- I am a 31-year-old sister, daughter, friend, law school graduate, CFer, student of public service, blog writer, patient, Sagittarius, reader, Top chef fan, double-lung transplant recipient, lover AND fighter, and dog owner living in NYC's beautiful West Village. I love all things colorful, funny, inspiring, or needlessly sarcastic. I share my city with 10,000,000 other remarkable people, share my disease with 70,000 other beautiful souls, and share my apartment with one really fat mutt with a kick-butt personality. We make it work.
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Links/Blogs about CF and Transplant
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!