- 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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Monday, December 29, 2008
I've made a couple of decisions lately that are probably either a lot more or a lot less major than I'm making them out to be, if that makes any sense at all. The first is that working full time, at a more than full time job where I'm pretty much expected to be available for 24/7 work (whether or not that is actually asked of me), is just not going to cut it anymore. I still want to work a full schedule, but I think I need to ask to do 10-hour-plus days 4 times a week with a full day off in the middle instead of 5 10-hour-plus-days with the possibility of working all weekend, which is the current schedule. Don't get me wrong, my work is awesome about giving me the time off I need and respecting my boundaries. But junior associates at major NYC law firms are expected to bill ridiculous numbers of hours during the year. Three times already I have had assignments, often lasting a month or more, where I have been asked to work 12 hours a day, 7 days a week. It's part of the job description really, and it's why we get such great salaries and so much flexibility with our time when we're not super busy. But it doesn't work for me - I need a much more regular schedule - so I am going to talk to my job about setting something up at some pro-rata amount of my salary with fixed hours every day and no real expectation that I will be available beyond that. I just have to do it - I have to have the time to take care of my health and do all the "little things" like going to the gym that are quite frankly NOT OPTIONAL for me at this point. In two years I may have already been transplanted or I might still be inactive on the list, but either way I do NOT want to look back and question whether I could have made a smarter choice with work (without giving up my career, mind you) and maybe helped my body.
The other decision goes hand-in-hand with the above: I am going to get a portable O2 concentrator. My sats just aren't great anymore, they dip into the upper 80s sometimes even when I'm not super sick, and my heartrate sometimes goes up to 120-130 just at rest. Not okay, not what I want, and so I'm going to do something about it. I think I've been really resistant to O2 b/c it is such an outward, visible sign of illness. People see a 27-year-old wearing an O2 canula in her nose and they just get freaked out. It's not a cough that I can shrug off as "a cold" or "asthma" or even "allergies", it's not the same as my walking slowly (which some of my friends seem to attribute more to a laid-back attitude than to my health); O2 is a clear and unmistakable sign that something is very wrong with this picture. And I'm not going to lie, that makes me really nervous. I mean, what's the point of getting up in the morning, putting on a smart new outfit and a cute coat, doing up my hair and makeup to look professional and sleek, and then ruining the whole get-up with some ugly piece of plastic? It sounds absurd to me, and a part of me feels like once I step into that world of public O2 something will change forever. Melodramatic, I know, but it's still real.
The thing is, there's this other huge part of me who wants to be healthy. This is the smart half of me, the part that managed to get through a double major in undergrad and an Ivy League law school. I want to be healthy b/c I care about the quality of my life, and I know deep down that I will be able to do the things I love for longer if my heart and lungs are as strong as I can possibly make them. For me, right now, that means making a compromise and giving my poor, overworked body a break. I can still do things like work all day and go out with friends and walk my dog, but sometime in there I need to have a little help so that I can keep going. I can still live alone in my own apartment and maintain my independence, but I have to be willing to admit when I really do need help. This is why the rest and the portable O2 are linked in my mind - they are both compromises and adjustments I need to make in order to PRESERVE the life that I have worked so hard to achieve. At least, that's the way I look at it to help maintain my sanity.
I'm lucky b/c I don't need to go zero-to-60 here anytime soon. The O2 is something my doctor and I both feel I need to have available, but not something I need to be dependent on 24/7. I just want the option of a portable concentrator so I can take it into the office if I need to be on it for a few hours each day. I have my own office with a door I can close and lock - I already do nebs and IVs in there, so what's the difference really? But I'm not going to be rushing out and wearing O2 to dinners with friends. That may be in my future, sure, but I'll cross that bridge when I get to it. And the work schedule is something I have time to negotiate. I plan to bring it up in my January review and get the ball rolling, but I'm lucky not to be in desperate need of a change right this second.
For now, things are good and the air is (thankfully) much more "real" here than it felt up in Denver. I'm hopeful that if anything good can come out of some of the stuff I've been dealing with lately it's the realization that change doesn't always have to be earth-shattering. Even scary things like O2 canulas might actually have a place in real life.
But if anyone knows how to make that tubing just a little more stylish, please let me know ;)
Wednesday, December 24, 2008
On another note, home in Denver for the holidays and totally forgot about that little b*tch called altitude. I was without O2 for the first couple of days/nights here b/c I flew in on a weekend and we couldn't get things set up until Monday. I knew my sats were in the upper 80s or so but I figured it would have to be okay for a day or so. Bad idea number one, for sure. By the time I got the stuff on Monday I was dipping into the high 70s every so often, which was definitely scary for me. So, needless to say, since getting the O2 I've been living on the stuff. I also developed a pretty nasty fever and had to see the my old pediatric doctor today, but the good news on that front is that so far he thinks it's pretty much viral. We started a prednisone burst and Cipro just to keep things at bay until I can get back to NYC and make a plan with my doc now. It's great to have such great medical teams in both cities, but kinda sucks that I needed to waste a couple of my days home feeling miserable from fevers and low O2.
The point of all of this isn't just to warn any Denver-bound cystics to remember their O2 (although that is really good advice, btw), but to point out this: it's Christmas Eve, I just ate my first real meal in two days (fueled in part by the prednisone, no doubt), and I am right now sitting with my mother, father, sister, grandmother, godmother, my puppy, and my parents' two beautiful dogs downstairs in their cozy family room, sipping cocoa and enjoying carmel corn as we all watch "Out of Africa." The table upstairs is set, and my awesome sister was sweet enough to go to the mall for me this afternoon with my list and credit card, so my last minute gifts are under the tree. I even felt well enough this evening to help peel the potatoes and carrots for tomorrow's Christmas dinner and to have a glass of champagne with the family. Tonight we will all trundle down in my parents' house (which luckily has bedrooms and bathrooms to spare) and tomorrow, although I will still have this nasty rotten disease, I will also have some very supportive family, a selection of helpful drugs, and a liberating 50 feet of tubing on my O2 concentrator to help me through it. Thank you God, thank you Life, thank you Universe.
What occured to me this year is the fact that as I get sicker, these kinds of days, nights, and moments mean a lot more to me. I sat tonight, surrounded by family and loved ones, and for one moment I thought: well, if this night is what I have left, then this is what I will savor, this is what I will take with me wherever I end up, and, most importantly, this night is what I will leave behind. And all the fevers and the oxygen and whatever other little dirty tricks CF has up its sleeve won't change tonight. Merry Christmas everyone.
Wednesday, December 17, 2008
I’m about to say something depressing. Be warned. This is not something I would even let myself think, much less say, on most days. It is definitely not the type of thing I would mention to my support system or my friends or any of the other wonderful people who work so hard to keep me healthy (both physically and mentally) every day of my life. This might not be the type of thing that parents of younger CFers want to read, or anyone for that matter, and so I want to give everyone the chance to get out now, before things get heavy. This is raw CF, pure and simple, and it isn’t pretty.
I honestly think my body is giving up.
No, wait, before anyone misreads that, I think my body as it stands now is starting to fail. I have NOT given up hope that things might be better in the future, I just honestly do not think my body is going to fully heal in its current state. This doesn’t mean that I think I’m a goner tomorrow, or in 6 months, or even in 6 years. It just means that I think my body has come as far as it can in actually fighting off this raging sea that is CF and that what I’m facing now is just a last-ditch effort to keep the flood down low enough to stay above water.
I feel as though mediocrity, even “bad”, has become my normal.
