Wednesday, June 30, 2010

Part I: The Call

Recently I received an interesting request from a reader on the blog email for me to share some of the details of my transplant story. I thought that I had been doing so all along, but turns out that this particular reader wanted to see more of a narrative from start to finish, rather than a series of updates followed by my grateful ramblings. So, because I love my readers and because I think it's an awesome exercise in general, I've decided to take this anonymous challenger to task. For the next couple days here on A Matter of Life and Breath, I will be sharing my transplant narrative as I experienced it, to the best of my recollection. Some parts will be funny, some parts may be a little scary, and all of it will be as real as I can manage. Since I know not all of you will want (or need) to hear this story, I will be labeling all posts clearly as Part I, Part II, etc. Any other updates or check-ins on my part will always come under a different heading, so that you can still follow my personal messages even if you choose not to follow my transplant story. Hopefully this system will allow me to share and satisfy the curiosity of those who want to know without overloading those who just plain don't. Believe me, I understand both perspectives.

And now, without further ado, I bring you Part I: The Call

For those of you who are diehard Breathheads, you might have noticed that I posted a rather discouraged blog right literally the day before I got my call. I had just been to my transplant clinic appointment and learned that I was in fact neck-in-neck with someone else on the list. To say that this was discouraging news -- after so many dry runs and then a month with no call at all -- would be a huge understatement. Throughout this entire process I maintained that there were lungs out there meant for me, and that they would come when God was ready for them to reach me, but at no point in my journey was this a more important notion than than it was on that Thursday afternoon. Luckily my father had flown in that night and, as my family began slowly to rally from the blow of learning that the wait might be longer than we had ever imagined, we decided the thing to do was to all sit down together in an early Father's Day celebration and, in true Beatty form, talk it all out. And so, on Friday evening, that's exactly what we did. We headed out to a fantastic NYC seafood restaurant for some good food, family, and a lot of heavy conversation.

Dinner that evening was long and emotional. I was a wreck; my mother was exhausted from her year-long role of caretaker and had made plans for a quick visit home to Denver to see her dogs, her own mother, and her friends; my sister was stressed about the travel requirements of her job and her need to be in the city when the call finally arrived; and my father had come back to the lion's den at the height of all the chaos. We were, as a group, tired and overstressed, and we fought back tears throughout the meal as we struggled to reorient ourselves and regain our sense of optimism and hope. As part of this, we treated ourselves to an amazing meal, which is how my final meal with my CF lungs came to consist of hamachi, lobster tails, and an incredible dessert -- but that's a story for another time.

As I was polishing off my final bites and my sister was downing the last of her espresso, my phone rang and flashed a "blocked" number. I glanced at it and figured it had to my amazing CF doctor (although why I thought she would be calling at 10 PM I have no idea) so I picked it up without much thought, and suddenly found myself speaking to a transplant coordinator. She told me that they had lungs, that my transplant doctor thought they were a good match for me, and that I should head over "as quickly as possible" because the lungs had been, in fact, rejected by another center. Now, I want to pause here because that last part is true: my new lungs were turned down by another center because they were CDC High Risk lungs due to an extra antibody in the lungs to Hepatitis B. There are 3 blood tests for the virus, and basically this means that while the lungs passed two of them, one of the tests came back slightly ambiguous, complicating the whole process. Columbia has been able to use this category of lungs very successfully in transplants and I had been told in advance that I should accept lungs within this particular High Risk category. In other words, I wasn't shocked or scared to learn this information. Rather, I felt prepared and informed and very ready to get my new lungs.

Or something like that, anyway. Maybe I wasn't quite as prepared as I thought I was, because as we paid the bill and then headed down to the cab to race back to the apartment, I started to cry. Not sobbing, mind you, and it didn't last long, but there were definitely tears. I cried for the donor, I cried for all my dry runs and for fear this would be another, I cried for my old lungs and certain things I would be leaving behind (like that hamachi I mentioned, for example!), and I cried because I was scared. I even cried a little because I knew I would miss my puppy for the next couple of weeks if I had to stay in the hospital. And then, once the tears were out, I began to come back down to earth and accept the possibility that here, at last, were my lungs. It was an emotional experience rivaling the family dinner I had just finished, and definitely something I had to deal with before I was ready to move forward with the transplant.

The next hour or so is a bit of a blur. We got to the hospital fairly quickly after changing into our official lung shirts and grabbing our bags. Once there, we had to wait a while in admissions to get shown to my room on the transplant ward. Vitals and admission forms were handled quickly, and then came the waiting. We were used to the process after 5 tries and settled into routine quickly. I used my iPad to check messages from friends and kept up a steady stream of text messages. We continued to wait.

And then, quite suddenly, the waiting was over. A doctor with the team raced into my room, drew a ton of blood, and then quickly went to retrieve a wheelchair to zoom me off to x-ray. After several (relatively) calm dry runs with x-rays done in my hospital room and riding on a comfy gurney steered by transport, I was a little surprised to suddenly find myself literally racing the halls on a chair in the hands of a skilled doctor, but I had no choice but to "roll with it" -- literally. And roll we did, straight to x-ray, where we were again delayed by some sort of technical difficulty. By this time the doctor was flustered, I was thoroughly confused, and my family was a bit overwhelmed. My father took a stance in front of the x-ray door to give running commentary. I turned wheelies in the waiting room. My mom and sister stood, alternately chuckling and looking completely out of their element. And, of course, all of us wondered whether this would finally be the real deal.

At this point, I have a confession. I was convinced that this would be another dry run. There, I said it. My thinking was that if so many totally smooth attempts had been unfit for transplant, surely this one with all the hectic running around and the high risk lungs would never end up being "THE Call," right? I had literally all but written off the night altogether, and was just wondering what time we would be released to go back home. With every call the doctor received from the team downstairs in the OR, I was convinced we would learn the transplant was off.

But that call never came. We made it to the OR holding room shortly after leaving x-ray and finally began to receive the IV antibiotics and anti-rejection meds that had been ordered pre-surgery. At this point I was finally placed on a gurney and given pillows and a blanket. As I watched anesthesia prepare their portion of the pre-op, I suddenly began to believe this was real. There was no back up this time around. I looked at my family and thought, "oh wow, it really is going to happen like this." that was, I believe, my last full thought before the phone in pre-op rang and the the doctor came around the corner to tell me it was time to move into the OR to receive my new lungs. I received hugs and kisses from my elated and shell-shocked family and shed a final tear of total gratitude that this was finally happening. Then I was whisked off down the hall once again, my family remaining behind to take their seats in the waiting room.

My surgery started in the early AM hours of Saturday, June 12, 2010. Only 5 short hours later they would learn that I had my new lungs, that all had gone well, and that I was in fact already awake in the ICU. My new life was ready to start.

And I was ready to greet it.

Monday, June 28, 2010

Here's The Tricky Part

I made it.

Just got home from my first post-transplant clinic day, and I don't mind telling you all that it was...exhausting? Exhilarating? All of the above?

Okay, let's just go with intense. And new.

The newness of it threw me for a bit of a loop right off the bat, actually. I knew not to take prograf (anti-rejection drug) the morning of clinic before my blood draws, but I immediately got confused on whether I was allowed to eat beforehand, or whether I should take my insulin (sidenote here: I've been on insulin since the transplant to deal with high blood sugars, most likely caused by the high-dose steroids I'm on right now). Figuring better safe than sorry, I held off on everything until after the blood draws, which then left me scrambling for a clean, private place to test my sugars, inject insulin, and then eat a quick breakfast before moving on to my next clinic activity. Turns out I could have eaten in the morning and saved myself the trouble. Whoops. Oh well, did I mention there's a bit of a learning curve here?

