- 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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Tuesday, March 31, 2009
Seriously, I'm really NOT looking forward to this. At all. I don't entirely know why, except that it sounds like kind of an invasive and scary test to me. Oh yeah, and there's also one other tiny little detail that I may have so far failed to mention on this blog...
See, in addition to CF, I also have another handy little genetic "mutation" of sorts that also happens to have a convenient little acronym: SVT. SVT stands for supra-ventricular tachycardia, and it basically means that I have an "extra" current pathway in my heart that, when triggered, causes my heart to beat really, really fast. Actually, race would probably be a better word, and even then it's more of a sprint. We're talking 260+ BPM here. Yeah, fast.
I'm really lucky SVT-wise, though. I have about 2-3 episodes per year, normally brought on by some sort of very rapid, exerted effort on my part. Actually, in one of the great ironic jokes of the universe, the most common trigger for me is pulmonary function tests. The second is definitely coughing fits. Awesome. But, like I said, I'm lucky, because while I have a couple of episodes each year, they never last more than 30 minutes or so and I've never needed medication to stop them (knock on wood!). Instead, I just have to let it go for a few minutes while relaxing my body, and then bear down hard and put a little bit of pressure on my heart. I do this by biting my thumb and contracting my muscles as though I were "blowing out" without actually letting any air escape. Once I do that a couple of times, it typically resolves.
Actually, on an interesting sidenote, the first time I ever had an attack I was in the hospital for my CF and, you guessed it, had to blow PFTs. When I did so, I told the PFT tech that my heart felt funny. She put a pulseox on my finger, freaked out, and called cardiology to come ASAP to the PFT room of all places. They had me sitting there, half naked, hooked up to the portable EKG and a heart monitor which both showed my heart just racing out of control. I was, of course, totally freaked out. Then in strides this suave looking cadiologist (head of the dept, of course), and he glances at me and says "Piper, I want you to take a deep breath and then push down like you're trying to have a baby." Weird instructions to give a 21 year-old, for sure, but I did the best I could given the circumstances. And then, all of the sudden, my HR literally plummeted in two seconds from 250 to about 130, and I could see thw whole thing on the monitor. It was totally surreal and totally amazing to "watch" - freaky as the whole thing was. And that was my introduction to SVT.
Anyway, back to the right heart cath. I've definitely told my tx team that I have SVT, obviously, and they've assured me that it should be fine and that people with SVT normally have no problems with the heart cath. And I've also been lucky enough with it that I'm not too scared even if the heart cath does carry with it the risk of an episode, because logic tells me I should be able to stop it as I've always done before. And even if that doesn't work, well, at least I'll be in a hospital, right?
But I'm still really nervous. I don't want anyone messing with my heart, I don't want doctors to go in there and make it angry, and I don't want to have to worry anymore about the weird way that CF and SVT interact. I know that's a little babyish, because CF is constantly interacting with the rest of the body and some people have it much worse than I do in that respect, but it's still a valid complaint. It both amuses me (in a very tongue-in-cheek kind of way) and pisses me off that all my SVT issues seem directly tied to CF (e.g., PFTs, coughing fits, stupid right heart caths). I know CF didn't cause this extra current pathway, but it sure seems to irritate it.
My appointment isn't until May, so I have some time to prepare myself. I think I'm going to email my transplant doctor and ask some very specific questions about SVT and heart cath. I'd certainly rather know the risks going into this and be aware of everything than not. And I want to remind him of what he's dealing with, because I don't want him confusing me with some boring, run of the mill CFer!
Just kidding guys ;)
Saturday, March 28, 2009
The worst thing about writing a health blog is that when you're not sick, there's never much to report. And the best thing about writing a health blog is, well, when you're not sick and there's really nothing to report.
Life with CF is funny like that.
Anyway, as you might have guessed from the opener, I'm not sick and there's really not much to report. The weather in NYC is getting warmer, it's almost Spring and with it comes the oh-so-exciting end to cold/flu/sinus infection season. Seriously, I am so so happy about that. I also love that I'm feeling healthy right now and able to enjoy the brisk but sunny weather with my puppy. It's been far too long.
