Thursday, October 29, 2009

Rockin' Out and Coughin' Out

Disclaimer #1: I just want to make it absolutely, perfectly, 100% clear from the outset of this post that neither I nor anyone else with any association to A Matter of Life and Breath is receiving any form of compensation or incentive whatsoever for the below-posted message. And yes, I know that even posting this disclaimer makes me seem like an overly cautious lawyer (so sue me -- ha,ha), but it's very important to me that my readers know that I am endorsing this product because of my PERSONAL experience regarding its effectiveness, and not because of any underlying obligation or reward. I also want to state the obvious by saying that I'm not a doctor nor a scientific researcher (one look at my Biology grade in high school will tell you why), and I can only make statements based on my own observations and results.

Got that? Good.

So a while back I posted that I was trying out a (relatively) new form of airway clearance called The Frequencer. I also promised that I would post my thoughts on the machine at some point, although you may not even remember that because it was frankly AGES ago (by which I of course mean last month -- time does not go by quickly when you're waiting for new lungs). Anyway, I tried out the machine, loved it, and then had to wait on my insurance to approve purchase so that I could have a Frequencer of my very own. As of this morning I'm happy to report that I'm the proud new owner of one of these great machines, and therefore feel that it's finally appropriate to come out and share my thoughts honestly here on the blog.

Disclaimer #2: Before you read any further, you should probably know that I'm what might, in less polite circles, be termed an "airway clearance slut." In other words, I tend to jump around a lot and mix things around when it comes to shakin' things up. Over the years I've been a known user of the following methods: CPT, percussor (early version -- not particularly effective), autogenic breathing, Vest (original TheAirapy version), Flutter valve, IPV, back to the Vest (Hill-Rom 104), alternating Vest/CPT, and now the Frequencer. So I kind of feel as though I've tried a lot of what's out there, and most of these methods have been at least somewhat effective for me. In fact, I think a lot of the effectiveness of these machines, in my case at least, was due to the time/circumstances in my life and my willingness to use the methods correctly and consistently. This leads me to the following conclusion:

The best form of airway clearance for you (or your child) is probably the one that is both easy and convenient to use AND makes you (or your child) feel better. Case in point, autogenic breathing was probably my biggest failed experiment when it comes to airway clearance. Why? Because I was too young and hyperactive to concentrate and do it correctly. Now days, on the other hand, I use the autogenic technique often to bring up gunk during and after my treatments, and it's wonderfully effective. What changed? Well, my lungs have changed some, but I think the biggest difference is that autogenic now meets my criteria: it's easy for me to do, convenient to use in between "cycles" of other methods, and I know it makes me feel better. Voila -- a perfect recipe for extra compliance!

Okay, so back to the Frequencer. Basically this is a machine that uses sound waves to create a vibration in the chest similar to what you would get with CPT or the Vest. It's actually kinda funky to use: you hold a speaker (honestly -- it's a handheld speaker!) to your chest in various positions on each lobe at least 3 minutes or so. The speaker has to be held to form a "seal" on the chest, and then sound waves move through the speaker and travel down into the lungs where they create vibrations. You can control the frequency and volume of the sound waves, sort of like you control the frequency and pressures with the Vest, and you can also control where on the lung the waves are hitting, sort of like you can control where you pound in manual CPT. The machine is basically silent (at least when you have the proper "seal" of the speaker against your chest) and you also only have to do the front (or the back) of the chest because the sound waves travel through muscle easily to vibrate the whole lobe. The machine is much smaller than the vest, but to be honest it comes in a much more intense roller bag (hard shell), so in the end it probably takes up a similar amount of space when it comes to traveling. Much easier to set up though -- you just plug in the machine and choose your speaker size and go. Once you figure out which frequencies/volumes work for you then you can program them into the machine's memory, so you don't have to adjust the settings every time.

Interesting fact: the Frequencer was actually invented by a cystic who discovered that standing near speakers at rock concerts caused coughing. It's like the "mucus, (prescription) drugs, and rock & roll" method of CF care, and you gotta love that.

My personal experience? Well, after two weeks of using this machine, my doctor told me my lungs sounded clearer than they had in a long time. Prior to that I had been using a combo of the Vest and manual CPT, because my mom is here pre-tx to help me. For me, the big advantage to CPT is the ability to "target" specific lobes -- I have a huge amount of trouble with my upper left lobe and often feel like it needs "extra" attention. I have to say that I LOVED how the Frequencer felt, and I loved being able to get the focused attention on whatever lobe I needed without relying on another person to help me. (As a sidenote: I'm pretty sure my mom enjoyed the break too -- much as she loves adding extra cardio to her day in the form of banging on her adult daughter!)

I used the Frequencer for 5 minutes in each of the 6 positions (stopping to cough after each), giving me a treatment of exactly the same length as my Vest. I found it easier to recline slightly and watch TV or something while I did it -- your chest muscles need to be relaxed and sitting up can break the "seal." This brings me to my only real "complaint" about the machine, which is that it requires at least one hand to hold the speaker, and that coupled with the fact that you're lying down can make writing and even reading a little tough. Consequently I did less reading (which I do while vesting) and more watching TV during treatments. I also never nebbed while doing the Frequencer, which means actual treatment time was a little longer. No one told me specifically NOT to neb, so I would ask your doctor, but I certainly never did it -- the positioning would have made it difficult anyway.