Anyway, confusion aside, everything ran pretty smoothly. Col Pres does blood draws (with drug levels), chest x-ray, and then PFTs -- all of which are done on a walk-in basis before you get to your actualy transplant doctor. So since my transplant appt was for 10 AM, I showed up to the hospital at about 8 AM to get the other things out of the way first. I got my blood drawn (veins still bad, but what else is new?), did my x-ray without issue, and then headed over to the PFT lab, where I was lucky enough to meet a woman coming up on her 2 year anniversary of transplant. She and I chatted for a while about everything from time onthe list to transplant recovery to going back to work -- it really is amazing to feel part of the "transplant club" at last! Then I got called back and headed in for my first PFTs with my new lungs, ever.

Now, keep in mind that, as my doctor reminded me, many people haven't even left the hospital by 2 weeks out, much less blown PFTs yet. So this was kind of a test run just to see where we were, and how the new lungs were responding to my cues, etc. Suffice it to say, I was beyond nervous and excited to see how I was doing. And then came the big moment...

45% FEV1.

Wow. I can hardly believe that number, and I keep going back to my PFTs to stare at it. More than that, I can't believe the beautiful arc that my flow chart showed, especially considering that my lungs still feel compressed by my scar and my chest. It was so amazing, so life affirming, to blow that number and know that these PFTs will just keep going up (God willing). Obviously life is about so much more than the numbers, but I have to admit: it feels darn good to get some good ones for once.

Then came clinic itself, and that's where things got a tiny bit more complicated.

First of all, I just want to say that my clinic is amazing. My doctors are fabulous, the coordinators were excellent, and the experience overall was very friendly and reassuring. Everyone told me I looked great, was progressing well, and was doing a good job taking care of my new lungs. My heartrate was a bit high, which tends to be an issue with me, and we are going to try some things to get a better handle on it, including an appointment with a cardiologist at Columbia. I feel better having had the conversation about that, though, so hopefully we're already on track for smoother sailing on that front.

The other issue was that my bronch last Friday showed some A1 level inflammation/rejection, so I have to go on a prednisone burst.

I thought that surely the first time I heard the word "rejection" I would freak out. I thought it would send me into a minor tailspin even though I told myself (and I have been told repeatedly) that some minor acute rejection in the first months is common. I thought that I would have to talk myself down from the ledges.

But I didn't, really.

I'm disappointed, of course. I wish there was zero inflammation issues in my beautiful new lungs. I would love to continue on my gleeful little course of no bacteria and no other problems. But as far as issues go, I also recognize this as treatable, under control, and not a huge catastrophe. I mean sure, I broke out into a sweat when I first heard, and I definitely had (and probably will continue to have) a few moments of "oh wow, really?!" But overall, I'm mostly concerned with the lack of sleep I know is coming from the prednisone taper than I am with whether this will be resolved. I feel entirely confident that I will get through this and that it is not a sign of bad things to come. Maybe it's that 45% holding me up, but I know these lungs and I were meant to be together, and I'm willing to take the bumps in the road, especially considering I have no choice.

I realized today that I have a huge amount of trust in my transplant team -- in their ability, their kindness, and their wisdom. This is huge, and makes, in my opinion, all the difference in the world. I also have an incredible support system in my family, and my mother's strength today was a huge reminder of that. She helped me calm down after the insulin debacle (I was a little stressed at that point, to put it mildly), helped me get from place to place and navigate the maze that is clinic visit #1, and helped take notes through the clinic itself. Now that we're home and watching Wimbleton on TV, she's finally get some well-deserved rest.

I guess the lesson for today is that things don't always go exactly as we plan them, even when we think it's going to be something as easy as clinic. But when the dust settles, hopefully we'll have learned something about ourselves, and maybe even about the people who help us through it all.

And if we have to lose some sleep over it all, well, at least that's another hour in the day to just be grateful.

Saturday, June 26, 2010

La Vita e Bella

Okay, so in case you missed it (which is unlikely, since I've been practically shouting it from the rooftops for a while now), I came HOME with my brand new lungs on Thursday! I can't even describe the emotions that hit me as I stepped off the elevator and into my apartment hallway. The door was decorated with welcome home banners and a special sign from my beloved Godmother, and awaiting me on the other side were my puppy, a hot shower, and an amazing meal surrounded by loved ones.

I just don't think it gets any better than that.

Except that it does get better apparently. It gets better almost daily, and I feel it getting better as the pain issues and tense muscles subside, as I gradually gain strength to the point where short walks around the apartment or outside or even the hospital (yes, the hospital, more on that in a second) don't seem so daunting or draining, and as I recenter myself to the reality that I made it, am home, and have officially received my double-lung transplant. It gets better with each breath into my peak flow that shows an improvement, and with each night that I gradually come back to my normal resting schedule. It just keeps getting better, and after months where everything seemed to be getting worse and worse, I can't even begin to explain how amazing that feels.

Yesterday I actually ended up going back up to Col Pres for an outpatient bronch. This was the plan from the get-go, so please don't worry. My bronch from Wednesday showed just a small area of unresolved mucus, and we're monitoring it closely and even went ahead with a biopsy just to rule out every possibility, but the bottom line is that I feel good. I feel secure in the amazing hands of my lung transplant team, who so far has inspired nothing but confidence and a great deal of respect on my part for all the members. I feel secure in my new lungs, beautiful and healthy, as they continue to carry me through. I feel, as always, secure in my faith and in God. I feel secure in the capable hands of my parents and loved ones, who are helping to guide my still somewhat fuzzy head through this maze of new medications and protocols. To contrast this feeling of security with the fear and confusion I felt even a few weeks ago waiting for lungs seems totally mind-blowing. Not to mention spirit-saving.

I realized yesterday morning that I'm dreaming again. Not in the sleepy sense (although I will admit to having some pretty trippy transplant dreams -- pain meds, perhaps?), but rather in the futuristic one. I have spent more time in the past week thinking about where I'm going from here than I did probably all of last year. I have dared to allow myself the audacity of making some plans in my head, the madness of considering possibilities, and the joy of even believing that I might be able to make it all happen. It's an incredible feeling.

I once had a doctor compare new lungs to a butterfly's wings. The lungs take time, he explained, to fully reopen and inflate, much as a butterfly newly transformed takes time to dry out and stretch his wings before he can fly. It's a delicate and gentle and miraculous unfolding, and one I felt privileged to feel in my own chest when I later recalled his words.

But it's more than my chest, because I feel the unfolding in my entire self. My mind, spirit, and soul are also testing out their new wings, flexing them gently, stretching them out little by little to encompass all the hopes and dreams of the 28-year-old young woman who tentatively put many of them on ice a little over a year ago. Well, guess what, world? I'm baaaaaack.

I have had so many people -- from family members to the doormen at my apartment building -- stop me to marvel at the new way I look. Their comments are normally along the lines of 1 of 2 major observations: 1) my color is amazing (for some reason this is always the word of choice -- "amazing"), and 2) I look happy. I take both of these as major compliments, although I know that neither of them is about ME, per se. I am colorful because I am blessed, because a beautiful man and his family were generous enough to give an ultimate gift, and because there is life and breath, literally, in my veins. I am happy because I am blessed, because I am surrounded by love, because I have been given a gift so precious it seems unbelievable even as it seems completely meant to be.