The one thing I will say about CF is that you learn to really appreciate feeling healthy. I think one of the reasons the 6 weeks of IVs wasn't really too tortuous was really just b/c it felt so damn amazing to have 6 weeks of freedom from feeling really sick. And now that they're over AND I'm feeling healthy. . . well, let's just say I'm making the most of this weekend. Last night I was out with work friends, today brunch with my best guy friend, a lazy stroll together around TriBeCa, fun in the dog run, and then a birthday party this evening. But tomorrow is the real coup de grace - brunch and an afternoon at the Metropolitan Museum with my sister. The Met is something I don't get out to all that often but that I absolutely love everytime I actually do, and it has an African textile exhibit right now that we both really want to go see. (By the way, for those who don't know my sister, she is an AMAZINGLY talented high-end fashion designer who is currently the sole designer for a new fashion line that was started by her entrepreneur friend Max and uses fabrics from Kenya. Check it out at www.sunony.com! It's sold in NYC, LA, and Paris.)
Imagine, a whole day of wandering around, taking in one of the best art museums in the country, and not having to stop every five minutes because of exhaustion and/or breathlessness! Sounds amazing, doesn't it?
Knowing the complexities of relatively severe-stage CF (yeah, I admitted it), I'm sure I'll be back on the blogging bandwagon soon enough. Until then though, I hope you guys will forgive me if I take a much needed break to enjoy the rest of my life.
Tuesday, March 24, 2009
Yep. I officially have no more port access, no more IVs to infuse, no more home healthcare company to deal with, and no more ridiculous medication schedule to adhere to. OK, fine, so my medication schedule is still a *tiny bit* ridiculous, but no more so than any other normal, healthy, fabulous cystic!
And it feels absolutely amazing.
I didn't think this whole "IVs for 6 weeks" plan would be too bad, and honestly I guess I have to admit that it really wasn't. Aside for the whole gravity drip snafu, the frustrations of dealing with the home health nurses, and the bum deal of being on an ineffective drug for nearly half the time, it could have been a lot worse. But let's face it, that's not saying a whole lot. By the end of this thing (i.e., tonight) I was literally going crazy! And to all those amazing CFers out there who have endured months or even years of constant IV abx, you are all my new heroes. Seriously, well done to you!
Unrelated sidenote: I've started jotting down my meds, exercise routine, communications with my doctor, and recorded HR/O2 levels in a little notebook I bought. Sort of like a daily medical journal, and I also make a note of how many hours I slept and any other pertinent information (e.g., worked until 10 pm, just as a random example). Yes, I do realize that is totally OCD and crazy on my part, but the thing is, I've been getting sick lately a LOT and I wanted to just try tracking everything health related for a little while to see if I can notice any patterns. At the very least, it holds me accountable in a weird way, because if I decide to skip exercise or a neb treatment one day for any reason, or totally blow off sleeping, then I have to write it down and actually fess up to it later. But mostly I'm not doing this to scold myself (or even to reward myself, though that would be more fun) - it's really just so that if I get sick again less than a month out like I have the last couple of times I can look back and try to see when it started and if there's anything that might have triggered it. And maybe in 6 months I'll have enough information to be able to make some important adjustments and stop this crappy cycle.
Or I'll just have a really creepy health journal. Either way.
Thursday, March 19, 2009
The only things I don't like about it are: 1) I can't access it by myself, and 2) it moves more than a chest port (so I've been told) and kinda freaks out some of the nurses who aren't as familiar with the arm placement. But other than that I love it. Well, today I found a third negative, and while it still doesn't convince me that I want my next port to be in my chest, it's still annoying as hell.
Basically, the fact that I can't access the thing by myself means that I am at the mercy of the homecare nurses for pretty much anything, including monthly flushes and dressing changes. This has honestly never bothered me too much b/c the monthly flushes are no big deal and the dressing changes just happen when they come to draw blood labs. So no big problem, right? Right...well, most of the time. This time, though, I'm on IVs for 6 weeks. That's double the time I normally stay on these things, and it's far and away my longest course ever. So because I can't access myself, I just rely on the nurses like normal. And because I have to rely on the nurses, the skin around my port is ALWAYS covered by the dressing and tegaderm. It only gets to "breathe" for like 30 seconds when they pull the old needle, alcohol the area, and then put the new needle in and the new tegaderm on. No time to shower or wash the area, no time to let the skin relax, basically no time to do anything at all. It's normally not an issue, but this time around it's not particularly pleasant.
