Help De. RareDisease. Fibrosing Mediastinitis

My name is DeAndre Johnson and first and foremost, I’d like to say thank you for viewing my GoFund Me page and donating if you are able to and if you can’t, simply sharing helps tremendously by getting my rare medical story out to others that may be going through similar issues or knows someone affected by my disease. My sister, mother, and grandmother with the advice from my doctors at UC-Health and National Jewish Health started this fund due to the financial hardships citizens of the United States deal with when it comes to medical expenses as they can be hefty even when you still have assistance through government programs. I appreciate you all, and here is my story. 

I was diagnosed with a rare disease called Fibrosing Mediastinitis, a disease that is characterized by scarring tissues forming in the chest cavity around important organs arteries and veins (mainly the lungs). The scarring tissue grows and since its development, it has restricted the flow of blood from my heart into my lungs giving me pulmonary hypertension. The increased level of blood pressure from my heart to my lungs has caused my body to send lower amounts of oxygen to the remaining areas of my body. 

Fibrosing Mediastinitis is hard to detect at first and takes years of progression to detect. I originally found out something wasn’t right with my lungs when I spent a week in the hospital due to my oxygen saturation level refusing to stabilize over 90%. At this time, I had been living in Denver, CO and doctors at Denver Health could not figure out the cause. Originally, it was written off that I had been dealing with sarcoidosis. Years had passed and symptoms became worse. Shortness of breath continued, near fainting became a symptom, and clogged airways from the development of hypertension. In 2018, I decided to go back to school and that meant I would need to be covered by health insurance pre requirements of the university. I then decided it would be a good idea to get a physical and the physician believed I had a murmur. Now, my heart was being affected and I sought the correct health. The murmur was ruled out but there were lingering issues with my heart and the incorrect pressures inside of it. Now it’s 2020, I have an oxygen machine and I was at least stabilized. Luckily, everything was shutdown so I couldn’t go anywhere. Finally, I was able to make my way to NJH where I had met Dr. Patricia George, M.D. who had informed me that I suffered from Fibrosing Mediastinitis and the reason nobody in Denver could figure it out is because the disease is endemic to the Midwest and onset by histoplasmosis. The conditions in the west are not suitable for this illness to occur. She was able to detect it due to having worked at Temple University in the transplant department and has seen FM. 

Today, I have a list of issues that have placed me medically disabled. I will need a double lung and heart transplant, an unboxing in the medical field if you will, to at least try and bring me back to my former self. Prior to this, I was able to work multiple jobs at a time if I wanted, go snowboarding, exercise, socialize with friends, travel, you name it. Now, everyday simple tasks of cooking, cleaning, walking to my car, sleeping and showering to name a few have become increasingly difficult. Furthermore, I can’t be the father that I wanted to be and am missing out on important milestone that my brilliant, caring, loving daughter is achieving due to have almost zero energy daily. 

Once again, thank you for reading my story, sharing my fund and donating if you are able to. It is very appreciated.