But, oh, the advantages! Beyond the targeting lobes and the general effectiveness of this machine (FOR ME!), I loved not having to feel squeezed at a time when it's tough to breath anyway. I found myself actually not dreading treatments -- shocker! -- because I liked the way the machine felt and I knew it was working, plus I got to do it all on my schedule. It didn't turn me red and itchy. And guys, avert your eyes, but it didn't cause the infamous "boob squish" that some methods (ahem) are famous for.

For those of you interested in trying out the Frequencer, I did get permission to share contact info for a rep. who can come to your clinic and help set you up with a free trial. The company handled all the work to get me my own machine (from soliciting my doctor for a letter of necessity to submitting the paperwork to my insurance) and I was lucky enough to be approved pretty quickly. I decided to share this info only because I know some CFers who want to try out this machine have had some difficulty figuring out how to go about it.

Kathy DiLeonardo, RN
SunMed Medical Systems
Office Phone: 865-797-4384 ex. 119

You can also feel free to ask me any questions and I promise to give honest answers.

Disclaimer #3: A very wise cystic (you know who you are) once said to me "one person's CF has nothing to do with another's" in terms of progression and severity. I would add airway clearance to that list. We know that there are methods that work in the clinical sense, but I've been around the block enough times to know that clinical evidence doesn't always translate into perfect results. So if you really want to know what form of airway clearance works for you or your child, I would encourage you to "shop around" a little bit. Haven't tried manual CPT in years? Well, ask someone close to you to have a go at your chest (come on guys, get out of the gutter!). That Flutter gathering dust in your closet? Sterilize it well and let your kid try it again. Think the Frequencer might be right for you? No harm done to give it a try. I know most of us have limits as to what our insurance will give us (ah for a perfect world), and I'm not saying don't stick with what you know works for you, but I am saying that airway clearance for me has been a constantly evolving art form. I was lucky enough to have a pediatric doctor who encouraged his patients to try new things and combos in order to get the maximum possible, INDIVIDUAL result for each person, and I hope that's the message of this post.

As for me, I'm off to celebrate my new machine and do a little rockin' out of my own -- no disclaimer needed.

Monday, October 26, 2009

Um, Can I Get a "Woot, Woot"?

As some of you might know (and others might have guessed from reading this blog) 2009 has been kind of a rough year on the infection front lines for me. In fact, as of September -- when I was bored and passing time during my fourth hospital stay in as many weeks -- I realized that May has been the ONLY month of 2009 when I haven't been on IVs. Every single other month has been at least partially filled with PICCs and ports and eclipse balls and gravity drips. It's a pretty ridiculous record, even considering that I've been building up to it for a couple of years (5 rounds of IVs in 2008, and at least 3 or 4 in 2007), and I was starting to think that nothing could break what looked to be a pretty consistent cycle.

Until now, that is.

I'm pleased to announce that October is right on track to become the second IV-free month of 2009! (Okay, fine, I technically ended my last run of IVs on Oct. 1st, which means there was one day or partial overlap, but leaving that silly little fact aside, and assuming I can stay healthy for a mere 3 more days, I'm going to go ahead and score this one as a win.) Granted, it's come with its own sets of ups and downs (and clots), plus a couple of rounds of some good old-fashioned oral antibiotics to help me through, but sometimes that's just life. And frankly I'm about ready to go out trick-or-treating this year dressed up as a big gold star -- a gift from me to my lungs for holding out this long and proving, once again, that they love nothing more than a challenge.

Of course, the addition of gyrotonics to my exercise lineup (religiously twice a week for an hour each session) might also have had something to do with it. I've also begun practicing meditation and deep breathing at least once a week, and that may have helped too in keeping my lungs open and (relatively) healthy. Honestly, those two things are the only part of my routine that's really changed, so I can't discount either as a factor. And interestingly, it's not that I haven't developed the same grossly productive cough that normally drives me towards IVs, because I have. But somehow I seem more able to get the mucus up and out this time around, and as a consequence I breathe better and deeper, even if it's just for those few hours in between airway clearance treatments. Also my appetite and energy level have been more less holding steady despite the cough increase -- another sign that my body might be getting stronger even as my lungs continue to struggle?

I don't know, and to be perfectly frank right now I don't want to overthink the cause. I just want to gloat and enjoy the fact that I am almost 31 WHOLE DAYS without an IV infusion. And in the middle of cold/flu season too.

Seriously, guys, I wasn't kidding . . . can I get a "woot, woot" please?

Anyway, in celebration of this fantastic accomplishment (and because I kind of want to wait to share some of my deeper musings for another post), I've decided to torture you all with some ridiculously random scenes from my apartment on this gorgeous, post-meditation, slightly rainy, beginning of fall, IV-free day. Enjoy.

view of TriBeCa from my 18th-story window

charcoal drawing (based loosely on above view)

the real star of this blog: sampson (aka "sammybear")

I'm off to walk Sam as part of my participation in "Courtney's Challenge" now that there's finally a break in the rain!

Wednesday, October 21, 2009

Waiting to Inhale

Well, it's officially been a whole since I was first listed and I think I've come to a few very important conclusions:

1) Tom Petty is a genius (see lyrics to appropriately titled song, "The Waiting")

2) Daytime TV is definitely not all it's cracked up to be . . . newsflash, Murray: he IS the father. Every. Single. Time.

3) My puppy may or may not be sneaking my prednisone at night. Either way, 21 lbs for a shih-tzu/yorkie mix just doesn't seem normal. Ironically, he seems to use his adorable chubbiness as a frustratingly effective tool to get MORE food. I know this has nothing to do with transplant, but the cycle is vicious, and it needs to be broken. Soon.

and 4) I am not, in fact, the world's most patient patient.

