Ethan, can you copy this story onto the grief site? I don't know how to do that. And thank you for your kind words.
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Matt was diagnosed with this disorder when he was 22. Apparently he had had a histoplasmosis infection in years prior without ever knowing. He had a tremendous immune response in his lungs which they found out after a bicycle accident which resulted in a broken collar bone. The xrays showed lesions that were at first thought to be lung cancer. After seeing several doctors, it was determined he had FM. He didn't have symptoms at the time but 2 years later , at age 24, did have to have a stent put in the vena cava due to the scar tissue occluding it. Matt always had troubles with a cough, allergies, upper respiratory problems. All the pulmonologists, allergists told him this coughing was not due to his FM but asthma and allergies. To be fair, I doubt that any of his doctors had ever seen FM. It is very rare and extremely rare to have the most serious form, which we know now matt did have. I don't know why he was never sent to a specialist. January 2nd if this year, Matt started coughing up blood– copious amounts. He was rushed to the ER and an embolisation was attempted a few days later and put into a medically induced coma. But due to the extreme scarring in his lungs, the bleeding stopped for only a few hours. 5 days later, they attempted to remove the right lung, which they felt was where the bleeding was coming from. However, after only an hour in surgery, the thoracic surgeon told us that it was not possible to remove either lung. He said he had never seen such extensive scar tissue in lungs and it was rock hard and basically the lungs were rock hard. It was also determined that his Vera cava was again closed however due to the scar tissue and blood vessels that had grown in and around the scar tissue, it could not have a stent put back in to open it. After 10 days he had lost so much blood through his bleeding lungs that they gave him blood transfusions which caused everything to start shutting down– kidneys, blood pressure, heart, treatment . After 10 days of hell, our boy died of catastrophic organ failure. He had just turned 35 a week before. We are all heartbroken and his parents are beyond broken. Matt was their only child. My daughter is 31 and her world has turned upside down. She's in grief counseling and has her family and many, many friends. It is going to take a long, long time to work through this. Thanks for listening.
I don't know what to think. Dr is trying to figure out reason for intermittent hypoxia. My ct scan, pulmonary function tests were normal. Pulmo said overnight oximentary was normal but sleep drs said there were some irregularities. So next I'm having a sleep study done and a stress test that measures heart and lung function while exercising. C02 has 02 were a little off balance with ABG. Chest X-rays show hyperinflation but it didn't show test on the ct scan. Ct scan did show some coronary and pulmonary calcifications but I'm not sure what that indicates yet. This happened 3 years ago and I had a bunch of tests run and they never figured it out.