I am colorful. I am happy. I am so. unbelievably. grateful.

Yesterday I wrote about remembering some of the harder aspects of CF. Today I reiterate that cry, but ask also that we each take a second, a few deep breaths, to recognize the sheer beauty of it all. And if Sarah, gorgeous soul that she is, can write this post about her precious son, well, I feel we can all take the lesson in that to be truly grateful for the life we have.

Life is not predictable. It is not always fair. It is not always perfect.

But it is always beautiful.

Friday, June 25, 2010

Of Blessings and Battles

I'm not sure how to start this post, so I'm going to take a page from my wonderful wordsmith of a Godmother and just lay it out there:

CF sucks.

Over the past few days I've been sending out extra love and light to some close friends battling some of the tougher aspects of cystic fibrosis. This morning I awoke to the news that Conner Jones, a beautiful young man, brother, and son, left behind his CF lungs to take his first few breaths in Heaven. And I don't think it's okay. As at peace as I am with my own faith and with the notion that, as Sara might say, the universe is unfolding exactly as it should, I still find it incredibly difficult to deal with such unfairness. And it should be. It should be difficult to lose a 6 year old to this damn disease. It should be a call to arms, and a reminder to all of us that this fight is far from over. It should cause a sobering moment of reflection because for all the amazing new drugs, the transplants, the miracles, there are still children whose bodies simply cannot hold on anymore. It frankly reminds me of so many evenings when I've been sitting on my couch, warm and well fed with my puppy beside me, and news of some catastrophe pops up on the nightly broadcast. I always sit there stunned for a moment, as if there's some disconnect between the beauty of the world all around me and whatever terrible unfairness has just unfolded in the world at large. It doesn't compute somehow. And that's also how I feel about Conner. It just doesn't quite make sense.

In stark contrast to those emotions is the absolute joy I feel at finally being home, and my gratitude at each moment as I realize more and more that this is real. That I do not, in fact, have lungs filled with thick, sticky mucus, slowly succumbing to infection. I walked in my door yesterday and just started to cry, silently. Tears streamed down my face as I cuddled my puppy, as I took my first shower and allowed my mom to help wash my hair, as I dug into the celebratory dinner made just for me by some of the people I love most in the world. In my head over and over I just kept thinking "I did it," but what I really mean is WE did it. My family, friends, doctors, donor and family -- all of us. We saved a life (and, in my donor's case, probably multiple lives). And that life was my own.

What a complete study in opposites.

I will never, ever understand all of this. And I'm okay with that. I don't need to understand everything to accept it, but I also feel strongly that it's okay to ask questions. It's okay to be confused about things like this. It's totally natural to ask why, even if we accept that maybe some questions just don't have an easy answer.

So I sit here tonight here tonight overwhelmed with raw emotion. So much has been done to advance the hope of patients of and families affected by this disease. So much is still left to be done. So many blessings have been given, both to me personally and to all those lucky enough to have known someone fighting CF. So many prayers and hopes and dreams remain to be answered, known, and lived. And for each moment we rally behind the battlecry of hope that has brought us so far, we need to remember all those for whom we are fighting, and all those whose banners are left for us to take up.

Breathe easy, Conner. And may all of us everywhere continue to breathe easier.

Wednesday, June 23, 2010

Home and Love Across the Country

Well, post-transplant bronch #3 was a success today. I honestly find the naps (and then sleeping off the sedation later) really relaxing. Those are some good drugs they've got there.

My big news is that everything is set for my return home tmw. I will be back at col pres on Friday for another bronch (they are watching the mucus in my lungs to make sure it continues to clear), but docs agreed no need for me to stay inpatient in the meantime. So home to the SamBear and my pre-arranged post-tx fried chicken. I have also been given the all clear to shower! So tmw is a landmark day for sure.

Tonight I am sending all sorts of love and light to a friend of mine who is in the hospital with some unknown CF bacteria. I adore her, have looked up to her as a CF role model my whole life, and am so proud to call her (and both her lovely sisters and their parents) my friends. I am so certain she will come through this with no problems, largely because of her certainty and strength in herself. I can say without hesitation that she is one of the most driven and high achieving people I know, CF or not. I feel so strongly that God is with her right now and can't wait to get word that everything is as it should be. In the meantime, all my prayers are for her right now, and I can't wait to introduce her to my new lungs!

- Posted using BlogPress from my iPhone

Tuesday, June 22, 2010


I tried something new this morning.

As I was waking up and starting to feel the morning tinges of pain, I decided to hold off for a sec on the meds. Not out of some weird need to feel the pain, mind you, but simply because I wanted a minute to be WITH my new lungs. I wanted to really feel them for just a second.

So I felt, for the first time, my scars and my staples.

It wasn't much, really. For starters I've learned my lesson about staying ahead of pain, and for seconds I didn't need long to accomplish my mission. I simply touched my staples and those lines across my chest that so delicately encase my new gift. I said a quick prayer of thanksgiving and then I moved my fingers away to get on with the business of healing and breathing. It wasn't overly dramatic or sentimental. It wasn't a flurry of excitement.

It was perfect.

What I feel right now is peace. Peace in my chest, peace in my mind, peace with my healing. And even during the bad moments of pain and cramps and,yes, even fear, that peace seems to hold steady, waiting patiently for me to come home to the reality that my lungs are not dying. My spirit is not lost. My soul is at home with this kindred spirit now alive in my chest.

And I can feel my scars.

The crazy thing is that I can't really see my scars because they don't span my whole chest. They run on either side from under my armpit to the bottom of my breast - probably about 4 inches each. From my perspective, they are nearly invisible, but I know others would see them clearly. And somehow I like that metaphor - scars on display but, to their owner, felt rather than seen. Like my new lungs I know they are there, and yet they appear to me as seamless parts of myself. I can feel them and that is enough.

I am blessed beyond measure.

- Posted using BlogPress from my iPhone

Monday, June 21, 2010

Another Tube Bites the Dust!

Hi lovely readers:

Today has been a bit of a roller coaster. The great news is that we were able to get blood from my veins - MAJOR step in the right direction. I don't know whether I mentioned my clot on here, but I ended up with a small DVT from the surgery/neck catheter. This wasn't unexpected since I've had clots before and it makes you forever prone. It also hasn't been much of an obstacle, especially considering that I know how to give myself lovenox shots, but it did make for some difficulty getting a good vein because the other arm was being used for a heparin drip. The end result was some painful sticking and an eventual arterial draw that really kind of sucked, but knock on wood we seem over that hump.

The not so great part of today was that my magnesium levels were off and I ended up having really painful back cramps. I went back to two percocet from one every 6-7 hours just because I really needed to stay ahead of the pain. Luckily they were able to identify the imbalance and correct it by early afternoon, so I got in my physical therapy and was able to avoid muscle relaxers. One thing I will say: transplant is a time to push yourself but also to be kind to your body. I love the high I get from walking a little further each day, but I also enjoy not being doubled over in pain. It reminds me of the Kenny Rogers' song "The Gambler" -- know when to hold 'em, know when to fold 'em. It's also such a great lesson in both pushing to achieve and in not being obsessive about it all. I know progress will continue to come and I feel very at peace with where I am a little over a week out. It sounds funny, but I'm content to do my best and accept my accomplishments, which is a great milestone for anyone anal enough to enter the legal profession!

