My Moments to Breathe

Friday, September 19, 2014

Another little battle

I went to the ENT (ears nose throat) on Wednesday to see what has been up with my sinuses and those pesky migraines. I was looking forward to it a little because I knew something was finally going to be done and I could go back to feeling 100% better. I do just want to throw it out there for all the people who say they are dying when they get sick....this feels nothing like dying. It stinks, it hurts, and its not comfortable....but its not dying! 

I saw a cat scan of my face and wow do those things look crazy. I learned that through multiple surgeries my sinuses have been opened up pretty wide. I relearned that I will always have a thick mucus wall. I learned that I have a massive deviated septum, so much so that when I get those headaches it makes my right side worse and can (and does) make both my ear and my jaw hurt. I learned that I have chronic infection as well as an acute infection (boo) so they took a swab so they could culture it and figure out what was going on in there. But the best thing I learned was that surgery most likely wasn't that answer since everything seemed pretty open, just sore.

As of today, I learned one more thing....

I learned that I have a case of Pseudomonas that can hopefully be taken care of with the antibiotic Cipro. Oh, and I also learned I cultured ANOTHER Pseudomonas that will NOT be taken care by that antibiotic. So they are also putting me on a nasal rise of an antibiotic and also a "topic"...UGH. They are going to watch me very carefully since I have already had the bug that is drug resistant. They want to knock this all out, fast and completely. So in 2 weeks if this doesn't work we go on to the next thing, and if that doesn't work we try to see what more doctors would do. This is life. 

Tears and frustration today. I know it hasn't even been a year and I have been doing amazing....but its just that I got a taste of that amazing, and I want it back. Now.

The good news is, last night I blew my best Spiro a 3.35. So thanks lungs for keeping your crud together and just being incredible. I have given them a few extra squeezes today. This meant that on Monday I do not have to go to my transplant clinic appointment (because it was not even a month ago I went to start the whole sinus stuff and was doing well then.) I just have to go in on Tuesday morning for my 9 month bronc (even though I am 10 months of yesterday!)

So lets hope for a fast and wonder recovery with little problems. The next 2 weeks are time to kick some CF junk again. A little battle to keep winning this war!

Side note: Next Saturday is Team Cassie's Beerfest in Ypsi, MI. I am traveling back and hope to see many of your pretty faces. Need info either let me know or check out the Team Cassie Facebook page!

Monday, September 8, 2014


My nights since transplant have been full of no sleep. It is really starting to wear on me. I have dark circles and bags-under-bags under my eyes. I am starting to feel and look pretty old. If I could just sleep, several straight hours of wonderful sleep. If you are ever up between 1-4 and are bored, shoot me a text and we can keep each other company. I wish I could figure out what it is that is standing in my way and causing me to get the rest I need at night...therefore needing to crash in middle of the day. Between that and my sinuses I heard myself, through tears, under the words, "It just feels like I did with CF...tired and in pain again."

I think it is just because I had such a wonderful taste of being wonderful, and know its silly things getting in my way, that make me feel and say those things. My lungs are still so great, and I can do so much still without getting out of breath...its just lack of sleep and migraines that stop me now. C'mon! Now I do know this is better than the alternative, and better than my old lungs, so I really don't mean to complain. I'm just tired and need sleep.

The good thing is that since I am used to having chronic discomfort and the such, I can still manage to do most daily tasks. Its just that I put them off as long as I can. Thats totally normal, right? No its pretty much just pure laziness. I just want to have all that energy again. Suck it up Zell!!

Now that I said it and wrote it, I won't again mention least not in the blog. But Jeremy will have to hear about it, bummer for him. 

I was asked and am signed up to talk at the Lansing, MI Wine Event for the CFF and am pretty excited to do so. Its not often at all that I get to talk in MI. And this will be my first talk post transplant! 

Hope you all are enjoying this little bit of summer left!