Today, for example, I wheezed my way through work. It hurt to stand, it hurt to breathe, and please don’t even ask about walking. I sat at my desk trying desperately not to need to go to the bathroom, just to avoid the pain associated with a short trek down the hallway. Don’t ask me why I feel this way, especially since I just got off IVs about a week ago. I think part of it, at least, is viral – a simple cold spiraled out of control in the way these things do for cystics – but I also feel legitimately like the past year has been a lesson in accepting defeat.
My health has become a comedy of errors.
I got some bad/weird medical news today, which is probably fueling some of this post. No, not CFRD-related, because I actually used the time between the two hours to see another doctor who conveniently works in the same building (gotta love the hospital network system). Anyway, I won’t go into details, and it’s probably going to turn out to be nothing, but the point is that when he told me a possibility that might have pierced my world a year ago, I can honestly say I felt very little. Actually, it was more than that: I felt slightly amused. Not really “funny” style amused, but more just roll your eyes style amused. My first thought was "wow, I can't tell anyone this, because it's just too crazy to even believe. People would start to think I was actually going insane." And then I did kind of chuckle, because with all the hubbabaloo out there about "cystic posers", I'm begining to think that most of us have stories that would make all of theirs sound downright believable.
I’m not beaten down, but I am in a corner.
Please don’t read this post as anything more than it is: the nighttime musings of a slightly overworked cystic. I’m tired, and I just wish more than anything that myself and everyone else who has this disease could catch a short break from the drama. I mean, in what playbook of life does it say that transplants and collapsed lungs and oxygen therapy should be de rigueur? THESE ARE HUGE DEALS! They are life-altering phenomena, and yet for me and some other people I know, they’re not. They’re run of the mill, casual topics for a lunchtime chat, nothing to get all that worked up about. It’s all so absurd when you take a step back from it: how much we put up with on a daily basis without even thinking it’s anything but ordinary.
I promise next time I write won’t be this much of a downer. To be honest, I’m already feeling like this post might come back to bite me in the ass – an embarrassing reminder of the things that sometimes run through my head when I’m really down and out. But it’s all real, it’s the skeleton in my closet, and that skeleton right now is wondering how she came to be as far gone as she is.
Tuesday, December 16, 2008
That's right, I'm taking a two-hour blood glucose test!
Try to contain your jealousy. Please.
For the uninitiated, let me list just a couple of the awesome perks I will be enjoying at 9 am tomorrow morning:
1) A free 5:30 am wake-up call so that I can get my nebs and vest done and get ready for work and take my puppy out before I need to jump in a cab to the upper east side of Manhattan.
2) A not-so-free cab ride through the snow-covered streets of Manhattan to said upper east side (bonus prize: morning traffic!).
3) One breakfast-free morning so I can take "fasting" levels.
4) One fasting level blood draw.
5) Another freebie: this time in the shape of a lightly carbonated, highly syrupy "glucose drink" which is best described as Pepsi after it's been left out and opened for two days, fortified with extra sugar. This will likely be warm.
6) Two hours of chill time in the waiting room. Again, hospital center is on the upper east side and my office is way down on Wall St., so no chance of doing anything productive.
7) Another blood draw!
8) Another not-so-free cab ride, followed by several hours at the office trying to make-up for the time I'll miss during the test.
9) A chance to compete for the ultimate grand prize: CFRD! Just about the best Christmas gift a girl could ask for. Hey, diamonds are for wimps.
Okay, I'm done being a sarcastic b*tch (for the time being, at least). Honestly, I don't so much mind the test. We've been trying to get one done FOREVER and I keep going on prednisone, which messes with blood sugar levels, so I haven't been able to get it in. I'm much more concerned about that last part, because I just REALLY don't want to have anything come back weird with this test. It's been kind of a rough year health-wise and I could use some good news on this one. (And for those wondering what I mean by CFRD, check out more information here.)
So here's hoping it's relatively painless and (most important) that the results come back absolutely normal. You know, so that I can get back to the important things in life...like bitching about blood draws.
Tuesday, December 9, 2008
2) I am officially IV free as of last night. I actually finished the meds on Sunday night but the home healthcare nurse couldn't come to deaccess me until Monday. Sheesh. One of the annoyng things about an arm port is that it is tough to do any of the maintence work (flushing, accessing, deaccessing, etc) yourself. At least it is for me, especially since it's in my upper arm. Basically if it requires more than one hand to do in a sanitary and safe manner, I can't do it. But at least I can plug my own meds in, etc. And I'm free after 4 weeks!
3) Another awesome suggestion from a fellow cystic (props to Amy for this one): I am now recording my O2 levels throughout the day to see if I need O2 at all for activity. This is based on my realization that my sats haven't bounced back as well as they normally do from my last infection. So if anyone out there has any O2-related advice (and I've already gotten a lot from some great sources on CF2), please share.
4) More and more I am realizing just how much CF sucks. I consider myself a positive, proactive person, but the progression of this disease is getting a little overwhelming for me. I try to take it one day at a time, do what I have to do and then move on to the better parts of life, but when I'm really honest with myself I have to admit it's difficult. Lately I have just been carving out a very specific place for CF in my life because I find that if I give myself 10 minutes every night to relax with a cup of hot tea or a glass of wine and really let myself *feel* this disease, then I can go to work and hang out with friends and do all the other things I love to do without dwelling on my CF. Some nights I don't need the time, but I try to take it anyway and use it for something positive, like visualization of my PFT goals or just thinking about all the awesome things I plan to do post-tx. Make sense? Probably not, it's a very personal thing I guess. Everyone deals with things in their own way - for me I am learning that even though I already give CF so much of my time, that time is mostly practical things like treatments, and I need a little something extra on top of that to process the emotional side of it all. And then if CF starts to overwhelm me at work or somewhere less conducive to those emotions, I can sort of sideline that emotion for a few hours knowing that I am not pushing it away, I'm just waiting until I can give it the attention it deserves. At the end of my 10 minutes I pick myself up, shake it off, and get on with my life. It might not be the answer forever, but right now it works.
My puppy is crying. He seriously thinks that the maybe 20 minutes an evening when I'm home and not paying tons of attention to him is total torture.
Thursday, December 4, 2008
Anyway, the point of all this is that as of yesterday the number of drugs in my medicine chest officially went up to a million and one. I added Pulmicort -- the neb version -- which is apparently a corticosteroid similar to prednisone. (See previous posts for my thoughts on prednisone and all its awesomeness.) So now I'm on yet another version of this thing, but I get to neb it this time. It's basically round two, only now it involves more time and takes up more space on my counter. Lovely.
The thing is, I tried it this morning and discovered that, especially when taken right after albuterol, this drug makes me totally shakey and jittery, and it lasts for quite a while after I've finish the neb. Seriously, I was trying to write and finding it difficult because my hands were shaking. It actually bordered on funny: there I was in the law firm and while my brain was perfectly focused I felt like my body was all over the place. I was delibrately trying to steady myself just to keep from spilling my coffee. And yes, I am in fact dumb enough to drink caffeine while already on a steroid rush. Suffice it to say that I think I'll cut the coffee out of tomorrow's routine.
By the way, gotta love the internet. I decided to look up "pulmicort side effects" and found an asthma message board of some kind where mothers were writing in to tell about how their kids had started wetting the bed and chewing their toenails (TOEnails, mind you) since starting on this drug. Hmmm. Maybe I should be thankful I'm just feeling a little ADDish.
I shouldn't complain -- I'm actually pretty excited to see if this helps me keep down my rate of infections and exacerbations. I respond so well to prednisone, despite the side effects, that I'm always really relieved when my doc tells me to go on it again. So this will maybe be a longer term solution, and that would definitely make it all worth it. I just wonder, has anyone else out there tried this drug? And did you find that you had a lot of side effects or shakiness? I'm kind of curious to see if this is going to affect my appetite or my sleep patterns like prednisone does. I never get roid rage or anything (knock on wood), but I definitely do eat a lot on steroids.
