My name is Tim Gallagher. I turn 40 years old in January. I am a husband and a father of four young children, and a son, brother, nephew and cousin. I graduated college and spent many years working in Chicago as a futures trader. I have had two heart transplants and a kidney transplant. My first heart transplant was in 1988 at Boston Children’s Hospital.
Playing youth hockey and Little League in the spring of 1988, I started to become easily fatigued — to the point where I became very weak and could no longer run around. By May, a visit to my pediatrician resulted in a trip to the Boston Children’s Hospital Cardiology Clinic on Fegan 6 and the first of many cardiac catheterizations I would receive in my life.
The results of that first procedure were shared in my corner room across from the nurses’ station on 6 East (the cardiac step-down at the time): I would need a heart transplant for cardiomyopathy. It was Friday the 13th. I was 10 years old.
Tim, before he was diagnosed with cardiomyopathy
The first of two heart transplants
In July 1988, I had the seventh heart transplant ever performed at Boston Children’s. Dr. Mayer was my surgeon. Incredibly, a friend, who was waiting for a heart at the same time, had received the sixth heart transplant the night before.
Up until this point, aside from asthma, I was a healthy, athletic kid. As I adjusted to my new reality, I noticed that many other heart patients at Boston Children’s had been born with congenital heart problems and had been going to the hospital their entire lives.
It was a humbling observation and made an impression on me — these other kids had been sick for a lot longer and likely had it a lot tougher, so I made the decision not to take a “woe is me” attitude. That is not to say I haven’t had difficult or stressful times over the last 30 years, but I’ve tried to keep things in perspective.
Throughout my life, I often have thought about my friend Joey O’Donnell who, just months before I was diagnosed, passed away after a courageous 12-year battle with cystic fibrosis. Talk about an inspiration.
Tim and members of the Heart Transplant team
20 years later: A kidney transplant, followed by heart transplant No. 2
In early 2007, I decided to move to Chicago with my girlfriend, who was in her first year of medical school. By the end of the year, I was not feeling well. I was working for a trading company on the floor of the Chicago Mercantile Exchange and began to take different routes in the morning, so my colleagues would not see me struggling to breathe on the few blocks from our office to the trading floor.
Early in February 2008, I woke on a Sunday morning and struggled to get from my bed to a chair in my living room. I called my girlfriend, who was at school studying for an exam, to say, “I feel like my heart is beating really slowly. I think something is wrong.”
I refused her offer to call an ambulance. She left school, picked me up, carried me to the elevator and drove me to the ER. My heart rate was in the 30s — a far cry from the normal range of 60 to 100 beats a minute.
I spent that week in the hospital. I had a pacemaker put in on Friday and was discharged Sunday afternoon, just in time to watch the 18-0 Patriots lose the Super Bowl — lousy ending to a lousy week.
In March 2008, I was starting to plan an engagement proposal for our annual vacation to the Cape over the July fourth week. In the meantime, my kidneys were deteriorating, a resulting side effect of the immunosuppressant cyclosporine. My immediate family members were evaluated for living donation. Although nobody was a perfect match, my brother was deemed the “best.”
On July 3, I had a routine blood test in the morning, and by 2:15 p.m. was back in the office reconciling the day’s trading activities. My bags were packed in the car, and my girlfriend was on her way to pick me up to head to the airport for a late afternoon flight. My colleagues knew my engagement plans, and I had already shipped the ring home to my mother, so I wouldn’t have to bring it on the plane with me.
2:20 p.m.: My cellphone rings. It’s the nephrologist calling to tell me my creatinine level is 9, and I need to come in to start dialysis, immediately.
I explained my engagement plans. Spent 10 minutes going back and forth with nephrology and cardiology. No dice.
2:30 p.m.: My girlfriend calls, “Are you ready to go?”
No Cape trip. No engagement. Straight to the hospital.
Tim and his brother, following his living-donor kidney transplant
The kidney transplant, which we thought would be months away, was suddenly scheduled for July 24. I underwent dialysis and plasmapheresis for the next few weeks, and my brother and immediate family flew out a few days before the transplant. Surgery was a success — my “new” kidney perfused immediately – but I was not feeling better.
The rest of that summer, I was expecting to get back to work, but my health was not improving, and I was in and out of the hospital. By the end of August, I was back in the hospital. I was told I was being listed for another heart transplant.
I had suffered a massive heart attack, likely resulting from kidney failure, and a second heart transplant was deemed necessary.
This time around, unlike 1988, I would wait entirely in the hospital. While there are plenty of physical things you endure as a transplant patient that are unpleasant, the hardest part was the mental toll. For almost a year, I spent long periods in a bed between the ICU, the step-down unit and back to the ICU.
