HeartBrothers Foundation

DONATE
  • Home
  • Who We Are
  • Programs
  • Team HeartBrothers
  • Events
  • Resources
  • Heart News
  • Our Blog
  • Donate

March 5, 2017

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
Larry Williams - Team HeartBrothers

HeartBrother Larry Williams

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.

 

 

 

Filed Under: About us, Heart Failure, Heart Transplants, Survivor Stories, Team HeartBrothers Tagged With: Larry Williams, Team HeartBrothers, Tufts Medical Center

Comments

  1. Bob "Bullet" Rossi says

    March 6, 2017 at 1:14 am

    My lifelong friend Larry “Big Dog” Williams is a person who, if one heart became available, would offer it to someone else. Larry needs a specific size heart because of his giant stature which is ironic because he has a huge, caring heart. I love my friend and he has been waiting for so long benefiting all those who hear his words of encouragement.

    Reply
  2. Robert L. BaileyV says

    March 6, 2017 at 1:19 pm

    Sending prayers for you my Brother

    Reply
  3. Darlene Costa says

    March 6, 2017 at 5:54 pm

    What a wonderful outlook you have and I am sure that will help in recoery when you get your new heart. It’s going to have to be a great one to replace the wonderful soulful heart you have. Stay strong . We are all praying for you . xo

    Reply
  4. Douig Ryan says

    March 6, 2017 at 9:10 pm

    Larry, You got me crying here after reading your beautiful story. You’ve got to be the kindest, most loving and beautiful person I know! I do hope you successfully touch and influence each and every heart patient and staff member with your message of hope and faith and love of life itself. God Bless You, and know that you’ve been at the top of my daily prayer list and will remain there until you get your new heart to replace the beautiful one that’s gotten you to this point in time. God Bless You Larry, Your Friend, Dougie Fresh.

    Reply
  5. Rich Lebenson says

    March 6, 2017 at 11:20 pm

    I’ve known Larry since he was about 8 or 9 years old, and helped coach him in basketball, at Pratt Institute. He’s one of the nicest, most talented people I’ve ever met. It’s particularly ironic that Larry needs a new heart, given that he’s always had the biggest heart of almost any athlete I ever met. My prayers are with Larry, along with his hundreds of friends who love him dearly. I just hope he gets a successful transplant as soon as possible.

    Reply
  6. cassandra Davidson says

    March 7, 2017 at 12:15 am

    Hi Larry
    This is Cassandra Davidson from Lafayette Ave I dated your brother many moons ago
    My prayers are with you and the family
    God Bless

    Reply
  7. Margaret & Jim Carroll says

    March 7, 2017 at 12:18 am

    Reading your story and having the pleasure of being your friends is a privilege. You are one special and strong man, Larry!

    Reply
  8. Polly says

    March 7, 2017 at 12:30 am

    Larry Williams is a patient on the floor where my daughter works and SHE LOVES HIM. Stay strong, Big Larry, our whole family is rooting for you.

    Reply
  9. Amy says

    March 7, 2017 at 2:47 am

    Thank you to Larry and the HeartBrothers for this wonderful article. Stay strong, keep that positive attitude and know we are thinking of you and praying for you!

    Reply
  10. Cindy Jones says

    March 7, 2017 at 2:23 pm

    This is a wonderful article befitting a wonderful man. I have known Larry for many years and he is a hero amongst us. He is a man that will share his strength and positivity with others in any situation that he can. I have seen him change people’s attitude in one meeting, after one talk. Knowing Larry is life changing….if it isn’t, you are not paying attention. I am so proud that I have the privilege to call this man my forever friend. Our thoughts and prayers are with you every day.
    Love,
    Cindy and Gary

    Reply
  11. Christine says

    March 7, 2017 at 3:36 pm

    We are SO blessed to know you!