Happy drugging everyone.
Tuesday, December 2, 2008
Anyway, the other news is that I get to continue the IVs for another week at least. Next week I will meet with my doctor to see where we are and what to do next. That's not so bad though. Something about this last infection hit me hard and it's taken me a long time to turn the corner into feeling well again, whereas I normally start to feel better within days of starting IV abx. So I agree that it's better to play it safe and really knock this thing out right now. And like I said in my last post, the practical little day-to-day parts of CF I can handle. The IVs and the treatments and the pills...after 27 years, you get pretty darn good at just sucking it up and doing what needs to be done. It's just that I do all those treatments and meds to help me feel good and live my life, so when I'm doing it all and still can't seem to find my footing, well, that gets pretty lame pretty fast. So thanks to everyone who sent me encouraging messages, kind words, and good healing vibes! I definitely feel honored to have stumbled into such a tight-knit CF community.
Speaking of which, I was totally thrilled beyond words to receive a special blog award from one of my CF "Cysters" (who also happens to be an awesome post-tx inspiration). Thanks Heidi! Heidi was nominated for the award by yet another post-tx (times two!) superwoman, Christy. I'm so honored that she then decided to pass it on to me.
1) Amy: What can I say besides this girl is awesome? Not only is she totally fearless about taking frankly terrifying elevator rides up to the Top of the Fog, but she's also hardcore enough to write honestly about the horrors of the CF barrel chest. And that just rocks my world.
2) Steph: I was sooo excited to come across this blog b/c I feel like she and I share so much in terms of experience. More than that though, it's rare that someone is willing to really open up to the world about scary things like transplant evaluations and the decision about whether to get listed (yikes) -- even rarer to do so with such grace and even a sense of humor.
3) Shannon: Her blog has the coolest name ever. She also writes more eloquently than anyone else I know about the struggles of coming to terms with CF as an adult. I'm not a huge comment
4) Tina: Simply put, the bravest and most honest blog I have ever read. And written by the wife of a CFer willing to put it all out there throughout her husband's illness, transpant eval, surgery, and now recovery (yay!).
5) Lisa: Continuing on the "kickass wives of cystics" theme - Lisa definitely meets all the criteria. I love how frank she is about sharing what it's like to be a partner of someone with CF. I also love that she worte an entire novel in the month of November!
There are so many other awesome CF blogs (and just blogs by cystics) out there, but the rules say pick 5. So here are the rules for the winners so that we can keep spreading the love:
1. Post the award on your blog
2. Link me for giving it to you
3. Link the originating post nominating you here
4. Pass the award on to 5 more deserving people
5. Post these rules for your recipients
Saturday, November 22, 2008
Yesterday I finally bit the bullet and asked work for some real time off. Not my normal "I need a couple of days to check into the hospital and I'll be back the minute I'm discharged" routine, but honest to goodness time off for my body to heal. As in, the entire rest of the month. Asking for it was one of the hardest things I've ever had to do, lame as that sounds. Seriously, how spoiled am I that I count sitting down with the most understanding people in the world and asking for what is technically only about 5 days off (holiday doesn't count, obviously) as such a traumatic experience? It really was though. It's like the IVs: I can handle the practical parts of having CF -- I can do to all the doctor appointments and do the tests and gaze at the x-rays and even talk to people about being evaluated for lung transplant -- but I totally freeze up when this disease actually threatens to interfere with my LIFE. I know it sounds really trite, but I was lucky enough to find a job that I love with people that I really enjoy working with, and I hate hate hate feeling like I'm not pulling my weight or living up to their expectations.
I miss my job. I miss my friends. I hate getting on the phone with my family and hearing their voices so filled with concern and worry. I hate seeing my puppy forlornly curled up over by the door to my apt waiting for a walk that I just don't have the energy to give him. I hate feeling like such a complainer. More than anything I just hate CF.
I know that with time and rest these IVs will do their magic and I'll be back on my feet. I just hope that time comes sooner rather than later!
Sunday, November 16, 2008
Most cystics could probably write a novel about healthcare frustrations. Hospital stays (or lack thereof in some cases), drug reactions, homecare companies, insurance issues . . . you name it, and I'll bet there's a cystic out there with a story you wouldn't believe. In the grand scheme of things, a couple of days of missed IVs and a botched hospital admission probably don't rank too high on most people's list. Hell, they don't even rank that high on MY list, to be honest. It's really more of an inconvenience than anything.
But on the other hand, after how much many of us fight to stay healthy, "giving in" and admitting we need extra help (from hospitals, IVs, employers, and caretakers) is never easy. To
screw up your courage, bite the bullet, ask for the time off, face the questions and the worry, accept the offer of extra help from a friend or family member, pack your bag for the hospital, and then have it all go to pot right when you feel too weak and miserable to really take control of the situation . . . well, it sucks. Maybe some of the fault lies in the healthcare system or with the hospital administration, but in my case this time a lot of it was just bad luck and the joys of getting older with a progressive disease. I know I'm not the first CFer to develop an allergy to a drug that used to work great for her, I guess I can't be too angry about it, but right now it's still frustrating.
So there's my rant for this evening. On a more positive note, I finally received my new drugs today (still on tobra, replacing the zosyn with merrem). Hopefully within the next couple of days things will pick up dramatically, and here's to no more setbacks.
Wednesday, November 12, 2008
So yeah, the waiting. I waited, and waited, and waited, and I was fine with that. Really. So then, at around 3:30 (after several hours of waiting room bingo) I finally learned that I was going to room 413. I was nodding my head and gathering my bags when the woman adds, nearly under her breath, "bed 2." Um, excuse me? This room isn't private? Which is when I learned that absolutely ALL private rooms in the hospital had previously been booked and that patients meeting strict isolation criteria were still have problems getting placed sans roommate. Apparently every single person living on this island decided to show up today at my hospital's doorstep and demand not just a room, but a private one. With a view of the river, if possible.
So I called my doctor. We talked it out. She explained that there was absolutely no danger to me, that she would never agree to allow me to be placed with anyone who posed a threat (something I wholeheartedly believe b/c she is the most amazing doctor I can imagine) and I countered that I just wasn't comfortable with the whole situation. No other options were available at the hospital, so we eventually reached the conclusion that I should just go home and do IVs from here. It's not ideal, b/c one of my drugs needs to be administered 4 times a day every 6 hours and I live alone, but in the end it was the only position we both felt okay about. And honestly, I am SO relieved. I actually had tears in my eyes during the whole ordeal, and I am not one to cry about these sorts of things. I was definitely overwhelmed, and I love my doctor even more for working with me.
I feel terrible for being "difficult." Even though I know this was the right choice for me and that ultimately I did what I feel was the safe thing, I still can't stand that I had to cause such a fuss to make it all happen. I hate not being a good patient, but I also know that sometimes that means more than just doing what you're told.
Tuesday, November 11, 2008
The worst part is leaving my puppy. I tried to explain that when I get out I'll have lots of energy and be able to take him on really long walks, but I don't think he really gets it. Here's to wuick recoveries!
Friday, November 7, 2008
PS: the rest of the site is cool too!
