Alex Matos: TOF, 37


I was born on March 6, 1982 in Tampa Florida at MacDill Airforce Base, with CHD called Tetrology of Fallot, or TOF. I had 2 open heart surgeries at Tampa General then 3 more at All Children's Hospital. These are the dates and years the total of 4 open heart surgeries took place:


1.March 8,1982- first open heart surgery

2.March 13,1982- second open heart surgery

3.Sometime in November 1985- third open heart surgery

4. July 1998 I had my 4th open heart surgery which I remember very well I was 16 and the doctor told me I had a lot of calcium built up inside my valve which causes a lot of stenosis and reduces blood flow and decreases oxygen and after the open heart surgery I had a complication I started retaining fluid around my heart and had to go back in the o.r. and had a chest tube put in to drain the fluid from my heart and had that tube in for 3 weeks and when they pulled the chest tube out I was wide awake for that and I remember very well that they told me to just hold still and so I gripped the bed railing on both sides and took a deep breathe in and breathed out slowly and tensed up and watched them pull the chest tube out no numbing shot no hell just pulled the tube straight out and what was crazy I saw this long blood stringy thing on the end of the chest tube that was pulled out and I asked what the hell is that and the doctor said Alex this is a blood clot and that I'm lucky it didn't break loose in my body and knock out my other kidney which I already lost one from a blood clot before. And he said if it went to my lungs, heart or brain I would have died. 


I had my 5th heart surgery which was done through a catheterization and that took about 5 hours. They put in a Melody valve in and stitched me up and stayed in the hospital for about 2 and half days and went home with no pain meds and been going non-stop since. I was on blood pressure meds and medicine for my one kidney and blood thinners for about a year.


I have a regular diet and eat everything I like & I stay active by walking, riding a bike, walking a lot at work, using the work gym, and helping people move. I walk everyday at least 1 to 2 laps around the the neighborhood and I'm literally waking 10 to 12 hours a day and I don't sit still and I don't burn out except one day a month I crash.


I work at the Tampa VA hospital as a medical supply tech and do deliveries throughout the hospital and have worked there for 14 years! My Dad, Nelson Matos is Puerto Rican and a U.S. Army Veteran for 20 years of service and worked 26 years at the Tampa Veterans Hospital. And my mom Jeana Matos is Korean and worked at U.S.F and are loving parents. My parents support everything I do which is awesome. 


My Adult CHD Doctor is Hector Fontanet and he is very knowledgeable and patient and doesn't jump to conclusions, he does his research and provides the best care for his patients that would suit their medical needs.Recent changes in my health was in 2015 & 2016 I noticed I was sweating a lot and got winded doing just about everything. Since then I have been diagnosed with emphysema, which you can hear more about on my first video with Stephanie Romer, Conversations with CHD. At 8 years old I was diagnosed with A.D.H.D. which I made a video about and wrote an article about so please check them our to learn more!


My hobbies are collecting vintage records, meeting musicians, and helping as many people as I can and going to concerts all year round and traveling for vacations.


My favorite quote would be live life to the fullest and don't let anyone tell you that you can't accomplish something. Anyone with CHD despite the challenges you face you are a unique beautiful person and don't let anyone drag you down whether it's judging you or bullying or doubting your abilities. Live your life the way you want to and most importantly love yourself. 

I wish we had the internet because back then we had to completely rely on doctors 100% of the time.


I'm so blessed to have met Stephanie Romer at the BUSH concert at the Midflorida Credit Union Amphitheatre this summer. She is extremely inspiring to me and such an amazing friend and we relate and connect on so many levels and I'm proud to call her my friend. She is also starting an Adult CHD group here in Tampa in November (2019), if you are reading this and local or visiting you have to check it out! You should meet her, she is amazing!!!!!


She used to do YouTube videos regularly but stopped for being sick and busy too much. However, now that there's two of us we are bringing them back and talking about CHD Stuff, so send in your thoughts and questions! Parents, Teens, or Adults. We will answer or talk about anything! Email: Stephanie@CHDLegacy.com to send in any thoughts or questions you do not want to post and you're able to remain anonymous.


I hope to see you in Tampa some day, if you're here for a visit reach out to us and see if there is a CHD meeting going on while you're down here. We'd love to meet you!


Alex Matos

CHD Advocate

TOF: 37 yrs old

Tampa, FL






Don' forget to check out our first video (just click to watch!) to get to know more about me!


The second video is about my ADHD and coffee!


If you have a CHD son or loved one, or are a CHD guy I really encourage you to reach out to me and ask me anything!




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