Living with Scleroderma

this is nothing but a curve ball

Pulmonary Visit Recap

on May 31, 2013

I went for my 3 month check up with my pulmonary doctor today.

The visit started with the nurse trying to get my blood pressure and oxygen. He put a pulse ox on my left pointer finger for 2 minutes and no read. Hmmmm. He touched the tips of my fingers and said they were cold (thank you raynauds). He then clipped something to my earlobe, I guess another instrument they use to measure oxygen in your body instead of the finger. Nope, still no read. Then he excused himself to grab a portable pulse ox and put my right tall finger…. And yes, finally a read… 98% at rest, not too bad.

Anyway, I guess I came a little early for my appointment so I waited a little longer for my turn. I love it how my doctor is brutally honest and straight to the point.

She says after my last PFT (Lung Function test), it shows that most of my results are about the same from the PFT test a few months before that, except that my diffusion rate has shown a decline. Overall, she said that it’s worse than last year.

She read my last Echocardiogram and said that I have a mild Pulmonary Hypertension going on. But we just have to keep an eye out for it just in case.

She asked about my GI. I mentioned my recent issues with acid reflux. She advised for me to tell my Rheumatologist if my new medication doesn’t help. She’s worried that the acid will make its way to my lungs and create more damage. She also advised for me to possibly see a GI doctor if my condition don’t improve.

She told me to NEVER use Allegra for my allergies, because it can damage my lungs even more. She said that she sees me needing a transplant in the future but she wants to prolong it as much as possible with the proper treatments.

She was concerned that I’m not in any other medication for Scleroderma after my Cytoxan and Rituxan Infusions. She felt uncomfortable that I’m not on anything to suppress the progression of my condition. She emailed my rheumatologist to see about me taking some medication to help slow down the scleroderma in my lungs.

She also looked at my CT Scans. She compared my first one from last year and the last one I took earlier this year. The pictures caught me off guard. I didn’t know what to say. I just stared at them. The honeycombing in both my lungs are worse compared to the first one and I didn’t think it could be worse. She also pointed out some cysts that were in my first CT. She said that the fibrosis in my lungs are causing the cysts. The cysts have become bigger and erupted creating holes in my lungs.

So for the meantime, I’m waiting for my next appointment for another Lung Function Test. I have to take a blood test to see if my body can process the new medication to suppress the Scleroderma.

What an exhausting day! But I’m still thankful. Everything happens for a reason! I know everything is in God’s hands! 🙂


One response to “Pulmonary Visit Recap

  1. Melorie says:

    Your positive spirit and strength is very admirable. Our prayers for you will continue .. and thankfully we have a God who is our refuge and help. Much love to you!

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