Wednesday, November 5, 2008
Thought is the operative word there. I felt fine this afternoon...a little rundown but no big deal. Then I showered to get ready for dinner. Started coughing up tons of goopy junk. Gross. It got so bad I had to sit down in the shower to catch my breath. And it just kept coming and coming. My throat was on fire. I pulled myself out of the shower, made it to my bed, and proceded to spend the next 30 MINUTES just putting on jeans and a top. My hair was dripping wet, my dog was upset because something was so clearly bothering me, and I could not make it back to the bathroom without gasping. I tried to put on my O2 just to get ready and catch my breath, but honestly when I looked into the mirror and saw myself gasping, O2 canula on my face, wet hair hanging down, and now with less than 15 minutes before something I have been really looking forward to, well....I just sank down onto the bathroom floor in tears. Too much, too much. I feel like I can handle this disease most of the time, like I kind of have a grip on my own reality and have learned to excel while balancing my own needs and limitations. But seeing myself in that mirror was like looking at some sick stranger. I could not, for the life of me, connect myself with that gasping girl staring back at me.
I know most of you are waiting to hear about how I made the smart choice and curled up in bed, O2 safely on, to rest and relax my body. But I didn't. I picked myself off the floor, dried my hair, put on makeup, and went out to dinner anyway. And I tried desperately to seem okay, even at one point snapping at my wonderful companion when he asked if I was alright for the fifth time. I told him "How about I just tell you if I'm ever NOT alright, okay?" God, what a cruel thing to say to someone who was just trying to protect and help me. But I couldn't help it...all I could think about was that I had to push this CF aside, had to make it through this evening that I so wanted to make special.
Now that I'm back at home, I don't know that I regret going. I did what I did, and I'm sure in the long run going out and eating a good meal wasn't the worst thing I could do for myself. I even feel a little better now having moved some of the gunk around during the coughing. But I know something's not right, and I just hope that it's a one-time bad moment, brought on by too much excitement between halloween, the marathon, and the election. Maybe if I stay home tomorrow and really rest I'll feel better. Or maybe tomorrow I'll wake up feeling fine. CF is tricky like that.
What I do know is that tonight I was challenged by my disease. Challenged to confront my sick self and make a decision. And I made that decision, in the only way I knew how at the moment. But tomorrow, if challenged again, I hope that I'm strong enough to reach out and ask for help if I need it.
Monday, November 3, 2008
Unfortunately, some people seem to think that coughing in public gives automatic license for them to know every little detail of what's going on with my health. Don't get me wrong - I understand the impulse. I'm actually very sympathetic to the germaphobes, because I tend to be a little cautious about going near people who appear sick as well. But the difference is that I typically try to handle things discreetly, without bothering the cougher/sneezer/whatever, and certainly without calling any unnecessary attention to the situation. Most of the time I'll just quietly remove myself from the area around the possibly ill person, and if possible I'll do so in a way that looks natural and not offensive. Hey, it's just being polite as far as I'm concerned.
As an experienced cougher I am NOTHING if not polite about my public cough. I cover my mouth, if possible I cough into my shoulder, and I'll purposefully turn away from people around me if I can. But still, the looks and comments come flying. The other day a secretary at my law firm commented that "everyone on the hall is wondering what's going on in here" because of my coughing. She went on to jokingly accuse my co-worker of strangling me. Um...awkward. Other comments are more general, "nasty cough you've got there", "you should be at home in bed!", or my personal fave: "you know, if you stop smoking now that cough will probably go away. You're young enough!" Ouch. Nothing more annoying than being accused of a lung-destroying habit when you devote hours every day to keeping your lungs HEALTHY. But by far the worst comments are the ones that actually imply that I have no right to be out in public because of my cough. Without bothering to remove THEMSELVES from the situation, some people seem to think they have every right to pointedly instruct me that I need to stay away. I typically respond as politely as possible, but I'm not above shaming these folks with an equally pointed comment about CF being genetic and not contagious. Unfortunately with most of the rude ones, this information doesn't seem to make much of a difference.
There are all sorts of articles out there about how chronic coughers are seriously prone to depression. I believe it. On the other hand, I try to remember that the people who stare, or comment, or downright insult just because of my cough are really just expressing their surprise that someone who coughs like I do can still do everything they can. They're stunned to see me (or hear me) coughing in the office because they know that despite that cough I'll still make the meeting this afternoon, and that while my cough might come and go, my attitude stays pretty consistently amazing. They stare and they comment because they quite simply do not understand.
So yeah, I'm tooting my own horn, but I think it's appropriate for all cystics to look around every so often and realize how amazing it is that we do all we do. More and more I meet CFers who are working, or raising families, or running marathons, or just out living really awesome lives. And all this despite, or maybe even because of, the coughing.
Sunday, November 2, 2008
Once we saw them go by we decided to walk to the finish line. On the way there we passed the CF Trust official station, so I stopped to talk. The organizers told us that they had 75 people running for them! Wow. So between them and Team Boomer I'd say that the Cystics were well represented! We chatted with them for a while and heard all about how the trust has been fundraising. It's so neat to connect with people like that over a cause.
So then we walked all the way to the finish line, which was fine until about the midway point, when I started an all-out coughing fit. Lovely. I think this might have something to do with the fact that I was out until about 4 am on Friday party-hopping for Halloween. Whoops. Oh well, at least it helped emphasize to my friends why so many people were running for CF. As if they needed more convincing.
Got to the finish, watched my friends run by yet again, cheered wildly. Right as we were leaving a guy came to take our spot at the gate bordering the race route. He started spreading out an Irish flag and then I noticed a logo on it. It said Irish Cystic Fibrosis Association! Totally random. Anyway, so then I introduced myself and he said he was the fundraising chair for the foundation over there. He said that they had two CFers running for them (out of 15 spots) - a 28 year old woman and a young man who is 21 and just found out he has cepacia. I was super impressed. He mentioned that he was going to stop by the Team Boomer party tonight, which was also cool. We chatted for a few minutes and he was really amazing. After we left my friend turned to me and said that between my friends, the CF trust station, and the Irish guy it felt like the whole race was dominated by CF. Talk about spreading awareness. I felt so proud to have been a part of that sort of amazing energy for such a deserving cause.
Anyway, the best part is that a couple of my friends have decided to try and run next year for Team Boomer. They wanted to run anyways and being out there seeing all these awesome people working for CF convinced them that they would rather run for a cause they care about than just as an individual. I feel super lucky - how did I get so many fantastic friends? Seriously.
I love Sundays like this. Brunch with friends, a truly New York activity, and then such a wonderful show of support from so many people who really care about CF. Makes me feel like I'm not just a random burdensome friend who slows the group down. The way they were all cheering and chatting with the people from the different CF groups and then deciding to run for the cause made me realize that they don't want to just ignore my CF and they don't just think of it as an annoyance. They, and a whole lot of other people, are really invested in curing this disease, and they're proud of me and the active role I try to take in spreading awareness. Just made me feel so special for the day. And yeah, I know I'm gushing, but sitting here with my puppy and thinking back on the day, it's hard not to want to gush. I guess I'm just that lucky.
To all those who ran, have run in the past, or will run in the future - you are truly rockstars. Congrats and thank you!
Monday, October 27, 2008
Poor Sampson. At least we know he can get a job doing cameo appearances at Sci-Fi conventions if Wall St. continues to crash!
Wednesday, October 22, 2008
The past two years of my life with CF have been totally erratic. One week I'm at baseline, the next I'm suddenly fighting off exacerbations the like of which I would never have imagined just a few years ago. Even my baseline itself has been up and down, to the point where I've come to expect anywhere within about a 10 point range for PFTs, and that's when I'm feeling "healthy." My sats go from 88 up to 98, sometimes literally week to week. Heartrate can be anywhere from 130 to the low 60s. My weight has fluctuated from 113 (scary, I know) to 135 (close to the goal weight my tx team identified). It's enough to make even the most experienced roller coaster fan reach for the emergency stop button.
