A List of Things I Will Not Miss About My CF Lungs

• treatments, treatments, treatments! vest and hypertonic saline, pulmozyme and inhaled antibiotics (there is a chance I may need inhaled abx especially at first, but hopefully not forever)
• being able to sleep through the night uninterrupted, being able to FALL asleep uninterrupted, having Todd's snoring be the loudest thing in the bedroom
• not coughing in public, not being looked at like a sick person, not holding back coughing, scarfing down my "coughing pills" before social events, not pretending to talk normally while I really am trying my hardest not to cough
• washing nebs! oh my god, one of my least favorite tasks. hopefully no more ever!
• not worrying about incontinence when I cough too hard
• hemoptysis, coughing up blood - enough said
• emptying the nasty disgusting trash can that sits next to where I do my airway clearance
• hauling around oxygen, driving around with oxygen - it wouldn't be so bad if you could hook up straight into your car!
• the stares from being on oxygen
• the sensation of drowning if I swim with my face in the water for too long
• emptying the kitty litter box! (ok, this has to do with immunosuppression not new lungs, per se, but I'm still excited about it.)
• having my chest feel like total crap when I wake up in the morning before I've done my airway clearance...I just want to wake up, grab some coffee and sit out on the porch for a while
• the humungous pain in the ass that comes with arranging travel with oxygen - be it driving or flying, each presents its own set of obstacles, and it all adds up to a lot of inconvenience and expense
• coughing all the way through yoga class; having to put all my energy during relaxation into not coughing so I won't disturb other people (and still usually disturbing them)
• constantly having to clear my throat before I talk

That's a start anyway! I'm sure I will think of more as soon as I post this.

A Short List of Things I Want To Do With New Lungs

• visit my family in Michigan, Ohio and Montana (for starters)
• run around with said nieces and nephews in Michigan, Ohio and Montana
• travel to places I've never been...Oregon and Washington states, Montreal, Bulgaria or Croatia, Spain
• revisit places I've been and spend more time there...Ireland (particularly the West Coast), Germany, Northern Michigan
• take one of those awesome train vacations that stops in super cool cities and national parks
• explore as many national parks as I can! Yosemite is at the top of the list.
• hike in said national parks...and in the North Carolina mountains...and anywhere else I feel like!
• ride my bike downtown and on the Greenway
• go camping!
• spend more time at our place in the NC mountains...see the Rhododendrons on Roan mountain at peak season...go to the Highland Games
• get back into yoga!

Just When You Think You Have It All Figured Out

I've been in a bit of a funk this week. It started with having to put down our sweet little girl kitty Squeek on Tuesday. She likely had some sort of cancer for which we'd tried various remedies over the last few weeks but on Tuesday she had a steep decline. We knew it was time.

Todd and I have been incredibly lucky that, with six pets together, this is the first one we have had to put down since we met. It was actually the first time I've ever had to put down one of my animals. So sad, but happy we could relieve her suffering.

Squeek on top of bookshelf circa 2006

The End of the First Week of Waiting

As the one week waiting mark approached for transplant (Thursday), I also started to feel a bit like maybe I need to start settling in for the long haul. I know that's crazy to all you non-Duke people out there. We are spoiled by our super short wait times compared to other places. I'm not complaining. It's just that in my head I was either going to have to wait a day or a month and for some reason I wasn't sure how I was going to handle the time in between. Let me tell you - it sucks!

So we lose a kitty, brain starts to try to shift into more of a "waiting" mode, I see someone I know at rehab come back from transplant and they are looking ROUGH and then yesterday I started missing beer.

Maybe it was in my subconscious...I was dreaming about drinking cold glasses of drought beer - I was outside somewhere with friends enjoying it. I woke up and thought, you know what? I miss drinking beer! And for whatever reason - or all the reasons of why the week wasn't going so great - I started questioning if I really did want to give up drinking forever. I am doing this to get "back to life" but that will have to be a different life than I had even when I was feeling healthy. It's kind of a bummer but I'm hoping that I will be so busy enjoying my new lungs that I won't have time to think about it. And fortunately I have discovered some really good non-alcoholic beers. :)

Moments of Weakness

Then all day yesterday I was hoping I wouldn't be called...Not today, I'm not ready today. Please don't call, I'm not up for taking the first step down a road that I know will be long and difficult.

