Tuesday, January 17, 2012

Little "Miss" Compromise

A lot has happened since I last updated this blog, so please bear with me if this post seems a bit all over the map. It's a common problem in my world, though I can honestly say that I wouldn't have it any other way.

The most exciting news is that a dear friend from my hospital's transplant program (and a fellow CFer) got his brand new lungs just about 48 hours after I wrote the last post about our little "CF/transplant group." For all the dry runs and the drama and the frustration of my time on the list, I truly can't imagine what this guy went through in waiting for over 2 years for lungs, all while attempting to keep up with the first one and then two handsome sons he shares with his gorgeous and incredibly loving wife. They are truly inspiring people and wonderful parents, and I am so excited for them to move forward together as a perfect, happy, and HEALTHY family. To the donor and the family who made this all possible, wherever you are today, thank you from the bottom of our hearts from all of us who know and adore these special people!

As for me, I get to take care of several routine and not-so-routine health matters before the month is out, including transplant clinic, some less-than-awesome digestive "fun", the endocrinologist to follow up on my pathetic Vit. D levels, a bravo test for my reflux, and the dermatologist. For sanity's sake, we'll keep the discussion of most of those to a minimum and just focus on the circus du jour, otherwise known as a complete dermatology check up.

For those of you who have never had the pleasure of this experience, you're missing out. The process basically involves stripping down and getting a complete body once over by someone trained to know the difference between a freckle and a serious problem. In my case, since I'm covered in freckles pretty much from head to toe, this typically feels like a some sort of military hazing activity. Luckily the visit today was less painful (literally) thanks to the presence of hand held mirrors. Points to the doc for thinking up that one.

What was fun, though, was the final "consultation" part of the program, during which I was informed by the staff that people on immunosuppressive drugs are 65 to 250% more likely to develop skin cancer than your average John or Jane Doe. Where exactly I fall within that large range was never actually explained, but since I have pretty fair Irish skin I'm guessing it's in the upper numbers. Skin cancer, I was told, is dangerous and possibly deadly. The take home message was definitely that the sun is a monster of which I should be afraid, be very, very afraid.

Now, I am cautious about the sun by pretty much any standard. I've known about the increased skin cancer rates since before I had my transplant, and I've also known that certain of my other drugs (like antibiotics, for example), make me more sensitive than most people to the sun and more susceptible to sunburn. Also, as someone suffering from chronic and incurable whiteness, I learned at a very young age that I go straight from pale to burned. There is no tan in my world, there is just increased freckling that sometimes blends together in some form of brownness -- and that only seconds before I turn roughly the shade of a lobster in a boiling pot. I was about 5 years old when I discovered SPF 45, and I can honestly say that I've never looked back.

But that, according to the helpful folks at the dermatology department, isn't quite good enough. In fact, their list of suggested precautions went something like this:

-NEVER EVER EVER leave the house (regardless of weather) without wearing SPF 30 or higher on all exposed skin patches. EVER.
-In fact, since sun and UV rays can come through windows, always wear sunscreen indoors as well.
-Not that it matters anyway, though, because no part of your skin should ever be exposed to the sun. Wear hats with sun protection and SPF clothing at all times.
-SPF 15 is useless. We laugh in the face of SPF 15. It is basically grease. It probably attracts the sun. The makers of SPF 15 are probably paid by the cancer lobby.
-The safest place to live is in a dark hole underground. Second place goes to houses and apartments with no windows, provided you never leave. Anything less than that and you're screwed.

Basically the advice could be summed up as: go outside as little as possible and when you do wear long sleeves with sun protection built in and SPF 30-45 on any exposed parts. And stay away from windows."

Here's the thing though: I'm not afraid. I know the sun can hurt me and I know I'm not invincible (nothing like CF and a lung transplant to teach you that lesson!) and I know I need to be careful. I know all that. But I also know that a lifetime of defying expectations and refusing to listen to life expectancies or warnings not to ride my horse or play too hard or travel too much or whatever have NEVER ONCE persuaded me that the right way to live is to value caution over life. Not then, not now, and hopefully not ever.

So here's my compromise:
-I do wear sunscreen, and I do wear SPF 30 or higher.
-I do NOT wear clothes with SPF, not because I'm stupid, but because fashion is actually important to me. My sister designs gorgeous clothes and I want to wear them.
-I do NOT always cover up every part of me. I do, however, take basic precautions like wearing sun hats.
-I do try to avoid being outside in the sun for extended periods of time, if I can do so without missing out on an activity that is important to me.
-I do not currently wear sunscreen in the winter, but I will going forward. That seems reasonable. Also, I will remember to wear it even if I'm not planning on being outside, particularly in summer.