Honestly, I know I haven't been waiting that long, and I feel comfortable saying that I'm actually grateful for the wait thus far, as it's given me time to get stronger, recover from some unexpected setbacks, and maybe get just a little closer to being emotionally prepared for this life-changing event that I know is coming. I feel confident that the right lungs for me are out there, they're just in use by someone else right now who needs to and is supposed to keep them for a while longer, and that's right and good and okay with me. I trust completely at this point, after a lot of hard work and soul-searching, that lungs will come for me at the right time, from the right donor, and that I'll be in the right place to accept them as the wonderful gift that they are.

All of the above is 100% true.

But what is also true is that I'm tired of feeling so sick, something that, despite nearly 28 years of serious lung disease, is honestly a very new sensation for me. I know that I've gone through a lot lately that was only indirectly CF-related (i.e., anyone can get blood infections and clots), but I still feel like this disease has been playing a near-overwhelming role in my life lately (after all, I would never have had the port or the PICC to get the infections or the clot if I didn't have CF). It bothers me to be on O2 most of the time, even though I know that worry is petty and ridiculous. After all, let's face the facts here: no matter how nice your makeup looks, that nasal cannula will really draw attention away from your perfect mascara. I'm dedicated to giving my body the help it needs and being compliant, but it's a new challenge to do those things when they're so VISIBLE to everyone around me. And, of course, it's tough to fight the feeling of being left behind . . . it's such an active, vibrant time in my friends' lives right now (marriages, births, dating, jobs, travel, etc), and try as I might I can't help but feel just a tad left out occasionally. It's not that I CAN'T do those things necessarily, but right now is a time to be focused on my health first and foremost, and that can sometimes be a tough pill to swallow. Pun intended.

So I've been thinking about this whole process of "waiting" a lot lately, in part because slowing down and trusting in outcomes that I can't control does not come naturally to me. A couple of nights ago, though, I was lucky enough to stumble across a beautifully written post by Sara over at Ocean Desert about life lessons learned from yoga practice. Her message -- that sometimes we have to stop pushing and just let things unfold, and that life is meant to be enjoyed to the utmost -- struck such a chord with me, and after reading her words, I couldn't help but apply them back to the notion of "waiting" for transplant.

Simply put, I sometimes feel as though I am waiting to live, or at least waiting to have my life "back." I remember when I was oxygen-free, starting out my new career with the same gusto as all my fellow junior associates, living alone, buying my first dog, etc., and I think "wow, wouldn't it be AWESOME to be able to live that way again?" And I look at my sister, or my friends, or even strangers on the street going about their daily lives, and I think "man, what I wouldn't give to be able to take a spur-of-the-moment trip or roll out of bed five minutes before I need to leave the house one morning." I see people stressed out about their jobs and am actually a tiny bit JEALOUS because I remember how much fun it could be to sit at the bar with a co-worker, throw your hands in the air, and just let loose about how much pressure you were under to get that latest assignment done before the totally unreasonable deadline. In other words, I have a slightly over-the-top case of the green-eyed monster -- and my monster apparently has some serious amnesia when it comes to remembering how much it sucks to be overworked and stressed out.

I think what Sara's post made me realize is that I need to change my focus here a little bit if I plan to survive the next 1 day/1 week/1 month/1 year of waiting. Because I honestly cannot spend that much time waiting to "get my life back" without simultaneously losing my mind. Instead, I need to remember what I'm really waiting for is LUNGS -- beautiful, perfect lungs that will hopefully enhance and extend my life, but not start it. Cliche as it sounds, my life is going on right now, all around me, and while it doesn't exactly look like what I'm used to, that doesn't make it any less worth enjoying to the fullest extent possible. And it definitely doesn't make it something I should be any less that totally grateful for, as any CFer or person with chronic illness will tell you.

For me, personally, what I have right now, in this moment, is time. Time I definitely never had in law school or as a junior associate. Time to explore new ideas and parts of the city (hey, if I can't travel to distant lands then I can at least go spend some time in the East Village, right?). Time to read whatever books and novels I want, not just the ones assigned by my professors or necessary to find the latest case law. Time to spend an hour practicing gyrotonics and still time left over to talk with the instructor about her philosophy of mind/body connection. Time to dive in to some new theories of alternative medicine and ways of viewing the world. Time to sit with my mother in a cozy coffee shop and enjoy conversation, or to nap in the afternoons and give my body some much-needed rest.

Yep, even time to write lengthy blogs detailing my half-formed understandings about life and this never-ending process we call "waiting."

I'm not saying that this is the easiest time in my life, and I'm definitely not saying that I'm always able to stay positive in the face of what is, quite frankly, a frustrating situation more often than not. As with my puppy's ever-expanding waistline, I sometimes feel like I'm caught in a cycle that I would really just prefer to skip over, not deal with, and get on to whatever comes next. That impatience is itself just a part of my personality, for better or for worse, and I don't think it's going anywhere anytime soon. But in the meantime I've decided to start focusing a little less on the life I'm waiting to live, and a little more on the life I'm already living.

And I can't wait.

Friday, October 16, 2009

Transplants and ERs and Clots . . . oh, my!

Ever get the feeling you're secretly trapped in some sort of weird hidden-camera reality version of one of those bad medical dramas? You know the kind: patient calls doctor to complain about pain in her right arm, but based on her description of the symptoms doctor tells patient it's probably no big deal, after which doctor leaves town for gigantic conference along with all other doctors treating patient's condition. Patient attends routine transplant appt and happens to mention arm symptoms to overly-cautious transplant doctor, who immediately orders an after-hours ultrasound. Patient ends up in large, overcrowded ER for 6 hours awaiting 10 minute treatment for apparent clot, the treatment of which is handled not by transplant doctor but by absent specialty doctor (who happens to be in Minnesota). Patient is discharged with twice a day shots, comes home, and writes obscure blog comparing her story to prime-time television.