And I woke up today feeling a little bit of the same way. Like transplant is something that is happening TO me rather than something I am choosing to do. That is a huge difference.

It's not that I've turned against transplant - if the phone rang right now it would be "game on." It's that I've needed to step back and remind myself all of the reasons that transplant needs to happen NOW: being on oxygen and antibiotics all the time, not having the energy to get through an entire day's worth of activities without a nap, not being able to work or play like I want to, etc.

Maybe it is because my health has stabilized recently but most likely it is that I have just become more accustomed to living this way - this way of only half-living. It's amazing what your body can get used to! And mine has done a very good job at adapting and trying to convince me things are still going along alright. I hope that once I am transplanted I will look back at this and have a good laugh.

The Royal Treatment

Gowned up and hanging out with my stuffed Squeek

How many times do you walk into a hospital emergency department and get greeted like this: "Miss Smith? We've been expecting you!" *reaches out to attach my patient arm band*

Yes, valet parking, escort service, a personalized touch and, wait, walking through a metal detector? All part of the royal treatment at Chez Duke yesterday for what became my first (?) dry run. It turns out dry runs are far more common than I realized.

As Todd was watching TV and I was in the ends of a feverish nap (a side effect from my Reclast infusion on Wednesday), we got the call about 4:20 pm. After only two days on the list - wow!

The man from the emergency department front desk escorted us over to the Medical Pavilion next door. We went up onto the operating room floor - everything completely white and sterile, even the hallways - and knew we were in the right place when we saw the surgery schedule board with me as the only scheduled surgery for the day! That was weird. Like I said, nothing but the best, right?

It's me, all me, and nothing but me!!

Everything was very quiet. It's 5 pm on a weekend, a dead time for the operating rooms other than emergencies or transplants (I guess). We turned the corner into the triage area - we walked past empty supply rooms, deserted computer kiosks and then slot after slot with empty made-up beds with clean sheets, everything put up and away, lights off, curtains opened, all ready for the next patient...there was something apocalyptic about it. If you've ever had any sort of surgical procedure done, or been back in the ER triage, you know that these areas are always full and bustling with something you both very much do and/or don't want to see going on behind the curtains. (I'm always curious/nosy, aren't you?)

Anyway, we make it to the end of the hall to the one nurses' station with the lights on and three smiling nurses who are all expecting me and introduce themselves. I am shown to the room directly at the end of the apocalyptic hallway.

Getting Down to Business

First they have me give a urine sample. Then they have me change into a gown (I was hoping to put this off a while longer since they make maneuvering nearly impossible.) Then they wrap the pulse ox on my finger and attach the industrial strength sticky heart monitor pads to my chest (of course I don't discover this until I try to pull them off later!) They draw 15 tubes of blood off my port (yay port!), check my blood sugar, go through my entire list of medications, have me do a nose swab culture and then a man comes to do an EKG. They give me my first dose of Prograf (anti-rejection medicine.)

Also during this time, a woman from the research team comes to have me sign a consent for EVLP. This is the "lung in a box" study I have mentioned before in which an additional four hours of testing is done on not-quite-perfect lungs to see if they perform up to the high standards needed for transplantation. It is an attempt to have more lungs be usable that are currently discarded. I had been told that the lungs they had in mind for me would need to be put "on the rig," as they call it, when they got back to Duke (this means possibly an additional four hours of waiting time for me to know whether or not surgery is a go.) It also increases the chances of me having a dry run because the organs are used only about half of the time.

Finally, a man from the surgical team came to read me the consent form. It was all pretty straight forward. By now all of our questions have basically been answered.