And that's just the physical stuff: emotionally the highs and lows have been even more intense. I've been told I need to be evaluated for transplant while simultaneously I hear stories about CFers with PFTs well below mine who have avoided the list for 10 years or more. I'm told that my body is failing yet encouraged to keep working and pushing myself. There's a sense in the air that the damage is beyond my control, but sometimes I see glimmers of hope - that maybe a new drug or more intense treatments or exercise might make all the difference. I'm torn between the desire to be as normal as possible and live my life (intense work/social schedule and all) and the desire to dedicate more and more time to health concerns so that I can extend that life as long as possible. I want to take all the steps to be ready for transplant, but I don't want to expect the worst all the time. The balance between survival and actually living is constantly on my mind.
I know this seems like a kind of depressing post, but the reality is that all of this is triggered by GOOD news. Awesome news, actually. I went to clinic yesterday and blew a 44% for my FEV1 - up from 37% just a couple weeks ago. My sats went from 93 and 130 to 96 and 72. I didn't do IVs in the interim; this is all from cipro, prednisone, and a whole lot of luck and really hard work.
Am I happy? Absolutely. Happy and extraordinarily grateful. Visits like yesterday make me realize that despite some rather grim predictions, there's actually some real life left in these lungs of mine. Which is such an awesome feeling, because even though it might all change tomorrow, right now I can just enjoy the high. In the meantime, I'm writing 6 flags a letter - I think a new ride called "The Cystic" could really raise their ratings!
Friday, October 10, 2008
Close up of the sign (it says: Happy B-Day Amy! xo, Piper and Sampson)
What Sammy really thinks of my job (as evidenced by his feelings towards the legal pad)
Wednesday, October 8, 2008
Basically the situation is this: there is one particular case at my firm that has a lot of "emergencies" in the sense that the work isn't very consistent, but when there is an assignment it tends to be really time sensitive. I am staffed on this case, as are most of the litigators in my associate class. I am also on another case that has fairly consistent hours every single day and where nothing is particularly time sensitive. This second case is a very small team and makes up the majority of my work for the firm.
The problem is, every time the "emergency" case rears its head (which is about once every few weeks), the entire team has to work ridiculous hours in order to meet the deadline. As in full time, 7 days a week, for a period of anywhere from 2 weeks to 3 months. The more senior attorneys on the case are very understanding about my CF, but at the same time I feel like I can't demand too much leeway since my working less only means that my colleagues have to work more. Plus there's the fact that I don't WANT to ask for too many exceptions. Besides the fact that we're in the middle of a recession and this isn't the time to not pull my own weight, there's also the more personal issue for me: I went through 7 years of college and grad school to get where I am, I worked my ass off to get through an Ivy League law school and then to get my job at a competitive firm, and I probably sacrificed my health more than I should have. I simply don't want to have worked so hard and not to reap some of the rewards. And yes, I know 24/7 working hours aren't what normal people would call a "reward", but I'm not a normal person...I'm a lawyer ;) Seriously, I just want to be a productive, valued, and fully-involved member of the team!
Every single time this case comes up I end up sick. It doesn't take a rocket scientist to make the connection. Normal people get sick working all the time, so my body obviously CANNOT handle it. And I am well aware that health is the primary goal - that any other sacrifice should pale in the face of living long and living healthy.
"Should," however, doesn't always mean "does."
I feel like CF is robbing me of something I dreamed of and worked towards all my life. I feel like I'll never be able to be effective in a courtroom because I can't breath, I can't talk in complete sentences without coughing and/or pausing for breath. I feel like no one wants an associate who gets sick every other week. And I feel like even when I make the smart choice, even when I set limits and really stick to them, I still wind up getting sick. I'm not a "what's the point" kind of girl. I hate that question. But at the same time I feel like CF has given me just enough of a taste of what my life could be, has let me live just enough of a "normal" life to know what I'm missing, and now it's trying to take it all back. Not positive thinking, I know, and I will snap out of it and do the right thing for my health. But I want to allow myself just one chance to say how much it SUCKS before I do.
And now I'm off to go cuddle with my puppy, who by the way has proven himself the ULTIMATE in CF-friendly dogs. Not only is he hypoallergenic and more than happy to romp around in the dog run while I catch my breath on a bench, but his new favorite thing is to sleep on my lap while I do the Vest! What a sweetie.
Sunday, October 5, 2008
Meet Sampson - the newest addition to my family. He's a 4-month old Yorkie/Shihtzu mixed breed, and absolutely adorabale. Basically the mellowest, already-housebroken little guy you'll ever meet. And did I mention how cute he is?
Wednesday, October 1, 2008
Sounds awesome, right?
Well, I'm basically on week three of the drug right now. I did one burst starting in Mid-Sept. (3 days at 40 mg, 3 days at 3o mg, etc) and then my HR was still a little high so we started a second burst. I think this one has more or less helped me through whatever infection might have been threatening to take root (I also switched from TOBI to AzLi and added oral cipro), but that doesn't mean it's been fun. I still have three days of 2 pills to go and then three days at 1 pill, so another 6 days altogether. Ugh.
I am literally hungry ALL the time. This is actually a good thing, because I could use the weight gain from the extra calories, but it's still annoying. I see food and want to attack it, and if I go more than about an hour without eating I feel starved. I even wake up in the middle of the night hungry. On top of all that I'm of course still working, so I'm basically sitting in my office all day inhaling cookies, peanut butter, chips, and candy bars. Wow, that's a healthy diet. On top of that the prednisone makes me a little hyper and it pushes up your blood sugar levels, so I'm basically on a constant sugar high (made worse by all the eating). It's pretty amusing actually...I've definitely burst out laughing a couple of times when I look down and see that my desk looks like a food graveyard. Good lord.
Don't get me wrong, I am so thankful to be feeling good and to have gotten everything under control without IVs. I'm also really lucky, in the sense that Prednisone doesn't cause me any of the serious mood swings some people experience. A little hyperactivity is nothing compared to feeling grumpy or sad all the time. But still, I'll be super glad when it's all over. Maybe then I'll be able to actually stop eating BEFORE I start to feel ill from overstuffing!
1) I have owned, in my 26 years, 13 pets - 5 dogs, 4 cats, 3 horses, and 1 very random run-in with a box turtle named Toby (NOT Tobi). Of these, only three of them have been female. What can I say, I love my boys ;)
2) In college I did a study abroad program at Oxford University in England. My first night there my nebulizer caught fire. I didn't even try to bring my Vest.
3) My random obsession is probably colored lights. I love things that sparkle or light up, and I cannot get enough of shiny things. I have old friends who tease me about my "inner raccoon" because I am so drawn to anything that catches light. I would probably do really really well as a Vegas cocktail waitress if I ever leave the law firm. That or working somewhere with lots of stained glass.
4) I grew up listening to Marlo Thomas and "Free to Be...You and Me." I still know most of the words to a lot of the songs: Parents are People, William Wants a Doll, and of course the theme.
5) Dogs (and most animals really) LOVE me. I don't honestly know why. It could be because I really like them, or it could be because I'm basically a living salt lick. Whatever the reason, they literally stop in the street and try to jump up on me. I don't mind.
6) I decided I wanted to be a lawyer at around age 6 and pretty much never questioned myself again. There was a brief period in college when I thought I wanted to be an English prof, though, so I actually applied to some law schools jointly with PhD programs. My parents saved me from that mistake just in time...I would have like 6 years of school left!
Okay, that's it. If you read this, consider yourself "tagged."
Sunday, September 28, 2008
The group was a really fun combo: Amy is fantastic and one of the more bubbly personalities I've met. She and her friend from PA were obviously really excited to be there and definitely added some great humor to the day. I love love love her ability to laugh at CF -- esp. with some super hilarious t-shirts -- and was so happy to finally meet her in person. Likewise Graves and Courtney were both incredibly sweet and easy to talk to, and Courtney gets major props for travelling all the way up from Texas! Not to mention she was the only one smart enough to bring a CF umbrella ;) Finally, it was super amazing to have Patti around to dispense Tx stories and advice. Besides clearly having one of the cutest families in the whole state of NY and being tons of fun, she was also really really open about sharing her experience. That goes for the whole group, really...the conversation was very open and personal, which is so cool when you're with a group that you can relate to on that level.
