Wednesday, July 19, 2017

RA-Lung Disease.....How I got here - Take One - UPDATED

Updated - I came back because I thought it important to mention the fact that when my ILD was diagnosed, my rheumy immediately took me off the methotrexate.   " scars the lungs over the long haul...".  The RA does a number on them in and of itself, and the mtx just makes it worse.  Damned if we do....damned if we don't.  Did mtx cause my RA-Lung?  Combined with what the RA does to them, yes.  Yes, the mtx helped my symptoms, I noticed a difference in my pain level when I stopped it.  But had I been told that mtx scars the lungs, I'd have never taken it.  If you are reading this and you are on methotrexate, please insist on a chest xray every year.  Even if your doctor says its not necessary.  Believe me, it IS necessary if you have RA and you take mtx. 

Back to our regularly scheduled program:

I was reading through an RA page on Facebook and came across a question someone asked about chest pain, and shortness of breath with RA.  I was kind of taken by how blase' (at least it seemed that way to me) folks were about it, people with RA.  Which, to me, is kind of scary.  But you know...I was there one time.  I had no idea about the possible organ involvement.  And when I did find out, I was pretty "blase'" too.  I'm embarrassed to admit, I was also in that dream-world of "it happens to other people".  Then it happened to me. 

And I don't think I've ever dedicated a post to that time.  That horrible, scary, sick, time.  I was so sick, so close to death and didn't even know it.  I thought it was costochondritis, and just let the pain (and fever.....duh) go.  This was in early July 2015.  I kept thinking "eh, I have a rheumy appointment August 10, it can wait.  Just one more thing I gotta learn to live with".  HA!!  little did I know.  I was so stupid.  And my stupidity almost killed me. 

Dr. G and I put our heads together and we came to the conclusion that late one night in June, I aspirated stomach acid.  It was bad enough that I almost passed out from coughing and not getting any air, every time I coughed, it burned like fire coming up, and by the time I got to a place I could breath, I was out of the bed and lying on the floor.  I thought I got it all up.  I didn't, and didn't think anything more about it.  Dr. G said that's what caused the infection.  Dr. Eye, my rheumy says the RA lung was probably already simmering ( I agree, I'd been having tiny little chest pains for about a year) in the back ground and the infection boiled it over, so to speak.  And of course, once the ILD was boiling, there's no turning it off.  Its a done deal.

Anyway- The pain started and the fevers, then it got to the point it was very painful to even turn my upper torso.  And yet I kept saying "eh, I have a rheumy appointment in a few weeks, its all good".   So technically, the stomach acid I didn't get up, was boiling away at my right lung.  By the time I got to the rheumy on 10 August, two months had passed since the late-night-aspiration.  She took an xray and I went back to work.  4 hours later, her nurse called me, frantic.  Telling me they had already called Dr G's office and sent him a copy of the xray, and I had "walking pneumonia".  I started to shake.  Oh shit.  What the hell have I done to myself.  I hung up and called Dr. G's office.  This was a Friday, and he was out.  They did get the  xray and the report, and the doctor on call had sent me an antibiotic scrip to my pharmacy.  I needed to start them immediately, and come in Monday to see Dr G.  Friends, the look on his face when he walked in the exam room scared the living daylights out of me.  He gave me the full-load on what was happening, the collapsed lung, the huge infection, the huge plural effusion that would need draining (WHAT?), I just started to cry.  And then I remember that night I almost choked on stomach acid.  He just shook his head and said "yep, that will do it."

Many many xrays, weeks of antibiotics, I was in Dr. G's office at least once a week and sometimes more, for two months, a second plural effusion and a visit to a pulmonologist, Dr. H. At this point, we were now in November 2015, still on antibiotics.   He looked at my records and the labs that were done on the fluid drained from my lung and said, "yes, this is RA Lung.  I know you are still on antibiotics, but you need to get back on the Humira, and I think that will stop the effusions"  he was right.  It did refill just a bit, and Its still there today, but not enough to warrant the expense and trouble of another thoracentesis.  He also said, very matter of factly, that RA Lung is considered terminal, with average life span about 2 1/2 to 4 years, depending on how quickly I progress.  I was numb.  I went back to work and began to Google.....and cry.  Everything changed, in that moment of time.  Suddenly, I was that "other person" that these things happen to.  My priorities changed in a nano second.  I can't remember which doctor said it, but I was told another week to 10 days, and the infection would have killed me.  I almost died.

Today, I still have the chronic effusion, and Dr G said the HRCT I had a week ago is showing that its a little bigger.  So when I see him next week to talk about and Upper GI, we're going to talk about another thoracentesis.  I just shake my head at the thought of that. Yes, I've been through worse.  But having what is basically syphoning fluid from my lung (like stealing gas from a car), and going through my back, with nothing but a local deadening of the skin....its not the worst thing, but its not pleasant.  *huge sigh*  I don't want to do it again.  Tears come to my eyes just thinking about it.  But if it has to be done, it has to be done.  But I don't have to like it.

Also, in healthy people, the lungs generally lay across the diaphragm.  My right lung does not.  It curls backwards in on itself.  Dr G says that permanent damage and scar tissue.  My right lung is FUBAR.

I'm tired now, so I'll end for today.  But we'll pick this up tomorrow because I want to talk about this crap at the walk-in-clinic from Monday.  It all fits together, don't worry.  I'm not going to pull you down a rabbit hole.  :)

Till then, ya'll be sweet

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