Name: Kyle Williams
Location: Syracuse, NY
Profession: Environmental Engineer
Diagnosis: Dilated Cardiomyopathy, August 2011 (Age 29)
Transplanted: December 10, 2014 (Age 32)
In the Beginning…
“Man, I’m getting out of shape,” I said to myself.
It was the summer of 2011, and I could sense something was off. I had noticed some slightly labored breathing while I was moving about, climbing stairs and doing some outside work around the house one weekend. I was an active 29-year-old, going to the gym four days a week, playing in softball and basketball recreational leagues, golfing and working full-time as an environmental engineer. I had always tried to take care of myself. I was a three-sport athlete growing up—football, basketball and baseball—and once I got out of college and into the work force I tried to continue staying as active as possible.
“It must be some sort of lung infection,” I thought.
A friend’s wife had recently had similar symptoms—with an ultimate diagnosis of a fungal lung infection. I started Googling fungal infection, lung infection, anything to try and match a diagnosis with the symptoms I was feeling.
I went to a doctor first thing Monday morning and told him my symptoms and what I thought it might be. I didn’t have a primary care physician at the time; it was my first time meeting this particular doctor. He thought it could be asthma. He took some chest x-rays and sent me on my way, prescribing an inhaler, telling me it should improve my symptoms.
It did not.
On Wednesday of that week I spiked a fever. I was having trouble sleeping at night to the point where I was desperate to get any rest. I received a call from the doctor’s office on Thursday telling me they wanted to have me come in to get a CT scan of my chest. They offered no explanation, and I did not question why. I got out of work early on Friday to get the scan. I had never had one before. I have had many since.
At around 6 pm that Friday night, I received a call from the doctor who reviewed my scan results. He asked how I was feeling. I thought it odd that a doctor would call me that late on a Friday night.
He did not come right out and say anything definitive on the phone, but said if I felt any worse I should go to the ER to get checked out, and that he had scheduled me another appointment with my doctor on Monday.
That night was the worst night yet. I did not sleep at all. I woke my wife Sara up and told her I felt like I was dying. I was only partially kidding, but I did feel worse than I had ever felt in my 29 years.
That Saturday morning I went to the local urgent care. They asked my symptoms and I said “shortness of breath.” …I guess those are the magic words if you ever want to be seen quickly by a doctor.
The doctor saw me, and came back with the results of the CT scan. He told me my heart was enlarged, and that I had to get to the hospital immediately. I was scared, but didn’t grasp the gravity of the situation yet. I called my wife to tell her I had to be taken to the emergency room; I didn’t understand why I couldn’t drive myself and had to go by ambulance.
I met my cardiologist—who I have to this day—Dr. Joseph (“Joe”) Battaglia, in the emergency room at Crouse Medical Center in Syracuse, New York. I saw my heart rate on the monitor ranging from 120-140 bpm.
He told me my heart was enlarged and was not pumping efficiently. After numerous tests, I was given a diagnosis of dilated cardiomyopathy. The cause was likely some sort of virus that attacked my heart. The virus was already out of my system, but once the damage was done, it was done. It’s a scary thing to think about, even now. I maintained hope my heart would get better.
For me, it never did.
During my initial hospital stay I had some abnormally fast (and potentially harmful) heart rhythms, known as ventricular tachycardia (VT), caused by damage to my heart. When I left the hospital I was given a Life Vest to wear (which monitors the heart rhythm and can deliver a shock, if needed).
To top it all off, a week prior to going into the hospital Sara and I found out we were going to be parents for the first time. Talk about a life-changing seven days…
I had a hard time after I was diagnosed. Heart failure sounds like such a serious condition, and I never wanted to hear those words. Physically, I felt okay. The hardest part for me was mental.
To go from a perfectly healthy 29-year-old, to a 29-year-old living with heart failure was a tough thing to wrap my head around. The heart is more than just an organ; it represents love. It seemed like every song I heard on the radio had the word heart in it. I didn’t know how to handle living with a damaged one.
A couple months after leaving the hospital, the Life Vest I had been wearing gave me a life-saving shock in the early hours of the morning while I was asleep.
If I hadn’t been wearing the vest that night, my story would have ended there.
Thankfully—although quite traumatically for me and my wife—I was shocked back to regular rhythm, was taken by ambulance to the hospital and was implanted with an internal ICD later that day.
A few more months rolled by. In April 2012 my daughter Ella was born, which gave my life new meaning and perspective. She was the angel I needed; her birth made me focus on her rather than feeling sorry for myself. From that point on, I managed to live with my condition without too much trouble. I wanted more than anything to be “normal” again. To have my friends and family ask, “How’s it goin’?” rather than, “How are you feeling?”. I hoped to put my condition to the back of my mind, and just live life. I continued to work full time. In April 2014, Sara and I welcomed our second daughter Eva.