The nurse just came to change the dressing and my poor arm looks like it wandered through a particularly brutal war zone. The skin is red and irritated - it has little bumps from the tegaderm and the area is totally raw from the sticky adhesive. Yuck. To top it off the port needle has this little place where the needle joins the tubing, and the nurse last time failed to put the usual gauze under that area, so now I have a nice little HOLE in my arm from that thing digging in. Double yuck. Thankfully it's far enough from the actual injection site that I'm not too concerned about infection (and it's under the tegaderm, so clearly the area is sterile), but still. Not fun. I didn't even feel it, most likely because the constant pressure just sort of dulled the whole sensation. Again, more yuck.
Don't get me wrong, I'm thankful for IVs and for all the medical miracles that help CFers and blah blah blah. But truth be told, next Wednesday cannot come fast enough. I am soooo over these IVs and ready to get this damn access pulled already! If not for my sanity's sake, then definitely for my poor arm!!
Tuesday, March 17, 2009
The reason for this change is my awesome, amazing, and basically unbelievable doctor. She and I decided at my appointment today (5 weeks down!) that I should switch back to Merrem for the final week. Apparently my recent cultures showed some insensitivity to Aztreonam, which probably explains why I haven't been feeling 100% for the past few weeks. I have to say, it's kind of a relief to learn that my cultures just aren't sensitive to the abx combo I've been using, because while that certainly sucks, it's a whole lot better than having PA so strong I can manage to get flare-ups even while on the correct drugs. And it also means that there's a good chance I'll feel a lot better by the time they pull my access next week, which is exciting. I was doing great on the Merrem during the first few weeks of this IV course, so I have high hopes.
My doctor and I did talk about transplant. My FEV1 this time around was 35%, which is about where I typically stand when I'm healthy, but not yet up to baseline. My baseline is more like low 40s. So there's still room for improvement, of course, but things weren't too bad. I think both she and I were a little disappointed that this is where I stand after 5 weeks of IVs (even considering the Aztreonam wasn't doing the full trick, between that AND the Tobra IV I still should have had a little more improvement I think), but there's not a whole lot we aren't trying at this point. She noted that they don't really take into account infection frequency in calculating lung allocation scores. I told her I was still interested in delaying transplant as long as possible. I think the mark of a really good doctor is that even with things not being where we would both like them, still left the appt feeling SO MUCH better, and with sort of a renewed commitment to fighting this thing for as long as I possibly can. She's not giving up on me right now, and she doesn't think I'm ready to be listed, and frankly that's good enough for me. I can still do a lot of what I want to do, and while I am really worried about what's going to come of work, for right now I'm going to keep trying to be a lawyer and a CF patient. So watch out crappy CF lungs, because I'm waaaay over this little comedy of errors we've been acting in together for the past few months. And this time it's personal.
But for tonight, Sammy and I had some fun in the dog run, I had a great St. Patrick's Day dinner with good wine and a good friend, and now me and the boy are watching a very funny re-run of The Office . . . without the gravity drip!
Wishing you all a very happy St. Patrick's Day!
May the road rise up to meet you,
May the wind be at your back,
May good friends be there to greet you
And your table never lack.
May your life be filled with laughter,
and your heart be filled with song.
May God shine His light upon you,
As you live your whole life long.
Sunday, March 15, 2009
Well, apparently the answer to that question is a big resounding I DO, because, well, I did. Not really bad sick, obviously, but definitely a little more short of breath, tired, achey, and coughy kind of sick. I think I've finally managed to come through it: my case settled and I finally wised up and (with the exception of the obligatory social Friday night) made the smart choice to stay in and really give myself a chance to recuperate this weekend. So I've done a lot of sleeping, some working out, walking my dog, and as much eating as I can handle in between the rest of those activites. And I haven't done a single minute of work since Friday. I'm actually pretty proud of myself.
The thing is, I'm NOT okay with this. I'm not okay with the fact that even though I've been religiously doing IVs, adding extra treatments, and pretty much trying everything I know how to do (excepting of course, for cutting my hours, which I KNOW I should be doing), but yet I still get sick! I get sick ON IVS! WTF?! Sorry, I don't mean to sound like a whiner here, but it scares the living shit out of me to think about the fact that I am four weeks into IVs and still getting short of breath just playing with my dog. It's not okay! It makes me feel like I might never ever get back to where I was, and I'm not even sure what I even mean by that anymore. I just have this mental image of myself as really happy, really energetic and excitable and up for anything, even downright hyper. And I still feel those things, inside, but when I try to act on any of them I feel totally stunted. I look at my puppy and all I want to do, basically in the whole world, is run wild with him in the dog run, or walk briskly down the street with him at my heels, out to enjoy a saturday in the park and have a little fun. Instead I find myself sitting lamely on a bench, watching him as he once again amuses himself with the other dogs and their more energetic owners. And then I get up, I try to make it all happen, but I only last about 5 minutes before I'm panting, coughing like crazy, and watching as the other owners go scattering in all directions in search of somewhere less contagious. It's really getting pathetic, seriously.