The highlight of the day, without a doubt, was the removal of my 3rd chest tube. Only one left, and feeling more human everyday, as my friend James so perfectly put it. Much as I loved being half-robot, it's fun to feel little changes as my body returns to its normal state -- albeit a new and wonderful normal. Goodbye, tube, and thanks for the memories. Hope to see you again never!

So there you have it. Loving every minute - well, aside from the painful ones - with these new lungs. It amazes me again and again how precious these lungs feel, how grateful I am for the chance to live. I wake up in awe that God and my donor could bring me such a gift. I go to sleep literally smiling. I feel such gratitude for so many things, it honestly feels as though I might burst. I'm a broken record repeating again and again how happy I am, I know, but I don't even want to try and stop. So instead I'll just thank you all for listening, again.


- Posted using BlogPress from my iPhone

New Lungs Everywhere

Wow, I am, once again, totally blown away by the response for shirts! Thanks to all my would-be fashionistas/os. Let's make this world an even better place full of beautiful new lungs!

Here's some quick info:

1) we want everyone to get a shirt, but we will be producing new versions at some point as well. To that end, please submit orders for these shirts THIS WEEK. They will be shipped out as we have them for now, and if we need a new order it will go out by early next week sometime. So you have until FRIDAY, then these lungs are hitting the benches.

2) my amazing Godmother suggested we donate proceeds after this point to the CFF, and I plan to do so. Suggested donation is as she posted yesterday. However, no one will be denied a shirt based on cost since that was never the deal. Please consider sending us some money to go towards new hope and therapies for people with CF. Fighting CF, one set of lungs at a time!

3) for those who wish to order multiple shirts at this point, I can still do that. However, just know that your order will probably ship a little later.

4) PLEASE send pics of yourselves in shirts to! I'd love to do some photo montages and even use them in some upcoming CF awareness projects!

Tons of love to everyone. I feel so lifted up by all of the support, and love sending out the shirts! We will of course have some "new lungs" available as my talented sister continues her career as transplant fashionista. Also keep an eye out for glamour magazine's fashion gives back issue for something very special!

- Posted using BlogPress from my iPhone

Sunday, June 20, 2010

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 if it ever ends.

Arterial Madness

Okay, so much for my no complaining spurt...

Today's first goal was simple: a basic blood draw. This was actually more important than usual because I have a small DVT again thanks to transplant surgery. No huge deal, but another thing to monitor and stay ahead of just to be safe.again, should have been no biggie.

To bad my veins had other plans, huh?

We tried my arm, my hand, my port, my foot (yes, foot), my other hand, and finally even my artery -- all without getting a single tube. We finally went to my FINGER and got the one tube no one could live without. It remains to be seen how they will go about trying for more, but I think face a port reaccess at a minimum.

I don't even mind -- I'm just happy they got their one tube.

So celebrated by taking a nap and marveling that it's still before noon. Seriously, how did all that even HAPPEN?! I also used some dry shampoo and changed pants, making me "clean" by transplant standards.

The good news is that blood draws don't really hurt, and we did meet our goal in the end. Proving nice again that even a small bottle of blood is sometimes enough to make for a memorable triumph.

- Posted using BlogPress from my iPhone

All of This

Well, last night was a little bit of a revelation.

The first major milestone of the evening (other than my 1 week anniversary!) was the message from a friend that she received her shirt! So they did, in fact, go out and should be arriving soon. I think she liked it, too, which made me excited on a personal level. I'm so excited to be able to offer the shirts to readers, and stay tuned for new wardrobe additions.

Milestone number 2 was the fact that I was satting 95 on room sir. Excuse me?! 95?! Um, where did that awesomeness come from? Donor, you continue to amaze me. (side note: I did slip the o2 back on around 3 am when I woke up briefly after some odd dreams that were likely drug-related, but it wasn't scary or bad.)

And finally, I realized yesterday that I can still cough - which is a good thing! For one, it means that my lack of cough is REAL and not a product of lack of muscle or something. For another, your body needs to clear its airways. So yesterday I had a couple of good coughs, and that was awesome in itself.

In other words, yesterday was another in a long string of good days. I'm not going to pretend this was easy -- my family is already laughing over my post-surgery drama -- but I will already say that it was worth it. I've teared up several times already from the amazing, well, just GREATNESS of it all. I can begin to express my gratitude, my optimism, and my faith in this all. And if that sounds melodramatic, just imagine how it feels to actually live it! I want all my pre-tx friends to someday breathe this way, and my head just keeps marveling at how wonderful it is. All of which should be taken with a grain of salt seeing as I'm a well-known sentimentalist, but all my CF friends - know that I have SUCH high hopes for us all, even those of us who don't go the transplant route, because if breathing can be this easy then surely we'll all taste of that somewhere.

In the meantime, though, it's tough to comprehend just how beautiful this slow unfolding of such an ultimate gift can be. I know I'll never be able to say thank you enough to everyone who made this possible, but I also know now that it never hurts to keep trying. So thank you again, all of you, for all of this.

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Saturday, June 19, 2010

One Week Since You Looked at Me

Happy one week anniversary to me!

Seriously, I think it finally hit me today: I am on the "other side." I am no longer waiting, just healing. No longer wondering, just watching in awe. How amazingly blessed and lucky am I?

I still have trouble with typing long posts, so please bear with my couple of short ones per day -- trust me when I say it's for your own good not to hear my rambling!

Today I am just grateful for time with my wonderful family and godmother, texts and messages from friends, and little blessings like the promise of Sammy at home. Oh, yeah, and I've been on ROOM AIR most of the day! I even had some coke to celebrate (so crazy, I know - call me a rebel) and of course took in some nice long naps.

Happy anniversary, lungs! I am grateful beyond expression!
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Happy Thoughts

So I thought I'd take sec today to say thanks - because it just seems so appropriate to be happy and grateful right now. In other worse....

Thank you donor for the gift.
Dr. Sonett for the skill (and his wholeER team!).
Thanks readers for listening.
To mom, dad, Joan, and Erin for giving me everything they have over and over and over again, and for the lesson in true love.
To Ben and Luke and Jules and Molly and Kerith and Erin and Gabby and all my many friends here, there, and everywhere - for countless things.
To Kelley and Jerry and Jen and Tom and Kristy and Gina and Tina and the whole Columbia crew for my sanity and for making this seem doable.
To Dr. DiMango and Victoria for laughing and always being there even when I was annoying and whiney and scared.
To Dr. Lederer, Dr. Shaw, Dr. Wilt, and Dr. Arcasoy for making me trust this could happen.
To Dr. Tsiouris for trying every combo known to man in an attempt to keep me healthy.
To cf2 and my online family for the support and the rants and mostly for letting me be crazy.
To everyone for caring enough to make me believe.
To my nurses - seriously, you all amaze me.
To God. To God. To God.

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Friday, June 18, 2010

Small Blessings

Really do make all the difference!

The major update is that sitting up has become "default" even while in bed. I am less propped and feeling more and more like a functional person just muscle-wise every day. The posts remain short as I am blogging from my iPad, so it takes a bit more energy to type without splodgy typos everywhere. That and honestly no news is good news at this point: small, peaceful steps towards recovery are huge daily victories.

I say it all the time but I remaining awe of all the support and love. I feel honored deeply touched to have had everyone along with me for this ride. For now though, it's more than enough to be safe, warm, and preparing to spend another day reaching ever new milestones!

