The good news is...

I saw the pulmonologist on the 23rd and he confirmed that it is definitely Sarcoidosis. He said he sees a lot of instances where the blood work doesn't match up with the biopsy, but that because Sarcoid is so rare, every time the medical professionals think they've found a definitive blood test, it is wrong for a group of patients. The way he explained it is that there is a blood test (ANA) that confirms Lupus and since Sarcoidosis is in the same family as Lupus, doctors expect a blood test that will also confirm it. There isn't one. The confirming test is the mediastinoscopy surgery that I had in September that showed the granulomas in the lymph nodes and on the lungs.

So, at least now, I'm more confident of what I'm up against. He also said that what has happened is the Sarcoid has caused me to get asthma, which explains the coughing and trouble breathing. He double-checked my blood oxygen and heart rate and said I can definitely keep exercising, but I will just need to slow down for a bit when the breathing trouble starts.

I'm now on asthma medication to see if the cough and breathing will get better. He said the challenge is that in my case, the asthma is caused by the pressure on my lungs from the nodules and swollen lymph nodes, which causes more inflammation and pressure in my lungs, so they have to find something that can treat both problems. Right now we are trying Singulair. So far it doesn't seem to be helping, but it's only been a week.

As for the future, I don't know. Because Sarcoid is like Lupus, it is hard to predict. Right now I'm having a small flare up, which means life is uncomfortable, but still manageable. In the future I could go into remission and have no symptoms, or I could have a major flare up that will make life very difficult to manage. I vote for the remission, but I don't seem to have much say in the matter just yet.

Now that I am getting a better sense of what is going on and what it can do to me, I'm going to try to find out what I can do to get things under better control. For most illnesses, the goal is to boost the immune system so that the body functions more effectively. The problem here is that boosting my immune system can make the flare up worse, since the problem is my immune system is already busy attacking germs that aren't there. I'm still having a hard time getting my mind around that!

What the pulmonologist did say is that exercise is a big help in keeping the asthma in check and helping me to feel better, so that definitely stays! The next step may be to figure out how to lessen the inflammation in my lymph nodes and lungs so the pressure on my chest will go down and maybe that will also help. Here, I'm open to suggestions. An inflamed ankle, I understand, inflamed lungs and lymph nodes seems a lot trickier to deal with.

On hold, again

This morning I saw the rheumetologist again. This was supposed to be the appointment where all the tests I've had done at all the various labs and doctors gave us a firm path for treatment.

It didn't happen that way.

While there seem to be some positives, the fact that I keep getting sick is not helping anything. They can't put me on immunosuppressents while my immune system is down from being sick because I'd just get sicker, but I can't take any supplements or vitamins to really beef up my immune system because that could trigger the Sarcoidosis to start attacking my soft tissues.

So, now I have to go to the Pulmonologist to have him check out my CT scan and test results to see what, if anything, he can do to help deal with the chronic cough and shortness of breath. While I do that, the rheumetologist is asking for more results from the surgery to check on some additional tests that should have been done. Then, I go back to see him in 5 weeks.

When I was diagnosed with cancer, it felt like everything happened in warp speed. All the doctors had an urgency and they wanted to start treatment right away. I get that, cancer carries a serious prognosis.

Now, with the auto-immune disease, it feels like just getting to the point of understanding what is happening is taking forever. I understand that auto-immune disease carries a far less dramatic consequence than the cancer did, but it also means months of waiting to feel better that carries with it its own frustration and fear.

Today the doctor asked me if I had any questions. My first question was how and why did I get Sarcoidosos. Answer: I don't know. My second question was is there a relationship between the cancer last year and the auto-immune disease this year. Answer: No, just bad luck.

OK then.