Yeah, that's the one.

Okay, so as you might have guessed, I have a clot. It formed around my PICC line sometime over the past few days/weeks/whatever, but was only caught during my transplant appt this past Thursday. To be fair, I didn't have many of the "typical" symptoms of a clot, which I guess is probably b/c the clot isn't actually in my arm so much as at the top my breastbone/front of my shoulder. Also it's non-occlusive, so there's some blood flow anyway, just restricted, so there wasn't a lot of swelling or anything like that. Personally I'm just glad it was caught when it was, and that so far it hasn't gone anywhere other than it's comfy little home in my vein (knock on wood). So far the end result of all this "real world" drama has been: 1) I am now officially BFF with my friendly local vascular surgeon (also the wonderman who removed my port during the recent "Great Port Debacle"), 2) I am now on shots of Lovenox and am getting excellent practice for if and when I ever develop CFRD, and 3) my surgeon wants to wait as long as possible before putting another catheter in, so the challenge is on to avoid IVs for the next 3-4 weeks. So far I'm IV free since Oct. 1, and hopefully I can make it for another month or so before the next round. I'm on cipro, doxycycline, and TOBI right now -- they seem to be holding me pretty well.

Anyway, fingers definitely crossed.

In other news, the transplant appt went well. I did walk a little slower on my 6MW test, as predicted, but honestly it was pretty close to my numbers from back in May. My PFTs were at 35% FEV1, which I was pleased with, and my weight is pretty stable. I'm officially on O2 24/7 (although my doctor still said it was "up to me") and there's not a whole lot of avoiding the fact that I really need to wear it as much as possible, so I've been good about that lately. Of course my portable concentrator picked yesterday to completely crap out for no good reason, forcing me to fill some of my small tanks for my appts today with the vascular surgeon and dentist. Unfortunately when I turned it on it gave me about 6 breaths on pulse flow and with each breath I could actually see the gauge going down, so there was obviously a problem there. I don't think 6 breaths is really gonna cut it for most of my out-of-the-house adventures . . . guess I need to get that figured out tonight, huh?

My tx doctor gave me an appt for Jan 16th and said he really hoped I get called before then. I think we're all in agreement that this needs to happen, especially since my O2 levels seem to be dropping and my HR seems to be rising. Of course I'm still focusing on getting as strong as possible before I get THE Call, but I'll admit it's been harder than usual with all this drama going on.

As for me, I'm done starring in my own personal melodrama, so consider this medical circus officially canceled until further notice. In the meantime I'm going to continue to work out (within the parameters of proper clot-protocol), eat like a madwoman, and work to help balance my energy through gyrotonics, meditation, and, of course, deep breathing.

That's a wrap.

Wednesday, October 14, 2009

Alternative Medicine Blogger Challenge

The following is a recent email exchange between one of the readers of this blog and me about my last post. It gets a little long, but I wanted to post this because I think it offers a great perspective on the question of "alternative" medicine and the treatment of CF, particularly because Jason is a CF parent. Enjoy (and ps: read the first-ever aMoLaB "blogger challenge" at the end!):

I just found your blog recently. I have to say that your post excites me. To explain, I'll try to be brief, but I am never brief when explaining, and certainly not on a topic like this.

I grew up with an entrepreneurial, businessman, workaholic father and a stay at home mother. They were republicans. I am conservative politically, undoubtedly influenced by them. Conservative influence #1.

I have a master's degree in psychology, from a school with a behavioral perspective. That's the branch of psychology that is the most scientific. It's the if-you-can't-prove-it-with-empirical-research-then-it-ain't-so kind of psychology. None of that Freudian crap. My minor in college was biology. Conservative influence #2

At some point, after grad school, I gave my spiritual interests serious consideration and ultimately became a Christian. Conservative influence #3.

I am married to a Christian woman from a Christian family, whose mother works at the church where we attend, running the children's program where we teach Sunday school. Conservative influence #4.

We have a child with CF, our third of four kids. He's four. For about six months, we didn't know anything was "wrong" with him. For a few months, we hoped it was nothing. Then, for six months, we were on a serious quest with all kinds of specialists before we got a diagnosis.
Then, they figured out that his severe physical delays were the result of malnutrition resulting from the malabsorption component of CF. So, now we RELY on our traditional western medical doctors. My wife’s paternal grandfather was a physician. Western medicine is what
we know. Mostly, it’s what we trust, though admittedly, I am always skeptical enough to ask lots of questions and research on my own, even in the face of know-it-all doctors. But, as you know, our son would not live without the western medicine that keeps him alive and well.
So, we are sold on it. Conservative influence #5.

However… my mother was for many years an advocate of natural methods of preventative health care. She was forever doling out “wisdom” on how to live better and healthier through positive mental attitude, diet, lifestyle, etc. Some of her ideas were out there. I thought
she was a loon a lot of the time. Nevertheless, she was an influence, and in some ways a strong one even in this area, though not so conservative on this. Realistically, I never had much reason to give her ways of handling health too much serious thought, until…

Just over two years ago, I was about to turn 39. My dad was in the midst of numerous serious health issues. It concerned me, as I reflected on my age and what my genes might be coded for, e.g., diabetes among other things. I started to worry. And, BAM… I got sick… one thing after the next. It was crazy, the amount of stuff I dealt with in such a short time. The worst of it was chronic pain, in all the wrong places. Then, my IBS of 20+ years (which I had managed
by ignoring it and never seeing a doctor, or even talking about it) got MUCH WORSE! I could barely function. I was stressed, and very sick and at times convinced the end was near. Seriously.

