Sunday, July 30, 2006

July 10, 2005 8:45 p.m. to July 11, 2006 at 7:00 a.m.

It was my cell phone.
And it was Karen.
My parents didn't know that. They just watched my face.
"Emily, hi, it's Karen."
"Hi." I knew what she was going to say. There was no other reason for her to call at 8:45 on a Sunday night.
"I think we have a pair of lungs for you."
I don't know what my face did, but I think I tried to keep it blank. Or at least calm, given that everyone was looking at me.
"OK." (my vocabulary was astoundingly, um, limited)
"We don't have them here yet. Dr. Galantowicz went to go harvest them, so we're not sure. They're from out-of-state. I'll call you back in a bit and let you know when to come down, since you live so close, OK?"
"Don't eat or drink anything else. Keep your phone close. I'll call you back."

We hung up and I just sat there, staring at the small electronic device that had just given me the best news of my life. The news that would save my life.

Everyone was still looking at me. I looked up. "Um...we've got organs, kids."
My whole family was in the room. I don't remember what they did, but I think one of parents asked, "Um, what ? Now?"
"Not now. They're in Minnesota. They're going to look at them."
"But they're for you?"
"Yeah. They match."
"Well what are we supposed to do ?"
"Nothing. Karen's going to call back. It's not totally definite yet until Dr. G looks at them."

Then people started to move. my parents went upstairs to start packing a bag. I went to the piano and Mel and I began to sing hymns or silly songs, loudly. I don't remember what Bryan did. We sang for awhile, including, bizzarely, "The Bear Went Over The Mountain." (don't ask. Really.)

Karen called again around 11. "Things are going slowly," she said. "Just hang tight. I'll call you again when I know more."

We said a rosary after that, the room dark, illumniated by a few lamps. My brother watched a sports highlight tape. I went upstairs to try to pack a bag, not sure what to bring. Something's Got to Give was in my DVD player, and I watched Diane Keaton and Jack Nicholson stumbled around her Hamptons house in a thunderstorm before I gave up on TV. I was too keyed up.

I threw some random things in a bag, and then we just had to wait. And wait. Until Karen called back around 12:45 a.m.

"OK, you can come down now. Head to the Emergency Department and we'll go from there."
"WE're going, people!" I shouted, as everyone headed for the car. It was so strange, all of us piled in my mom's Civic, Dad driving, at this hour on a Sunday night. Obviously no one was going to work the next day. I-70 was totally clear of traffic, and it was a gorgeous night. I held tightly to the doorjam and stared at the sky.

We got into the loop by the ER entrance, and as I got out the car, my father kept driving, running over my foot in the process and catching it at a bizarre angle. "Um, stop!" I said, as Dad realized what he was doing.

"Are you OK? The last thing we need is a broken foot," my mom said, scolding Dad.

"We're good." I grabbed my bag and headed for the desk.

"Hi, I'm Emily DeArdo, my doctor should have called down," I said as I came in, as I have so many times before.

The nurse sorted through the papers. "What are you here for?"

I closed my eyes briefly and laughed. "Um, I'm the lung transplant..."

Her eyes went wide. "Oh! You're the girl! OK!" She found the paper and hustled me into a room in the ER, where my vitals and weight were taken and other preliminaries were done. You want to get through the ER quickly? Get a transplant.

Transport took me up to 4AE, the last time I would be on this floor, since after transplant we always went to the Heart Center/ Post-TX floor to avoid the CF germs on 4AE. This would also be the last time I'd had the nursing staff that had taken care of me for the past 12 years.

The floor was silent, as befit the hour, and the only light came from the nurse's desk. As I came up, no one was quite sure what to do with me, since I was the first tx. They didn't have to give me anything, I was already accessed, thanks to the port, so I was shown to a room. I should've showered. If you are ever on a tx list, SHOWER before the surgery. Really. It'll be a loooong time before you can shower properly again.

I thought I would be on pins and needles, and in fact had warned Karen and Dr. G that I would be. But I was amazingly calm. I even managed to sleep a bit. Bryan and Mel sacked out in the multi-purpose room which was next door.