So, without any more gushing from me, here are some of the pics from Saturday. Enjoy:
This is a really candid shot of Amy in the place we ate lunch. Somehow I managed to make her laugh right at the instant I took the picture.
The whole group outside of Prime Burger - the cheapest place anywhere close to 5th Ave. and a very famous NYC dive eatery.
Gotta love the incredible view from 67 stories up.
Us in front of the non-existent skyline.
A more candid version of the group on the deck. I actually really like this one.
Thanks for a great day guys!
Thursday, September 25, 2008
Whatever the reason, tonight for me is all about thinking: about myself, my life, my disease, my family, the beauty of the nightfall, etc. I guess to really put this into perspective I have to share something I haven't mentioned yet on this blog, or really anywhere. So here goes...
I was never hospitalized for anything, CF or non-CF, until I hit 16. In fact, I had only ever had one tune-up before that age. After I turned 16 I started in on a once or twice a year rotation, but my PFTs stayed really high. By really high I mean that four years ago, when I graduated college, I had a baseline FEV1 of around 85%, definitely mild for a CFer. I got "sick" about every six months or so and went on IVs for 2 weeks. After that, I would be totally fine for a long time. Compliance was definitely not my first priority (frankly, it wasn't my 2nd priority either). I rarely felt like I had CF, although it was on the backburner in my mind of course. I just didn't see any of the statistics (and I know them all from speaking at CFF events, which I've done since I was little) as applicable to my own life. I had friends with CF and considered almost all of them to be "sicker" than I was.
In 2006, I got seriously ill. I mean, out-of-control infection, can-barely-walk type of ill. By then I was older, I was in law school, and compliance/staying healthy had taken on a much more important role in my life. But I still didn't want to be sick, so I just refused. I don't honestly know what happened, to this day, except that I stopped contacting my doctor and didn't go to clinic. I did all the meds because I had standing prescriptions, but I wasn't going to stop my life to actually deal with the problem. Honestly, I think I was terrified of going in and seeing my numbers and I really wanted to enjoy my 3L year, so I just chose to ignore the whole thing.
New Years 2007 I spent in Sydney, Australia with my family. Yes, I convinced my parents (who were justifiably skeptical of the whole idea) that it was okay for us to go even despite my obvious failing health. That trip was unbelievably terrifying: I couldn't breathe and I was trying to do things like snorkel in the ocean on the Great Barrier Reef, I could barely walk, and my weight was so low that I still can't look at the pictures. Gross. Worst of all, my hands and feet were literally going numb - they had lost circulation to the point where they always felt on the verge of falling asleep. To say I was in bad shape would probably be the understatement of the century. On the way home from Australia I broke down to my parents, told them about my recent stint of avoiding the doctor, and basically swore up and down that I would try to make things right as soon as I got home. And I did. I called my doctor the minute I got in, scheduled an emergency appointment, and haven't gone more than 6 weeks without seeing her since. I also became 100% compliant with every treatment she prescribed, I started exercising - basically I bit the bullet, admitted to myself that I had squandered my safety net, and did what I needed to do.
The title of this post is taken from a comment that a wonderful fellow CFer left on my blog after the last post. I can't think of a better way to sum up my thoughts and feelings tonight. "It's hard, it's messy, and it's beautiful...all at the same time." This disease has taken a lot from me, and I've made a ton of mistakes on my path to learning how to deal with it. I am going to make a ton more, that's the one thing I can predict. But at the same time, there's a beauty in the whole thing. Not in having this disease (I won't go that far), but in surviving with it. In accepting the fact that it sucks, in overcoming all that frustration and f-ing hopelessness that hits sometimes, and in understanding that despite all the madness, it might not end perfectly, but you still keep breathing.
Tuesday, September 23, 2008
1) This past weekend a 28 year old lawyer at my firm died of a heart attack. Completely unexpected and totally unexplained (at least for now, until the autopsy is final). He was an active guy, not obese, and seemed perfectly healthy. I didn't really know him, but some of my friends had worked with him on deals. It was just shocking to everyone, I think, to realize that life is so fragile. And I think I forget that too sometimes, even though as a CFer I obviously deal with the reality of illness a little more than some. But the fact of the matter is that it doesn't take a mutated gene or a diagnosed illness - sometimes shit just happens.
2) As if #1 weren't enough of a wake-up call, today a friend of mine mentioned during a pretty casual conversation that his little brother (like way little - elementary or middle school) has kidney problems and could well need a transplant at some point in his life. Details weren't offered and I didn't pry, but it was a good reminder that you never know what someone else (or their family) is facing. And again, you'd think I would understand that by now, because people can't tell I'm sick just by looking or talking to me either. But the fact of the matter is sometimes I do forget, sometimes I feel convinced that no one else around me is going through anything nearly as big as some of the challenges CF gives me, and quite frankly, that's total BS on my part. I'm glad to have the reminder, but I do wish it could have come through happier means.
3) Ever since my exciting near-miss from the hospital a couple of weeks ago, I've been feeling amazingly healthy and also just pretty high on life. I'd forgotten how that really felt, to be honest. Not that I was ever miserable, or even really unhappy, but I guess this is the first time in a long while that I haven't felt overwhelmed. And that's freeing in a way, because it lets me focus on some of the amazing things I have in my life that I might otherwise lose track of amid things like PA infections and transplant evals. I know that part of this feeling is the joy of finally (for once!) beating an infection without resorting to IVs, but I also think it has a lot to do with the fact that over the past few months I've connected with a group of cystics and their loved ones that has given me TONS of support and advice and generally kept me sane...because honestly my friends here in NYC are unbelievable, but they can't really tell me what to do when my sats go down the toilet. So I wanted to take a second to say thank you to all the CF2chat forum members. They are so amazing - all cystics and their families should check it out! (Shameless plug)
That's all. Just wanted to get those things off my chest.
Monday, September 22, 2008
So my doctor ordered a hearing exam for me this morning b/c of all the tobramyacin I've been on lately. Strangely enough, I'm pretty sure this is the only ear exam I've ever had - aside from those random hearing tests they used to do on us at school every so often. The guy running the test thought that was a little weird too; he asked me when my last test was and I said never (unless I had one as a child and don't remember), and he definitely looked at me a little funny. Then he asked me how often I went on tobra and I had to tell him that I've been using the stuff every other month for at least 8 years, have been on it on IV form at least once a year since turning 16, and couldn't even recall how many times I've been on the IV in the past 2 years but definitely at least 4 since January. Wow. He was, to say the least, a little taken aback. To tell the truth so was I. I know I'm on IVs a lot, but to actually realize that I had LOST TRACK of how many times in the past 2 years was a little startling. Um, yeah, guess it's time for a hearing test.
For those of you unaware of all the little fun "perks" enjoyed by cystics - one of them happens to be that some of the antibiotics we take can lead to serious ear damage and hearing loss. Tobra is pretty much a prime example of this, so doctors are always warning patients to tell someone immediately if they hear a ringing in their ears, have ear aches, etc. I've been told this since I started on the old-school tobra when I was like 5 years old, but I've never really paid much attention. For one thing, my ears have always been fine, despite years of really loud music at fraternity parties and outdoor concerts. For another, I'm not exactly a quiet person most of the time, so I have to wonder if I would even HEAR a ringing in my ears were it to happen. In other words, it basically hadn't crossed my mind that I might actually have to deal with hearing loss due to my LUNG disease. But I've since learned that CF is a whole lot more fun than just lungs...