I went to my doctor a dozen times in the course of a year. I saw a urologist a few times for various symptoms and various testing was done. I saw a gastroenterologist and had all those tests run. I was sure that one of the many tests would show I had cancer or some such
terminal illness. But, that never happened. My doctors gave me no diagnosis. They gave me pills, none of which helped, and many of which caused me unpleasant side effects.

At some point, a light came on. Actually, it was in prayer. I prayed all the time during this stuff, sometimes hours at a time. And, eventually, I realized that my mom, in her cuckoo alternative
healthcare ways, was never sick. My dad, who thought my mom’s ways were BS (they were divorced many years by then) and saw every kind of doctor and took every kind of pill, was always “sick” in some way or another. I believe the Lord showed stubborn ol’ me that there was
something to this alternative health care stuff.

I tried a few simple things instead of my pills and doctors. Changing chairs, trying a massager, going to a chiropractor, simple stuff like that. All of it helped, a little. Then, I decided to try acupuncture for pain. I was amazed that it helped. Then, I found a book on chronic pain from a psychological perspective and it helped almost overnight, truly. (Funny how once you realize that there might be something else going on other than a deathly illness that symptoms can
improve, at least in my case with no diagnosis.) I eventually found another acupuncturist to deal with my digestive issues. And, I found a book on healing severe digestive disorders naturally, which was a Godsend indeed. I have taken Chinese herbs and various supplements
from the health food store. All of that has helped way more than my doctors or their prescriptions.

Now, I am a convert. Alternative health care works! For me, it’s better than the traditional western stuff!?

But, what about my child with CF? I have been wanting to enhance his care via Traditional Chinese Medicine or some other method. But, he’s four. He can’t really tell me whether it’s helping in any meaningful way. And, I am not willing to throw out his MDs’ advice or direction – THEY ARE KEEPING HIM ALIVE AND RELATIVELY HEALTHY! But, the more thought I give to this, the more I know I have to do something to add in this enhancement. Lately, I have been wondering what to do, and when and how, and how to afford it on top of the various medical expenses we already have.

This summer, my CF child had his first hospitalization, for surgery to remove his tonsils, adenoids and clear his sinuses, with a week of IV antibiotics due to CF crap. Around that time, my forever-healthy mother was diagnosed out of the blue with pancreatic cancer. She actually went into the hospital for her second time, and into the ICU the day my son had surgery. Within a few days, my mom died, one month after her diagnosis was given. It was a shock. And, it startled me and made me question alternative health care methods a bit. But, I
have to recognize my own health improvements. So, I am now back to thinking more seriously about how to do this.

So, in reading your post, I am excited to have a resource to learn from, to gain an adult perspective from an intelligent CFer with so much to gain, and so much to lose. I hope that you post often on your experiences. Also, I hope that you will keep me posted, even
personally, through direct email. I am posting here nonetheless, because, as you did, I suspect there are others in the same shoes, who might be interested in exploring how to enhance traditional western medicine with alternative health care methods that might bring a new
level of health potential, despite the severity of CF and its foreboding genetic code of doom.

Peace be with you!

My response (slightly abridged):

Hey Jason,

Thanks so much for your letter and for sharing your story. It sounds like you're an extremely devoted CF dad who is working proactively to do the very best for his son -- you have no idea what a difference this can make in the long run! I also love that you called me an "intelligent CFer." I'll have to try and live up to the high expectations!

It's great to hear about your own health achievements with some more "alternative" forms of therapy/medicine/healing. I think you're absolutely right that sometimes these can even be better than "traditional" medicine, but obviously in the case of CF the two have to be used together. What really convinced me to at least try was a hospital worker (a nurse) who told me that in her experience, people who really trust and believe that they're going to get better tend to heal faster than those who are too worried or scared about their conditions to see past the pain. And obviously that's a generalization -- I'm not at all trying to say that simply being positive can get you out of the ICU and off the morphine, so to speak -- but I think there's some truth to it. After all, we all know and accept that our bodies receive signals from our brain, so it would make sense that the more positive those signals, the more positive the response. I also know a fellow CFer with some unrelated chronic pain issues who has found a lot of success treating with massages and acupuncture, though she also uses some more "traditional" routes as well. At any rate, I'm more than happy to be your "guinea pig" on this in some ways and give you an adult CFer's perspective on some alternative medicine techniques (there are other blogs out there that can do this too - Cystic Gal definitely uses some healing methods, and Sara from "Ocean Desert" recently wrote about how a positive thought process and some visualization helped her during a hospital stay). Just please remember that every CFer is different -- many of us respond differently to various "traditional" medicines, so I'm sure the same is true with alternative methods.

I would like to say for the record that even though your son is still little, it sounds as though you're giving him a great head start. I personally think that the three most important things for a CF child (besides, as always, loving parents) are parents willing to be proactive in treatment and seek out information, a strong grounding in personal responsibility for health maintenance, and as much normalcy as possible. Obviously there are never any guarantees in outcomes, but serious kudos go to you and your wife for such an awesome jump out of the starting gate.

I'm so sorry to hear of your son's admission, but I hope he's doing much better now that he's had his "tune up." Prayers that his lungs stay healthy, and know that there are SO many exciting and hopeful new therapies out there for young CFers that give me personally SO MUCH hope for the future.

