Steve's Letter

Sunday, September 10, 2000

Dear Donor Family,

My name is Steve. I live in Illinois, and have lived in the same general area all of my life. I've been married to my wife Laura for over 11 years. I truly believe I love her more than when we fell in love 14 years ago. We have no children, but we share 10 beautiful nieces & nephews all under 10 years old. Because of you, I celebrated my 40th birthday 4 days after my surgery. Because of you, I'll be able to share my nieces' & nephews' lives, go to little league games & gymnastic meets, and I won't worry about leaving my wife alone.

Prior to going on disability 3 years ago, I worked at one of the financial exchanges for 18 years. I had to leave 3 years ago to wait for my transplant. They have been incredibly supportive the entire 3 years I was waiting. They've welcomed me back with open arms. 10 weeks after my surgery, I returned to a hero's welcome! I've been lucky enough to love what I do almost as much as I love life!

My wife and I enjoy simple things like reading at the coffee shop around the corner, walking along the lakefront and parks, and though I'm not that good, I love to golf. We haven't been able to do any of those things since I started going downhill 4 years ago. Your gift to me changed all of that.

I've struggled with cystic fibrosis for 40 years. I've also had an incredibly supportive family, and a wonderful doctor for the last 27 years who has helped me live well beyond the average CF lifespan, but not without some bumps. I knew about 10 years ago a transplant was likely in my future. At that time my doctor told me the year I would wait would be the most difficult year of my life. Little did either of us know it would be over 2 1/2 years. But my wife, family and doctor rallied around me and really kept me going, medically and emotionally.

After complications from a collapsed lung in mid 1996, and a severe bleeding incident in May 1997, I went on supplemental oxygen 24 hours a day. I was forced to leave work in July 1997 and began testing to see if I qualified for a lung transplant. I was finally listed on September 8, 1997. By that time, I was getting chest physical therapy (pounding) to clear my secretions 4 times daily. Each treatment was 2 hours long for a total of 8 hours of pounding on my chest every day. My first treatment started at 5am, and the last one finished at 11pm. I was too wired to go to bed before midnight, and this continued for 2 years 7 months until my transplant. Luckily, we had a very dedicated professional therapist who drove 1 hour to get to our house at 5am every morning, 7 days a week for over 2 1/2 years! She did the 2 morning treatments, my wife did the 5pm treatment when she got home from work, and my younger sister drove over every night to do the 9pm treatment. I was on I.V. meds for several months, and inhaled meds, either of which took at least 2 hours daily to administer. The doctors required me to gain at least 15 pounds or they were going to put a feeding tube in my belly. I did NOT want that, so I was eating 6 or 7 small meals daily because it's hard to breathe with a full belly. I never slept more than 5 straight hours the entire 31 months I waited. My wife didn't get a lot more sleep. She got up with me, then napped for another hour before she went to work. The rest of the day, if she wasn't at work, she was helping me. For 2 years 7 months my wife and family's focus was keeping me alive and healthy enough for transplant.

When I was initially listed, we were told it would be about a one year wait. Many of the people already transplanted doubted it would be more than 9 months. Much of the first 6 months I really wasn't certain I would survive until transplant. After 6 months I stabilized a little, and I think about then I started believing I would make it the few months left until transplant. Little did we know I would wait 2 more years!

Around April 1998, my Dad was diagnosed with esophageal cancer. Except for a few silly things like gallstones, he had never been sick a day in his life. During surgery, they determined the cancer had spread. Over the next year we went through several ups and downs, thinking it was under control, then finding it somewhere else. In May 1999 my Dad passed away. He was truly a beautiful man. There were about 300 friends and family at both the wake and funeral. I had the honor of giving part of the eulogy. We asked my Dad's best friends to spread his ashes on his favorite golf course. A week later I got my first of 4 false alarm calls to the hospital for transplant. My Dad was looking forward to my transplant so very much, it seemed like he was with us. Though being sent home was a letdown, it was really moving to have the entire family together and so very excited for me. We had really been prepared for false alarms, over the next year or so we had 3 more. By the 4th one we almost assumed any call would most likely be false.