Anyway, this morning was actually a little nerve-wracking for me, precisely because I had never really thought about this particular issue. And also probably because I had no clue what to expect, which is odd for me in medical situations. It really wasn't a huge deal though. They basically put me in a room and performed some random tests on my eardrum reflexes using a little earbud-like thing, then the guy left the room and sat behind a glass window and made me repeat words back to him that he spoke into a microphone in my ears, and then they did the whole "raise your hand when you hear the beep" thing that I remember from school. And then he came back in and told me that I had "passed," but that my hearing on the low-end of the scale (bass) was on the lower side of normal. Hmmm...so I asked him if I should be careful about tobra and he laughed. Apparently tobra causes hearing loss at the HIGHER frequencies, and my hearing at that level is quote: "absolutely perfect." He said my other hearing might just be naturally on the lower side (still normal, but not awesome) or that it might have been caused by something else. So I guess those concerts and fraternity parties might have left their mark after all.
All in all a long but painless experience. And the end to a SUPER busy (and fun) weekend!
Thursday, September 18, 2008
It's a nice question, in theory, and I think we all have a couple of stock answers. Reprioritize, stop caring so much about the little things, quit the boring day job, reconnect with old friends, eat two desserts BEFORE dinner, yada yada yada. But for a cystic I think this question is (obviously) a little different, and maybe that's why it intrigued me so much that my (healthy, non-CF) friend was pointing me in this direction.
Because, quite frankly, I have been told by a number of pretty skilled medical professionals that I will likely need a transplant sometime "in the next 3-5 years" - whatever that means. (And yes, I ABSOLUTELY know that a lung transplant is not the same as being told you're going to die, but it's still hard not to consider the very harsh realities of end-stage CF that factor into that statement.) The timeline really is anyone's guess, and there are no guarantees, but that's the number they gave me. It stuck in my mind, so that even months later I have a hard time not focusing on it. And lots of cystics, whether end-stage or not, have similar stories about being given a timeline, told a number, and then left to grapple with what that means for the rest of our lives.
Surprisingly, my hypothetical answer to the "what would you do" question (move to the south of France and fall hopelessly in love) is very different from my real answer: which is to do every single thing in my power to delay the inevitable, and in the meantime to maintain as much of my everyday life as I possibly can. I've realized I actually *like* thinking about the little things, or going into work everyday, and even saving my dessert until the end of the meal (although I still eat two of them - good thing I don't have CFRD!). In short, I really enjoy my life and all the normal, maybe even boring at times, things that make up its daily routine. I am, in fact, fighting as hard as I can to KEEP my job, much as that might interfere with my dreams of handsome Frenchmen. That's not to say I'm not making some time to do some fun things I've always wanted to try. It's just that when I think of the ways I would most like to spend these next "3-5" (or more, or less) years, what really tops the list is to just keep living and breathing, and keep on loving everything that comes with that.
I think other cystics can relate, but maybe that just means our priorities are a little better from the start.
Monday, September 15, 2008
I could not be happier. Things at work are finally calming down, my family is coming in from Colorado for the weekend, my sister just sold her fashion line to a major NYC boutique, and I have some great, low-key plans with friends this week. It is honestly the best time to feel better. Here's hoping for a continuation of all the goodness for the next few days!
Hope everyone else had wonderful weekends.
Sunday, September 14, 2008
I don't go into the hospital often - definitely more of a home IVs kind of girl - but I do think admission has its benefits. Mostly the fact that the hospital seems to be the ONLY way to force me to slow down and lay off my routine a little. I do my IVs at work, and I can also work from home given the great remote access my law firm has, so it's really hard for me to rest as much as I should when I'm not pretty much forced to do so. Sitting upright and working on my computer doesn't FEEL particularly stressful, so when I'm just sitting around doing IVs I'm always tempted to just get in a few billable hours. And I very rarely take off more than one or two days tops - even last Spring when I had a partially collapsed lung (not pneumothorax, just a little airsack collapse) and multiple pneumonias, I was still pretty consistent about going in to work. I'm definitely not saying that to brag. In fact, it's something that I think I, as a CFer, really need to work on.
I know my body needs extra rest and more care. I totally get the fact that my vest and nebs are, for the most part, not portable, which means that realistically I can't up my treatments to more than twice a day without staying home. If I'm getting an infection, the best way to fight it is to sleep, drink fluids, and do 4 treatments a day, plus mild exercise. I get that. It all makes logical sense.
On the other hand, most of the time when I start to get sick, there's very little I can realistically do to stop it. My infections lately tend to come on rather suddenly and with an intensity that totally baffles me, honestly. Extra rest and treatments might help me keep the bugs at bay for a couple of days or even a week, but ultimately I don't get better without some sort of antibiotic intervention at this point. So it's hard to force myself to stop and stay home and do everything I possibly can when I know that either way, the end result is going to be pretty much the same. More antibiotics, more IVs, and then I'll feel better. Treatments and exercise will then keep me feeling good for anywhere from a few weeks to a few months, at which point something will trigger another flare-up and I'll start to feel cruddy again. Lather, rinse, and repeat.
Most CFers know that there's a lot more to our disease than meets the eye. We're well aware of the fact that even some of the most brilliant scientists in the country, or the world, have yet to come up with any really reliable method of predicting CF progression or outcome. Our lives hang in the balance between actions (treatments, proactive and smart use of drugs/abx, exercise, etc) and luck. And at any given moment, either one of those two aspects can have the advantage. We've been placed at the table, whether we like it or not, and it's up to us (and our medical teams) how we play our hand. But even the best players have to lose once in a while, and ultimately it's bound to get discouraging when you're playing with such a stacked deck and your opponent clearly cheats.
So I won't be in to work tomorrow, regardless of whether that means staying home or checking into the hospital. I'm going to add some extra treatments and maybe they'll turn out to be the aces I need to win this round. Until then, here's hoping I can get away with bluffing.
Thursday, September 11, 2008
I sometimes think I’ll live forever
Keep trudging through the quicksand of my path
And stumbling through the toxic swamp
Always breaking free
One breath before disaster.
I sometimes think I’d be okay
With losing even more than what I have
And steeling myself never to look back
So that I never
Have to see what’s left behind.
I sometimes think things will get better
If not always than at least for one short time
And searching my own self for all the answers
To give me fight to
Keep that hope alive.
It’s not that I am always thinking sometimes
I know enough to let go and let be
And all the things uncertain in my future
For the moment silenced.
Tuesday, September 9, 2008
One of those morning when you wake up at 4 am coughing. And not even a nice productive "well, at least I'm getting some junk out" kind of cough - this was just annoying hacking and those short little rapid-fire choking coughs like always happen after you laugh too hard or something. Seriously lame. So at 5:30 am I got up, vested, did some nebs, and promptly emailed work to let them know I was NOT coming in before 11 am. Then back to bed, with 02 and a couple of advil for the achiness.
Needless to say the day didn't get much better from there. A lot of headachey, woozey moments and a lot of annoying unproductive coughing does not make for a great afternoon at work. I didn't run a fever or anything, and I'm pretty sure I'm not getting an active infection again, but COME ON - I just got off IVs what, like a week and a half ago?! I'm inhaling TOBI twice a day and vesting like crazy. What more do my lungs honestly want? I know it's super immature, but days like this I'm sometimes tempted to just tell those little wankers to get over themselves and skip treatments out of pure spite.
Okay fine, don't worry...I'm not that stupid. I know my lungs are part of me and that we're in this together (for now at least, suckers), but still: little help, please?