Karen popped in a few times, telling us what was going on. There were several delays on the Minnesota end, so the time for pre-op kept getting pushed back. Fr. Mark came up, heard my confession and prayed with us. I slept some more. Finally, at 6:45, transport and Karen came to take me and my parents down to pre-op. I said good-bye to Mel and Bryan and down we went.

I'd been in pre-op before, and I wasn't the only one; there was a little boy, dressed in the yellow flannels appropriate for his age, watching TV. I was blind by this point, since my glasses were gone, but it was OK. We didn't talk much. I had, while waiting at home, written out instructions for a funeral and letters to almost everyone I knew, just in case. I told my parents where they were. When facing a long surgery, it seemed like a good idea, and you never know. I've always been a pragmatic sort.

At 7:00, Karen came in and I was taken away...and I don't remember another thing until I woke up in the CICU two or three days later.

Waiting..and waiting...and waiting some more...

OK, quick housekeeping note: the modem on my Mac was fried during a thunderstorm, so I'm sending it off to Apple to be fixed. Blogging will, consequently, be light on both my sites, if not totally non-existent. So I haven't forgotten about you all, it's just I don't have a computer. :)

Anyway, back to the story. So shortly after the insurance brouhaha was resolved, and we returned from Pittsburgh, I was officially "listed" on the UNOS list. I 'debuted' (hah hah) at #1 on the AB positive lung list, so if any came my way that I could use, I was the first up. But, me being me, that wasn't going to be easy. For one, I was AB+. That's a pretty rare blood type. Second, I'm a "small animal" (thanks Piglet) so we needed small adult lungs.

Once you're listed, your life revolves around the phone. Karen had everyone's cell, home and work phone numbers (even my brother and sister). When the phone rings you get kind of jumpy. We knew that most transplant calls came at night/evening, but technically it could come anytime. I went to bed with my cell phone--I'm not even kidding. Once I was cantoring at Mass when I saw Dad get up and scurry to the vestibule to answer his phone. Well I just about had a heart attack on the altar. It turned out to be nothing, but I told my dad not to do that ever again unless it was the call. And we knew when that would be cause Karen would call us, and we had her number programmed in every phone, too.

To top off all this fun waiting, it was also budget time at work, which is the busiest time in the whole 2-year GA (it's coming up again next year...oh, the joy). My boss (the Chief of Staff) and my immediate boss (Maggie, the Communications Director) both knew about my situation (OK, the whole Senate did, because I had to ask people to donate extra leave time so I'd be covered) and they were, consequently, also in tune to my cell phone. Once it rang during session and when I left to answer it, Maggie'sface mirrored my own. It was kind of funny, having so many people waiting on my phone to ring. Teri (the Chief) was hoping that I'd make it until post-budget, and that I did.

By this point, Dr. M had "suggested" that I be on supplemental oxygen at night "if I needed it." This is what I loved about Dr. M; while she could lay down the law (and did) when she had to, she also made things seem more like "suggestions" than commands. While I don't know if the oxygen did me any good, we still did it.

On June 2, the day after we passed the budget out of the Senate (and some of the staffers were at work until 2 a.m. writing the release), I went into the hospital for a few weeks. My body was just worn out at this point, and all those "opportunistic" infections were having a field day. The other side to all this was the only drugs that were even somewhat effective were also, slowly, eroding my hearing, which kind of annoyed me, because I'm a singer. I'm in Communications. I need to talk and hear other people talking. But at this point, it was a choice between surviving and hearing. I chose surviving. We could deal with the ears later.

I think I was in the hospital about two weeks, until I went home on IV therapy (of course!!!) and the oxygen, even though it was per need only. Dr. Rusakow, the attending for June, did a stat study on me the night before I was discharged, where you wear an O2 probe all night and the machine mesasures your oxygen saturation at different intervals. The test came back OK, and right before I left he looked at the monitor and saw it was registered 97%. "I don't know anyone who's on the list for a transplant and has 97% sats without oxygen," he said.

"Yeah, but I'm weird."

So I went home with the fun drugs (that we actaully had to mix and constitute at home, because it was so unstable you couldn't make it ahead of time...that was fun) and the oxygen compressor thing, which ended up in my bedroom and raised the room temperature about 10-15 degrees. This would've been great in, say, January, but was not so great in June, especially when it was 75 degrees at night anyway. The tiny electric fan I had didn't help much.