Something felt different to me on April 8, 2000. We were called at 2:00pm and told that the surgery may take place at 10:00pm. It was the longest wait we'd experienced. Laura was a little skeptical as we waited by the phone for a call telling us not to bother to come. We left for the hospital around 6pm. I really had a different feeling about this call. Both Laura and my families were with me in pre-op. Since no other patients were in pre-op, the nurse left all 10 of them visit with me until they rolled me into the operating room. Over the past year, I really thought I was going to be afraid before they put me under, but I felt strangely prepared for what was coming. I was a little apprehensive, but I also knew that if this didn't happen soon, my luck wasn't likely to hold out much longer, so I knew I was ready. After they prepped me and had all the I.V. lines in, before they put me under, I asked a nurse to please have someone go out during surgery and tell my wife I love her more than anything. I thought about my Dad, then they put me out.

My surgery was 5 1/2 hours. Someone relayed my message to Laura. By midnight they told my wife and family my first new lung was in. After completing the second lung, my surgeon told Laura the scarring on my lungs was the worst he'd seen in his 12 years of doing transplants.

It took them about 3 hours to get me stable after surgery, and they kept me pretty much unconscious for 12 hours (including the 3 unstable hours). I vaguely recall coming around a few times and fighting the ventilator, but they put me back out right away. I can remember not being able to breathe, but vividly realizing that I was alive and didn't have to breathe because it was being done for me. The next thing I really remember is all kinds of things being pulled away from my face and out of my nose, the fog clearing, and I looked up and saw Laura.

Laura had called her father and step-mother in South Carolina as soon as my surgery started. They hopped into their car and drove straight through to Chicago. You can imagine my surprise when I woke up and saw both of our families including their smiling faces! Aside from our families, a few close friends came to wait several hours with Laura while I was in surgery between 10pm and 4am! You can imagine how moved I was.

I woke up talking like I've never talked before. 3 hours after I woke up I had my first tray. Broth and Jell-O never tasted so good! The pain after surgery was MUCH less than I had anticipated. My recovery was incredible. The only reason I was in intensive care for 2 days was because they couldn't find a regular bed for me after 1 day!

My hospital stay went incredibly smoothly. I celebrated my 40th birthday 4 days after my transplant. My Mom brought a cake big enough for 40 people which we shared with anyone that came near my room. I stood up the day after my surgery, and was walking slowly around the room the next day. By the 4th day, Physical Therapy and Rehab was amazed at how well I was getting around. So was I! I went home 6 days after my surgery. Laura and I were walking around the courtyard of our building the next day. 3 days later we walked 1/2 mile to get coffee at Starbuck's. You can't even imagine the feelings I was experiencing. Just 10 days out of surgery and I was walking better than I have in 5 years! Less than 3 weeks out of surgery we were walking 2 or 3 miles daily. At 3 weeks I asked the doc if I could try to play tennis and ride a bike -- he said to go for it. Laura has been bothering me to get bikes for 10 years. I kept avoiding it because I just didn't have the stamina. At 3 weeks we bought bikes! We ride 1 or 2 miles every few days. It's truly incredible!

At 5 weeks out, I got permission to swing a golf club. We went to the driving range. My incision still hurt a bit, but I was able to hit half of a bucket out. I haven't swung a club in over 4 years. I found out I'm still as bad as I always was. And it's wonderful!

I've gotten quite a bit more emotional since my transplant. I suppose it's a combination of the excitement and the medications. I've been truly overwhelmed by the numerous friends and family members that have provided me constant support during my long wait, and shared in our joy when I was successfully transplanted. I'll find myself walking down the street, or in a group, and tears will begin streaming down my face... happy tears. And if someone asks, I tell them about you. I tell them how a family in Iowa lost a loved one, yet thought enough to give life to someone they never met. There's a special place in my heart and thoughts for you and your loved one. I think about you often, and I always will.

It's difficult for me to share the joy I feel and at the same time reconcile that with the loss I know you've suffered. I do know what you did was a purely selfless act. And an act of pure goodness. After 40 years of living with cystic fibrosis, I hope you can understand what you've done for me. You did not just save my life. You've given me a life I've never known; I've never, EVER been able to breathe this well. I don't know if I can do anything to ease the pain you feel, but I will always do my best to honor the gift you've given me, and the loved one you've lost. My wife, my family and I will never forget what you've done for me.

The week I returned to work I mentioned to a coworker and friend that my donor family was from Iowa. Later that day my friend sent me an email reminding me of that scene from the movie "Field of Dreams", where one character asked, "Is this Heaven?" And the other character replied, "No, this is Iowa." Because of your gift, this is how I'll always think of Iowa.