Jim Lawrence's Story
I had been an athlete all my life, so I was excited about joining the "The Sergeant's Program" in the fall of 1999. Their slogan, "Be all you used to be," made me want to prove that at age 58, I "still had it." This military-type workout was conducted outdoors five mornings a week. To successfully complete the program, one had to run a mile in less than eight minutes, do 50 consecutive pushups, 100 consecutive crunches and at least seven pullups. The calisthenics were no problem for me. But, although I was able to run a mile in just under eight minutes, I felt way more breathless than I expected to be. My wife pointed out that everyone else in the class was in their thirties, so I should feel great about myself, but I felt there was something wrong.
Over the next couple of months I contracted several colds that required antibiotics. In January 2000, I had the opportunity to go to Cal Ripken's fantasy baseball camp in Scottsdale, Arizona. Reliving my old baseball days with current pros truly was a fantasy. I had no problem with running sprints until I pulled every muscle in both of my legs. Unfortunately, I got another cold when I returned and my primary care physician sent me to a pulmonary specialist.
The pulmonologist listened to my chest, heard distinctive crackles and told me that he believed that I had Idiopathic Pulmonary Fibrosis. I listened in shocked disbelief as he told me that, without a lung transplant, I had two to three years to live. He recommended that I go to Inova Fairfax Hospital and get into their transplant program. As a husband and father of four (two of whom were under 16 at the time) I knew I had to do anything and everything to stay alive.
Shortly after that I met with Dr. Steven Nathan who confirmed the pulmonologist's initial diagnosis. However, he said that a lung biopsy was the only way to verify that it was indeed IPF. Dr. Albus performed the biopsy in March at Inova Fairfax. The results confirmed that I had the second worst type of IPF, meaning that a transplant would be my only hope. Dr. Nathan said that with this type of IPF (UIP), my health would probably decline slightly over a period of a couple of years and then would drop off suddenly. He couldn't tell me whether that sharp decline would happen over a matter of months or days.
In April, I went to the Mayo Clinic for a second opinion. After spending four days going through a battery of tests (including tests to be sure that my heart was in good enough shape to withstand a transplant), the Mayo Clinic doctors confirmed Dr. Nathan's diagnosis. At that point, I had to accept the reality of my situation and was satisfied that I was in the right place being in the pre-lung transplant program at Inova Fairfax. I went through the screening process and was accepted into the pre-lung transplant program. At that point I began to realize that my life would never be the same. For one thing my evening cocktail would have to become a thing of the past. I would have to lose a bit of weight and maintain that healthy weight level. As it turned out, these were the easy parts.
In April, I was put on 10 mg prednisone and one shot a day of interferon, which had shown some promise in a small study. No one can say whether it had anything to do with the medication, but I had a great two years. My pulmonary numbers were on a slight downward curve, but I was able to do just about anything I wanted to do during that period. I played golf several days a week and felt great. I felt so good that I began to wonder if (and hope that) interferon might help me avoid the transplant altogether. Because I have a blood type that is not the most common (A positive), the waiting list for a transplant was very short. Since I was feeling so good I did not want to get on the list sooner than I had to. I wanted to delay the inevitable as long as possible.
In March 2002, I was playing in a full court basketball game with my son and his team when I had a heart attack. Because of all the tests at the Mayo Clinic showing no heart disease, I was shocked to learn that I had a 95 percent blockage in one artery and had several arteries that didn't look much better. A stent was successfully inserted, and I was OK for the moment. However, I immediately realized that I was in "Big Trouble." I was concerned that having heart problems might eliminate my chances for the lung transplant.
Dr. Kiernan, a cardiologist in The Cardiovascular Group, consulted with Dr. Nathan. They felt that quadruple bypass surgery would put me back in the running for the eventual lung transplant. In late May, Dr. Burton of the Transplant surgeon group at Fairfax performed the surgery.
Recovering from the bypass surgery was more difficult than I had expected. By late July (two months after the bypass), my pulmonary numbers started to drop. I was put on the list for a lung and also started using oxygen at the same time. I was using oxygen every day but feeling good otherwise.
Suddenly in the middle of the night two weeks later my temperature spiked to 100.6. I could not get enough oxygen and passed out. I was rushed to the hospital and was told that I would be put under heavy sedation (a medically-induced coma) so that feeding tubes and breathing tubes could be inserted, giving my body the best chance to fight off whatever was causing this infection. The doctors speculated that perhaps I had a bacterial infection but Dr. Nathan was concerned that this might be the start of the sudden drop off he had predicted for my type of IPF.