And then, we waited! Eventually Todd decided to go get a bite of food before the cafeteria closed. About 20 minutes later, my phone rang: the lungs were a no-go. It was a little after 8 pm, not even four hours after we'd arrived. And while they aren't able to tell us, we speculate that the procurement surgeon must not have even thought the lungs worthy to bring back after he saw them. That was about as quickly as things could have possibly gone.

How Had It Felt?

While nerves definitely played in, I felt ready for surgery. I felt scared, yet confident in a way I hadn't expected. But I was also very excited when it was called off. It was bugging me that my hair was greasy from not having been washed in two days and having laid in bed with a fever all afternoon (yuk), and I had my heart set on a nice juicy steak dinner that night. If we hurried, we could still make it happen!

After shoving a pack of crackers and drinking almost all of my mom's bottle of water, we packed up and I was wheeled out of the Medical Pavilion to our already waiting cars - I tell ya, it's first class all the way at Chez Duke. It was a beautiful North Carolina evening, not even that hot, the sun starting to set.

If there is anything I've learned during my two-almost-three days of waiting for transplant, it's "eat when you're hungry, sleep when you're tired" (and shower when you're feeling nasty too, right?) because you truly never know when that call will come.

The next order of business then was finding a good steak dinner at 9:30 at night. We thought of a place with easy parking that wouldn't be that crowded. And so we showed up, me in my exercise pants and baggy sleeping shirt with two-day greasy hair, ate a damn good filet mignon, she-crab soup and petite asparagus spears and drank all the ice water I could fill up on -- all the while continuing to glance at my phone knowing that the next call could come at any moment.

These Are the Days

These are the days of waiting for transplant - although, technically, it's only been one day. How do I feel? Nervous, anxious, excited, scared, scattered, all of those things. And sometimes calm. When I have a quiet moment, I try to close my eyes and meditate...to prepare my mind and body for what lies ahead, that my body will accept the new lungs and my mind will weather the difficulties I encounter.

It's weird. My life isn't anything like what I used to picture it as being when I would need a transplant. I had images in my mind of coughing so hard you can't catch your breath, of being too tired to get out of bed, of not really being interested in food or much of what else was going on around me - self-consumed and miserable.

I'm none of those things entirely, although I am some of all of them. Today I went grocery shopping, came home and did laundry and did some more things around the house (there is a never-ending list of "one last thing to do to be ready for transplant!") And I'm still hanging out with friends, going to Starbucks for iced coffee and doing other things that I love.

This.Is.Insane. I am waiting for a call that will change my life forever. I am trusting these people entirely with my life. And I am okay with that. What's more, I think I am close to finally getting to the place I always wondered how I would get to - to the place of being at peace with whatever happens.

It's all a process though. As soon as I say and feel that, the next minute will bring a rush of nerves and adrenalin. I can only hope that the scale will slowly keep tilting toward calm.

The Sometimes Kindness of Strangers

When I started having to wear oxygen in public, I really hated it - probably everyone who has to wear oxygen in public hates it! I was so self-conscious. I got a lot of double-takes and stares - I look so young to be on something that most people associate with either people in the hospital or people who are very old.

That was years ago. Since I have been on oxygen full time for the past few months, for some reason I stopped caring what people thought and started taking an interest in peoples' reactions to me.

This isn't to say there aren't some days when the stares build up and happen to align with a bad mood I'm in. During those times I want to just stop what I'm doing, get the entire room's attention and shout out, "Yes, I need to wear oxygen because I have cystic fibrosis and need a lung transplant - get over it!" But fortunately that doesn't happen often.

The Overly Apologetic Person

One of the funniest things I've noticed from people, and probably the thing that happens the most often, is when I am walking by someone in some kind of close quarters, maybe a narrow hall or doorway, a situation in which I need to say "excuse me" before I pass them. They will often look a bit taken aback and reply "no, excuse me."

It's almost like they are surprised that I even said "excuse me." However, just because I am carting around oxygen doesn't make me exempt from basic social etiquette. Or maybe they are sort of apologizing for not seeing me and my giant tank first and getting out of the way. Who knows?