I don't understand it. I think the worst part is, I honestly feel like I'm failing. Failing myself, failing my family, failing my doctor. I do so much and it's not enough, and I'm too scared to take the only step I feel like there is left for me to take, which is probably just bucking it up and leaving my job. My job that I worked so hard for. My job that, random and lame as it might sound, I honestly love. My job without which I HAVE NO IDEA WHAT I WILL DO WITH MYSELF. But maybe it's that or my lungs. Maybe the writing's on the wall and I'm just too stubborn to admit it right now.
I know so many people with CF. So many people with lung function right around where mine is. And for some reason none of them have been on IVs for all but two and a half weeks of 2009. I mean really, we're in MID MARCH and I've literally been on IVs more this year than I've been off. That's not okay. There's something wrong and I'm so so sad to have to admit that.
I'm scared of what will happen if I leave my job and nothing changes. I'm scared out of my mind about what this means for my chances of living with this disease. I'm scared because they don't take frequency of infection into account when calculating your score for transplant and I know that a really big one right now could really do some damage. I'm so scared that one of these times I'm going to find myself unable to recover, and I have no idea how to tell any of this to anyone in my life because, honestly, I don't want to drag anyone else down. I can't win right now against this CF, and I feel like the only way I can keep fighting is to just stay positive and keep working, keep pretending that I'm totally fine with all of this, or at least that I've reached a place where I can be strong about it. And I guess 90% of the time I do feel that way, and I am grateful for the things I can still do, but for the other 10% of the time I feel totally out of control. And if I'm totally honest I would also say that I am sometimes unbearably sad about this disease and what it's taken from me so far. I just desperately want to hang on to whatever's left.
There's much more than just this going on in my life, I promise (and most of it fun!), but for tonight that's all I've got.
Monday, March 9, 2009
I have an addiction . . .
. . . to TV infomercials.
There, I said it. And it's true. Really sadly, pathetically true actually. I love the damn things, to the point where I will often just sit there mesmorized, convinced that the product on my screen is the answer to pretty much every problem in the universe. "Wow!" I think to myself, "If I had that special slicer/dicer/whatever thing, I would totally julianne my own potatoes!" Who cares that I don't honestly know what it means to julianne a vegetable? And honestly, does it really matter that I haven't purchased potatoes for myself in several years? Clearly buying a miracle slicer would change all that!
No, I don't normally actually BUY the stuff. I pretty much just sit around in a trance imagining what I could do with whatever the greasy looking man and overtanned woman on TV happens to be selling. Although before you totally write off the whole thing, I should say that I once did buy a blender like thing called the "Magic Bullet" which is honestly the best thing I've ever purchased. I never made any shakes in my old blender because it was a pain to clean, but this thing lets you blend stuff right into a cup. I put some Boost Plus, vanilla ice cream, and chocolate syrup in the magic bullet and let it do its thing. The Boost Plus is pretty much the only thing I'll drink in the high-cal supplement category, but I actually really like these shakes. I normally use chocolate, but vanilla works too.
Anyway, this has nothing to do with CF, beyond the fact that I may have developed this obsession through bored hospital channel surfing. Right now I'm up waiting for my tobra IV to finish infusing, and I just stumbled across a GREAT informercial for some sort of miracle space saving hanger (it bends). I have plenty of hangers, and I'm pretty sure this invention won't help me gain weight like the blender, so I probably won't order it, but I'm pretty sure it could do wonders for my dress closet!
On a personal health note: things are fine. I'm still on IVs (into week 4) so that's nothing new. No more issues with the gravity drip, thankfully. Had a great weekend with some friends and some really amazing NY food and weather. My parents called after the CF Ski event this weekend in Vail, which raised over $450,000 for CF research in three days. Wow, good going guys!