In many ways, this episode was more traumatic than the heart attack or transplant. My wife was terrified when Dr. Nathan, who is normally so positive, was unable to predict a positive outcome. He could only say that my body had to fight off this attack or this could be the end. I was in this state for about a week when my temperature returned to normal, signaling that at least I had won this battle.
When I emerged from my sedated stupor, I was 25 pounds lighter, my muscles had atrophied tremendously, and I could barely hold a spoon. Given my condition, I was astounded two days later when Dr. Nathan said that had found me a lung. He said that they would have preferred to wait for a "perfect" donor, but this one would have to do. He was concerned that, if he was correct that the recent episode had been due to the IPF flaring up, I might not be able to withstand another similar episode, which he thought would surely follow. He coached me to convince the surgeon that I was physically able to handle the transplant operation. I had my doubts, but gave it my best shot. Two days later Dr. Rongione removed my left lung and replaced it with a new one. The operation was a success. In many ways, going through this 90-minute surgery was one of the easiest parts of the past four years.
Now the fun really began. I remained in the hospital for the next two weeks, over a week longer than is normal, because I had been in such a weakened condition going into the surgery. Two days after the surgery, the nurses want me to get up and walk. It became clear that they don't take no for an answer, since their training in this area of recovery of transplant patients is very good. I felt like an 90-year-old man (which is probably an insult to a lot of 90-year-olds who are quite spry). I couldn't move without support. Overnight I became an insulin-dependent diabetic. I had to learn to test my blood sugar levels and inject myself with insulin. I had to learn my meds: what each pill looked like, what it was for and the dosage. I was taking handfuls of pills four times a day. The medications and the dosage would change constantly until things stabilized months later.
Because I stayed in the hospital so long, I ended up with an infection which gave me severe gastrointestinal problems. Getting that under control made my recovery at home all the more difficult. In fact, I was re-admitted to the hospital after one week at home. This was the first of many post-transplant hospital stays. Some were heart related; others were due to infections. Miraculously, I finally became well in time for golf season. I was able to join my buddies on our annual Myrtle Beach golf trip. They were keeping a pretty close eye on me but said they wouldn't give me any strokes because I had so many new body parts and they were stuck with their old ones!
A big part of the post-transplant process involved working out with the wonderful ladies in Pulmonary Rehab and coming in for regular visits to the clinic. A stop for X-rays and spiro-tests with all of my friends in the Pulmonary Lab became quite enjoyable routine.
Through all of this, the pre- and post-transplant care from Dr. Nathan, Dr. Ahmad and their outstanding staffs has kept me alive. We transplant patients are so lucky to have these highly-trained professionals to look after every aspect of our personal care. I realize that without the donor, I would not be here. But I also know that the care and personal dedication from Dr. Nathan, Dr. Ahmad and their staffs is the reason I am able to live my life again. No matter what the reason for a hospital stay (even if it was not lung-related), Dr. Nathan or Dr. Ahmad were always the first to visit and check on me. As a transplant patient I have been treated like a VIP in the Emergency Room -- immediately whisked to a separate area and getting attention right away.
It has been almost two and half years since August 25, 2002, when I had my transplant. I am working out at a health club as much as I can. I play golf way too much, sometimes five days in a row. I travel often and our family spends our summers on Shelter Island (an island at the end of Long Island, New York). I returned to work this past Fall and I enjoy it very much.
I am a very fortunate man. My partner in life -- my wife -- has gone through every inch of this experience with me: nursing me along, doing so many things to make sure my care was 100 percent. It was not just me that had a heart attack, quadruple bypass, lung transplant and congestive heart failure. It was also my wife going through ever step with me. She might not have had the diseases, but she has had the experience of each. Just keeping up with the drugs in the beginning and the 24-hour care when I was first home from the hospital was unbelievably demanding. Anyone who plans to have a transplant must have a partner who can be with you every step of the way.
That is my story to this point. I expect a lot of great things ahead for me. There will be problems and maybe some setbacks, but I know that because of the dedicated Transplant Center doctors and staff I will get the best care possible going forward with my life. And for that I am truly grateful.
Jim Lawrence and family