The Gas Station Attendant

One-on-one interactions can sometimes be interesting, like a cashier at the drug store or gas station (my diesel car now forces me to pay in person much of the time.) Sometimes people just have this look and I know they are dying to ask about the oxygen...I can see it even as I'm fishing for something in my wallet. Sometimes I make idle conversation or try to act "overly okay" as an attempt to divert their attention, but that only works some of the time.

I've had a couple of people ask me if I needed to be on oxygen from smoking. And they were both very blunt, "Is that because of smoking?" I realized after the second time this happened that both said people were smokers themselves. Hmm... I think they felt some potential comradery allowed them to leap over some social niceties.

Occasionally something completely random will happen, like an older man coming up to me downtown last week speaking English with a heavy Carribean accent and telling me a very long story about how he had done a sleep study for sleep apnea and, basically, was having a hard time getting the results back from his doctor. I'm standing there thinking, this man is neither homeless nor overtly crazy, so I don't want to be rude and just walk away. The moral to his story? Was this (pointing to oxygen) what the treatment would be if he did have the sleep apnea? Strange.

I like it instead when people basically pretend there is no oxygen while also being courteous. For instance, hold the door for me because I'm someone who could use a little extra help but don't make a big thing about it.

The Kiddos

Then there are kids, the most curiously aged and least verbally filtered of the humans. You can't blame a kid for starring - I might be the first person they've ever seen on oxygen. For the most part I try to avoid eye contact and just let them stare - let them take all of my awesomeness on oxygen in! Blow their little minds witnessing a medical abnormality!

Some kids go straight to their parents to ask what's going on with me, pulling onto a leg or shirt sleeve. Most of the time the parents give them a short answer with as little chance for a follow-up question as possible. Then there are the bolder kids who will step right up and ask what my oxygen is or why I need to wear it. I don't mind that, actually, although it seems whatever explanation I give is never adequate to wipe the confused expression off their face.

Some parents will see their kids talking to me and try to get them away, afraid of a socially awkward situation - but seriously, this situation became awkward when a healthy-looking woman in her 30s walked through the door dragging a giant tank behind her!

Some parents just go over the top. I appreciate the idea behind it but it's wasting a perfectly good teachable moment for their kids. In this situation, which I've had happen two or three times to me, a child will ask their parent about my oxygen while I am in obvious earshot. The parent then glances at me and responds to their child something like, "she gets to wear that because she is so beautiful." Isn't that nice.

My favorite parental response was given by my step-sister Amy. (Really, I'm not biased!) One of my nieces asked Amy about the oxygen while we were all doing something in their living room last Thanksgiving. "Why don't you ask her yourself?" she said. My niece wasn't sure. It took her a minute to formulate her thought but then she did come over and ask. I was so taken aback (I wasn't that used to the oxygen yet, and explaining health stuff simply to kids is harder than you might think) I fumbled for an answer, but I was happy about how the whole thing played out.

One Last Thing

One last thing I wanted to address is a question one of my best friends asked me along these lines that required some thought for me. It actually had to do not with strangers but acquaintances. I think seeing acquaintances in public can be a lot harder than strangers or friends - they know you well enough to care and be concerned but maybe not well enough to feel comfortable asking about it. My friend challenged me, how is it I want these people to be with me?

The answer, simply, is that it depends on the person. If someone is comfortable asking about my health, I want them to feel free to. I don't want them to assume that I don't want to talk about it or that it's uncomfortable to talk about. However, if the person isn't comfortable asking about it, I'd rather them just ignore it rather than acting weird.

Whoever you are, stranger, acquaintance, friend, family - because I know some of all of those people are reading this blog - I want you to know that I am almost always happy to answer questions about my health. It isn't strange for me to talk about it at all - I talk about it all the time! And if I get tired of talking about it and just want to be distracted talking about other things, I promise to let you know that too.

 

Photo credit: Lisa Simpson, imgur.com; penguin meme, quickmeme.com; AI service man, etsy.com; kid with parent, fotosender.com; penguin illustration, cartoonstock.com.