Heart Transplant Recovery #NickGotAHeart

I am 31 years old and currently under evaluation at UPenn in Philadelphia for a Heart transplant. I am on IV Milrinone 24/7 and suffer from Chronic Heart Failure, End-stage nonischemic cardiomyopathy, and low cardiac output syndrome. Currently, I am out on short-term disability, which only provides 60% of my total income, and unfortunately, I still must pay 100% of my bills on top of the mounting copays and uncovered and unplanned costs. Sadly, this is only the beginning, as the more research I do on heart transplants during the waiting period and actual surgery/rehab, the out-of-pocket costs skyrocket. My short-term disability ends in Sept, and possibly my employment as I do not qualify for FMLA. My filing for disability from the government has an estimated wait of 4 months and is not guaranteed, and not to mention, it will only be a fraction of the income I would earn. I have my significant other of 7 years, and we have 2 beautiful daughters, ages 4 and 2, as well as two stepsons, ages 12 and 8, so not only is this taking a financial toll, it is affecting us all mentally as we prepare for this life-changing event. When it rains, it pours. Just a few weeks into this journey, my father-in-law passed away tragically in a car accident, leaving us all in an emotional fog. The goal that is set is genuinely just a number. As we progress, our needs will change, and we will update. Please share and keep us in your thoughts and prayers if you can't spare to donate. I will post updates on my status and journey as it changes.

Here is a brief backstory for those who do not know me personally.

I was born with Hypertrophic cardiomyopathy, and it wasn’t until I was five years old that I was diagnosed after having my heart stopped three times. Luckily in those instances, I was given CPR and chest compressions to bring me back. I was placed on several heart medications, and when I was eight years old, I had my first pacemaker/defibrillator placed in my stomach as I was too little to have it in my chest. Growing up, I couldn’t do much physical activity due to my imperfect heart, but I would make it through multiple procedures and eventually got my defibrillator moved up to my chest.

After not feeling well in May of 2021, I went to the ER and was diagnosed with pneumonia. While there, they decided to check my heart with an echo and cardiac catheter. Then it was discovered my EF was at 18%, and I had low cardiac output, thus diagnosing me with chronic heart failure. I was placed on several new medications and stayed in the hospital for nine days. After a year passed and I did not feel much better, I had a repeat cardiac catheter, and it showed that my heart failure had progressed and advanced treatment was needed. I stayed another seven days in the hospital, where I was given a PICC line for Milrinone and sent home with an IV and pump that goes 24/7.

This brings us to where we are now, The Heart Group was seeing me at Lancaster General Hospital, and they referred me to UPenn for Transplant. Because I am otherwise healthy, a heart transplant is the best course of action as I have a strong foundation for recovery. The PICC line and IV Milrinone are like a bridge that should hopefully keep me healthy until a suitable heart is found. I am currently undergoing dozens of tests determining my grade/rank for transplant.