Larry Williams’ Survivor Story

Larry N. Williams, Jr: It’s All About the Moment

• Name: Larry N. Williams, Jr.
• Location: Tufts Medical Center, Pratt 8 (Heart Failure Ward)
• Diagnosis: Congestive Heart Failure, AFIB, Cardiomyopathy, Heart Failure
• Transplanted: Currently #1 on Waiting List
• How I Feel Today: Blessed, grateful, and living it up!
• Occupation: CEO of Positive Vibes
• Age: 63

I am incredibly blessed. I live each day to its fullest and I’m grateful for every minute. I’ve also been a resident of Tufts Medical Center’s heart failure ward for close to eight months now—since July, 2016—waiting for a transplant.

I’m the guy with the disco light in his room, singing and dancing in my bed while vitals are taken at 3am. I’ve been seen grooving through the halls (with the help of a medical aide), rocking out to my iTunes. I’ve been nicknamed “The Governor.” I’m constantly talking to my fellow patients, reminding them to stay positive, and thank The Man Upstairs every day for getting another day on this beautiful Earth.

I’m Larry N. Williams, Jr. and this is my story.

It was summer of 1999, and I hadn’t been feeling well. I was more and more tired every day, but I couldn’t figure out why. Normal exertion was becoming taxing. By the time I’d get to the top of a set of stairs, I was huffing and puffing and could hardly breathe. Something was wrong.

I visited my primary physician, Dr. Timothy O’Mara, in Rhode Island, who heard unusual sounds in my heart and recommended I see a cardiologist. The cardiologist said my coronary arteries were clear, but diagnosed a leaking mitral valve.

So, in March, 2000, I had a procedure to find the leak. The surgery was smooth sailing. After a seven-day hospital recovery, I went into outpatient cardiac rehab for three months before returning to work. I was feeling good.

When I returned to my cardiologist the next year, he noticed my ankles starting to swell—not a good sign—so Dr. O’Mara referred me to Dr. Marilyn Weigner.

I had no way of knowing it at the time, but Dr. Weigner would become my partner on this journey. Like family. I absolutely love her. At our first meeting, she diagnosed me with CHF, or congestive heart failure (which I had never even heard of), and pointed out that heart conditions run in my family. One of my brothers had a mitral valve issue, one of my sons and one of my sisters had pacemakers, and another sister had passed away at 19 from cardiomyopathy, though at the time, I hadn’t realized that was the cause.

I couldn’t hold back my tears. I asked Dr. Weigner what I could do to get better. She admitted there is no cure, but said people can live many years with this type of condition. To help ensure I would be one of the lucky ones, she immediately prescribed different diuretics and medication, and began to closely monitor me.

When I saw her three weeks later, I was doing so well on the new med regime, she extended my visits to every six months. Dr. Weigner managed my condition beautifully. For a long time, everything was great. I really had no problems until late 2009, when she noticed I was getting a little weaker, and began seeing me every three months.

I was soon diagnosed with AFIB—an irregular heartbeat—and by June 2010, underwent surgery to implant a defibrillator and pacemaker.

Though the surgery went well, I continued to get weaker. Walking was becoming difficult, and I gradually found myself unable to carry out a lot of normal physical activities. Dr. Weigner decided to add heart failure doctor Dr. Philip Stockwell to the team, and I was put on a stronger diuretic to keep fluid retention (a constant enemy of CHF) at bay.

Despite this great team to manage my condition, things slowly continued going downhill. Just walking from the kitchen to the living room I would have to stop and rest.

On a trip to Germany with my family the summer of 2013, I had to walk a mile-and-a-half to our parked car and it felt like the longest walk in the world. I lost count of how many times I had to stop and rest. Despite a wonderful trip, I could feel my health sliding progressively south.

One day at work in April 2015, I toppled over in my chair. Within 30 seconds of hitting the floor, my defibrillator kicked in, I opened my eyes, and saw a face saying help was on the way. I was cold, clammy, and had no clue what was going on. They took me to Miriam Hospital. The doctor said I had the defibrillator to thank for saving my life. That was my first cardiac arrest.

In September, emergency crews rushed me to Rhode Island Hospital’s CCU twice—I was having trouble breathing due to fluid in my lungs. By now, I was on the heart transplant list.

While babysitting my grandkids on New Year’s Day, 2016, I suddenly couldn’t breathe. Back to Rhode Island Hospital I went. Dr. Weigner told me an ambulance was going to transfer me to Tufts Medical Center in Boston—it was time to get an LVAD.

