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Medical Insurance

I was first diagnosed with a heart problem at the age of 12, and because of that, through the years my mom fought for me to get disability/medical insurance to insure I was properly cared for. Which worked out great in my favor all my young adult life. It even played a major role in my life when it came to my having a heart transplant. I stayed in the hospital as if it was my second home. Labs and tests were always something that needed to be done, and procedures were always performed for my good. I'm stating these things to help you better understand how much medical insurance was needed. There were many things done that I could not afford out-of-pocket, that medical insurance took care of.

My current medical insurance situation

This brings me to today. I received a letter from social security months ago stating that I am no longer eligible for social security because I received a heart transplant, and from my medical records, I'm in a stable place, which causes me to no longer be disabled. There are several reasons why I have an issue with that. One being, I was getting medical insurance from being on disability- they went hand and hand, so without SSI, no more medical insurance.

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The second issue being I have a disease called Desmin myopathy, which can impact muscles. This caused me to have a heart transplant in the first place, being that the heart is a muscle. So my question becomes, why are they focusing on my heart being stable saying I'm no longer disabled?

Trying to understand how this works

That is not the root of my problem, the heart transplant was a result of what the disease does as far as weakening my muscles. And this is leaving me worried about if or when the disease attacks something else on my body. How will I be able to get checked out or be treated without medical insurance? Not to mention I am forever on anti-rejection medication for my heart transplant. I get labs monthly to check my level to make sure I'm on the right dose of medicine for my heart to keep working. Without being able to see my doctor, get my labs, and take my medications it leaves me in a bad place and that scares me.

I just want to understand how the system works. How can they view my medical history and decide I no longer need medical insurance, or even disability for that matter, due to my past and current medical challenges? I am in a place now, where I am trying to appeal it all in hopes they reevaluate my case and understand that there is a need for me to have my medical insurance so I can stay on the healthy journey that I have been on for many years of my life, and I have a child now that I need to care for as well.

Have you also had questions about medical insurance in connection to heart failure? Did you get your questions answered?

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