Also, if you have a second, please take a little time to visit The Finding Jenn Project website. This was started by a great CF friend and Cyster of mine in memory of a wonderful knitter who fought an amazing battle with CF. For all you knitters out there, this is a great way to strut your creative stuff AND help out CF patients!
Thursday, March 5, 2009
On an entirely separate note, I recruited someone to be an organ donor today. Actually, to be fair, he said he had wanted to be a donor for a while now, but he hadn't signed the necessary forms in NY. So I encouraged him to get cracking, and he registered! Double woo-hoo! But I guess that brings me to my next question for everyone out there, which is this: how do you guys typically bring up the subject of organ donation when dealing with non-CFers?
Most of my "cysticly-challenged" friends probably aren't donors. I don't think this is because they don't want to be, necessarily, but more due to the fact that NY has a pretty annoying registration process. It's not just a sign your license and go sort of thing. And once you've registered, you're pretty well locked into it here. Your family can't override your wishes and you have to jump through a couple hoops to get yourself off the registry (as I understand it). Some people I've chatted with find this system scary, and others -- like my friend today -- just "haven't gotten around to it." Now, granted, most of my friends are in their 20s and 30s, so they hopefully have plenty of years left in which to register as organ donors. They also mostly don't have wills or healthcare proxies written either, so I think a good part of the non-donor thing is just an unwillingness to plan for anything involving end of life stuff. Which I totally get, btw. I've been faced with the possibility of my own mortality basically since I was born, and I didn't even draft a will until last year. It's just not the sort of thing anyone really wants to think about, obviously.
At the same time, I really want my friends to at the VERY least consider organ donation, and preferably sooner rather than later. I think this means that I need to talk to more of them about it, but it's a tough topic to bring up. For one thing, it doesn't exactly fit well into our normal conversations and for another, well, it's just kinda awkward b/c I feel like people always think I'm PERSONALLY asking them for their organs. But honestly, let's face it, short of determining that I need a living-lobar transplant there is VERY little chance that I'm going to somehow end up with my best friend's lungs in my chest (knocks on every piece of wood in the apartment). So come on guys, this isn't about me. It's about giving someone -- or, in most cases, multiple someones -- a second chance at life just by agreeing to share what you no longer need! What could be difficult about that decision?
Anyway, here's my personal top ten list of reasons to be an organ donor. Feel free to use these on your friends/coworkers/eccentric family members/whoever else will listen:
1) Let's start with the obvious: Organ donation saves lives. Period.
2) You never had much of a use for that second kidney anyway.
3) You're so awesome, just think how much better the world would be if there were three or four people all with a little bit of you inside them!
4) Every time someone donates an organ, an angel gets his wings.
5) Despite what this movie would have you believe, you're probably not going to have too many chances to use your organs after you're dead.
6) Did I mention organ donation saves lives? Yes? Well good, because it does.
7) Signing up to be an organ donor takes less time and is more productive than any of the following activities: updating your outdated My Space profile to reflect that Britney Spears is not, in fact, still your favorite recording artist of all time; programing your DVR to record the entire season of Bravo's "The Real Housewives of Orange County"; or filling out that "25 random things about me" survey on facebook.
8) All the cool kids are doing it.
9) This puppy really, really wants you to be an organ donor:
10) No really, I'm serious: ORGAN DONATION SAVES LIVES!
Happy recruiting, everyone!
Tuesday, March 3, 2009
Step 2: Return home from work to find pole and tubing, but no additional instructions nor call from the nurse.
Step 3: Call 24 hour line, get answer that no nurse will be coming because none was requested. Think back angrily at step 1 of the process and argue with man on phone. This will get you absolutely no where, of course, but do it anyway because arguing with people in the medical field is fun!
Step 4: Consider skipping yet another dose. Decide against it. Take some comfort in the fact that you're an educated, semi-intelligent woman (albeit one with aboslutely no clue what she's actually doing).
Step 5: Assemble pole and tubing. Squeeze udder-like tube thing on the top of the tubing. Do this largely because you've seen nurses do it in the hospital. Get excited when medicine enters said udder-like tube.
Step 7: Role ball-clamp to open tubing. Here's the fun part: Because you're an educated woman, make the logical decision that the clamp should be OPEN. And because you also happen to have no clue what you're doing, don't stop to consider the possibility that the ball clamp might actually control the flow of the medicine.
Step 8: Watch as medicine begins to drip out of tube. Success! (And yes, for those of you who know what's coming, it was dripping...it started off dripping because there was air in the tube.)