Tufts MC’s surgeons had a tough time opening me because of my mitral valve surgery scar tissue. Though the procedure went great, post-surgery, I experienced pain I never could have imagined. My feet looked like Fred Flintstone’s—that’s how swollen I was from extra fluid—and we discovered I had developed diabetes. The doctors told me it was important to get up and change positions but I just couldn’t. I was absolutely sapped of all my strength. It took SIX of them—nurses and aides—to move me to the chair to sit down. (I should mention that I’m 6’10,” 260 pounds.) When the night crew came in, they had to use a hoist to airlift me back into bed.

The nursing staff on Pratt 8 (the heart failure ward) were, and are, amazing. They felt like family to me, and made me feel like family too. I worked so hard with the physical therapy team to build my strength to finally get up and walk.

Though I had phenomenal care and I count my blessings each and every minute, my ongoing heart struggle still took a toll on my nervous system. I started having occasional anxiety attacks during my recovery, so my doctors prescribed an anti-anxiety medication that I continue to take when I feel an attack coming on. It made such a difference and has helped me maintain my trademark effervescence.

By mid-February, my team deemed me strong enough to finish recovery at Spaulding Cambridge. That’s where I was the guy bopping down the hallway, doing my daily walks to the beat of Marvin Gaye, Isaac Hayes, and Kool & the Gang on my headphones.

I was released in March, and all systems were go. Occupational and physical therapists worked with me at home. I was committed to getting my body in the absolute best physical condition possible. We gradually built toward my biggest goal: tackling the 16 steps in my house.

I was determined. I took my time. I rested my head on my PT’s shoulder to collect myself as we went along, and I got down those stairs. At the bottom, I recharged for about five minutes, and then…I walked up those 16 steps like they were nothing. I poured all that I am into getting stronger. Mind, body, and soul.

Despite my great progress, the right side of my heart continued to weaken, and in July 2016 I was re-admitted to Tufts MC. Back to my old room on Pratt 8. Back to their excellent care. My home away from home until my heart transplant.

In September, realizing what lay ahead, my wife established a GoFundMe account to help me defray my medical expenses.

Around November, Tufts MC Heart Failure and Cardiac Transplantation Center Director Dr. David DeNofrio told me I was number one on the transplant list, for my size and blood type, within 800 miles. So, I decided it was up to me to have a blast while I wait.

I received a disco light which I use constantly. I have so much fun with the staff—always dancing and singing while they’re taking vitals. Between the nurses and aides, I say I’ve got 40 daughters and four sons up here on Pratt 8. This is my family now. I love them all.

And they love me back. When my birthday rolled around in December, a crowd of staff cruised in, sang me happy birthday, and gave me a beautifully wrapped digital photo frame. I hugged and kissed every one of them. To be honest, it’s been wonderful being a part of this community.

I’ve said it before and I’ll say it again: I’m just blessed.

 

Q&A With Larry Williams

In the hardest moments of your personal journey, what helped get you through?
Hands-down, my wife, my lady. She’s my friend, my partner…she’s everything to me. What I’ve been through…she’s been more than a trooper.

My guiding philosophy is: just think about the moment. That’s all we get in this life—just a moment. One moment you could talk to someone you love and the next, they could be gone. So, I tell my wife, I love her every time I see her; every time we speak.

Above all, you have to stay positive, because if you don’t, this will eat you up. My friend—a retired Superintendent of the State Police—told me I’m the strongest person he knows. I’m proud of that.

How did you hear of The HeartBrothers? Why did you join Team HeartBrothers? Please share anything else about your experience with the organization.
They came to me in fall, 2016. I had read their brochure. Team Director Mike Ashworth came to my room to talk to me, and asked me to become a HeartBrother. I said it would be an honor. They’re phenomenal. I love that they care to spend time with patients. My fellow HeartBrothers send me notes to keep the faith and stay strong. They share stories about how long they waited for their hearts. They visit or call me to see how I’m doing. I just stay strong because I know if I can stay strong for myself, I set an example for others.

As a HeartBrother, I talk to other patients about their lifestyles and what to expect when they go home. My goal is for them to understand they have to change things like their eating habits to achieve success. I tell them every experience is different. When they’re nervous or feeling down, I remind them to thank The Man Upstairs, and to stay positive. I really enjoy helping my fellow patients get through.

If you could share any message with your fellow HeartBrothers, what would it be?
Give your heart and soul as much as you can, to any individual that needs it. There are many who will turn their backs on you, but they will come back to you. It’s not what you are, but what you represent.

Is there anything we didn’t ask that you’d like to share?
I want to be one of the best HeartBrothers ever. I want to change patients’ minds for the better—help them improve their health, the way they eat, and remind them to never give up.

I have a battery-powered candle in my window that “burns” 24/7. I’ll let it burn until I get my heart.