    Love~
    Christine & Sharon

    Reply
  12. TC says

    March 7, 2017 at 7:40 pm

    What a beautiful story and as always with Larry the spirit of my dear friend, teammate and brother is so motivating and inspirational. All my love and prayers

    TC

    Reply
  13. Charles Collins says

    March 7, 2017 at 7:42 pm

    Larry Williams, what an inspiration you are! It is a privilege to be your friend all these years. GOD BLESS you and keep you well until your gift comes. We all send our best from EP. Stay strong brother, love you

    Charlie Collins

    Reply
  14. Fred Moore says

    March 8, 2017 at 1:44 pm

    Larry,
    I loved seeing your face the same light in your eyes you have always had. God is with you, As a young man at Pratt you have always been a shinning example of the most positive person in the room.
    Love from me and my family.
    Fred Moore

    Reply
  15. Doreen Williams says

    March 11, 2017 at 5:12 am

    Larry , Look to the hills , Your help is there. I know God has taken this battle personally., like all these others. I shall stay in the knee of prayer. Love you❤️❤️❤️

    Reply
  16. Lloyd Archer says

    March 12, 2017 at 8:02 pm

    Hey Larry I’m from Brooklyn you guys use to call me Wink. So glad to hear you are doing well . My you stay healthy and God bless you and the family..

    Reply
  17. Karen Greene says

    March 13, 2017 at 12:07 am

    Dear Larry,

    I have always looked up to you. You are an inspiration of hope. Be well.

    Reply
  18. Bethany says

    July 11, 2017 at 1:04 am

    Think of you often,pray for you every day. God is watching over you .Tyler is watching over you too. Stay strong. You have so much to give

    Reply
  19. Debra Carmody says

    September 6, 2017 at 9:48 pm

    Sending hugggzzz. Prayers to you. You are as n inspiration .

    Reply
  20. Tony Rosato says

    January 24, 2018 at 7:06 am

    Dear Larry,

    I came across your story as I was looking through the web. I hope and pray that you have a transplant very soon and that it is successful.

    I imagine you don’t remember me from Pratt Institute so many years ago. You were a freshman (as I recall) – only 18 years old – and preparing to play for Pratt’s basketball team (coach was Tony Missere and the assistant coach was Larry Provette). I was a junior when I first met you.

    I remember your great kindness to everyone at Pratt, and your very upbeat and positive outlook. After reading your story, I see that this hasn’t changed at all. I wish you well.

    Tony Rosato (Pratt Institute class of 1975)

    Reply
    • Emily Lalone says

      January 24, 2018 at 2:48 pm

      Tony – THANK YOU for sending this note through. We have forwarded it directly to Larry. We know this will brighten his day – – -as he brightens so many others’ days. <3

      Reply

Leave a Reply Cancel reply

Your email address will not be published. Required fields are marked *

This site uses Akismet to reduce spam. Learn how your comment data is processed.

Categories

  • About us
  • Annual Meeting
  • Caregiving
  • Events 2016
  • Events 2017
  • For Family Members
  • Fundraisers
  • Guardian Angels
  • HB Events
  • Heart Failure
  • Heart Transplants
  • Home Page News
  • Home Page News 2
  • LVADs
  • News
  • Nutrition
  • Survivor Stories
  • Team HeartBrothers
  • Videos

HeartBrothers Programs

  • Heart of Survival
  • Team HeartBrothers
  • Survivor Stories
  • Organ Donation Awareness
  • HeartBrothers Blog
Dr. David DeNofrio talks
about Heart Transplants

Submit a Heart Prayer

Sign Up For Our e-Newsletter

Fill out the form below and we’ll keep you updated on the latest developments at The HeartBrothers Foundation.



Contact Us

The HeartBrothers Foundation
(800) 262-0931

Corporate Brochure
Tax Information
Privacy Policy
Terms & Conditions
Refund Policy

We Need Your Support!

ONLY LOVE IS REAL.
Please donate today.
Every single dollar counts.

DONATE

Submit a Heart Prayer

Copyright © 2019 HeartBrothers.org · Site Design: Phoenix Massey Studio · Log in