Posted , 6 users are following.
I was diagnosed with Sarcoid in 1986 by the Chief of Pulmonary at the University of Kentucky. He saved my life. I was in for a knee operation and they always do a chest X-ray before surgery. He just happened to walk by my X-ray the Dr. was looking at and told him to get me in for a CT Scan. He saw enlarged lymph nodes all over the place. He ruled out the normal diseases Tuberculosis and others and said I was 1 in a million to have Sarcoidosis. They did a bronchoscopy and verified it was what he expected. The put me on prednisone and a slew of other meds.. It got into my eyes and I had 4 detached retinas over a 2 year period. It was in my lungs, spleen, eyes, skin and eventually in my heart. I have had lymph nodes removed from my neck twice. about the size of a ping pong ball. 23 Surgeries in all so far. A second opinion, the Dr. gave me 5 yrs. to live. Here I am still kickin'. I can see pretty well with glasses. I have cataracts that will be repaired when they get worse. My Dr. says he can put a pacemaker in when the sarcoid stops my heart from working. It interferes with the electrical impulses that pump the heart. I've been on Prednisone, Placquanil, Methotrexate over the last 30 yrs.. I'm on Pred. now. The worst part of the sarcoid is my lungs. I am on Oxygen 24/7. Can't breathe at all. My biggest scare is suffocating. 33% of my lungs are scarred (honeycombed) as they call it. Can't have a lung transplant. The new lung would get sarcoid. Defeats the purpose. Don't get freaked out when they tell you about your sarcoid. Some people defeat the disease. Others, live with it and it doesn't get worse. Have faith and deal with what they tell you. You can be strong and faithful. I always have a positive attitude and comedy really helps. My family has stood with me during all of this. That helps too. I am not alone on this chapter of my life. You aren't either. Take care and good luck!
0 likes, 9 replies