Okay, so it's not perfect, but I think it strikes a nice balance between being careful and allowing me to be myself, which includes the part of me who grew up in the mountains and loves the outdoors. And who knows? It might even help a little with my low vitamin D levels, which are of course related to sun intake.

The reason I chose to write about this though is not to get approval of my personal compromise plan. In fact, quite the opposite -- I'm quite positive that by posting this I'm leaving myself vulnerable to actual criticism from some of my doctors and the medical staff at my hospital, at least a few of whom know about this blog and occasionally read it. Trust me when I say I'm not expecting any kudos here, nor do I expect everyone will agree with me. Instead, I chose to write this because I think it's important that we, as patients, know and understand our own power to take well-meaning medical advice, think about it logically, and make our own decisions about how to integrate it (or not) into our own lives. I would actually go so far as to say that I think this is the number one job we have as patients: not to follow instructions blindly, but to have an active sense of our own health needs and emotional priorities and to spend at least some time deciding for ourselves how best to balance the two. Anything less is, to borrow from earlier in this post, missing out.

Look, I know my lungs are a gift, and the last thing I want to do is jeopardize that gift by being stupid in the sun. I have friends who didn't make it to transplant, and others who died after their bodies rejected their lungs. To do anything less than the best I could by this new set is in some ways a slap in the face to all those who die each year without the chance at new life, or to my donor who gave me my life back. I know this, and believe me: it is not a responsibility that I take lightly.

At the same time, though, I know my lungs are my chance to live my life in ways I haven't been able to for a long time. For me this means outdoor activities. It means not allowing my health to dictate everything from my clothing choices to the amount of time I spend at the window. It means never taking a single breath for granted and knowing that sometimes I will have to suck it up and do things I don't want to do for the sake of my body, but not that I need to stop living. To put it another way, wearing SPF clothing might not seem like much of a compromise to make. Nor, for that matter, is giving up eating raw food or alcohol or going outside without a mask or riding the subway or swimming in indoor pools or taking all the drugs or not allowing my dog to sleep with me or not taking Communion at church or not shaking hands or avoiding crowds or taking the blood thinner shots that give me nasty bruises or never touching a public computer or not eating from a communal chip bowl at parties or never sharing food or...well, you get the idea. Every single one of these things, taken individually, is actually a reasonable suggestion. Put them all together, though, and it's easy to see how these rules can start to take over your life. And since a lot of them CAN'T be compromised AT ALL (taking all the drugs, for example) then it stands to reason that where one might negotiate leeway is in some of the others (I shake hands with strangers all the time, and then I use hand sanitizer). I personally don't think this is a stupid risk on my part, but I guess that's open to interpretation.

So now I want to hear from a couple of you, if possible. Email me or comment below or whatever, but share a little about how you deal with the "life"/health dichotomy. When, if ever, do you make compromises? Why or why not? And, hugely, what do you do to ensure that you don't "miss out" on any of the things that are important priorities for YOU?

Love, light, and best wishes for a happy and healthy 2012, beautiful people.


  1. I'm married to a doctor. And we talk about this every day.

    His biggest problem with his patients is not that they don't listen to him. It's that they don't understand what he's telling them. They will blindly follow the most random of instructions, sometimes ones that matter very little in the grand scheme of things, and then disregard the things that are the most important. But none of them seem to be able to tell the difference, no matter how much he tries to educate them. Our relationships with our physicians have become very strange indeed.

    So, I supposed I'm saying you're absolutely right, and I know Jordan would say the same. Everything is a balance in this human body of ours--even in the taking care of it. Our biggest defense of the "big bads" is knowing what we're up against. And then deciding how to live our lives around them.

    But, you've reminded me that I'm out of my SPF facial moisturizer that I've been too lazy to re-buy. Doing that now. Baby steps.

