I met with my sister this morning at Mocha House. It was good to see her, and it helped me pass the time. She’s a grandma now for the fourth time, her granddaughter was born while I was in the hospital. We talked about my appointments coming up, what I had gone through, etc. It made us both cry – “a little” but I think we both needed to be together as sisters. I know I NEEDED HER!
My first appointment was with Dr. V, the lung dr. He says we will repeat the lung function tests in a few weeks – he wants to give the steroids more time to work. He suggests I stay on the prednisone AND start CellCept for the lung disease but he is leaving that up to the rheumatologist that I see next. Says that it looks like Sjogrens, not lupus, that has wreaked all of the havoc. But I’m skeptical because all I ever learned in nursing school about Sjogrens was dry eyes and dry mouth – so I’m waiting until the expert tells me. Period-end of story.
He goes on the say that I’m aspirating – WHAT?! Really?! Says his view during the biopsy was obscured because of food. Yeah, in my lungs. Food in my lungs! It’s not supposed to be there! Told me to elevate the head of my bed with books so I guess it’s happening in my sleep? Overall, he seems pleased that I’m doing the same, maybe even a little better. I need to get the shingles vaccine and the larger pneumonia vaccine but I can’t get that until the end of June since I just got the Prevnar 13 in the hospital. Come back to see him in 3 months.
Met with the rheumatologist, Dr. M, a few hours later (we ate at Mission BBQ between appointments – yum!) He is so nice and explains well. He confirms SJOGRENS – I can’t believe it – it can be systemic so it’s more than just dry eyes and dry mouth. He agrees with the prednisone and CellCept and write prescriptions for both. He also orders a crap ton of labs – have to check hepatitis and TB, need to have baseline CBC (and will need this weekly for a month and then monthly due to the CellCept). And he’s still checking other antibodies that didn’t get done in the hospital…
The CellCept will basically knock out my immune system so I’m a little scare of what that will mean infection wise but Dr. M explains that it doesn’t necessarily mean I’m more prone but if I do get sick and need antibiotics he needs to know and I will have to stop the CellCept – I am a nurse, but this stuff is way beyond my knowledge and I am feeling very overwhelmed right now. I have a lot of reading I’m gonna have to do now that I know what we are dealing with. Follow up in 6 weeks.
Overall, I’m happy with the explanation – I guess, I mean how happy can you be that you have an autoimmune disease that has the potential to kill you but at least now we have a diagnosis and we have a treatment plan – step 1 and step 2. I am feeling some relief to my anxiety.
Poor B (my husband) however is going to have a heart attack though. after the appointments he says his chest has hurt for three weeks. My poor love, I wouldn’t have known – he has hidden it well.
Mission BBQ, May 18th, 2023