Join CaringBridge during this most important time of the year. Your support means that we can continue to provide free, secure websites all year long.
A tale of two lungs
2/20/2017 Latest post:
Most of you have been a part of my journey through the years, for those that have not here is the condensed version.
I was diagnosed with SLE (lupus) at the age of 20. I have had my battles with it through the years, I have always won. There were some serious flares and some mild flares. Nothing exceptionally dire. I quit all medications and doctors in 2009. I deemed myself in remission.
I quit smoking 10/4/15. (Very proud of myself for that) I started having upper right quadrant pain and short of breath (I attributed this to the quitting smoking process)around mid October. It got bad enough I went to the ER on the 25th. They found enough test results to confirm I was in a flare, they also found a "spot" on my lungs. I did not have insurance, I couldn't go to the doctor until March. (Primary) he put me on 10mg prednisone and plaquenil. Told me I needed to see a rheumatologist.
I called my previous rheumatologist and made on appt. May 13th they took x-rays of all my joints and my lungs (still short of breath). She came in and said we found some things on chest x-ray. We'd like you to see a pulmonologist, I asked for a recommendation? "Oh no, I mean now. He's waiting for you."
Needless to say the kids and I were shaken by the urgency. Saw the pulmonologist and he scheduled a CT scan not wanting to speculate to much on what it could be.
June 3rd, CT scan shows cysts of varying sizes. So many he can't count them all. Largest being 2 1/2 inches. More blood tests and questions. Ruling out diseases as we go. He was baffled, he'd never seen anything like it. (Not comforting) He suspected Amylidosis. We went back and forth with him and my Rheumatologist for three months until I decided I needed a second opinion. They were taking a wait and see, don't treat stance.
It felt wrong to me, I listened to that God given intuition. In September we went to OHSU in Portland. The new pulmonologist diagnosed "Lymphocytic Interstitial Pneumonitis." A rare cystic lung disease, and explained that my case was advanced and could not give me a prognosis. Advised me to get a new rheumatologist at OHSU. He wants to do an infusion treatment, to date it has been denied by insurance.
I'm currently taking 3000mg of Cellcept, 40 mg of prednisone both are an immunosuppressive drug. And trying to be as healthy as I can.
This is a very basic overview and does not include a lot of the trials with doctors, lots of testing and lots of tears and questions. It also doesn't include amongst all of this that my father had a massive stroke and died on August 12th, 2016. Six months without him on this earth along with everything else, there are no words.
Also Brittney has been tested for lupus, Hashimoto's disease and Sjorgens, and also has a Mitral Valve Regurgitation. She has seen a Endocrinologist, Cardiologist and next a Rheumatologist. This is more difficult than anything I am going through. She has slight scarring on her thyroid so it's not full blown Hashimoto's, but will need to be seen every year.
However, you have to keep moving forward. My dear sister friend Sharon told me about this sight and I hope it helps keep family and friends updated, it's so hard to keep everyone in the loop. So for now I will try to journal here and keep you updated of appointments and results.