Just 8 weeks ago I went to the hospital with SOB and other symptoms. I was in congestive heart failure just 3 weeks past my 43rd bday. My EF was 12 and the doctors were really concerned. They did so many different tests I had to look at my chart to figure out what was going on. I spent 5 days in the CCU with different doctors and specialists coming through regularly. I felt fine within 20 min of arriving at the ER so I really confused them when they would come to my room. Apparently one doctor said I should be on a ventilator according to my chart yet I was up walking around. The only thing they could see was my EF was dangerously low and fluid build up in my chest. Other than that every other test was normal. This prompted a Cardiac MRI, I do not recommend these to anyone as they suck! 

Now I had a diagnosis, Dilated cardiomyopathy with Advanced Bi Ventricular NonCompaction and Congestive Heart Failure. Apparently it’s an irreversible, degenerative, genetic defect that results in sudden cardiac death in more than 75% of the patients diagnosed within 3 years and almost none make it past 5 years. That’s a lot to take in considering I have never been to a hospital or even a doctor office for more than a cold. 

Immediately I was presented with a barrage of meds and diet/fluid restrictions. Before leaving the hospital I was fitted with a defibrillator vest. I just had surgery to get an S-ICD. I did the genetic testing and had my son and siblings all tested. Everyone else was clear of non compaction so that’s good news. Now for the next steps. 

Background- my maternal grandfather passed at 47 with heart failure, my mother passed at 35 with heart failure, both of my mom’s sisters diagnosed with A-fib and congestive heart failure in their 50s and have been under dr care for more than 15 years, my oldest sister collapsed at work and was revived 3 times in the ambulance due to v-fib and CHF at 45, my other sister has been undergoing treatment for a-fib since 36. As you can tell our gene pool is bad for the heart. 

All this history prompted even more testing and now I’m getting ready to get a referral to a transplant clinic because the doctors are not confident I can survive much longer in my condition. 

To say I’m overwhelmed would be a gross understatement. I am a divorced father with one 13 yr old son whom I’ve raised primarily by myself since he was less than 2. I don’t have a significant other at home so I don’t really have anyone to go to outside of family and coworkers. I don’t know where to go next but I can say I’m already tired of all the “stay positive” or “God will get you through” or “you have people who need you to be strong” advice. I guess aside from venting I just want to connect with some people who are experiencing similar issues. Maybe get some advice on what I should or shouldn’t do next. Warning- I’m atheist so the God remarks are more offensive than helpful.

I know this is extremely long and I apologize.