  2. I'm not dealing with transplant (yet, if ever), but I think we all make the kinds of medical compromises of which you speak. When it comes to breathing treatments, for example, there are some I simply can't NOT do (albuterol), some I strive to never not do (antibiotics), and some that I am okay with skipping if I have a good reason, like being exhausted and needing to get to sleep as early as possible (Pulmozyme). I don't think this makes me non-compliant, though some would argue that. Rather, I think it makes me human. I also don't beat myself up if I forget to do something (Advair inhaler is one I'm notorious for forgetting). I try to figure out solutions - ways to remember or circumstances to avoid (such as waking up late, running around frazzled and rushing to get out the door) - and then I accept that I made a mistake and I'm doing what I can to help me not make it again. As far as not missing out on things that are priorities for me, well, I think there comes a point in every "sick" person's life when they must reassess and what constitues a priority. Right now, I'm still trying to figure that out because as I've gotten sicker, I've been physically unable to do a lot of the things I once considered priorities I'd never compromise. I don't love being a shut-in, so I try to make myself go to my book club meetings once a month, for example, but I chose online classes this semester because making it to campus once a week last semester proved extremely difficult (and it is prudent to point out that one of the big reasons I had for wanting to go back to school was that I thought it was important for me to get out of the house more). So there ya have it. Hopefully I've answered your questions appropriately. And I definitely agree with your points about taking the advice we are given and then applying it to our own lives in a way that works for us. That is what being an individual is all about - or at least, that's what navigating the medical world as an individual is all about. :) (This is Rhi, fyi. Haven't posted in awhile, haha).

  3. wonderful post as usual piper! honestly we HAVE to make these kinds of compromises ... like you said, if we didn't we wouldn't be living we would just be surviving. pre-transplant when i was really, really ill i was in survival mode only - didn't hug people, shake hands, eat communal foods etc. it's because one slip, one cold, and i might not stay alive. now post tx, although i am careful, it feels like we have a little more freedom. of course i don't want to catch a cold - but if i do, it probably isn't gonna kill me. ha.
    i enjoy breaking the rules a little so-to-speak because before i couldn't.

    i layed on the beach in hawaii - i put sunscreen on of course - but i wouldn't miss those experiences!!

  4. Great post Piper! Since I'm only a month out I'm still in hibernation mode and trying to navigate the happy medium between super perfect patient and actually living the life I worked so hard to get a second chance in. Before tx I was in the hospital for two months and just trying to survive. Now when I wake up each morning (w/ my head resting on that wedge pillow thing :) ) i rejoice when I can take a deep, easy unencumbered breath and not hacking my brains out. I wanna jump up and down ( and do sometimes) when I can take a long hot shower and not be gasping for air. My compromise right now is being super vigilant about masking and hand sanitizer when I leave the house; but enjoying little things like going to lunch at non-crowded restaurants at off hours, going for walks outside (even in this New England weather!), and maybe hitting a uncrowded store or two. All while thinking of all the awesome things I'll be capable of doing in the upcoming months that I would never have been able to before. I'm a beach bum but I'm already planning investing in SPF45 and a sun umbrella for this summer!

  5. Hey Piper!! I got my transplant almost 1yr 1/2 ago & i completely agree with you!! Unfortunately i was always someone who LOVED tanning in the sun & being bronze all the time, I hate to admit it but i was one of the CF patients who didn't listen when the dr's told me to stay out of the sun with certain antibiotics. However, ever since transplant my whole attitude has changed & it also did as soon as i got listed! I actually was hardly in the sun at all this summer but if i was i put on SPF 100. I also have fair skin so completely understand where you're coming from! I'll admit i don't put on SPF during the winter because, well, i forget! That's the truth, i always think "if i can't see the sun out it won't do me harm" when in all reality it can! I also shake hands with stranger, I got my hand sanitizer attached at my hips at all time! I'm someone who is a huge hugger, whenever i meet someone i'll either shake their hand or hug them! It's something I have always done & it's honestly something I will never change. (of course if the person is coughing up a lung, so to speak, i definitely think twice!)

    I completely agree with you on looking at all the rules individually, yes may of them make perfect sense & are very good ideas. Yet when you put them all together, hand them to us & pretty much say this is how you should live the rest of your life.. It makes me feel like i can only live in a bubble inside my home with all windows closed, blinds shut & nobody come i or out of my home for they might bring in germs. But we got the gift of a second chance at life to LIVE it!! So i do take all of there "restrictions" into consideration very carefully, yet at the same time I also want to live my life like i have never been able to, travel to places i never dreamed i'd be able to go & do things in life (like hiking) that i used to only dream of!!! I believe as long as you are living your life, LOVING how your life is & you are HAPPY with the person you are.. Well i think that's damn good!!!

