CF is Weird

The title say it all: CF is weird! I went to clinic Monday and coming off a pretty horrendous cold I figured my numbers would be low(ish). I was expecting the low to mid 30s. I blew a shitty 25% which is a new low for me. And although that number is super scary low it did not represent how I felt at all. I walked 2 flights to get to clinic...I can't even do that when I am 35%. I don't understand how my numbers are drastically different than the way I feel. I knew I didn't feel like my baseline, but 25% is about as scary as it gets when you aren't on the transplant list.

Considering that number is so very low and extraordinarily scary I just knew I would be going inpatient and felt a bit devastated that I would be miss out on everything holiday related before Christmas. Kaylee's days are numbered where she will still believe in Santa and I didn't want to miss out on perhaps the last year of a magical Christmas.

And then my doctor decided to put me back on Avycaz and an antibiotic for staph which meant I would be doing home IVs. Considering everything I wrote leading up to this sentence I should have been happy with his decision, but mainly I just feel afraid. I have been on IVs 3 times since October (averaging every month!) and I just want to get better so badly. There is so much more pressure to do well when I am at home because everything falls on me. I know that even in the hospital I am the one doing breathing treatments and it is MY body that is trying to heal, but it feels like if I fail...the blame is shared between the hospital staff too. I know that sounds weird and logically doesn't make sense, but I feel like if I don't get better on home IVs I am the only one at fault (well, and CF too!). The wiggle room I used to have in my pfts have slowly disappeared over the years and I know that CF can get deadly so very quickly. I have seen it happen too many times too stay in denial.

Maybe this is a rough patch...I have had them before. Maybe this is a hump to get over to get back to my normal life. But maybe it isn't. Maybe this is a sign my lungs are too tired. I have never been the gambling type and so I won't gamble with this either. I want to be prepared if this bump turns into a downward spiral. And so with lots of tears and a long talk that went well into the night my husband and I decided we needed to start the process for transplant. I never doubted I wanted a transplant. I really do love living and I have so much to live for! How could I leave my daughter motherless?? How could I leave my husband alone on this Earth? I would do anything to live longer than CF will allow and transplant is the only chance at getting extra years.

But I never would have imagined how hard it would be to step over the threshold from "someday..." to "now" when it came to transplant talks. I feel like I failed having to admit that my journey with my CF lungs is over. I know that CF ends the same for every person and so it can't be seen as a failure, but as the inevitable, but that doesn't change the sense of failure I feel turning to the last resort when it comes to CF. I worry I am not strong enough to endure all that entails both physically and emotionally that comes with transplant. I feel sad for my lungs. They worked tirelessly even with all odds stacked against them to let me live these beautiful 34 years and I hate to see them go. I know, I know. It makes no sense to feel attached to an organ, but there is no organ in the world that has worked so hard for me than my lungs and again I feel like I am failing by choosing to replace them. I am so so afraid of what the process will do to my family. Just the thought fills me with so much mama guilt it makes my heart hurt in my chest. And what if they go through all the worry and stress and then it doesn't work?

I know none of these questions can ever be answered and the worry will never fully resolve, but I need to focus on choosing a transplant clinic that I think will suite me best. And in the meantime I need to work as hard as I can to delay the need for transplant as long as possible.