family within a few months. I began to write my good-bye messages to my children, while at the same time praying constantly for the strength and faith to hold onto life.
My birthday is March 5th. My wife wanted to have a party for me, but I was so sick and she was so busy trying to take care of me and our four children that it didn’t come together. As March progressed my wife decided that we just had to have a party since it could be the last. She invited all of our friends and family to my 35th birthday party to be held on March 27th. I jokingly (and hopefully) made her amend the invitation to say please join us for his 35th birthday and Adios Old Lungs party. That night my closest friends surrounded me and we prayed and laughed and remembered. As everyone left we received their blessing and hope that the transplant would come soon. Now enter God’s amazing timing. Our last guest left at 1:00 in the morning. At 3:00 the phone rang, and before I even woke up I knew that this was the call that would save my life.
My doctor told me that they had lungs for me, from a man who was near 60 but was a match for me in size and blood type. Normally the difference in age would be a concern, but these lungs had obviously been cared for as they were testing to be as healthy as lungs from a much younger man. We raced to the hospital, scared and hopeful all at once. The chances of making it through the transplant surgery in my condition were not good, but at this point I had nothing left in me but faith in God’s hand working in my life. I was put to sleep by 6:00 in the morning and woke up several days later in the intensive care unit. Apparently it had been touch-and-go in the days following the surgery, but prayers kept me alive and my heart and the new lungs began to work and pull me back to life.
From that point forward, I’ve never looked back. I am now 18 months out of transplant, and I can walk, run, and have even resumed playing volleyball. Before I became sick I normally weighed about 220 pounds. When I left the hospital three weeks after the transplant I weighed only 147 pounds. It has been a joy to wake up each day and take another step forward towards health and life. Before the transplant, I told my wife sincerely that if I could ever just walk normally again that would be enough for me. But the sacrifice and blessing made by my donor and his family has given me back so much more!
I am thankful for my life and for every additional day that I have on this earth. One thing that became clear to me was that I am not afraid of my own death because I know that God has a plan for my life and will bring me home to be with him in his own right time. But the heartbreak I could not get past was the thought that I would not be alive to help my four young children. My oldest is a beautiful 14 year old girl, followed by a 10-year old boy and a 7-year old boy. Our baby girl is now a wonderfully precocious 2-year old whose enjoyment of life is the best possible medicine for me.
I do not know how much more time I will have to spend on this earth. The death rate of lung transplant patients is high, but I have already been granted one great year and I will strive to make it sixty more, Lord willing!
I am committed to making every day count. I am working with transplant centers to raise funds for research and for new medications that have shown great promise to help extend and improve the lives of all lung transplant patients. And most importantly is every new day I can enjoy with my wife and children, serving God to the best my limited abilities and His limitless grace.