Tuesday, 30 September 2014

Tuesday Blues.

Today has not been my day. I had a CF clinic appointment this morning that I entered feeling very hopeful and left feeling very opposite-of-hopeful. The good news is that I have not been admitted to the hospital. The bad news is that the only reason I have not been admitted is because I've previously had a reaction to the IV medication that they wanted to try.

I was hopeful going into this appointment because I'm no longer symptomatic of having an infection, I have more energy than a few weeks ago, and I have returned to exercising with success at physio. I figured that with all the meds I'm on, my lung function would at least be up 3-5%. Every other time I've been on IV medication or just really strong antibiotics, my lung function has always jumped up a significant amount. It has rarely ever stayed up there but at least I get a bit of a 'medication boost' for a few weeks.

Today, however, nothing. Zero improvement. I kept telling the respirology therapist that it should be higher and he kept tactfully saying,"well, it's not." The readout on the report actually said 'increased by 0%.' If I could have thrown something angrily across the room after I did my lung function test, I would have. 

Not reacting to treatment is a terrifying horrible thing. Basically my lungs have defeated everything science has to offer. The doctors are running out of options for things to do. And while at this point, it's mostly all about maintaining what little lung function is left until a possible transplant, it would still be nice if my lungs could improve a little bit. Instead of remaining at the ever-so-scarily low at 21%, or .69 FEV1. Otherwise I'm going to have nothing left if I get a cold or worse, the flu or pneumonia. Ahhhh, I could really use that transplant about now.

Before I moved up here to be listed (when I was still imagining getting my lungs at the 8 month mark and moving back home after one year), I said that I wished it was possible for me to wait until my lungs were at their absolute last chance and get the transplant then when I knew 100% there was no chance of living much longer. I guess the saying is true that you should be careful what you wish for.

What a shitty day. I don't know if even a trashy chick-lit novel and bag of chips is going to fix this.

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