Since then, I have continuously been in and out of the hospital and have been dual-listed for transplant at Hopkins and VCU Medical Center. VCU Medical Center is better because my parents only live 20 minutes away and I still have a lot of friends and family friends in the area who are able to help.
At this point things are getting even tougher financially because the medical bills don't stop just because I'm not working (not to mention the bills for Jacob) plus I still have my portion of rent in Arlington, car payment, phone, insurance etc. While health insurance will thankfully cover the actual transplant, there are aspects of care and recovery (including copays, medication, transport, therapy, and much more) which are not all covered by insurance. For the first year after a transplant, a patient remains at high risk for rejection, and there are many costs associated with monitoring and guarding against this, as well as with recuperation in other ways. After-care is crucial, and it's expensive.
I'm still waiting for my disability claim to be approved so hopefully I'll at least get something from the federal government. The process takes months. I'm so lucky to be able to live with my parents and have them care for me the majority of the time, but its not easy to say the least as they both still work full time and my dad's job requires a lot of travel. I live each day without knowing what to expect from one day to the next as far as pain. I have regular weekly Dr appts sometimes more than once/week in addition to regular endoscopies and other random procedures. Unfortunately, I've been admitted to the hospital several times as well where I've had to stay for several days at a time. I'll also need to start some PT due to muscle atrophy that this disease has caused. I'm so weak and have to eat certain foods and do small things to keep myself from being simply miserable in bed everyday. It's no way to live. As nervous as I am, I can't wait to get my transplant and be able to recover so I can start my life up again. I wait impatiently everyday for that magical phone call to come.
I am truly blessed for all of my wonderful family, friends, and colleagues. Since many of you have asked me how you can help, it was suggested to me that I start a Go Fund Me account in order to assist with the continuous expenses that keep piling up in order to help me overcome the most important hurdle of my young adult life. Please don't feel pressured in any way, but just know that any and all help is very much appreciated.
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