Take care,

**Okay, so I'm opening this up for a blogger challenge. If you have your own blog, answer one or some or all of these questions there, and then post here to let everyone know to check it out. Or else just answer the questions in the comment field. But either way, I'd love to get a good discussion going on this!

1) What are your thoughts on "alternative" forms of medicine?

2) Have you personally ever tried any of techniques to manage your CF (or your child's) other than the typically prescribed routine? If so, what did you think of them? Are you still doing them?

3) What does "healing" mean to you in the context of cystic fibrosis.

4) Anything else you want to say on this topic.

Enjoy the challenge!

Saturday, October 10, 2009

Diving In

Okay, let me start off this post by making one thing absolutely, perfectly clear: I believe in what is commonly termed "Western medicine." I have a huge amount of faith and trust in my doctors and I follow the routines they prescribe for me (not always without question, because I also believe strongly in understanding and advocating for your own health, but generally speaking if they say so, I do it). I believe some things in life are beyond our immediate control, and this includes our genes and whatever mutations might come with it. I believe that sometimes you can do everything right and still not always achieve a desired outcome. In short, I believe that diseases like cystic fibrosis are unpredictable and at times uncontrollable, and I am a traditionalist in the sense that I treat my CF with modern medicine, therapies, antibiotics and hospital stays.

I have also worked hard not to "blame" myself for the progression of my disease -- although I acknowledge that I haven't always made 100% perfect choices when it comes to CF management, I also know that I made the choices I thought to be best at the time, and that new opportunities and growth came from those choices that helped shape me as a person, so I can't be "angry" at myself for my choice to, for example, enter a tough and ridiculously stressful profession that at times left me choosing between work obligations, treatment, and sleep. Over the past few years I have realized one thing that I cling to: choices are made, and they have an effect on the future, but they can't be unmade later just because of an undesirable outcome. Instead you have to keep on choosing how to go forward, and for me it took a long time to choose to forgive myself, see the validity in the decisions I had made and how they had helped my life (even if they weren't perfect), and then move on with what I had to face next without a lot of defensiveness, or guilt, or anger. I'm still not perfect at this -- I have a type A personality so I always look for identifiable causes and "solutions" to problems, I'm not great at working within a spectrum of non-black and white answers -- but I'm learning. And I love that.

So where does all this self-reflection lead? Well, in a kind of uncharacteristic move for me, I'm starting to do what is called "energy work" (actually, it's called a lot of things by a lot of different people, from "healing" to "theraputic conditioning"). Call it what you will, it basically means that I'm lucky enough to have some amazing people in my life who are helping to guide me towards a new way of thinking about disease and health. I haven't delved too deeply into this yet, and I'm just starting to even become open to exploring this whole new world, but my understanding is that this is about mind/body alignment, and understanding how thoughts and memories and things we hold inside us affect our physical selves and our overall well being.

Um, and just for the record (before you all abandon my blog in a fit of justified anger and frustration): I do not believe that any of this will CURE my CF. Not for a second, not an instant, and that's not even my goal. In fact, one of my new guides in this process (introduced to me by a fabulous woman whose positive energy is absolutely overwhelming) was herself a nurse practitioner for several years. She understands disease pathology, and she knows that CF isn't going away, and that in fact much of the damage to my lungs may well be flat-out irreversible. Her emphasis is on HEALING (as in, making one healthier), not on CURING (as in, altering one's genes -- at least in my case). The goal is increased health and positive change in mental energy, not "sayonara, CF, see you later" (awesome as that would be -- hint, hint CFF). For me personally, this most likely will mean an emphasis on strengthening on the body and preparing myself mentally for transplant, as well as developing techniques to hopefully be in the best shape possible for recovery. In other words, I think I need help preparing my "sick" body to be "healthy."

No, I won't be giving up my CPT and O2. If she tries to take away my xopenex and TOBI she just might find herself attacked by a very overprotective Shorkie (trust me, what he lacks in size he makes up for in other departments). And I just don't think either of us would be very happy with the results if she asked me to give up my enzymes. (Sidenote: eww. Enough said.) In fact, one of the principle tenants of her style is that the person must make CHOICES and then follow through with them. In my case, if I choose to make my body (and hopefully lungs) stronger, it then becomes my responsibility not only to focus on that goal and believe that I can do it, but also to take steps to make it possible. You can't, according to this philosophy, simply choose to have perfect PFTs and then sit around to wait for it to happen. Being positive and focusing on the goal are only a part of the formula, to make it all add up there also has to be action a willingness to dive headfirst into the fray to get yourself there. (For some reason, this really made me think of Ronnie.)

Okay so I've written this long, rambling post about all this stuff I plan to do. Scratch that, all the stuff I CHOOSE to do. Because I want to start this out with a public declaration, however silly and possibly even narcissistic it might be, that I choose to be open to a new way of approaching my health. I choose to get stronger and to reclaim my body for ME, not the numbers. I choose to be happy and I choose to trust that transplant will happen for me at the right time, with the perfect lungs. I choose to believe that my body will accept these lungs as the gift that they are. Most of all, I choose to believe that God has this worked out for me, that with faith and energy and work on my part everything will be as it is supposed to be. And I choose not to blame or punish myself for the choices that might not work out perfectly, because frankly I just don't need that in my life.

I guess I'm writing this in the hopes that I'll find some sunken treasure somewhere deep down in a sea of self-healing of which I've (truth be told) always been a bit wary, if not flat out distrustful. Moreover, I'm writing this because I've decided to dive in, with as open a mind as possible, and I figured this would be a great place to make the first splash. I don't expect much to change directly here on the blog, but I do plan to occasionally update you all on my project, so I figured you needed some background.

