Over the Hump

Clinic again today, and oh! What a difference a week makes!

Seriously, this visit was night and day from the first post-tx clinic a week ago. Same wonderful people, same buildings, same tests, but way less confusion and about 1000 times more energy to get through the day. I never once felt out of my element or overwhelmed, and that's saying quite a bit considering last week's 3-ring circus.

Overall everything went well. PFTs still moving in a good direction (amazing to see after watching them go down for so long!) and I had a good Q & A session with my doctor. Nothing out of the ordinary, really. The best part for me was just walking around that huge medical complex without feeling like I was going to melt into some kind of puddle on the floor. I still haven't fully regained my strength, of course, but I could actually feel the difference between last week and this one, which was a much-needed spirit boost for sure.

Another amazing thing is actually meeting some of the other post-tx patients at Columbia. The post-tx patients go to clinic at different times than the pre-tx patients do, so it's a whole new crowd. Well, "new" in the sense that I haven't met a lot of them in person, but today I was lucky enough to bump into a fellow CFer from the CF boards (who also sometimes reads this blog!). He was one of my major inspirations for pre-tx transplant exercise and recovery, so to meet him was honestly pretty special. It continues to amaze me how vibrant and resourceful the CF community is. Seriously, we are a pretty amazing group of individuals, if I do say so myself. Much as I hate this disease, I feel oddly blessed to be a part of that larger picture.

I have to say again that I love the doctors and staff at my hospital. They always make sure everything runs as smoothly as possible, and they somehow manage to stay so nice in the process. I also got to drop by to see my CF nurse today after my visit with the transplant clinic. It was great to see her, and I felt so encouraged by her comments. It feels amazing to suddenly have people saying I look better, or healthy, or any other of a number of positive adjectives. To have gone from a slow but steady decline to a sudden sense that everything is getting better with each passing day is beautiful.

I don't think I have to patronize any of you and pretend that this process has been super easy. It hasn't, and I know I'm not fully over the hump -- whatever that hump really is. I'm still having a lot of trouble just sleeping through the night and doing normal things like eating on a regular schedule. I'm still trying to navigate this new maze of CF/TX-related diabetes. I'm still a little confused by all my new drugs. But I also have come more and more to recognize that this is part of the experience, and I know that in the past few days I've started to remember why I chose this option in the first place. My joy at some of the little things is returning, and to be honest I think it's even better in a way than the elation I felt immediately post-ICU. Because this time it's a real emotion, and it's life, and it's totally worth it.

Humps and all.

Update from the Godmother and Other Cool Stuff

Dear readers,

This is Joan, Piper's beloved Godmother, with a quick message about SHIRTS. We have some extras in adult S, M, L, and XL sizes. If you would like to add one of these amazing shirts to your wardrobe, please leave your email on the comments section of this site and the Godmother will get to you with details. At this point shirts will cost $10, but all proceeds go directly to the Cystic Fibrosis Foundation in support of the amazing new life my Goddaughter has received these past few days. And, as always, in honor of all of you and your amazing fights against this disease!

Got it? Good. (And don't worry, she's the wonderful, magic kind of Godmother who makes everything all better!)

In other news, who wants to see the first post-transplant pictures?! Coming to you live from the 7th floor transplant ward!

Keeping Your Shirts Warm

You've Seen the Dry Runs -- Here's the Real Thing

Columbia Pres Cough Buddy (Piper Hugs this to Cough)

Our Lady of the Greasy Hair and Big Smile

So there you have it...all the news that's fit to print! Piper is still recovering from what we'll just call a LOT of needle pricks today, so she's a little more out of it. They did reaccess the port, but it didn't help. Hopefully tomorrow will be smoother sailing in that territory, but in the meantime we're taking it in stride. On a positive note, Piper did a FULL LAP around the transplant floor on room air with minimal rest stops AND STAYED AT 96%! Um, woah.

Happy fathers day to everyone, and a very joyeous Sunday with yet more to be grateful for...as if it ever ends.

Lessons from the Westside Highway

I had an epiphany today.