Saturday, September 6, 2008
Books about CF and TX:
-The Power of Two (Isa Stenzel-Byrnes and Ana Stenzel): This was an amazing book about twin sisters with CF and their individual journeys with the disease and double lung transplant. Totally recommend it for anyone interested in reading a heartening, but not cheesy or sugar-coated, view of tx and life after it. They also keep a blog about their book tour and life post-tx, which you can find here: http://blog.stenzeltwins.com/
-Sick Girl Speaks (Tiffany Christensen): Less about transplant than about taking control of your health and healthcare, but also describes a CFer's life through transplant, rejection, and re-transplant. Wow. She also has a podcast at Jerry Cahill's site, as do Ana and Isa (above).
-Other books I want to read on this: Blow the House Down (Michael Taylor); Bittersweet Chances (
Books about TX in General:
-Sick Girl (Amy Silverstein): I'm not sure how I feel about this book overall. It's written by a fellow NY lawyer who underwent heart transplant at 24 and has survived for 19 years since. It's kinda brutal, and comes across as very self-pitying, but I also get the sense that it's honest (at least from her perspective). Worth reading if you can take it with a grain of salt.
-Other books I want to read on this: Taking Flight: Inspirational Stories of Lung Transplantation (Joanne Schum)Thomas Starzl): I haven't read this yet, but I would like to, I think. I'm interested in getting a doctor's perspective, even if it's not (obviously) medical advice. What does this surgey really involve? Who makes the important decisions? I'm just curious about the process, really.
-Driving Sideways (Jess Riley): It's fiction, and it's about a kidney transplant. Not a bad read, but not earth shattering by any means.
Anyone else read any of these books? Have others to add?
Wednesday, September 3, 2008
Most of the readers of this blog are probably pretty familiar with CF. You all know that the CFF has responded to the challenge of cross-infection by advancing strict guidelines. You've probably been warned by your CF doctor (or the doctor of your loved one) to stay away from other CFers. Many of you watched as the CF camps shut down in the wake of the Cepacia scares. You know what the 3-foot rule is. You have a stash of germ masks somewhere in your house. The very words B. Cepacia, MRSA, or multi-resistant PA strike fear deep into your heart. And for good reason. Nothing makes a CFer reach for the Purell faster than the threat of a superbug.
I understand all of this...in fact I fall squarely into the self-protective side of things. I admit that I'm scared to death of resistant bacteria - especially since learning my particular transplant center's criteria - and I'm downright paranoid when it comes to exposure to new infections.
But that doesn't mean I have to like it.
Look, CF sucks. It sucks to cough all the time and to be constantly dealing with IVs or treatments or weight issues. It sucks even worse when people don't understand, when the stranger in the movie theater turns and glares when your cough interupts the crucial action scene, or when the cashier at the grocery store can't stop staring at that PICC access in your arm. And it sucks the worst when you are told, again and again, that it is simply not safe, not smart, not fair to yourself or others to meet up and spend time with the one group of people who might actually, finally, get where you're coming from. That group who doesn't find your O2 cannula disturbing, who understands what you mean when you throw around terms like "plug", "port", or "FEV1", and that doesn't start looking around for your car when you mention a "tune up."
So yeah, I get it. People gotta be cautious, and deciding when to take risks about cross-infection is a personal choice. It is not a judgment against those with the superbugs or more virulent infections. It is not about trying to create a culture of isolation; it's about keeping healthy. Like those Hawaii citizens of old, we do what we can to protect our own health, even if it means sacrificing the feelings of some others. We're all just trying to survive.
Still, does anyone else miss the leper colonies?
Monday, September 1, 2008
Okay, so I got to the hospital early to do a complete upper GI x-ray series with barium. Gag. I hadn't eaten since midnight the night before and I was a little cranky, but mostly I was just worried about vomiting that lovely "milkshake" of theirs all over the exam room floor. Not pleasant. Only I didn't really need to worry, because the first thing they did was sit me down and ask all sorts of personal questions. Turns out it would be somewhat helpful if the transplant team gave patients at least some input into the scheduling of their evaluations, or at the very least consulted with those patients who happen to have a uterus at some point in the process. So Day 3 didn't end up starting with a barium test because the hospital was worried about performing an abdominal x-ray on that particular day. I kinda felt like I dodged a bullet there, actually, even though it means I'll have to go back and do the GI thing later. And yes, next time they said I could schedule it myself, which should be helpful if they're going to be so picky about the timing.
After the no-go x-ray test I went on to the cardio-pulmonary stress test, which I had never done before but had heard a lot about. Mine was done on a bike, but word on the street is that this can also be done on a treadmill. Basically they strapped me into about a million little machines, including a pulse-ox and an EKG machine, and then had me breathe into something that resembled a PFT mouthpiece (noseplugs included). All of this was to measure my respiration and my heartbeat, as well as O2 sats. They had me start pedaling the bike and then they started increasing the resistance. Every so often the tech would come over to me and show me this piece of paper with a 0-5 scale written on it, and I was to point to numbers depending on how tired I was and how hard it was for me to breathe. It didn't last too long - maybe 10 minutes or so - but it was definitely tough, and I exercise very regularly. The good news is that my entire test was normal, except for my respiration. Big surprise there. The tech explained to me that when I start working hard, I can't breathe deeper because I don't have the lung capacity, so instead I just start breathing faster. My O2 level stayed okay throughout the test, dipping down to 90 but not below that, so I was really excited because the tech told me I don't need to be using O2 to exercise. She did say that I probably should aim to keep my heartrate no higher than around 140 while working out, and that it was incorrect to assume exercise isn't helpful if you don't get your heartrate over 150. So that was useful to learn.
I went straight from that to the 6-minute walk test, with about 15 minutes in between to grab some lunch. Probably bad planning on the part of the tx team, frankly, but again, I had no control over the schedule. So I got to the tx center for the walk test still a little tired. This was my first 6-min walk test ever, but I had heard about them as well. The RT administering the test took me into a hallway and I was instructed to walk back and forth down the hall as many times as I could in 6 minutes. Aside from feeling ridiculous speed walking in a hallway, it was super easy. I made it well well over 2000 feet, which apparently put me in the very upper tier of walk-testers. I actually set a new record for my doctor, even after the stress test. It all left me feeling very in-shape to be honest. Who would have thought a tx evaluation could leave you feeling healthy?
Finally, I met with the tx team again - my doc and the financial planner. The finance thing was scary, because who isn't concerned about all the costs associated with tx, but I'm also lucky in that department and have really good insurance, etc, so that wasn't as bad for me as it could have been. I'm sure for many the finance portion of the eval is incredibly daunting. This is another situation where it's good to ask any questions you can think of and get the coordinator's office number so you can call later if more questions come up. I think everyone knows this, but tx is costly. I do think state-sponsored insurance plans will cover the procedure for people on SSDI/SSI, but I'm not sure to what extent they cover things and how exactly that works. Sorry I can't offer more there.
Finally, I met with doctor from the tx team. He told me more or less what I already knew: that it would be a little while before they would list me but that it was good I was done with the evaluation because I have a history of rather unexpected decline. He also told me I could continue to work until I and my CF doc decide it's no longer a good idea - but he mentioned that he had one patient who continued to work (on O2 and everything) right up until he actually got the call. This was great to hear, frankly, because I really really want to continue to work for as long as possible before the tx. I'm not sure I'm harcore enough to go right up until I actually get the call, but I'd like to think that I would if it's not endangering my health in other ways. One thing I have more or less decided is that when I need O2 I am going to be as open with it as possible at work. I already infuse IVs there when I need to for my afternoon dose and so far people have been really cool with it. This disease is frustrating enough without worrying about how other people will react to some O2 tubing, anyway.
Happy labor day everyone!