And anyone who cares to join me on my little swim, feel free to make some choices of your own -- write them down (either here, on your own blog, or somewhere you feel safe doing so) and start believing you can make them happen, then take steps toward making them possible. I can't promise results (I'm an experimenter here myself), but I promise good company along the way.

Monday, October 5, 2009

Light(s) at the End of the Tunnel

Some of you may remember my rant about going to the dentist and learning that the dentist needed medical approval from the tx team in order to examine me/clean my teeth. The transplant team then turned around and demanded medical approval from the CF team b/c they're not my "primary doctors." So then my CF team finally gave clearance, which allowed the dentist to finally, finally, finally give clearance to the transplant team. Keeping in mind that in between getting all the medical clearance and actually returning to the dentist for the examination I ended up in the hospital three times in just over two weeks and you can probably begin to understand why I'm so excited right now. Because . . . (cue drumroll) . . .

As of today, I have officially completed every one of my dentist's pre-transplant "recommendations." Seriously, this is a HUGE milestone.

See, my dentist thought that my teeth were in fairly good shape overall. He saw two fillings that he thought were loose and wanted to fix them preferably pre-tx b/c loose fillings can 1) fall out, and 2) become a good place for new bacteria to grow in the space between the filling and the tooth. And since they don't recommend having any dental work done until 6 months after tx, we decided now was the time to take care of those things (although he said if got THE Call I could still accept, as he thought the fillings would likely survive 6 months anyway). He also wanted to do a root canal on one other tooth, which I was kind of nervous about having never done one of those suckers before. So I managed to get the fillings re-filled (capped, actually -- we went with the "better safe than sorry" option since they were two small fillings in the same tooth), and then I was left with the root canal. Definitely not something to look forward to.

Well, for anyone considering a root canal in the near future, I have a slight suggestion: have risky and complicated vascular surgery to remove an infected port without general anesthesia three days before your scheduled dental appointment. This fool-proof method of making a root canal seem easy has a number of perks, including: 1) your left arm will be sore because it will have three large incisions healing on it (no pain meds were offered, and I didn't request any, but it honestly wasn't too bad) -- the pain will distract you from the root canal unpleasantness, 2) your right arm will be slightly sore because of the PICC line and residual phlebitis from the blown peripheral IVs -- again, more distraction, 3) you will, I promise, have sudden flashbacks to your time in the OR prep area every time you start to get nervous over the root canal, at which point your brain will basically sigh with relief because the comparative risks of a root canal are so totally not worth stressing out about. Believe me, it works, and thanks to the miracles of novacaine and advancements in dentistry, I can honestly say the root canal was no big deal at all. I think I was in the chair all of maybe 45 minutes, although that may have been because my dentist has a periodontist on staff who does nothing but root canals, so he's super good and efficient. Lucky me.

So yeah, I got the root canal a little over a week ago, and today they finished it by capping the tooth to once again guard against any future infection. And now I'm totally and completely done with the dentist (aside from, of course, regular cleanings and check-ups). In other words, check another thing off the pre-tx to-do list, please!

Anyway, now that that's all over, I also have a CF appt tomorrow, and then on Thursday I have a surgical consult to check out my wounds from port-fest 2009 and, um, to check out my other arm for the placement of -- you guessed it -- Piper's Arm Port II. I got word from my tx team that they are willing to leave arm ports in for CFers because you often end up needing IVs within the first year after tx anyway, plus everyone is on IV drugs for at least a little while immediately post surgery. It is clear that I'll need to get it taken out once it seems like my need for IVs is less (probably within or right after the first year), but since there's no guarantee of how soon I'll be transplanted and I don't want a PICC in my arm all year, not to mention the fact that I don't want to have to have a PICC placed every time I need IVs after tx as well, I've decided to go ahead and let my favorite vascular surgeon put another port in place. And yeah, because of my history it has to be done through surgery (again, no general anesthesia obviously) instead of IR. But the same amazing vascular surgeon who got me through the amazing port debacle has told me he'll be glad to handle my next placement. So I know I'm in great hands, and I'm actually pretty stoked to get another arm port, truth be told.

I also got my LTD from work approved, so I am officially no longer part of my Firm. Bittersweet, to be sure, but the right decision for now and I know I'm lucky in this economy to have this sort of option. I'll be applying for SSDI as well in the upcoming weeks in order to ensure I can get Medicare by the time my COBRA benefits run out. Definitely NOT the time to be caught without healthcare.

So that's the news. Next tx appt is on the 14th and I have to repeat PFTs and the 6 min walk. I'm almost positive my distance on the walk test will be lower than it was in May (I went 2200 feet at that time, which is apparently pretty good for someone on the tx list). The good news is that a slower walk would bump up my score, but I'll be bummed if it's too low anyway. And I know I'll have to wear O2 for it this time as well, so that's kind of a nasty milestone. This whole "24/7 O2 because my sats drop below 90 basically anytime I move more than 5 feet" has been kind of a rough pill to swallow. Since I'll be doing PFTs tomorrow at CF clinic I should have a pretty good sense ahead of time of what my score will be on that front. Hopefully I won't have dropped from my 33% a couple of weeks ago -- here's hoping I can even pull it up a notch or two! Again, it's kind of a double-edged sword with the LAS (lung allocation score, for the non-tx people), but I'd still rather be up than down.