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Another day, another (small but important) milestone: up and walking! In a "tmi" update, I have been using the restroom like a, well, functioning adult all day. That plus a walk of about 700 ft or so plus lots of sitting and a successful bronch means a great and very productive day!

Huge thanks for the day to my godmother, dad, and Ben for the gifts and help! I feel so special and loved! Also thanks to all for the much-needed encouragement!

Plan is release by early/mid next week. Praise God and good friends for the blessings (and the starburst!)!

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Not sure how I got here, but I'll definitely take it.

My wonderful surgeon dr. Sonett just came in to tell me I'm aiming for home by Tuesday or Wednesday, in part determined by how long fluid takes to finish draining and, of course, in part hard work. I feel up to the challenge for the first time in a while.

Honest comments: 1) this is hard, 2) like most hard things, it seems worth it so far, and 3) the icu, while full of great people, is a hard place to be.

Goal for today is to walk and get stronger. Can't believe I have 4-5 days left!

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Thursday, June 17, 2010

My New Digs

Yep, I am officially on the regulars ward for transplant patients. No step down, just babysteps toward the end goal. Next step is too small and I am so grateful to god and all of you. God's name be the glory and all will be peaceful and right. Much love to you all.

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Golden Afternoon

So, proving once again that blessings always show up when you least expect them, I just received the good news that I have a bed awaiting me in step down. The arterial line is out. The catheter is out, and all that remains is for me to get settled in my new room and await tomorrow's bronch.

Thank you so much for all of the support and peaceful vibes. I hope to update more regularly from the floor. In the meantime, all my love and light to you, and thanks for seeing us through what has been a wild ride.

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Hi there readers! Calm and peace is the name of today's very careful game. This will likely be short and sweet but progress is being made slowly. Big steps today: neck line gone today, also lost an iv. Still have some annoying lines but small steps are good enough for now.

Love and light to all!
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Wednesday, June 16, 2010


One more quickie! Thanks to Joan, Pip's most amazing God mother, and world famous Jane Austenologist, t-shirts will in fact go out this week! We've been wearing them all over the hospital, seriously. Just in case they didn't know from our incessant badgering what we were there for...

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Tuesday, June 15, 2010


Not too much new to report.

I think Pip summarized it best:

Today was rough but better. Slept some and was able to interact. Still feeling somewhat shitty to be honest. Mostly hot and out of it.
Love you all!

Although visibly uncomfortable, she is improving. She's sitting up for an hour each day, and scheduled to leave the ICU whenever they can find her a room to herself.

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Monday, June 14, 2010


Apparently Piper had a good night, sleeping for most it. When we left her last night, a big smile on her face, eating generic jello, she felt fantastic. The epidural was working. Today is a bit tougher.

She's tired and uncomfortable. Although nothing in particular hurts, she doesn't feel well. She said she felt pin pricks all over her body, a symptom of the drugs and energy she's exerted thus far.

Still, the doctors say Piper's progressing beautifully and speedily. Today they'll put her in a chair, in which she'll be expected to sit for two hours! Sadly, to me it looked more like a lawn chair and less like a lazy boy, making that an uncomfortable task for the day.

Last night, after her blog post, we sat and read all of your comments. Your words of support brought laughter and tears. She wanted to know who posted what, loved the iPad commentary, the burger king orders, your jokes, your prayers, and your stories of healing. She was happy to hear that others had struggled with breathing, learning to use their new lungs; to hear that figuring out the right combinations of pain meds is hard, and hear your enthusiasm and love coming through the screen. If she could, she'd be dancing with each and everyone of you!

Love and peace to you all. We feel so blessed.

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Sunday, June 13, 2010

Live from New York...It's Sunday night!

Hi everyone! It's me!

Good God! She typed that all on her own. Just stumbled in on her eating her first post-transplant smart-gel!

Here's what she has to say for herself (this time I'll type!):

Not much to say.
I did my vest.
I got some rest.
I passed the test!

Well folks there you have it! She she got a transplant and came out rhyming! It's a good day!

Much love. As requested, by her, I'm reading Piper all of your recent posts right now!

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Off the Vent!

It's official! Pip's off the vent! Actually, she's been off for nearly six hours now, but insistent on keeping her I-pad in the ICU, where updating her blog solicits the risk of a severe reprimand from one of her highly skilled, but also intense nurses...

She's doing amazing. She has more color than we've seen in years, she's attempting text messages (she managed 'hi' early this morning, while still on the vent! Totally impressive considering she could hardly see the screen), remembering said text message attempts, and is even managing jokes!

Her breathing is belabored right now, which her doctor said is normal. According to the respiratory therapist the new lungs are slightly larger than her old lungs, and therefore take some getting used to. She's in some pain, but has an epidural now, so that should improve. And, of course, she's super tired. That said, her doctor told us she's progressing remarkably well!

Whenever we go in there she wants me to read comments from her blog out loud! Please keep sending your love and support and hilarious commentary. She loves hearing your stories and your jokes! Many of you have made her laugh out loud, which is pretty impressive considering the effort that can take!

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Saturday, June 12, 2010

Sleeping Beauty

Piper's doing wonderfully. They plan to have her off the ventilator by noon tomorrow! Though she can't speak, or likely read, she's demanded her i-pad back! Though I'll continue to sneak it away to post little updates, they might be a bit further apart and considerably less dense. Will update again tomorrow!

Sleep tight everyone.

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Piper's out! She's in the ICU strapped up to hundreds of tubes, bizarrely conscious and communicative. When I was last in there to check on her, she was waving her hand in the air asking what time it was and trying to spell M-O-M. Through an extremely strange series of charades, she got out that she wanted me to return with my mom-quite likely so that we can go through another game of charades where she asks for my dad, or for Sammy or for other things that she likely won't remember tomorrow.

Though initially worried about minor PGD- a condition in which the lungs, weary from their journey, and hesitant about their new home, rebel, filling with fluids and mis-functioning. Most often, and as it seems with Pip, PGD clears up on it's own. The lungs acclimate to their new environment and resume their work.

She'll remain on the vent until tomorrow-resting up until then.

Continue to share your stories. We're curious about her level of consciousness right now-what might be going through her head in this crazy strapped down, drugged up state of mind!

Thank you for your continued prayers and support!

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So it's happening! We're in the home stretch of the surgery-less than an hour before she's taken to the ICU. According to the doctors, everything is going well.

It's an interesting story. We were at dinner, just finishing dinner, just finishing a very stressful family dinner. The day before, at a routine Transplant appointment, my mother asked if Piper was still first on the list. They learned that, in fact, no, she was no longer first on the list. Someone of similar height and the same blood type had recently moved ahead.

This news didn't sit well. My mother, after an entire year without being home, seeing her friends, sleeping in her bed, or taking her dogs for a walk was on the verge of losing it. How could we be in the same place we were in last November? Suddenly we thought, we had to continue down this path of grey. Continue waiting, hoping, thinking ourselves in and out of boxes, figuring out a situation that is, frankly, un-figure-outable.

So dinner was stressful. There was a main course of Red Snapper with heaping sides of tears, anger, guilt, love and a glass or two of wine. As Piper finished her dessert, pretty much in that awkward silence that follows one of those awkward family dinners, my father paying, my mother quiet, the phone rang. There they were.

And here we are.

I will continue to update, until she can. We thank everyone for there support and love. Please know, we feel it.

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Friday, June 11, 2010

Just When You Thought It Was Safe to Stop reading...

