Thursday, March 14, 2013

The Latest Thing

Two years ago, I was angry.

I was at the time just a few months post-transplant. Not long before I had been struggling to breathe, gasping for air, and praying for life every single time I dared to fall asleep at night (assuming, of course, that I could fall asleep with all the coughing). I had been scared -- terrified really -- and I had been losing hope, but I had clung tightly to the notion that post-surgery things would be different. They were.

Immediately after waking up from having my lungs removed from my body, I realized I was in a whole new world. The drugs were different, the doctors were different, the ICU was different, the food was different, my body felt different -- even the floor on the hospital was different, as transplant patients have our own special ward. And, most importantly, I was different. I mean, sure, I was still me, still Piper, but I had gone from knowing almost everything about life with CF to knowing almost nothing about life with new lungs. For the first time in memory I was a "rookie patient" to some degree, and it was not a fun feeling for someone used to being able to tell even her doctors what's what. There I was, the "new me" I had been promised with all the breathing and life that I had hoped for, but also with a lot of questions and worries and general uncertainty. And, as it turned out, the "new me" was also a diabetic.

So I was angry. I remember sitting in the waiting room of my diabetes center making a mental list of all my grievances to unleash on my doctor or diabetes educator as soon as they called my name. I remember staring down at the waiting room floor from above my surgical mask, unwilling to meet the eyes of the germy little kids a few seats down or their parents who no doubt thought I was some sort of leper who should immediately be shipped back to my colony. I remember that I had just come from clinic, where I had been told AGAIN how badly I needed to gain weight, and clutching furiously at the insulin pen in my purse because I was completely unprepared for how to make that happen in a world where I didn't even know what I could eat, or how to eat it. Most of all, I remember this thought:

"I've lived through all this bullshit, lived with CF for 28 years, had my lungs removed, and now they're going to tell me I can't even just sit down and eat a meal like a 'normal' person anymore? Why won't they just leave me alone?!"

Fast forward a couple of years and I'm proud to say that I've moved on from asking that question all of the time. I have also, through a strange combination of eating habits, insulin, and just plain luck, been able to get my diabetes under control and keep it there. And of course I've adjusted to the "new" meds, learned some very important things about transplant through experience, and moved on to the next level of challenges that I know will always be present in my health, but that I also know now that I can handle. This doesn't mean I've become the perfect patient, by any means, but it does mean I've had some time to work with my new body, to figure out my own priorities within it, and to live with the restrictions of transplant (everything from no grapefruit to masks in hospitals to new and scary medical issues). Not just exist with them, mind you, but really live with them.

And I'm proud of that. I'm proud of us.

Life with CF is a constant adjustment, and anyone who says that it's not a challenge to make those leaps is flat-out lying. When I burst into tears one day at my nurse after she told me I couldn't attend a large, indoor party not far out of transplant, she thought I was nuts. I'm sure she was wondering why I cared so darn much about one stupid thing when here I was, alive and breathing. Seems silly, right? But the simple answer was that I didn't care so much about one event. I cared about the total sum of the change, and I cared a whole heck of a lot that my disease was allowed to dictate what I could and could not do. That, for me, was and is and will always be a huge deal. If we don't acknowledge the loss inherent in imposing even seemingly small (but collectively HUGE) restrictions on those with chronic illnesses -- for whatever reason -- then we fail in recognizing the entirety of the experience.

Ultimately, I'm glad I got my sugars under control, as much as I wish I'd never had to. I'm glad I got new lungs, as hard as that was and in some ways continues to be. I'm glad I'm alive and grateful to the people who helped get me here, no matter how much loss was incurred along the way. But that doesn't mean I'll let my gratitude be the only thing I feel. It doesn't mean this stuff is (or even should be) easy to accept all the time, just because it might make sense medically. And it doesn't mean I won't work as hard as I can, with every breath of this "new" life I've been given, to make sure that I continue to (re)create myself and my experience within each new circumstance. Because as far as I know there's only the one thing CF can never control: us.

Love and light, beautiful people.


  1. Was this triggered by the new guidelines, Pip?

    I hear what you're saying and am trying hard to understand the new rules and what they mean. All I can say is that it sucks to be disinvited to events I've attended and supported for years. What am I supposed to do now besides just fundraise and skip the fun stuff? These are the losses you talk about, but I don't hear anyone else talking about them. Do they just not get it? I'm worried.

    As an adult with CF I am responsible for my whole health, mental and physical. I haven't lived through transplant yet, but I know what you mean by changes and adjustments. For my own sanity though I wonder how much I'll be able to work hard toward funding events I can't attend or encouraging my friends and family to go on without me. I get left behind at the hospital, in bed, or just because I don't feel well enough. I don't want to be left behind, literally or metaphorically, by the organization I've worked with ever since I was 13 years old.

    Maybe there's no choice, but you're right. It's not fair, and I don't think it will ever feel all right for me.

  2. Hi Piper, we met a few years ago at the National Leadership Conference. My daughter, who is now 6, has CF. This post really struck a chord with me, as I find it hard to explain to people the true effect the "little" restrictions of CF have on our lives. To those not having experienced such a thing, it seems like a small price to pay. But to those of us dictated by it, it sometimes feels like everything. I hope you don't mind if I quote you on this one (giving you full credit), because you have put into beautiful words what I have been unable to adequately explain for six years.

  3. Every time I have the opportunity to visit my daughter's family which includes our precious CF granddaughter, I am awestruck by the daily & sometimes hourly demands that CF makes on all their lives. It's not a morning pill or a midday check of some function, it's ... well, ever. When fundraising, it's impossible to impart this sense to those to whom you are appealing, & I feel inadequate to make them understand. Thanks, Piper, for your words and inspiration.

  4. As a fellow Cyster (non-transplant) I want to thank you for that post and all of your refreshing honesty. I am grateful to have stumbled upon your blog and for a glimpse into the life of a post-transplant CF-er. You're absolutely right when you describe it as two totally different worlds, so to have a little insight into what the "new" world might be like is extremely comforting in a weird kind of way. Life isn't always roses - CF or not - and it's a breath of fresh air to hear that someone else can admit to feeling that way once in a while. Thank you!