My Two Favorite Dorks

My Two Favorite Dorks

Sunday, July 14, 2013

By the Numbers

With CF, sometimes it feels like I live life gauging my health by numbers: Oxygen saturation, PFTs, temperature, weight, Tobramycin levels, white blood cell count, etc. These are all things that my doctor and I keep fairly close tabs on.

However, one of the first lessons of CF is to not just rely on the numbers. Sometimes we are sick but the numbers haven't caught up to that, and same thing with being on the mend. You need to treat the symptoms. Sometimes lab reports say that your body is resistant to antibiotics, but they may actually work for you. The lab reports are just a guide. Thus, there is a good amount of detective work involved with this disease and - I believe - this is why many cystics have a very fine tuned intuition when it comes to their health.

It hasn't been a good few weeks for my numbers. Oxygen sats, which usually run 98% or so, have been low-to-mid 90s causing me to need supplemental oxygen during exercise. My PFTs, which usually live in the mid-40s, have gone well into the 30s. (To give you an idea of what this means, an FEV1 of 70% or higher means very little lung involvement; an FEV1 of 30% or lower means you are starting to think about needing a transplant.)

This happened to me once before - a large, scary, unexplained dip - about five years ago. We did course after course of IVs with very little impact. I had a picc line in for almost three months. I went to Duke for a second opinion and they said I should think about transplant which scared the hell out of me.

Eventually, a combination of starting to cycle some new inhaled antibiotics, starting on allergy and Xolair shots, Prednisone and exercise were what got me out of it. I will never forget the thrill, the elation, the triumph! that came from finally getting my PFTs back up five years ago. It took nine months and a lot of hard work. My doctor and I proved that Duke doctor wrong. 

This time, I am already cycling all of the mainstream antibiotics, I am still doing the allergy and Xolair shots, so increasing my Prednisone and exercise are all we really know to do. (Of course I still have to be careful with my back and exercise...can't do vigorous cardio more than every other day.) We did an xray (unchanged) and a CT scan (normal) last week to rule out blood clots in the lung or other things we might not otherwise be able to see.

All of this has left me feeling down and discouraged. This sucks! I'm not ready to be more sick, more of the time. I'm not ready to be that person who is always gone from work, who eventually needs to give up working, who needs to be on oxygen. I'm not ready to slow down, to stop traveling, to do less with my friends, to be tired at the end of the day from nothing.

But I think this important stuff for me to process - even, as I hope, if this does eventually just become another bump on my journey. I am so fortunate to be surrounded by an amazing support system of friends, family and co-workers who want nothing but for me to put my health first. I don't know how I could do this otherwise. THANK YOU!!

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