Frustrated tears

"Hello Mrs. Lee, I spoke to the doctor and gave him your message. He says you can up the steroids to better manage your pain as long as your tuberculosis doctor says it's ok."

You've got to be kidding

2 weeks ago my doctor called. I should have hung up on him. He called to tell me that the TB Gold test he'd thrown in "just in case" because I'm due to start a new TNF drug in July, came back positive. He was so nice about it. He'd already talked to my pulmonologist and gotten me a referral to an infectious disease specialist. And he felt bad about it, "You just can't seem to catch a break."

Tuberculosis? Seriously? Try that in a conversation, "Oh yes, my doctor called and it turns out I have Tuberculosis." Trust me, there will be a long pause before anything more is said!

So, I met with the infectious diseases doctor. She says it is Latent TB. Which means I'm not contagious. I have to preface with this to anyone who asks. NO, I can't give you TB. But, it is dangerous to me in that it could become active and since I'm still scheduled to start the TNF drug, which will kill off most of my immune system, it is important that I start treatment now.

Before we get to that, though, the first question that had to be answered was "How did you get this?" TB is pretty difficult to contract. You have to be in close contact with someone who has active TB. Usually people get it when traveling to countries that have a TB epidemic or if they have a suppressed immune system and are working in a hospital where there are TB patients. For me, it was none of those things. I got it because I help refugees.

Because of my work with the refugees, I know quite a lot about TB and Latent TB. Many of the folks I work with have Latent TB, and for the past few years I've accompanied them to appointments at the Refugee Clinic or the County Hospital. So answering the question wasn't difficult.

I got it because I keep working with the refugees while being treated for Sarcoid.

OK then, the next step was a chest x-ray to see if there was any lung involvement. For most people this is straightforward. Get a chest X-ray. If it's clear you have Latent TB, start the pills. If it's not clear then you have active TB and you need to start that treatment. In my case, it took several calls between doctors to decide what of the crap on my lungs was Sarcoid and what might or might not be TB. They decided to go with all of it is Sarcoid. Thank goodness for small blessings.

So now I'm on Isoniazid. This is the standard antibiotic treatment for Latent TB. 9 months with monthly check-ins to be sure the drug doesn't give me Hepatitis or liver failure.

Add it to the list. On the up side, between the TB drug and the Malaria drug, if I ever have a chance to go on a tropical vacation, I'm set!

The more difficult part of all of this is deciding what to do about my refugees. Both the infectious diseases doctor and my rheumetologist have told me not to go to any more clinics or hospitals. My immune system can't take it. There is also the realization (ok, whack to the head) that my work is making me sicker and that it has real consequences. What to do about this is more difficult. I haven't made any decisions yet, and frankly, I don't know what to do.

Trial and Error

Next time I'm getting a better funded disease. That's the one thing I can say about breast cancer, there are very few mysteries about what to do. Once a diagnosis is made, there are set protocols to follow. They generally suck during the treatment, but they do work for many many women.

Sarcoid, on the other hand, is complete guesswork. Over the past 2 years I have been on 2 different chemo drugs, 1 TNF drug, mounds and mounds of steroids, sleeping pills, bone stengthening infusions and heart medication to combat side effects of the mounds of steroids, and now a malaria drug.

With the exception of the steroids, which damaged my heart, bones, skin and sanity, nothing has helped. And, to be clear, none of the drugs I've taken are specifically for Sarcoid.

There are no drugs (besides the steroids) that are approved for Sarcoid. Why? too few people have it so there are no research $$ for it. There are a few doctors and clinics that are trying, but because the stupid disease manifests differently in everyone, what works for "most" doesn't work for all. And so far, none has worked for me.

So, back to the drawing board, and the steroids. The new plan is to fill me up with steroids for a few months at a level that hopefully will leave my heart, skin and bones alone. We'll continue the malaria drug while doing that, then add a new TNF drug on top of all of that after I have enough steroids in me so my body won't reject the new drug. The new drug will be 2-hour infusions every 6-8 weeks for a few years; if it works. And of course, the steroids.

The goal is that I will not feel like I've been hit by a truck every day, that I'll have enough energy to exercise again, that I won't cough and hack all day, and that I'll be able to finish a thought without having to gasp for breath. Of course, that's been the goal all along, hasn't it.