Like many great moments in history, this one happened in the backseat of a Manhattan taxi cab. (As a sidenote, I'm convinced that cabs breed brilliance b/c of the "near death experience" nature of most intercity cab rides.) So anyway, I was sitting there -- hoping to avoid a collision and thankful that, just in case, I had already registered to become and organ and tissue donor -- and I had my epiphany. Because suddenly, in the midst of all the honking and the lane changing and the jaywalking pedestrians, I had this single, crystal clear thought:

Life would be so much easier if I could just stay seated all the time.

Seriously, that's what I thought. And no, don't worry, that wasn't the brilliant epiphany. Because immediately after having that one, singular thought, I started to remember how absurd, wrong, and well, just "un-Piperlike" that thought really was.

I grew up in Colorado. I spent my childhood hiking, biking, and skiing, when I wasn't busy swimming, riding my horse, and "galloping" around my backyard over hurdles in make-believe horse shows with my friends. Later on, in college, I volunteered my time at a day shelter for homeless youth, at which my primary job was to chase five year old children around and around the center's playground. In short, while I may never have been a super athlete, I have always been extremely active. And I certainly never in my life thought it would be "fun" to sit still.

For me, the hardest part of this whole process has been the feeling that I am slowly but surely "losing" parts of myself and my personality, if only temporarily. I no longer have the physical energy to do many of the things I love to do -- even small, silly stuff like dancing around my apartment or chasing the puppy. And I no longer have the mental energy to commit to certain other activities -- long conversations are sometimes tiring, and I find myself less likely to expend effort on being funny or outgoing. It's not like I'm not me anymore -- I definitely am. But I sometimes feel like a painting that's been left out in the sun too long. The picture's still there, with the artist's unique flair, but the colors are maybe just a little bit muted.

But, I promised you guys and epiphany, so here it is:

No matter how much CF takes from me right now, I will never allow it to cause me to lose sight of myself.

Okay, fine, I know that sounds a little bit cheesy, but you'd be surprised at how hard it is sometimes to say to yourself "okay, today I might only have the energy for the necessary things -- the treatments and the exercises and the appointments and the breathing -- but tonight I will make some time, even just a minute, to remember what it was like before those daily tasks took up all I had for the day, and to dream about plan the time when they won't again." It's not easy. In fact, sometimes it's painful to acknowledge that things are changing at all, but my revelation today was that in the acknowledgment -- in the understanding that while certain parts of me will always be present, others have necessarily taken a backseat lately to the simple task of staying alive and breathing -- there also comes a realization that this is not the only way for things to be. I don't have to accept these changes as permanent or even as a guaranteed part of my life right now. I can acknowledge them and then consciously choose when it's worth getting out of breath to do that silly nighttime rompus with Sampson. I can give myself the okay to focus my energy on the important stuff while still remembering that inside it all is a funny girl with a sarcastic sense of humor. I can give myself the freedom to take care of myself now, while still reserving just a little bit of precious energy to fight for the woman I was, am, and will be again.

And that, my friends, was an epiphany worthy of even the most terrifying taxi ride.

Stranger than Fiction

hi everyone.

i'm awake and at home - discharged directly from the ICU around 10 am this morning after coming in from the OR around 2:15 am. i will try and explain what happened (although it's hard for me to wrap my own head around, i fully admit!), but please keep in mind that much of this is what lawyers call "hearsay" -- meaning i heard it from someone who heard it from someone else, and possibly the line goes back even further. suffice it to say that it went more or less kind of sort of like this:

the harvest team had already examined the lungs and was ready for the operation, and the lungs were very close by to columbia so i had to be put out before transport so i could be ready by the time they arrived. donor hospital made a last minute decision to allow the liver harvest team to resection the liver FIRST (contrary to most every hospital which allows lungs and heart to come out first). somehow i still got put under b/c the liver operation was supposed to take less than an hour. liver operation took 4 hours during which time the lungs (and i believe the heart) were lost due to no O2/blood, or possibly b/c of debris or a clot from the liver.

they don't know all of what happened. after it all the lungs never even made it to columbia. one doctor said he believed that it was the first time in 15 years someone at col pres has been put out only to NOT receive their lungs. almost everyone who treated me was crying. i awoke and asked if i got new lungs and they very gently told me no -- after that i was so confused i don't really remember much. i know i asked for my family and was told they were on their way. i know i felt a very weird sense of disbelief and numbness. i think i was just so focused on breathing at that point too that nothing else even really registered.

i'm still confused. i trust god and know that this must have been right, but how? and at the same time, i have NO FEAR about this surgery anymore. is that weird? it's also true. i've done my part. i've made it all the way to the OR and i've endured it all and i've felt that moment of being put under ready to give up my lungs and receive new life. true, it didn't work out as planned, but i also know that i did it. the parts that were in my control, at least. and that's all i can ask of myself, so i know i can do it again.