Then, one morning in the summer of 2014, I woke up and knew something had changed. I felt short of breath while playing around with my girls. Ella was now 2 and Eva was several months old. The shortness of breath continued throughout the summer.
In September, I came down with a fever and had a hacking cough. One Saturday afternoon, I was lying on the couch watching a Syracuse football game, and was shocked by my ICD numerous times. I was brought to Crouse Hospital for a third time by ambulance.
My heart function had dropped dramatically. Over the years, Dr. Battaglia and I had talked about the possibility of needing a heart transplant someday, but I never dreamed the need would come this quickly – just three years from my initial diagnosis. To tell the truth, at the time I didn’t want to even think about it. I didn’t want my heart to fail me, but there was no way around it. I was trying to do everything right—low sodium diet, taking my meds on a regimented schedule—but God had other plans for me. I remained in the ICU for a couple of days while my condition deteriorated.
Shipping Up to Boston
As fate would have it, Dr. Battaglia’s daughter was a cardiologist fellow at Tufts Medical Center in Boston, one of New England’s premier heart transplant centers. They made arrangements to transport me by ambulance the 300 plus miles from Syracuse to Boston to continue my care and be evaluated for a heart transplant.
Once I arrived, I was brought to the cardiomyopathy unit where I was put on IV medication to help my heart function. I went through the barrage of tests for heart transplant evaluation. I was also told I would need an LVAD (left ventricular assist device) as a bridge to transplant.
My heart could no longer do it on its own.
Dr. Duc Pham did my LVAD surgery about one week after I arrived at Tufts MC. After some serious training on how this “thing”—which now was essentially keeping me alive—works, I was discharged. Over the next month, I—along with the gracious assistance from friends and family—made the drive from Syracuse to Boston for clinic appointments. Sara regimentally and carefully performed my LVAD entry-site dressing changes. LVADs can be a wonderful thing.
I felt a whole lot better with it, but at the same time was nervous about living with this mechanical device. I knew I would not be able to do with the LVAD some of the things I loved to do previously, but my biggest worry was that I would have to be extremely careful around my two little girls so as to not damage the driveline that connects the external controllers to the internal pump.
In mid-November, two days before I planned to make my return to work, I was re-admitted to Tufts MC because of blood clot concerns. (Clotting is one of the known complications with LVADs. Clots can cause disruptions with the internal pump.)
I spent Thanksgiving in the hospital with my family the staff at Tufts MC and the friends I had made there. I was given IV medication for the clots. December came and I was preparing to settle in for the long haul in my Pratt 8 hospital room. No one can predict when a new heart will be available. I was a “Status 1A”, the most urgent transplant listing status. I was praying a heart would become available before the LVAD pump would have to be exchanged (where they take the compromised pump out, and put in a new one). I wanted the next open heart surgery to be the “big one”.
Encouragement came when I was notified I was the “backup” for a donor heart; should the first person not be able to receive it for any reason, it would come to me.
On December 10, a little after midnight, I was awoken by a group of the wonderful nurses I had over the course of my hospital stays at Tufts MC.
They said, “Kyle, we have a heart for you.”
How is life post-transplant?
December 10, 2014 is the beginning of a new story for me, one that I am still writing. I look at life a little differently now. How could I not? I’ve been given a great gift and consider myself very lucky. I take time to thank my donor and family every single day. Like many heart transplant patients, I’ve had my share of ups and downs, but am currently feeling great. I work full-time as an environmental engineer with the same company I’ve been with for more than ten years; I exercise, run, golf, climb mountains, and chase my almost 5- and 3-year-old little beauties around daily. I’ve learned to live more in the moment and to be mindful of my life and everything around me. I’m still working on getting better every day.
What helped you through it all?
One cannot do this alone. The support of my family, friends and co-workers was overwhelming. Friends visited while I was in the hospital and made the trips with me for biopsies and appointments at Tufts MC post-transplant.
The nurse and medical staff were also extremely helpful along the way. Having wonderful, competent and caring experts in your corner is invaluable.
A lot of people say that in situations like the one I was in, it can be just as hard or harder on the family of the patient. I definitely agree. My beautiful wife Sara was the one who had to manage her job, our house and two girls. I’ve put her through a lot of stress over the years, and somehow she still loves me. My parents and siblings also made sacrifices and many trips to Boston.
Finally, getting to know members from Team HeartBrothers while I was in the hospital and talking to people who have all been through it before made so much of a difference in my attitude and outlook. We all share a common bond. It will always connect us.
I will forever be grateful for the kindness and generosity shown to me during this time of my life.
What advice would you give someone who finds him/herself in a similar situation?
Be an informed patient. Get counseling if you feel like you need it. I never did, but looking back I think it would have beneficial at numerous points along my journey. Seek out and talk to people who have been through it before. Don’t worry as much as I did. Listen to the experts.
Eat healthy, listen to your body, try and stay active and exercise to your comfort level. Be a good person (just general good advice). Enjoy life.