My second heart transplant was performed on Dec. 8, 2008, by a surgeon who had trained with Dr. Mayer, which was very reassuring. I was discharged — and and finally proposed to my future wife — just 12 days later.
Words of wisdom
As a child, all of my medical appointments and medications were kept on track by my mom. I can’t even remember how many pills I used to take. A printed list of medication times and doses was taped up on our kitchen cabinet door, and my mom pre-sorted my meds weekly in those plastic dosage boxes you get at the pharmacy. If I spent the night at a friend’s house, my mom would sort everything in Ziploc bags by dose.
This was a precursor to the pharmacy I now use called PillPack. They mail you your prescriptions with a sleeve of perforated packs for the different days and times of your doses. I never have to sort pills, and it is so easy to travel without dozens of pill vials. I really recommend the service for both parents of kids and adults managing medications on their own.
Tim with two members of his care team
Managing medications and appointments is something that I took ownership of once I got my driver’s license at age 16. I would drive myself to appointments and talk to the care team on my own.
As I was getting older, I wanted to be as independent as my siblings and friends, and to a broader extent, yearned for privacy and the right to make my own decisions, as it related to my medical care. I’m glad that my family supported me in understanding the importance of this shift.
Living independently at college and beyond was always something I looked forward to as a kid. Taking medicine is something I have been doing daily for more than 30 years now. It is part of my routine, as regular as brushing my teeth. It is the most important thing I can do for myself, as I cannot control what comes next health-wise.
Worrying about the future
I’m sure I was told at one point, but when I was being listed for my second heart transplant, I really began to understand that transplanted organs simply don’t last forever. I made it 20 years with my first transplanted heart, which was a good amount of time. It was never something I thought about, and to be honest, a future transplant isn’t something I think about now either. Out of sight, out of mind on things I can’t control. There is no use worrying about it.
Limitations and challenges
The limitations I have experienced following my transplants have mostly been physical. As a kid, my growth was stunted from all the medication and maybe the shock to my body of a massive surgery, so I grew very late. I didn’t reach my current height — 6 feet — until I was almost done with college. I also had to deal with the reality that I was never going to make it as far in sports as I would have liked. I had started to realize sports were coming to an end for me a few years before they finally did, but it was still difficult when I had to walk away for good.
Tim with a member of his care team
Another difficulty I faced stemmed from my appearance. Within 18 months of my first transplant, I had two moderate rejection episodes. I was on heavy doses of the steroid prednisone and with all of its side effects, I was unrecognizable to myself. I was starting my first year of middle school, in classes with many kids I did not know, and kids can be cruel. By the next summer, I had come way down on the prednisone dose. I also started at a new school that fall and things improved.
In the summer before my senior year of high school, I had a severe rejection episode where I was admitted to the Cardiac ICU for about seven weeks. Upon discharge, I could barely walk, could not stand up from a chair (or toilet), or climb stairs. My body and muscles had completely atrophied. I missed the first six weeks of my senior year. Physical therapy helped, but it took a lot out of me physically, and I never really recovered. I managed to graduate high school on time, but as I headed off to college and met a whole new group of peers, comments about my appearance were now centered on my small stature. They were constant.
I wouldn’t let on that it bothered me, but that was difficult to do. It’s all water under the bridge now, but if I could tell my 20-year-old self anything it would be: Don’t let it get to you. It is an indication of their character; don’t let it change yours.
Tim with his mom and a member of his care team
As I write this, I’m remembering many anecdotes I have not thought about for a long time. There is so much more to my story over the past 30 years. Some sad, some funny and some makes me angry, but I think it’s important to note that for me, above all else, I strive to live my life on my terms.
My heart and kidney transplants don’t define me. Even when others have suggested otherwise, and transplant has certainly played a large part in my life, it’s a small part of who I am. What’s more, the relationships I have made through this all have been incredibly positive. Nurses would take me out for pizza as a child, come to my games and even attended my high school graduation.
To parents: Be there for your child, help them with their medication and give them space when they need it. I know it isn’t easy to see a child sick or suffering, but you have to make the best of it. I am a father to four kids now, and the last thing I want is for them to go through something like this. I feel very lucky to have my parents.
To young patients: Listen to your parents, take your medication and take time when you need it.
To older patients: When you are living independently, do all those things and, most importantly, live your life!
My life path was forever altered by my idiopathic cardiomyopathy diagnosis when I was 10 years old. I was given the opportunity to live life to the fullest and am truly grateful to the Boston Children’s Heart Transplant Program, and most importantly, the donor families that made it possible.
Tim with his family at the Pediatric Transplant Center’s Family Celebration Day