So my attitude is better now than it was a few weeks ago. After hitting a low on my PFTs at 33%, it went up to 37% a week later, then 40% a week after that. However, I didn’t feel my oral antiobiotics were doing what it needed to, and once my dr saw the color and thickness of my mucus, she ordered IVs.
Ok, so 101 days of IV in 2010, and here we are in March of ’11 and I’m back on IV. I started them a week ago, and I’m already feeling improvement! I got on my elliptical for the first time in a LONG time yesterday and got through 15 minutes – that’s great!
The other thing I did was get my very first PICC line. Yes, 43 yrs old, and this is my first time. I love my PICC – what was I thinking doing peripherals, and having them changed every 5 days! The only annoyance is the wrapping for the shower. I found this product and think it’s awesome. To the CFers reading this that use PICCs, you might be interested: http://drycorp.com/content/how-it-works-picc-line-protector/index.html. I ordered it through www.allegromedical.com since there was a 20% coupon 🙂
This is my PICC:
Also went to the ENT at Columbia Presbyterian for an opinion on my sinuses, then went to a top notch guy at the NY Eye and Ear this past Monday. They both recommended the surgery. That was no surprise to me… I’ve been told that several times, but my CF dr never recommended it because my sinuses hadn’t seemed to be contributing to my infections. But after the past 2 yrs of craziness, it was worth a look in to.
Went for my 2nd opinion to a dr at the NY Eye and Ear, and he is able to perform the surgery under conscious sedation! And has experience with CF patients. So no worries about any difficulty that may arise from weaning off the breathing tube from general anesthesia. He will be correcting my deviated septum, amd “cleaning out my plumbing”. When reviewing my cat scan, it shows a lot of disease/inflammation. I even have bone that wore away! So my anatomy is not classic. He will perform the surgery with guided radiology. There’s also a section where my brain comes down further than expected – so the guided help is needed in order to map everything correctly. I expressed concerns about so many CFers having multiple sinus surgeries. He explained how many surgeons correct portions of the sinuses, leaving it vulnerable for future problems. He will be improving the drainage of all 8 sinus cavities and hopefully this will improve my drainage and hopefully decrease infections related to my sinuses.
I realize there is NO guarantee. But, at this point, I am willing to try anything that can possibly decrease my IV occurrences, even if only by a small percentage. The way I see it, I’ll be awake, it’ll be about one hour to do, and it’s not a drastic step. Scheduled my procedure for the 23rd. I’m very anxious! I will still be on IVs and that’s how my CF dr wanted it.
So, after feeling like I was losing control,
I now feel like I’m picking things back up.
The roller coaster joys of CF 🙂