Monday, December 29, 2008

Decisions, Decisions

So Sammy and I finally made it back to the City in one piece last night (albeit without some of my sister's luggage, but at least mine got through...haha). I went to work today and just sort of reveled in the nice sea-level air quality. It was fantastic to be able to breathe without being tethered to some wheezy little machine. And yes, I think of those machines as "wheezy" b/c they always sound to me like they're breathing in and out - loudly. But any way you cut it, it's nice not to be on a leash all the time.

I've made a couple of decisions lately that are probably either a lot more or a lot less major than I'm making them out to be, if that makes any sense at all. The first is that working full time, at a more than full time job where I'm pretty much expected to be available for 24/7 work (whether or not that is actually asked of me), is just not going to cut it anymore. I still want to work a full schedule, but I think I need to ask to do 10-hour-plus days 4 times a week with a full day off in the middle instead of 5 10-hour-plus-days with the possibility of working all weekend, which is the current schedule. Don't get me wrong, my work is awesome about giving me the time off I need and respecting my boundaries. But junior associates at major NYC law firms are expected to bill ridiculous numbers of hours during the year. Three times already I have had assignments, often lasting a month or more, where I have been asked to work 12 hours a day, 7 days a week. It's part of the job description really, and it's why we get such great salaries and so much flexibility with our time when we're not super busy. But it doesn't work for me - I need a much more regular schedule - so I am going to talk to my job about setting something up at some pro-rata amount of my salary with fixed hours every day and no real expectation that I will be available beyond that. I just have to do it - I have to have the time to take care of my health and do all the "little things" like going to the gym that are quite frankly NOT OPTIONAL for me at this point. In two years I may have already been transplanted or I might still be inactive on the list, but either way I do NOT want to look back and question whether I could have made a smarter choice with work (without giving up my career, mind you) and maybe helped my body.

The other decision goes hand-in-hand with the above: I am going to get a portable O2 concentrator. My sats just aren't great anymore, they dip into the upper 80s sometimes even when I'm not super sick, and my heartrate sometimes goes up to 120-130 just at rest. Not okay, not what I want, and so I'm going to do something about it. I think I've been really resistant to O2 b/c it is such an outward, visible sign of illness. People see a 27-year-old wearing an O2 canula in her nose and they just get freaked out. It's not a cough that I can shrug off as "a cold" or "asthma" or even "allergies", it's not the same as my walking slowly (which some of my friends seem to attribute more to a laid-back attitude than to my health); O2 is a clear and unmistakable sign that something is very wrong with this picture. And I'm not going to lie, that makes me really nervous. I mean, what's the point of getting up in the morning, putting on a smart new outfit and a cute coat, doing up my hair and makeup to look professional and sleek, and then ruining the whole get-up with some ugly piece of plastic? It sounds absurd to me, and a part of me feels like once I step into that world of public O2 something will change forever. Melodramatic, I know, but it's still real.

The thing is, there's this other huge part of me who wants to be healthy. This is the smart half of me, the part that managed to get through a double major in undergrad and an Ivy League law school. I want to be healthy b/c I care about the quality of my life, and I know deep down that I will be able to do the things I love for longer if my heart and lungs are as strong as I can possibly make them. For me, right now, that means making a compromise and giving my poor, overworked body a break. I can still do things like work all day and go out with friends and walk my dog, but sometime in there I need to have a little help so that I can keep going. I can still live alone in my own apartment and maintain my independence, but I have to be willing to admit when I really do need help. This is why the rest and the portable O2 are linked in my mind - they are both compromises and adjustments I need to make in order to PRESERVE the life that I have worked so hard to achieve. At least, that's the way I look at it to help maintain my sanity.

I'm lucky b/c I don't need to go zero-to-60 here anytime soon. The O2 is something my doctor and I both feel I need to have available, but not something I need to be dependent on 24/7. I just want the option of a portable concentrator so I can take it into the office if I need to be on it for a few hours each day. I have my own office with a door I can close and lock - I already do nebs and IVs in there, so what's the difference really? But I'm not going to be rushing out and wearing O2 to dinners with friends. That may be in my future, sure, but I'll cross that bridge when I get to it. And the work schedule is something I have time to negotiate. I plan to bring it up in my January review and get the ball rolling, but I'm lucky not to be in desperate need of a change right this second.

For now, things are good and the air is (thankfully) much more "real" here than it felt up in Denver. I'm hopeful that if anything good can come out of some of the stuff I've been dealing with lately it's the realization that change doesn't always have to be earth-shattering. Even scary things like O2 canulas might actually have a place in real life.

But if anyone knows how to make that tubing just a little more stylish, please let me know ;)


  1. Good for you Piper! Those are major decisions and I can't imagine how difficult those must be. But I am glad that you are able to focus on your health and put things in perspective. Good luck with the discussion with work!!

    Take care,


  2. DO IT!!!!!! I absolutely LOVE my 4-10 hour days! Being able to work 2 days then sleep in on Wednesday is a freaking godsend. My boss was VERY understanding (bosses I should say) about cutting back my hours. I too was working more like 5-9/10 hour days and running myself ragged. He said that he would rather have me here less time and for a longer period of time then have me stuck in the hospital every few months and gone for 3-4 weeks at a time.

    Good luck with the O2. I was looking into portable concentrators and I could not find one for under a few grand. Super expensive and my insurance won't cover it since I have one at home already. But I don't need one for days yet I just wanted it so I could have the option of spending the night elsewhere and NOT have to lug my machine or go without O2.

    Best of luck and I am glad to see that the altitude helped clear your head a bit. Hopefully breathing in all this O2 out east here keeps you thinking the same way ;)


  3. I know that your decisions weren't easy to come to. I hope that your law firm is flexible enough to let you do what you need to do. 02 was an issue for me too. I hated having to wear it. HATED IT. But, I guess I just realized that I felt better when I wore it. I wish I had a fashion tip that would make that stupid plastic tube more fashionable. Maybe they make them in pink!

    After transplant I saw a few ladies at my center that had masks with big, huge, adorable red lips painted on the front. It was cute!

    hang in there girl!!

  4. The first time I wore o2 in public, I got a lot of stares and a "daaaammnn" from some idiot on the train. At that time, I thought regular o2 use was about to be part of my routine, but thankfully, it was just a rough spell. I need o2 at night and during exercise, and I have a couple of portable tanks to take with me to work, if needed. Sounds like that's about where you are, too.

    In a weird way, wearing it in public is like a big huge F YOU to cf - I feel like holding my head higher, sticking my chest out, and gloating that no matter what it tries to do, CF will never stop me from doing what I want. Of course, that's only on good days, LOL. I'm glad you're doing what you need to take care of yourself. Onward and upward!

  5. Piper, I simply love your blog. You write so poignantly about stuff that though i am not there yet, I know I will feel the same way you do about when I am. I would (will) have a very hard time with 02, but we do what we have to do and we perserve. I think that is what this disease teaches us, really. How to get the very farthest we can without a full deck. I hope that cutting some hours and having the 02 handy when you need it is what makes the difference for you so that you can keep doing what you love and loving what you do.