Yep, I'm headed in for another try! Prayers for the donor and family, and please send good thoughts for a GO this time around! We're pulling into the hospital now, but Erin will (hopefully) be online soon to give you all the details about my NEW LUNGS!!

(PS: this goes without saying, but there may be a delay on the shirts! Will send them out as soon as possible!)

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Serum Sickness

If you have CF, you're most likely a little bit of a druggie. Or at least, here's hoping you are, because drugs and pills and medicines and pharmacies are, let's face it, just a way of life for most of us. Our pill organizers and neb cups runneth over, to borrow a phrase, and for the most part that's a very, very good thing. After all, that life expectancy doesn't just keep increasing itself -- it's all thanks to developments and breakthroughs in the therapies and treatments we use to stay as healthy as we can for as long as we can, God and that pesky pseudomonas willing.

But what do you do when the "cure" becomes, well, not so curative? What happens when the options available to help keep you healthy suddenly turn on you, and you find yourself getting ill from the very weapons you use to combat the illness?

Fasten your seatbelts, ladies and gentlemen, because you're about to get on board that delightful little ride we call serum sickness. And just to warn you, things might get a little turbulent in here before it's over.

Serum sickness, for the blissfully uninitiated, is what happens when your body becomes ill in response to a drug used to treat an underlying condition. It's similar to a classic allergic reaction, only the symptoms are more immune-system based (so think fevers, feeling ill, swollen lymph nodes, nausea -- all the good stuff). And the treatment, as well, is similar to a classic allergic reaction, only you're dealing more with corticosteroids (hello, prednisone!) rather than, say, a quick dose of benedryl. In other words, it is not. fun. at. all.

For some reason or another I seem prone to serum sickness reactions, especially when it comes time for IV antibiotics. I used to only use tobra and cephalosporins whenever I needed a tune-up, and I noticed that I would often get fevers, vomiting, and general malaise within a few days of starting the drugs. This probably should have been enough to tip me off that something was wrong, especially when the fevers started creeping up toward the 103 range and the vomiting became a near constant issue, but in addition to my CF I seem to have a self-diagnosed case of "tough it out syndrome." Meaning that, since everyone knows IV antibiotics make you feel like you've been hit by a MAC truck for the first few days, and since I can only assume someone who had just been hit such a truck might experience fevers and difficulty holding down food, I decided pretty much unilaterally that what I was experiencing was "normal." So, while I never hid the symptoms from my doctor at the time, I also never really expressed just how serious these flu-like bouts of illness really were. And because I would finish the IVs and immediately start feeling better -- no more vomiting AND no more stupid CF infection! -- I just assumed we had to be doing something right. All of which combined to make it several years (and a fever of over 104) before I actually voiced the somewhat perplexed opinion that something maybe wasn't so normal about all of these issues, at which point I was immediately removed from the cephalosporins and began discovering that medicine could actually make you feel better -- without first making you feel like you were dying. Call it a revelation, call it an epiphany, call it whatever you like. I just called it a major relief.

Unfortunately as my has CF progressed, so has the list of drugs that cause these types of reactions. It now includes zosyn (antoher previous go-to drug) and, in what has to be one of the most ironic twists of my disease so far, even merrem. I say ironic because I actually participated in a study at one point at my pediatric hospital to see if IV merrem was effective with CF infections. I was lucky enough to get the drug at that point rather than the placebo, and my PFTs skyrocketed from a baseline of about 85% to over 100% for the first time since I was a young child. My doctor immediately declared merrem our "ace in the hole" and from then on I had visions of merrem as a miracle drug, ever at the ready to swoop down and kick some serious PA (pseudomonas ass). More recently, though, my knight in shining IV armor has started letting me down, and although I still call him into battle every so often, I've started having to seriously monitor his behavior with -- yep, you guessed it -- more prednisone. It's a tricky situation for sure, and one which constantly challenges both my doctor and me to walk the line between controlling my CF infections and controlling the reactions that require more drugs that are, themselves, not so good for the body.

But hey, nobody ever said CF was easy, right?

I guess all of this is a really long way of explaining some of what happened yesterday at my transplant clinic appointment. Unfortunately, we got some startling news regarding my position on the list -- news that reminded us all, once again, that this is a delicate, frustrating, ongoing, and most of all unpredictable process. And there's no way for anyone to change that fact.

I know transplant is the right option for me given my disease progression and my personal belief system and philosophy. I also know that getting new lungs, like living with CF, is never easy. No one ever promised it would be -- quite the opposite, actually, as we were told over and over again by friends, doctors, and just about everyone else who's ever "been there" that the journey would be, at times, grueling -- and maybe it shouldn't be anyway. Maybe it's necessary to walk through some fire in order to truly appreciate just how amazing this gift from a stranger willing to rise from the ashes of personal tragedy and share his/her life with another really is. Maybe you need a little fire and brimstone to really grasp the miracle that is transplant. Maybe.

Or maybe not.

Because even though no one promised it would be easy, the two words that popped into my mind yesterday as I packed up to leave my center were simple and all too familiar to me as a CF patient: serum sickness. By which I mean that we have reached a point in this transplant odyssey where the process itself has become draining, leaving all of us feeling just a little bit sick and wondering if what we're going through is, in fact, "normal." Only this time there is no prednisone, there is no other antibiotic waiting in the wings, and there is no way to simply check into the hospital for a quick desensitization. This time we're left to find our own way off the ride and back on track to the healing process, and let me just say that the path is definitely not a clear one.

But you know what, that's okay. I'm actually okay with all of this right now, maybe even more okay than I was a few days ago. Because just like that moment when I finally realized that IV antibiotics don't have to come with a side of spiking fevers and uncontrollable nausea, I feel as though yesterday was a bit of an awakening for me. An awakening into a world where it's okay to talk about the fact that transplant isn't easy; okay to have long, drawn-out conversations with my CF doctor about what's truly going on in my life and my lungs; and okay to recognize that there is, in fact, a balance between being grateful for the "cure" and being aware that sometimes even the best things we can do for our bodies have unpleasant side effects.

Call it an unasked for lesson, but it's still, once again, a huge relief.

Wednesday, June 9, 2010

Special Delivery

So yesterday while I was at gyrotonics, my mother received a special delivery of new lungs!

Lots of new lungs . . .

200 pairs of them of them, to be exact.

And now we get to ship them off to you, my wonderful readers!

A few important details:

1) I hope to get all the shirts shipped off between today and tomorrow, but I have to ask for a little slack seeing as I also have transplant clinic tomorrow. When your order is packaged, addressed, and ready to go, I will send you a quick email confirmation. If you DO NOT hear from me by Friday evening and you have a shirt (or multiple shirts!) coming, please email me!

2) I will be processing and shipping orders received within the deadline first, and then overstock. Don't worry, I'm 99.9% sure I have shirts for all of you, but fair is fair. Overstock orders will be processed on a first-come, first-served basis.

3) Here's the sad part: something happened to the blog email address a couple of days ago and I know I lost 3-4 new emails. So please, if you asked for a shirt and haven't heard anything back from me at all yet, email me again! Chances are there is a shirt available for you, but I just never got your request.

4) Shirts are, as previously mentioned, free of cost. Donations are being accepted for the cost of shipping and printing via paypal at You may also send money the old fashioned way, and please email me for my address if you'd like to take that route. Suggested donation is $10/shirt, but donation is 100% optional.

5) I've already had some people with larger requests ask about another order. Stay tuned for possible post-transplant celebratory shirts (with color options!).

Happy (stylish) breathing, beautiful people.

