Alright, so I'm going to try out the blogging while vesting combo, which is a new thing for me. Oddly enough, I kind of consider treatment time to be "my" time -- I don't check emails, work, go online, talk/text with friends, or pretty much anything social while I vest or neb. I might watch TV, but even that's pretty rare. What I do do is read -- a lot. I love it, and hey, I'm a lawyer so I'm allowed to be a little nerdy here. But tonight I'm trying something new. Guess I'm feeling a little strange tonight anyway -- maybe it's because I just discovered that my puppy was spending his free time licking (licking!) my over-the-knee black suede Donna Karen boots. I'm pretty sure black suede and puppy spit are not a match made in heaven. But I digress. And anyway, now he's moved on to sleeping on a cashmere sweater that I had deposited on the top of the dry clean pile. Comfy, I'm sure.
Two night ago I woke up at 4 am coughing. Convinced it was a fluke or brought on by the start of TOBI, I pretty much just ignored it. But last night it happened again. 5 am and I was wide awake, coughing in that way that makes it seem stupid to wear the O2 tubing -- clearly you're not breathing through your nose anyway -- and totally unable to lie back down for a good 45 minutes. Then today the fevers started back up. So let's see, that makes it . . . 7 days exactly since I last stopped IVs. A definite new record for possible reinfection. Although aside from the cough (which wasn't too terrible today, but definitely present), I'm actually okay. My fevers are mild, my energy level and appetite seem to be holding okay, and my O2 sats are fine. So we'll see. I'm not going to freak out about this one, but I'm definitely pissed. Let's hope the TOBI works its magic soon.
The weird thing about it all is that I have to meet with my transplant team on the 6th of Feb and I know they're going to ask me how I'm feeling about the whole listing thing. And to be honest, I have no idea how I feel about it all right now. I've had way too many infections in the past year; I think I spent nearly as much time on IVs as I spent off them. My longest run might have been from March until June (3 months!) which at the time felt really amazing, but right now just doesn't seem all that impressive. Plus, while I definitely know that transplant is huge and has a lot of potential problems and is not to be taken lightly, I can't help but even . . . look forward to it? I want to be able to do things that I used to love to do: to ski and to run and to walk my dog all the time and to really be able to work for long stretches of time and not have to take off every few weeks for yet another stupid infection. I know it won't be easy, I know it's not a guarantee, but I honestly feel like it's a light at the end of the tunnel for me. I feel like there's nowhere left to go with CF but down.
On the flip side, I really want to delay the surgery until I absolutely need it, and my PFTs are still in the upper 30s. So I probably won't be listed next week, in all honesty. I probably won't be listed and things will continue pretty much as is, which is to say pretty damn good, but with a lot of interuptions. And here's where I have to take a second to honestly marvel at what my life still IS even with these crap lungs. How on earth did I get so lucky as to deserve a job that I love with people who are willing to at least try to understand CF and work with me, a family that could not be more supportive and that would sacrifice everything to help me through all this, and friends (although granted this group is more select) that seem willing to put up with all my ranting and sighing and wondering without forgetting that even though CF is who I am RIGHT NOW, there is a whole other side of me right below the surface? Even my puppy is incredibe, boot fetish aside: he puts up with a mediocre walking schedule and still loves me enough to want to sleep on my clothes. And that, I'm sure, is the very definition of devotion.
Anyway, the answer is pretty simple: I don't deserve all of the amazing parts of my life, but I'm pretty sure I don't deserve CF either, so it probably cancels out. In a really good, amazing, miraculous way, of course.
I do have pictures from the inauguration and I promise to post them soon. Just like I promise to clean my apt and do all my laundry and finally take in that pesky dry cleaning. Just as soon as I stop coughing.
About Me
- Piper
- I am a 33-year-old wife, sister, daughter, friend, law school graduate, CFer, lifelong student of public service, blog writer, patient, Sagittarius, reader, Top chef fan, double-lung transplant recipient (twice!), and dog owner living in Colorado's beautiful Mile High City. I love all things colorful, funny, inspiring, or needlessly sarcastic. I share my city with about 2,500,000 other remarkable people, share my disease with 70,000 other beautiful souls, share my life with some unbelievable family and friends, and share my apartment with one very handsome guy and one really fat mutt with a kick-butt personality. We make it work.
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I am not sure if I told you but you should talk to your docs and see if you can get on the early access study for aztreonam. we have the same lung function and I was going in the joint every 2 to 3 months the last time I was in was March. In april I started taking USANA which is a brand of vitamin supplements and I take a bunch also I started inhaled aztreonam. Its with the e flow takes 3 min 3 times a day its 28 on 28 off just like TOBI and on my off month from Aztreonam I take TOBI but I only do it for 2 weeks at a time cause it makes me bronchospasm. Let me know if you want more info or talk to your docs to see if you can get on it, and disregard if I already told you. Ill blame it on almost being 30 ;) Hope the coughing gets better.
ReplyDeletethanks for the advice. i'm actually already on the EAP for AzLi. this just happens to be my "off" month. i am counting the ays until i can go back on it (and off the yucky TOBI) b/ i love how well that drug works! good for you staying out of the slammer for so long!
ReplyDeleteHey Piper,
ReplyDeleteI'm sorry that you aren't able to kick this. I was on IV's for nearly a year straight once, it sucked. I was listed at 41% FEV1. I know that you know most the in's and out's of transplant. I was in pretty bad shape through the winter, and by march of my transplant I was doing pretty well, hence the success after transplant. The docs always said to me "the healthier you are going in, the healthier you'll be coming out"...
Hang in there!!!
ps. speaking of dogs and cashmere...my dog snuck onto one that ended up on a pile on the floor of things to fold. Stinker.
Yes that would be a sign of affection to have your pup laying on your clothes. They smell like you and he wants to be near you when you are not there :) Dogs are so stinking cute!!!!!!
ReplyDeleteI wish ya luck on the 6th and hope you can find some time to do some thinking by then. If not don't stress. You still have some kick in ya and CF won't stand a chance against your attitude :)
<3
Wow, so powerful. Thank you for sharing that battle-I know transplant can not be an easy decision.
ReplyDeletePiper,
ReplyDeleteI hope that you have to face the listing question later rather than sooner. You have had a rotten year but your quality of life still seems great. I know you will know what to do when the time comes.
I know what you mean about having an understanding job and great friends and family around. I feel like one of the luckiest people I know - even with this disease.
Take care!
laura