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Tuesday, January 17, 2017

Ready to Catch that Break

Hello World!

Well 2017 is not going the way it should. My health is SOOOOO not cooperating. My infusions of IVIG are going just fine. Not fun, but fine. However I don't think they are working. I had CF Clinic yesterday and my lung function is down another 12%. FANTASTIC! That puts my wonderful lungs working at a total of 28% of normal.... 28%!!!!

This sucks! I thought for sure it was going to show I improved or at least was staying the same. I feel better, not great, but better still.  So I'm beyond frustrated with nothing working. My lungs were 76% in June... now 28. WHY?!? That is not ok. I just want some answers. I know the world of transplant and CF a lot of the time is trial and error to figure out what works best. But its so frustrating - the unknown.

I'm trying to stay positive and see the silver lining but I'm in too much of a fog right now. With talks of needing supplemental oxygen again - looks like the next step - to possibly needing a 2nd lung transplant - which I'm told is rare to even be able to qualify for 1, let alone get 1. I can feel the depression and anxiety setting in every time I visit the doctors.

This year was suppose to be the year Brian and I look into starting a family - my health puts all that on the back burner. I'm suppose to celebrate 5 years of my transplant... which I do plan to do, but now all I can think is "will I even be healthy enough to enjoy it."

Life is hard. I'm exhausted most of the time. Doing ANYTHING - shower, laundry, the stairs, walking long distances - it makes my Oxygen level drop to 90-92. Normal is 99-100. If it starts to drop below 90... which it has a couple of times,.. I'm going to have to go back on supplemental oxygen. An old friend I don't wish to see again.

Every transplant patient knows rejection will eventually catch up to them. How long that takes is different for every person. There are a lot of factors that goes into rejection from how well the organ matched the patient, to the compliance of the patient, to the organ that was transplanted, to what bugs you catch and fight off - a number of things. So in the back of my mind I knew this would happen one day. I just wasn't ready for it to happen now. And to happen so fast.

I go back to Cleveland February 2nd. Not sure how that appointment will go. Answers would be nice but I'm not holding my breath. There are talks of possibly more Rotuxin (chemo), or more Aparesis (not sure if that's spelt right, but the blood filtering thing). But I'm ready to try something new. I know there are a few more options we can try. I'm not giving up yet. I'm frustrated and angry about the situation but not giving up.

So my glove is wide open, Life I'm ready to catch that break!

Breathe Easy

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