Du, dudu duuuuu! First lung specialist update! I need to start with the answer to the one question I asked, that I was most unprepared for what the answer was! And cause I think it is super cool.
Once we got to where I was able to ask him questions during the appointment, I asked how much of my lung was removed during the biopsy. I was expecting something like, “Oh, you know. A few layers of cells. Just a couple of thin slices. Maybe a cubic centimeter.” Something along those lines. Nope – they pulled out of me two samples from my upper and lower left lung. Upper lung sample was 4.5 x 2.1 x 0.7 cm and the lower lung sample was larger at 8.7 x 2.9 x 1.7 cm. Like Holy Hannah! To me that seems like quite a bit when you are holding up a ruler against your chest. (I know you are all looking for a ruler right now.) Plus just thinking of them pulling that out through my holes. Huh. Cool.
Ok, now onto the rest of the update. Bullet form seems appropriate.
· I did another lung capacity test today and the results were compared to the one I did on September 2nd, just before I was released from the hospital. It shows good signs of improvement. Various numbers for certain functions were in the 50s about a month ago, and today I was in the low 80s. Which I was told would be considered on the “low normal” range. So that is encouraging.
· The chest x-ray I had just last Friday also shows clearing since the last one I had while in the hospital.
· These two improvements have led to my prednisone dosage being reduced from 70mg a day to 50mg a day. Which I am super happy for, as it’s a step in getting me off the steroids. And I wasn’t expecting such a significant decrease – I was thinking 10mg at the most. But I know now I will be trying not to worry that my lungs will start to see the negative symptoms again with the decreased meds.
· The doc does think that I have vasculitis as opposed to organized pneumonia, due to the signs of vasculitis in my lungs from the pathology report. Because of this, he stressed the importance of my appointment with the rheumatologist next week, because he needs guidance on the next step of treatment. Which would be adding the next layer of medication as we begin to decrease the steroids. Also, because I am still experiencing swollen knees and my bloody nose, this is a bit confusing. If these were symptoms of the vasculitis, they would expect the prednisone would be reducing these issues. But it isn’t. So are they vasculitis related or something else? I’m focusing on them just being something else. Just to keep things interesting. :0
· Surgery recovery – I expressed my surprise at how long it has taken to “recover” from the surgery, pain wise, and he told me that usually you really start seeing less pain at 6 weeks, but with this type of lung surgery, it can be up to a year before the pain has completed subsided with a full recovery. I was also not expecting that answer.
· He has ordered bloodwork to test my indicators of inflammation.
o ESR (Erythrocyte Sedimentation Rate) – a non-specific marker of inflammation which he will compare to my tests before as they were quite high. This will just help show whether there is more improvement in the steroids reducing the inflammation of the blood vessels in my lungs.
o CRP (C-reactive Protein) – also to detect inflammation and can be used to determine if treatment has been effective.
So, I will see the rheumatologist next week and the lung specialist again at the end of October.
That’s all folks!