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I have lived with Sarcoidosis since 1974.At first I didn't know, or had heard the word, with being only 14 and all.Then for a summer job I had to get a physical and that's when I found out. But being 14 you don't worry about these things, and no one ever told me how serious it was. Life went on, I grew older, started havig kids and working even though the doctor told me at a very young age to go on SSI. As time went by, my condition got worse and I kept on working. You know we sometimes think that if we miss one day of work, we'll be in the dog house for good. I was having to be hospitalized every six months due to pneumonia or bronchitis or some other lung ailment. By this time I was coughing a whole lot, and working with food, that's not good. Every day was becoming an adventure just to get out of the house. Then I met my current wife, but by this time I was really bad. We got married and not too long after that I had to stop working because I could no longer do. I have been on disability since 1995 and my wife has been by my side ever since. Now we have two beautiful kids that besides being a pain, like kids their age, also help me. I am hoping to get better. The doctors don't give me a good prognosis, espcially since I'm also down on the immune system. I will prove them all wrong and keep on going because you see, I don't live with Sarcoid, it lives with me!
Very little is known about sarcoidosis, but we are learning more each day. I won't try to explain it to you with technical terms because then we will miss the point. Sarcoid is a disease that can affect any part of your body or any organ. It mainly affects the lungs, but it's not restricted to that area. It's causes have been attributed to dust particles or pollutants.Sarcoid causes scar tissue on the lungs and that makes them hard. This causes them to lose elasticity and therefore your lungs are unable to take in a whole lot of air or hold it for a long time.This causes them to contract and that's when you get that dry cough. Sarcoid is not contagious. You are not going to get it from a hand shake or a cough or sharing food or anything. We are more at risk of contracting something from you than vice versa. The air sacs on the lungs also collect bacteria from the air and they accumulate in the sacs (or air pockets) and this is what mostly causes us to come down with the flu, or cold more often.
There is a large range of medicine available to treat sarcoidosis and related infections. Although prednisone is widely used, more are comming out that deserve attention. Prednisone is a steroid, which means that long term use at high dosages may result in other side effects. The most common being weight gain, because of water retention. There are also the famous pumps or inhalers. These also come in steroid based aerosols. Inhalers also have side effects, including dry mouth. Best for me, I have found are the nebulizers. These are the same as pumps, but you put the liquid in a machine and it goes right to the problem. Asthma sufferers also may benefit from these nebulizers.
support groups:
These are extremly important for your well being as well as your mental state. We have a support group at the Mt.Sinai Hospital every month. I have added a direct link to an on-line support group that meets Thursdays from 10:00pm est-11:00pm est. Here we have pre and post transplant patients talking about what ever needs to be taken care of. You are very welcome to come by and visit, just click on support group Or go here;
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