The best part about all of this is that I've been feeling amazing lately. My aunt and uncle were in town this weekend from Texas and we took them all over, plus I've been enjoying dinners and lunches with friends, walks outside, and generally trying to make the most of the mild fall weather. I seriously love this time of year, so I'm so so grateful to be able to enjoy it. Just thinking back to where I was at this time last month -- honestly wondering if I would get out of the hospital at all pre-tx -- is enough to remind me to be grateful. Well, most of the time anyway.

Here is the picture of the week: gorgeous colored glass lights hanging from one of the stalls of the Grand Bazaar in Istanbul. I was honestly transfixed by all the color and light there and the picture doesn't do it justice -- it was like staring through the stained glass windows at the Saint Chapelle in Paris. I brought home a small one for my bedroom, but it's just not the same!

Friday, October 2, 2009

Hung Up

Okay, so this might not come as a surprise to many people given that it is, in fact, 2009, but tonight I thought I'd share an interesting little fact about me:

I have a cell phone.

Yep, that's right. Much like 90% of the general population, I do actually have a cell phone, and, much like 90% of the population, I consider my phone to be a useful tool to help me stay connected to friends and family (and, okay, maybe occasionally some cute guys met in bars, but do we really need to get into that right now? I didn't think so.).

Or, you know, I DID think of my phone that way. Once upon a time, that is, before it magically leapt from its position as a simple, convenient, little electronic device to suddenly become a majestic machine of semi-deity-like power.

In other words, before I got listed for transplant.

Let me explain. See, I'm told that most transplant centers used to provide patients with a beeper to be used solely for THE Call, but those days are apparently long gone. Or at least they are up here in New York, which means that the only thing standing between me and THE Call is, you guessed it: my cell phone. (Actually, to be fair, the transplant team actually has on file not just my number, but also my mother's cell phone number, my apt landline number, and my sister's cell phone number -- any one of which could be used for THE Call should that an organ actually become available. But I'm told they'll try my line first, and I hope to answer.)

So maybe I'm crazy, but this knowledge -- that my phone could ring at any second, and that the person on the other end could have such life-changing news -- has completely changed my relationship with the little bugger. Whereas before I turned my phone off during movies and plays (thinking that even the vibrating sound would be annoying to others) I now simply silence the phone and hold it gently in my lap throughout the show (ignoring, of course, the fact that a ring would involve both vibration and a lit-up screen, and would be 100% guaranteed to annoy basically anyone within about 20 feet). Honestly, two nights ago I sat through a Broadway production of Othello with the d*mn phone resting on my leg the entire time, all the while worried about exactly how I would get out of the theater and home if THE Call did in fact come. (Actually, since the production was pretty lousy, I was also concerned about what it would be like to have to go straight from bad Shakespeare to transplant. I have to say it wasn't a very pleasant thought.) Even worse, my transplant team made it clear that THE Call could come from any number, especially since they often come at night and the coordinators might be on their cell phones. Great. This means that instead of ignoring all numbers not pre-programed into my caller ID (see earlier comment about guys in bars -- I find I sometimes just don't really want to actually talk to them later), I now absolutely HAVE to answer. Has this made me a better a human being? Possibly. Unfortunately, it has also made me an easy target for both telemarketers and chatty strangers.

Ironically, the only calls I CAN ignore are calls I know are from friends, and I honestly hate to do that. So I'm basically at the mercy of this little machine, and I've become surprisingly good at reacting to its whims and needs. Yesterday, for example, I literally took a flying leap off the back of the couch to reach the phone, which was cleverly positioned on the counter behind me, before it stopped ringing. Several days before that I stubbed my toe racing out of my bedroom -- eyes still bleary from my afternoon nap -- to find the thing buried somewhere in the depths of my purse (I missed that one, but it was just an insurance company rep anyway). When I go to gyrotonics, which is supposed to have a yoga-like calm in the studio, I selfishly leave my phone right by my machine, ringer turned on and volume up. Sure, my trainer knows why I do it (and she happens to own the studio, so it works out), but that doesn't change the fundamental fact that I'm breaking the house rules.

I also never really realized how LOUD New York City is until now -- I find myself removing my phone from my bag at random times or in restaurants just to ensure I don't miss THE Call because some trendy new SoHo eatery just has to play its hipster music at ear-splitting levels. I can honestly say that I rarely noticed things like that before I developed my phone obsession -- as a New Yorker, I actually prided myself at being able to eat in the loudest place around without ever actually acknowledging the noise level. My out-of-town guests would scream themselves hoarse trying to make themselves heard from across the 2-foot table and I would simply smile, safe in my belief that their red faces and flapping jaws were simply a sign of their awe over my magnificent City. Now suddenly I find myself dragging family and friends out of the newest hotspot, shaking my fist at the hostess and muttering odd things under my breath about "hearing myself think" and "just no way to run a business."

Okay, fine, not really, but you get the idea.

I guess it just seems like lately I've been adjusting to a whole lot of what I consider "new normal." Not working, lower O2 levels, more doctor's appointments, and even the joys of a PICC again after so many years -- those things are all somehow becoming "normal" for me now. But the weirdest part for me is the small details: having a bag packed for transplant and sitting in my closet, knowing that everytime I eat sushi (which I happen to love, by the way) it could be the last time ever, and, yes, even the way my heart pounds each time I hear that silly ringtone. It's all part of adjusting and adapting to this idea that my life has changed, and that it's actually going to continue to change -- my "normal" in 6 months or a year will (hopefully) be different than my "normal" now.

In the meantime, though, it's definitely time for me to go to bed and get some sleep -- with my phone on the nightstand, of course.