Thursday, November 12, 2015

Health Update: Checking in with NIH

My friend Jessica and I in the car on the way to the National Institutes of Health

If I weren’t so tired, I’d be doing cartwheels.

That is saying something since, as a kid, I never managed to be able to do a cartwheel. My NIH visit couldn’t have gone any better unless they announced a way to reverse fibrosis (which isn’t here yet). My CT scan showed no changes since my last visit to NIH in May, 2014. That was when there were a lot of changes and I was told I needed to move and get ready for a lung transplant.

My pulmonary function tests were all within the margin of error, except the total lung capacity score. It hadn’t changed much on other recent pulmonary function tests, so perhaps it was a blip. We have to wait to see if there is a trend.

All of my blood work was perfect. My echo showed no signs of pulmonary hypertension, so if they find something on the heart catheterization we are planning soon, then it will be very mild and early stages – the best time to treat it.

I don’t think I moved too soon. This is amazing because it wasn’t supposed to happen. I think the medication I have been taking is helping. It just makes me less panicked about being ready for transplant in time. We have no idea how long this will last, so it doesn't remove the urgency - just some of the worry.


I have noticed some increase in my oxygen needs, but this may be due to one of the new medications they put me on….stay tuned.

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