** NOTE: PLEASE understand that this experience is crazy out of the ordinary -- even bordering on the absurd. although i recognize transplant for the deeply personal and individual decision that it is, please think long and hard before allowing a fluke like this one to put you off of the concept. if i had to go through all of this twice over to get new lungs, i would. i am happy to correspond with anyone who wants to talk about this, and contact info is to the left.**

so here's what i know:
1) i still have my CF lungs -- and NEVER, EVER let ANYONE tell you that CF lungs aren't amazing. because mine survived intubation and general anesthesia at a time when their work should have been over, and they RECOVERED enough to let me come off the vent (apparently without any incident) and make it home. thank you, lungs. i will miss you when our time together is over!

2) i have a transplant team willing to refuse bad lungs even at the last moment, and to face me and look me in the eye to tell me their decision. they are compassionate, caring, competent, and -- above all -- discriminating when it comes to PERFECT lungs. i am so grateful that the first (cognizant) words that i said to my surgeon were "thank you for not giving me bad lungs." he laughed and shook my hand. i was serious.

3) i have a CF doctor with enough insight to get me on the list and to make all this happen when i am still strong enough to endure all these dry runs and even this -- the ultimate in "damp runs" as i am calling it. again, forever grateful. i will always, always be an advocate of working hard to delay transplant, however i will also always shout from the rooftops the importance of going into this process STRONG and not too sick or emotionally fragile to function. this is without a doubt the biggest challenge of my life, and to be able to continue to live through it, and live with it, is a blessing beyond words.

4) i have tiffany christensen's book sick girl speaks, which is the ONLY point of reference i have found to date of a similar experience. i am so grateful to her for putting her experience out there for others. i thought about it and told my mom her story as i recovered in the ICU this morning.

5) i have faith. god is in control of when i get lungs. the universe is unfolding exactly as it should.

6) i have so much light from all of you. i love you all. thank you.

Bad Saturday

alright. so the doctor just came in to tell us, that after putting her to sleep, after putting her on the vent, after the epidural, they realized the lungs were in fact not good.

she's apparently now awake, off the vent, mildly jovial from the drugs and aware (though perhaps not fully comprehensive) of the fact that she did not receive a transplant today.

we'll see her within the hour. i'll let her fill in the additional details tomorrow. send her love and the strength, patience and positivity. perhaps one day, soon, with her strong new lungs we'll look back at this and laugh and thank god that she didn't get those lungs, but rather the lungs she will soon receive. those that will carry her forward.

Wheeled Away...

i'm erin!

first of all, in my brief fifteen minutes of blogette fame, i want to thank everyone who reads piper's blog. you're such a wonderful source of support and we are all so very grateful.

so, as of an hour ago they took her into the OR for final prep and the epidural. they speculated that the lungs would arrive around 2am-however the operation has likely started already. the moment she received the call she claimed these were her lungs, she could feel it.

although significantly less eloquent than pip, i will do my best to keep the updates coming. i'm not really an ace at this, so if i'm not responding to comments and whatnot it is either a) that i can't figure out how or b) that i'm with her or sleeping.

keep the positivity coming. i swear we can feel it! xx.

Positive Charge: Blogger Challenge

Okay, so apparently once I get on a roll I don't like to stop. I'm feeling good (well, feeling better) and it's translating into a sort of...blogtasticness? Um, yeah, anyway. You'll have to forgive if these posts are maybe a bit more random than usual. There's just so much bouncing around in my head right now, and I feel like it's as good as any a time to get it all out there. So with all that said, I have a new topic and I would totally like your input, sweet readers:

What does "positivity" mean to you in the context of CF, or life in general?

