Transplant Talk

My Third Anniversary

By Paul Feld

Always take care of yourself, and never take your health for granted. This is the lesson I learned in the past 50 days. Since my transplant three years ago, my post transplant quality of life has been very good, and I have been extremely blessed. Sure, there have been some bumps in the road, both big and small, but I’ve been able to live life to the fullest. This year had been especially trouble-free.

In my clinic visit just two weeks prior to my anniversary, I had asked my pulmonologist to remove from my chest the port that was implanted almost four years ago. It hadn’t really been used all year, and I was feeling great. He said they could do it, but my FEV1 numbers had been down about 10% overall in three consecutive visits, and he was mildly concerned. He suggested a bronchoscopy on the date of my third anniversary, October 23, 2007. Since my lung function was still about 120% of expected levels, and I was feeling just fine, how could I argue? Besides, I’ve had about 25 bronchoscopies since my transplant anyway, so what’s one more?

So began the month from hell. For me, my bronch on my anniversary date had gone just fine. As usual with my bronchs, they give me Versed as my anesthetic and my short term memory from the time of injection just disappears from my brain for the rest of the day. This time around was no different for me. My wife, Kristi, saw things differently, however. I was not asking the same questions over and over again, and I just wanted to sleep. Even my appetite was minimal, when I’m typically scarfing down anything they put in front of me.

When I got home, I went to bed, and slept and slept and slept. Generally when I have an early morning bronch, I live the day, forget the day, and am ready for work at 7AM the next morning. I’ve probably done this routine 90% of the time. This time around, however, I was extremely tired, and just wasn’t feeling normal. I did get up and worked my typical day, but I did not spring back to life as I usually do. The next day was even worse. I began running a fever that got worse as the day went on. I would take some Tylenol for some temporary relief, but a few hours later, it would return. I was just miserable, and endured this for three more days.

On October 29th I had a chest x-ray, which revealed pneumonia in my left lung. That same day a preliminary culture return from my bronch showed I had a staph infection in my right lung. Fortunately for me, the staph was penicillin sensitive, and my physicians immediately started me on IV therapy. So for the first time in over a year, my port-a-cath was accessed for a real problem.

The IV therapy did not seem to help much. My fevers continued for several more days, more pronounced at night, but my physicians insisted we were on the right track. I just needed to let it play out. I returned to work on November 5th, feeling significantly better, but still with the occasional mild fever at night.

The next day we had unusually nice weather in town, and I decided to walk a few hundred yards and pick up a sandwich for lunch. About half way to my destination, I saw 50 yards of free sidewalk, and decided I’d jog to the end. I’m usually jogging 2-3 miles a day anyway, but I had missed about 10 days due to my illness. This was a quick opportunity to start to get back on track. I zipped down the sidewalk to the end, and found myself breathing extremely hard for a jog that short.

Suddenly, I got this sensation that I had not had in three-and-a-half years, and it was not a pleasant one. Anyone who has had frequent hemoptysis (coughing up blood) knows this feeling. I sat on the curb and waited a few seconds for the inevitable. A quick, short spit to the ground verified my fears. For the first time, my new lungs were bleeding, and thoughts of my pre-transplant life filled my head. This time, however, the center of my chest felt extremely painful, and every breath hurt. After thinking of ways to calm and settle myself down, I was able to walk back to my office at work. Every breath still hurt, and my chest was pounding. I called my transplant coordinator immediately, who got my physician on the line. He said I had two options: Get to the hospital for immediate check-in, or come by his office for a chest x-ray and immediate evaluation. I chose the latter and got an x-ray within 30 minutes, and got to see him within 45 minutes. The diagnosis was clear – I had a left lung collapse.

He verbally prepared me for the next 24 hours, and got me a room in my favorite hospital. Coincidentally, it was the very same room I was in post-transplant three years earlier. I felt like I was reliving the past. I lay in bed for the first hour in my room, and re-lived the last three years. I realize what an extremely lucky man I have been. I had done things in those three years that I had not done in the last 30 years. I’ve grown closer to God, my family, and my friends, and I’ve done all this while feeling great. I had memories of running the track with my friend, Isa, this last summer. We’d walk the straight-away’s and sprint the curves over four laps. How great that felt, both the exercise and camaraderie. Now suddenly, I had a collapsed lung, and visions of a downhill spiral ran rampant in my mind. What will be, will be, I thought, and the future is in His hands.

My chest tube was put in that night. Ah, the memories of chest tubes post-transplant. None of them are fond memories. They hurt going in, they hurt being in, and they hurt the most being removed. Percocet became my best friend for the next four days, as my lung tried to refill the space it once occupied. On the fourth day my chest tube was pulled, and after a few hours, I was sent home 10 pounds lighter, with a sincere verbal dialog about not doing anything to stress my precious gift for the next four weeks – no running, no jogging, no thinking about jogging; you get the idea. I needed to hear this, because I am who I am, and my docs know me. If they are on the fence with anything, I’m jumping over it.

The last couple of weeks I’ve been in recovery mode. I’ve found out my chest tube probably should have stayed in another day, as I have a pocket of air/fluid behind my left lung that will take weeks to dissipate, and it really makes a chest x-ray look bad. I’m feeling much better again, and can’t wait to start exercising like normal.

I now look at this whole experience as a reminder of the wonderful gift I received three years ago; this gift that turned a weak, skinny, breathless man into a strong, confident, vibrant human being. Someday I’ll return to the shriveled being I once was, but this wonderful gift continues to extend my existence and quality of life, and I will be forever grateful to my donor and his family for their decisions in October, 2004.

Paul Feld had bilateral lung transplant in 2005. He is a Director of USACFA. His email is: pfeld@usacfa.org