Monday, June 7, 2010

Sam, I Am

I've spent some time (but not nearly enough) on this blog telling you all about how awesome my family is. In case you haven't quite caught on yet, I'm fairly certain that without their unflagging support I would be off living in a ditch in some highly desolate area, clutching my (evil) home PFT monitor in one hand and mumbling "I don't need no stinkin' lung transplant" over and over under my breath while attempting to borrow IV supplies from the friendly junkie down the way. An exciting career choice, sure, but not one that I feel would be particularly productive for me at this point in my life. Suffice it to say, then, that support systems are key when it comes to preparing for a double-lung transplant, and I'm happy to report that I have been blessed beyond measure in that department.

There is, however, one critical member of my team who really never receives (or asks for) much recognition. This is a guy who goes by many names (or, rather, many nicknames) and wears many hats in our household. He's on full-time cuddle and distraction duty, pulls his shift as personal exercise trainer, and makes it his personal mission to make sure I replace my Pari cups on time by periodically chewing the old ones into a slobbery mess of unrecognizable plastic -- purely for my benefit, of course. He's also the guy who officially reached adulthood this Sunday by celebrating his landmark second birthday. Congratulations, Sammybear. You've come a long way, baby.

Yep, it's beyond doubt that Sampson forms a key part of Team Piper, and I guess that's hardly surprising given his sweetness, loyalty, and, well, really, really soft fur. As a friend told me the other day, "happiness is a warm puppy." Agreed.

What is slightly surprising, though, is how this little man came to join my squad in the first place. In august of 2008, I had just recently completed the vast majority of my evaluation for transplant. Told by the tx team that I was too healthy to be immediately listed but would need to be followed closely, I returned home, started this blog, and began the long (and ongoing) process of teaching myself how to wait (or, as was the case at that point, how to wait to wait). I entered the transplant odyssey cautiously optimistic, but also very much aware that it was the start of a new stage in my disease and in my life. And it was most likely this awareness that caused my to put my plan to get a puppy on the back burner for the time being. Because surely, I reasoned, it's far better to wait until after the major surgery that can't be scheduled in advance (and the waiting for the major surgery that can't be scheduled in advance) to make a major life decision like adopting a dog. After all, timing is everything in this game, right?


Fast forward two months to October 2008. I spent a beautiful day tooling around the Museum of Modern Art with a close friend and, upon leaving, we happened to see a small shih-tzu and his owner hanging around on the sidewalk. This led to a conversation about my decision not to get a dog right away, and also to my emphatic declaration that, if I were to get a dog, it "would definitely not be a shih-tzu!" (As an aside, I don't mind admitting that I suffered for years from PSTSD (Post Shih-Tzu Stress Disorder) thanks to a very aggressive and deceptively named little terror called "Puppy.") I figured that my authoritative tone and mature stance on timing settled the issue pretty conclusively: no dog right now, and no shih-tzu ever.

I adopted Sampson, the shih-tzu mix, the next day.

Yes, really.

Turn out that while I was boldly daring to set the course for my own life (or at least insofar as furry companions were concerned), God and my sister had other plans. And these plans apparently involved waking me up from my Sunday afternoon nap to rush up to the West Village, where my sister had already found and fallen in love with the puppy she pre-emptively took to calling her "nephew." My role in this play, it seemed, was simple: show up, adopt the dog, and welcome into my life a new era of chaos, housebreaking, chewed up medical equipment, and unconditional love.

In the slightly over one and a half years since Sampson joined my family and my support squad, I've finished my transplant evaluation, battled a blood infection and a seriously ridiculous port-removal saga, been actively listed for transplant, waited nine months on the list (and counting!), had over 15 rounds of IV antibiotics, and survived several dry runs and one crazy "damp run" for new lungs -- all with my amazing doctors, my incredible family, my awesome friends, and my wonderful puppy by my side.


It's been a long journey so far, and I have every reason to believe that will get even more intense before it's over, but it has also been worth every mangled neb cup, chewed through power cord, xopenex rocket inhalers, and every moment of life and breath in between.

Happy birthday Sampson-bear!

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Saturday, June 5, 2010

Birthdays and Cliches

There's an old cliche that claims that the more things change, the more they stay the same. Like most overused sayings, this one has more or less lost its meaning, at least when it comes to my own life anyway. Whenever some kind soul attempted to impart this particular piece of seemingly outdated wisdom on me I would simply smile, nod, and do my best to politely conceal my internal eyeroll. Because really, change is change, right? No need to get overly philosophical about the whole thing.

Tonight we celebrated my beautiful mother's undisclosed-number birthday (hint: she's older than me, which makes her at least 29). We did this by inviting a few friends here in NYC to a small but lovely little birthday dinner. And it might be worth mentioning that this dinner was held at the same restaurant we celebrated her birthday at last year, which was also the day she came to New York for a short visit and ended up leaving behind (temporarily) her husband, home, dogs, friends, and job for what is now a year-long trip and counting -- all for her daughter who suddenly needed more help dealing with end-stage cystic fibrosis.

Um, yeah, talk about a celebration of love.

I don't brag about my family often enough on this blog, honestly. I mean, sure, I might mention my father's crazy antics that keep us all laughing whenever he visits, or the fact that he's now racked up enough frequent flyer miles between Colorado and New York to take us all on a much-deserved vacation when this is all over. And I know I occasionally make reference to my sister's amazing talent, or the fact that she somehow manages to keep us (mostly) grounded even when we're stuck listening to drunk men in the local ER. I even think that I've touched on how grateful I am to my mom, who lives with me, helps me with errands and IVs and the boundless energy of my puppy (who we joke views her as his personal nanny), and accompanies me to every single appointment, even if it just means waiting in the waiting room for moral support. I say these things, of course, but I never really feel like I say them enough.

There wasn't a whole lot I could do today to make mom's birthday extra special. I just recently started a new course of IVs, which of course means I have an infection, and I spent most of the day coughing or sleeping, and trying to rest up for tonight. But I was able to go with her last night to the bakery to pick out some cakes (yes, she got two -- and I dare anyone to claim she's not entitled, although truth be told both were small and to share). I was able to put on a nice dress, wash my hair and make myself look somewhat pretty, and I was able to go out to a dinner that was all about her, exactly as it should be. In the grand scheme of things these small gestures don't feel like all that much for someone who everyday helps make sure I can breathe, get appropriate exercise, and have everything else I need to live as normal a life as possible under the circumstances. I know I could never repay that gift in a million years, but I'm happy that for tonight at least we were able to show mom a small piece of how amazing she really is.

And as for my gift for the evening, I think it came the second I looked around the table (in the same beautiful dining room we sat in a year ago tonight in what would become my mother's official "welcome to New York" dinner) and saw old Colorado friends, new NY friends, my sister, and my mother enjoying an amazing meal worthy of a one year anniversary and a older-than-28 birthday. Because if I had to surmise this past year in one single word it would probably be "change." We have struggled to find our footing, to hold onto our optimism and our values, and to stay one step ahead of the disease that is slowly upending our lives. And we did it all only to come full circle -- back to love, back to celebration, and back to the simple sharing of an awesome meal and special day with friends.

The more things change, indeed.

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Thursday, June 3, 2010

Wearing My Heart on My Sleeve (Or on My Blog, Anyway)

First things first: I didn't get admitted to the hospital.

