Lisa Vecchione

How breaking my nose may have saved my life

Lisa Vecchione is from Springfield, New Jersey.  She was diagnosed with HCM at the age of 31. She found out she had HCM when she had broken her nose at work and went to her doctor where they noticed she hadn’t had a physical exam in a while. She explained that breaking her nose potentially saved her life. Upon examining her, they found her EKG was wildly abnormal, and the doctor told her that she was either currently having a heart attack or had Hypertrophic Cardiomyopathy (HCM). Further testing confirmed she had HCM.  

The diagnosis was scary for her, especially because she initially didn’t know what it would mean for her or if it would greatly affect her lifespan. Lisa and her boyfriend planned a wedding within three months and married one another immediately because they weren’t sure how long she had left. 

Years progressed as did her HCM. She had HCM without obstruction, she had two ICD placements and tried many different medications hoping to find anything that would actually help her to feel better. Unfortunately, many of the medications she tried did little to help her avoid the extreme fatigue she felt, and the buildup of fluid in her body. It was hard for her to do anything she enjoyed as she would grow tired so quickly, which really impacted her quality of life. Lisa expressed frustration with the lack of options that are available for people with non-obstructive HCM, and she even tried clinical trials of medications to see if anything would help. 

Things took a turn for the better when Lisa found the HCMA. She expressed extreme gratitude for Lisa Salberg, HCMA’s CEO and Founder, who was able to provide her with guidance about life with HCM and available treatment options. The HCMA provided her knowledge about different medications and procedures and even helped her understand what tests to request and how to locate healthcare professionals specialized in HCM management.  Her father had been having heart issues since he was in his late 30s and had been misdiagnosed by many doctors. With the HCMA’s information guiding her, she was able to get her father the correct diagnosis at the age of 69, although he unfortunately passed away when he was 70 due to complications of HCM. 

In her own journey with HCM, Lisa was heading down a transplant pathway.  She chose to have a gastric sleeve operation in order to put herself in a better place to receive a heart transplant. She was able to get a healthy donor heart in June of 2022. Lisa now feels as though she can have a life again, and without having the debilitating fatigue that had accompanied her HCM up until the transplant, and is so grateful and happy to be ‘living again.’

 

Please share this story to bring awareness to Heart Month!

 

To learn more about accessing care at a HCMA Recognized Center of Excellence, go to https://4hcm.org/center-of-excellence/

To learn more about hypertrophic cardiomyopathy (HCM), go to https://www.4hcm.org.

#4HCMAwareness #HCMStrong #HCMDay #4HCMWarriors #4HCM

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Update from Lisa - December 2023

I am doing amazing. I am so blessed. On the 20th of December, I will be one year and six months since my heart transplant. George, (my new heart's name) and I are doing fantastic! We are two peas in a pod! It is incredible to sit down and think that I have my life and someone else's heart keeping me alive! I am so grateful. I have had no signs of rejection. All of my biopsies have been great since I was released from the hospital. I am so grateful to be alive! To be able to take a deep breath, not to be short of breath, and not be in constant agony with angina. I was so used to not living. Now I have to learn my limits, lol! I am so grateful to all of the Nurses and Doctors at NYU LANGONE NYC for all the excellent care I received and continue to receive. I wake up each morning and Thank God for my Donor, my Nurses and Doctors, and HCMA fighting for all of us. With them, my husband, family, great friends, and fantastic neighbors, my 1st year and a half has been so amazing!! I've made it to 50, which I was not sure would be possible. I love having energy, dressing up in costumes, attending outdoor concerts, volunteering, etc....back to some of my old shenanigans. 

Also, since getting my new heart, I have finally been allowed to start medication for my psoriatic arthritis. Previously, doctors felt my heart was too weak to dare try. New life and a great heart, I'm gonna keep pushing forward! 

 

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