    What's the fun in life if you play by all the rules.. sometimes you gotta break a few to enjoy the more adventurous side!! Carefully of course ;)

    X O X O X Cyster
    Addie Marie

  6. the health for/vs. "life" issue is something i think about a lot. for me, what i'm starting to see and really appreciate (in my, uh, old age) is that the relationship constantly evolves. so, something that at one point feels absolutely compromising (CFRD management in 7th grade) can miraculously become totally doable down the line (CFRD management in my mid/late-20s). that doesn't mean that i was initially short-sighted or that i am now hypocritical, it just means that things have changed. the right decision for me now is different than the right decision for me then - and that is ok. (for the record, i did treat my CFRD then, albeit begrudgingly, and fortunately, my CFRD retreated for about a decade, but the point remains because the same treatment now feels a whole lot less taxing and compromising).

    we have to make every decision based on what feels right at that moment, remain open to the possibility that it might change and choose not to regret previous decisions. it's really not that different from anything else in life, but with health for fundamentally unhealthy people, the stakes are just so much higher.

    the way i see it, our responsibility to ourselves and our loved ones is to keep questioning our decisions, keep challenging ourselves to avoid falling into the trap of short sightedness or thoughtless automation. i think the responsibility of our doctors is to really listen to our concerns and sometimes just by listening and taking our concerns seriously, they can help us overcome what initially feels undoable or find a middle ground that ultimately serves all aspects of ourselves (emotional and physical) best. frankly, it sounds like your doctor could have done a better job of this, especially for a patient who already expertly balances so much!

  7. Hi Piper,
    Great post as usual and right on the money. I too have CF and at 46 years old was transplanted on 8/23/11 and stayed in the hospital until 10/6. I had a number of complications some related to the lungs and others not, but I am thriving like never before now! I've known about you for quite some time because my cousin and godfather is Bernie Willett. I have followed your story and progress through the years from Bernie and from the many videos. My parents, brother and even my wife have worked the Celebrity Ski Event and met you there. I was never afforded the privilege. Your blog has been very helpful to me leading up to and after the transplant. Your insights and writing are exceptional!

    I too have had a tough time figuring out what can and can't be sacrificed. Like all CF'ers the pills haven't been a problem for me at all with limited side effects. But the alcohol and the sun are something that might pose a problem in the future. I have refrained from drinking anything since that beautiful August day, but I see myself having one here or there in the future. As far as the sun, I too am Irish but tan pretty well and am a devout beach bum with a house at the Cape in Brewster so this summer will be a major change. I will have to remember to constantly slop on the sunscreen because it wasn't something I always did before. Oh yea and I'm a huge golfer that will now spend have my pre-game ritual making sure I lather up.

    Like you, there is no way I want to anything that would jeopardize my beautiful lungs but I guess we all have to figure out what works best for us.

    Sean McCarthy

  8. My job as a CF/Tx partner is to make sure Ashley stays well without making her feel sick. When it comes to medical authority, I just remember that they thought she'd be dead by now. That reminds me of how much they sometimes don't know.

  9. That sunscreen list is already on my mind since I have an increased chance of skin cancer just from the Lynch Syndrome. Why is BWH accepting me as a transplant patient again? LOL!!! The chances of me getting cancer are high prior to transplant and after I am going to be a walking ball of abnormal cells....sheesh.

    Up until this point I have not compromised on anything that I can consciously think of. Except maybe stopping work, but that was part CF, part wanting to move. Life has always been my top priority. I do what I want and can. Can being the biggest part. I might compromise on things now but it is not because I am choosing the "best" and healthiest way of living, it is because I physically can not do it. I never avoided bars before the non-smoking laws went into effect. I waited tables in the smoking section because they tipped better than the non-smokers. Were these smart choices? NO. But at the time they were my choices. I don't regret them. I had hours and hours of fun at those bars and I made good money waitressing. I would do it all again if I could.

    Like Rhi posted up above, there are meds I will never skip - duoneb because I can't breathe without it. But my symbicort; Pulmozyme and 3% saline I have skipped/forgot about on numerous occasions. I can function without them and if it means I get more sleep, or I spend more time with friends/family then OK. We are the patients and the ones with lives. We need to spend it the way we want to and can because when the time comes for life to end, we want to have fabulous memories to look back on and not regrets. <3

  10. Piper, thanks for the great post. I was fortunate to grow up with a CF doctor who put a lot into the importance of a good "quality of life." Like you and some others mentioned, I don't compromise on my transplant medication (4 years this Jan - woohoo!). However, I do skip the "of the body" part of Communion, but partake in the drink, which is less likely to have been picked over by a dozen hands. Same on shaking hands - of course, followed by sanitizer. For me, it all comes down to how well I live this second part of my life that was so graciously given. As long as I'm cautious and reasonable, I feel like some actions considered to be "risks" are well worth it.