Okay, now that we've gotten that out of the way, I think I left a few details out of the last post, which is probably to be expected from an attempt to post a blog immediately after returning from the ER. So, backing up a bit, let me explain why I was in the ER in the first place. I think I mentioned that I had a resting HR of 225 bpm for over an hour before I headed in, which probably sounds completely insane, but for me is, well, only mildly nuts. I also know that I mentioned SVT, which stands for supraventricular tachycardia. In my case, this is caused by something called an "accessory pathway" in my heart. When triggered, this accessory pathway kicks in shortens my heartbeat circuit. So think of it this way: an electrical impulse travels around your heart by a predetermined pathway in order to cause a heartbeat. I have an extra pathway that cuts off some of this normal circuit, and when that pathway is switched on it causes my HR to speed way up, because obviously it takes less time for the electrical impulse to travel the shorter circuit. It's kind of like a heartrate shortcut, I guess. And when this happens, my HR jumps from its normal rate of about 100 all the way up to 225 in literally and instant. And when it stops, it drops back down just as quickly.

The good news is, SVT isn't usually a major issue. It can cause problems, and some cases can even be life-threatening, but I've been lucky enough to always be able to break the attack and switch "off" the accessory pathway by myself, at home, without medical intervention. It normally takes 10-20 minutes of lying down and performing things called vagal maneuvers. These are a series of progressively more and more embarrassing tricks to try and slow my heartrate by stimulating the vagus nerve. And the really cool part is that it's best to have someone with you as you perform these circus acts (examples of which include bearing down like you're trying to make a bowel movement, forced gagging, and submerging your head into ice water), because if you pass out at any point or feel dizzy it's probably time to head into the ER. Fun stuff.

I didn't pass out, but I wasn't able to stop it either. So after an hour and 15 minutes of groaning on my mom's bed with ice packs over my eyes, I finally gave up the ghost and made my way toward a downtown hospital (read: not my CF center), with strict instructions to call or page my CF doc with any developments.

Upon arriving at said nameless downtown ER, I checked in at registration and headed to triage, where I used my pulseox to try and convince the triage nurse that my HR wasn't playing around. No go. She told me I would have to wait "at least an hour" but that in the meantime she had orders to give me a quick EKG. I counted that as a partial victory and headed back with yet another nurse, who, upon running the EKG immediately paged several doctors and led me straight back through the waiting room and into the patient area waving my EKG and tapping any doctor we passed on the shoulder to whisper "SVT!" in a hurried voice. I may or may not have smiled smugly as I was led past the triage nurse who demanded I wait, although I'm the first to admit that it's hard to look smug when your heart is beating faster than a marathon runner's. I like to think I pulled it off though, because I'm just an overachiever like that.

Once back in the patient area I was treated to a bevy of concerned professionals assisting me with everything from changing into my hospital gown to covering me with those annoying heart monitor things, all while asking questions like "why are you on oxygen?", "are you short of breath?", and my personal favorite "oh wow, is that cough normal for you?" To be fair, they didn't have a chart on me since they were working extremely quickly, and I was only able to explain about the whole CF/transplant thing in between other questions about the real issue: my heart. And when they asked about drug allergies and I gave them my list the nurse responded "well good, those are all antibiotics and we won't need any of those." Definitely an odd statement to the ears of a CFer.

I have to hand it to the staff of the unnamed downtown ER, because they got the SVT stopped incredibly quickly by an advanced technique known as . . . taking my blood pressure? Um, yeah, you read that correctly. They put the BP cuff on to take vitals before beginning treatment, which was going to be a quick dose of heart meds via a peripheral IV that had already been placed, and low and behold the squeezing acted as some sort of off switch and suddenly my HR bounced right back down to 110 bpm. And let me tell you, there is no better feeling than that moment. Imagine having your PICC pulled after 6 months, and then double the relief. No joke.

So, moral of the story: SVT sucks, but not as badly as CF, because after all that they decided that due to my cough they might like to keep me in house. And obviously this made no sense to me, seeing as 1) I wasn't at my CF center, 2) I had the cough pre-SVT, and 3) I had already spoken to my CF doc earlier that day and knew I was scheduled for clinic and to start IV abx in the morning. I told them as much, and luckily they agreed with the plan of attack, though I was told to "make sure [my CF doc] gets everything checked out" (as if that were ever in question anyway). And then I left, about 2 1/2 hours after arriving, making it one of the shortest ER visits of my life and, thanks to a drunk man celebrating his birthday, also one of the more entertaining.

I'm not going to drag you through all the CF stuff that went down the next day at clinic, but I will say this: I ended up on IV merrem and levaquin, with no residual symptoms from the previous nights' episode aside from a general feeling of exhaustion, and -- the most important detail -- back at home. Which kind of brings this post full circle.

So there's the back story that explains the madness. I know I should count myself lucky that my only ER visit since October has been for an unrelated and fairly benign heart issue, and I definitely do. But at the same time I'd be lying if I tried to say that this latest experience didn't shake me up a bit, because as long as I've known about my SVT I've always been able to control it myself. I would slip into it suddenly (ironically coughing and PFTs are major triggers for me, since both involve sudden, forceful movements), and then know that aside from the humiliation of "bearing down" in front of whichever poor soul happened to be closest to me at the time, I was going to emerge unscathed and not much worse for the wear within a half hour or so. And I know, of course, that one episode of uncontrolled SVT that was eventually stopped without meds anyway isn't a big deal. I know that, and I'm treating it as such. It's just that on top of everything else, I really wish I didn't have to worry about the now very real possibility that a racing heart might send me to the ER with no warning.

So you know, there's that.

But the good part about all of this is that I'm here with my Sampsonbear, currently SVT-free (a great way to be), and hoping that these IVs kick in soon and help me feel better so that I can get back to the business of more fun activities, like my mother's upcoming birthday. And in the meantime, trust me, I'm not looking for any more shortcuts.

Tuesday, June 1, 2010

Just Another Manic . . . Tuesday?


So today started off easy enough. Got up, did treatments, began negotiations with my doctor about starting IVs tmw, and headed out into the NYC Summer heat (yep, it's finally here) with my parents to look at some property. Nothing too surprising -- even the IVs seemed semi workable, and I set up a clinic appt for tmw to help decide the age-old inpatient vs. home question. Add in a French cafe for lunch and thugs were looking, if not perfect, then at least within the realm of normal.

And then along comes SVT.

Yep, that's right -- this post isn't entirely about CF. SVT is another set of letters that makes my life complicated, and today it was on in full force. For over an hour my HR was around 225 bpm, before I ended up at the nearest NYC ER. Luckily the issue was resolved pretty quickly, and I was simply made to wait for a couple hours to make sure everything was stable. I was also given strict instructions to get fully checked out tmw at clinic, which was obviously never in question.

The best part about this experience? Well, it might have been the drunk man who told the cop who brought him in that she had "a thick ass" and was "a sneaky doughnut eater." To her credit, she won best retort of the evening with the line "sir, that is One thing I definitely do NOT have, is a thick ass!" turns out she had recently qualified by time alone for the Florida marathon. Nice.

Or it might have been that my dad was the victim of street fraud, when a man on the sidewalk literally threw fried rice on him and then demanded $12 because dad had "ruined his dinner."

But I'd say the winner hands down is that, for now, I'm home with the sammybear, camped on my couch and savoring a few hours of peace before clinic tmw and almost certain admission. True, between the SVT and the CF I'm more than a little fed up with the abbreviations in my life right now, but for now I choose to focus on that one, universal truth:

There is, truly, no place like home.

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