I feel like "positive attitude," "positivity," and other words get thrown around a lot by really amazing and well-meaning people, but I'm not sure everyone's version of what it means to be "be positive" is really the same. I mean, I highly doubt many people see themselves as having a "negative attitude" for example -- they may see themselves as being "realistic" or even "honest," and in turn they may think that others are unduly cheerful or even "in denial." And I guess this all got me thinking, because is one person's positive thinking another person's denial? Or is my realism your negativity?

And even more vexing, is our "hope" or "positivity" threatened by stories that don't fit into our paradigm? Or is our sense of self and worth degraded when others do better than we have with the same disease?

Honestly, I'm not trying to start a turf war here. I'm asking these questions because they seem to come up more often than I might expect, and now that I've hit transplant stage it's like they're screaming at me from the page, whether I like it or not. To use an example of two blogs I very much admire by two women who inspire me daily but who are dealing with two VERY different cases of CF: where does "I have CF, So What?" end and "Not so Bright and Shiny" begin? Because each of these are very real, honest, and open depictions of cystic fibrosis, and I don't think anyone in their right mind could argue with the notion that both of these women embrace life and live it to the fullest with grace, wisdom, and style. And more than that, they're both working very hard to stay positive in the face of some pretty daunting obstacles -- but do their versions of "positivity" differ, to some degree? Well, maybe. Probably.

To put this in a personal context, I have to admit that I often feel the need to "champion" the transplant CF community (which is, of course, not to say that I am the best or even an adequate representative for my fellow cystics in waiting -- it's just that I happen to be involved in a lot of discussions and therefore have the chance to speak up). I want people to understand that transplant is an option, that it's not the end of the world, that it's okay if you get sick and you're honestly doing the best you can, that there's no guilt in having cystic fibrosis or being overwhelmed once in a while. And more than that I want to emphasize that there is no one approach to CF -- I have known so many people who blow me away with their own unique brand of grace and strength in the face of this disease, having nothing to do with lung function or life expectancy or whatever other number you might be tempted to zoom in on. And when I first was told that I needed a transplant, I quite frankly considered it my mission to let everyone know that sometimes, darn it, you just need new lungs.

Fast forward almost two years from my initial meeting with the transplant team (sidenote: holy WOW, are you kidding me?? TWO YEARS??): not a whole lot has changed except that 1) I'm now actively listed for transplant, and 2) I've toned it down a bit. And, no, the latter is not because I no longer believe that people should know more about transplant and that transplanted CFers should be visible inside the community. It's more because I've become aware that it's not my job to force my view of CF on other people. Because if I'm really, totally, brutally honest I have to admit that my speaking up was largely for me -- I wanted people to know that I was trying, was living, was exercising and doing treatments, and still needed a transplant. And yet, somehow, as I've become a little more secure in both my disease progression and my own role in managing my CF, I've felt less and less need to justify my position (although obviously the impulse isn't totally dead, as proved by this blog). So now -- while I still find myself asserting transplant as a possibility, and a positive step for people with severe CF -- I also like to think I've mellowed out to the point where I can read statements like "you CAN control this disease" and not feel somehow attacked. I realize the person is saying that there are things you can do to improve your chances, and my response has moved from "must. assert. self." to more of a "here's to trying!"

But it's still confusing sometimes. How do we, as a community, strike a balance between honoring all CFers in their fights against this disease without judgment and encouraging people to believe they can actually have an impact when it comes to their personal health? Where is that line between guilt and empowerment? How do we showcase hope without pushing the sickest among us (those who need support more than ever) to the sidelines? And, to get back to the original train of thought for this post, where does denial end and healthy positivity begin?

Can we get to a point where we can say "yes, I got off the transplant list and I'm darn proud, but I understand that others might not, and that doesn't mean they're doing something wrong"? Can we honestly shrug our shoulders and say "hey, I need a transplant and I know in my heart that I did the best I could, but that doesn't mean I don't admire the other guy who managed to get off the list"?

And since we're all in this together against a disease that seems to attack each one of us differently, is there a way to reconcile our individual stories with respect and acknowledgment for the stories of others, even when they seem to contradict our own experience?

Well, obviously I don't have the answer, which means it's time to pass the buck. And of course I thought I'd put it to you guys, since you're basically the best wealth of information any girl could ever ask for. Post your thoughts here in the comments or write your own blog and let us know where we can find it. In other words:

Let's get real.
Let's be honest.
Let's start a conversation.
And, of course, let's be positive.