Step 9: Attach IV. Settle in to watch 30 minutes of TV while 30 minute IV infuses. Look up at IV med 10 minutes later. Notice it is basically empty. Disattach tubing from port and watch as a STEADY STREAM of meds flows out of the tubing. Freak out.
Step 10: Log onto website and receive wonderful information from fellow CFers on where you went wrong. Also receive assurance that you will not die from overdose. Resume breathing.
So yeah, I don't recommend actually following the above advice. Definitely makes for a stressful evening. On the other hand, if you prefer your aztreonam short, sweet, and highly concentrated, go for it.
Sunday, March 1, 2009
The fun news is that it looks as though I'm going to Australia for work in the next week or so. We have a client out there who may need a team of our attorneys to come out for some review, and I'm lucky enough to be on the team! They actually asked me a while ago and I was initially bummed because I'm still on IVs and thought there was no way that my doctor would let me go. But I mustered up the courage to at least ask and, to my surprise, she was all about it. She didn't even hesitate in her response, and has been awesome about helping me get things "in order" from a CF standpoint -- including making contact with the CF center out there just in case I need any help. I guess the moral of the story (if there is one -- who says stories have to have morals anyway?) is that it's really amazing when you're able to find a doctor who LISTENS and who helps make CF work with your life, instead of always insisting that you bend your life to the demands of your disease. It's funny because I know its my CF team's job to take care of my health and to give me advice on how to best care for myself regardless of whether I want to hear it or not, but I appreciate it when they also recognize that an extension of that of duty is to help me actually LIVE my life within those limitations. So, for example, when my doctor says I need to slow down a little and suggests a 6-week course of IVs, I understand that she is doing her job. And when she nonetheless recognizes the importance to me of being able to say yes when my firm offers me an amazing opportunity -- and even more when she actively gives up her time to help make sure I can safely take advantage of that opportunity -- well, that is when I know for certain that she is AWESOME at what she does. So all hats off to Columbia Presbyterian. I knew there was a reason that I loved them so much.
On a health note, still on IVs. It's been 2 1/2 weeks so far and I really feel great. Last Monday I saw my doctor and my FEV1 had climbed back to 35%, which isn't awesome, but isn't as terrible as they could have been for sure. Even better (cue the drumroll) . . . my sats the other day were 95%!!! I almost jumped out of my chair and did a little happy dance right there in the office, because frankly I was a little convinced that I would never get above 93-94 again (at least pre-tx). So needless to say I have bid a fond farewell to my O2 concentrator for a while, night excepted of course. It feels really freeing to even be able to do light exercise without the thing. Although I did get an amazing Sequal Eclipse portable concentrator that is only 14 pounds, so I will post pictures of that soon. I owe so many back pictures at this point it's scary.
The only negative thing right now is that my stupid home healthcare company (and it shall remain nameless, but I'll give you three guesses) managed to f-up my meds and brought me my aztreonam IV in bags. BAGS, people! Honestly, I know how spoiled and whiney this sounds, but I have NEVER done IVs in bags at home. I've never had a pole outside of the hospital. Or a pump, for that matter. Always my IVs have been in the balls or the grenade bottles or the push syringes. And to be honest, the week before I leave on a trip halfway around the world does not seem like the best time to change this system. On top of it all the homecare geniuses didn't deliver either 1) a pole/pump, or 2) tubing to connect the bags to the access line on my port. Nevermind that I also needed a dresing change, which was also not offered. So now I have old dressing (ewww) and no way to do one of my meds. Brilliant. Suffice it to say I am not happy with them, but here's hoping it all gets sorted out by tmw.
And finally, I taped a video this weekend to help out with the American Airlines Celebrity Ski event benefiting the CFF. This event is held every year and is a major fundraiser, pulling in normally around $1-$2 million and sometimes even more for CF research. I've been lucky enough to be a part of it as a CFF ambassador and speaker for most of my life, and it's really just an amazing event filled with wonderful people. For the past two years I've been unable to go because 1) it is held in Vail, which is too high for me to go to unless I want to be on 24/7 O2 and 2) two other girls with CF go to the event as well and I have no desire to expose them to the PA that keeps causing me so much trouble. So now I just send videos. Anyway, if you're interested in learning more about the event, check it out here.
And yes, the tall brunette in the middle is me. Unfortunately.
That's all I got. Hope you all had a great weekend.