So there was nothing to do but wait. I was started to get a wee bit anxious--what if I didn't get them? What if I became one of the 18 people who dies everyday waiting? I saw Dr. A every week and he kept saying that we'd find them. I trusted him, but I still didn't know. Work was getting ridiculous. Even though I went every day (why, or how, I did that, I still don't know) but I only worked until 3:00 because I had to go home and get drugs. There were some days I just could not get there, and Maggie was good about that, but those days didn't happen too often. Most of the time I was just trying to stay awake. I couldn't walk from one end of our office to the other without feeling like my heart was going to beat out of my chest. It was rough sledding. Each day that I woke up and the phone hadn't rung was horrible. If I could have willed the phone to ring, trust me, I would have. So would the 90,000+ poeple on the list.

June turned into July, and eventually my biggest pasttime became sleeping. I would spend entire Saturdays camped out on the couch, just sleeping like a cat. I hated doing that, but it didn't seem like much else was going to happen. Fourth of July was horrible--hot and muggy. My friends wanted to walk the 1/2 mile or so to downtown Pickerington to watch the parade, but I couldn't a) walk it and b) sit in the sun for 2 hours. So I drove home, feeling frustrated because my body was totally prohibiting me from doing anything at all.

Even shopping, one of my all-time favorite things, was tough. Easton, an outdoor shopping center in Columbus, is one of my favorite places to go, period, because it has great shops, food, and a theater and movie complex. it's a great place. But I couldn't do it without my dad dropping my mom and me off at one store, picking us up when we were done, and then driving us to the next one. It was very exhausting. One Sunday night, July 10, we went to three different stores, had dinner at the Irish pub (mmmm), and I bought a new bag for work. We left around 6, my body totally exhausted.

Around 8:00 I was perched on the couch, slowly taking my evening pills so as not to disrupt my stomach, and was thinking of ways to get out of work the next day. OK, so most people do that, but I was trying to think of something better than "I just got run over by a truck."

Then the phone rang.

Tuesday, July 18, 2006

Last vacay

So that Memorial Day my family and I headed for Pittsburgh to celebrate my grandpa's 80th birthday at my Aunt Patty's, as well as take the annual (mostly) family pilgrimage to Kennywood (favorite theme park ever!). True confession: I probably shouldn't have gone on the trip. I wasn't feeling great, but I knew this would probably be my last chance to see everyone before the surgery, so I thought I better get it in now. And I didn't want to screw this up for my parents, since it was grandpa's birthday and everyone else (except Aunt Mary's family, who was in London/Rome/Tuscany/Greece) would be there.
The party was awesome--I got to see all my cousins, including Diane who had just graduated from ND, and Ryan, who I always loved seeing. :) The Kennywood day was also awesome, and I managed to keep up with everyone pretty well. But I could not believe the number of people smoking.....ewewww. It was just gross. But I did take Ryan on his first coaster rides; Jack rabbit, racer, extertminator, and told him to hold on tight on the Jack Rabbit since I didn't want him flying out on the double dip and then Aunt Patty would kill me. :) But he did very well. My cousin Carrie and Uncle Rich even did the sky diving/bungie jump thing they have at amusement parks, which cracked me up. You would never get me up there. So a good day for all of us, and a nice trip.
When we got back, I was officially "listed" and then we began the wait...

Pics are from Pa's birthday party: me and Diane, me and Ryan, and grandma and pa eating cake in Aunt Patty's kitchen after the party.

So to back track

OK, so you know we've hit the one year, but anyway. To continue the story...

I met Dr. Astor for the first time in September of 2004, after I had started my statehouse internship. He was from Colorado by way of Boston and D.C., where he did his residency (or med school, whatever). I was so glad that Children's was finally getting a lung transplant program. A few months later I also met Karen, who I liked tremendously. She used to work at Lifeline of Ohio on the other side of donation--working with the families and getting organs to recipients. She's from Canada and has her nursing degree, and has the most adorable husband and puppies. :) In fact, she got married three months after my transplant.
When I first met Dr. A, he agreed that I didn't seem quite ready for a transplant yet, but it was coming. I think after seeing me at Christmas with my pancreatitis, and then again the following March, after I'd begun working for Senator Cates, that he joined Dr. M in saying that I had to get listed ASAP. So at the end of March, after my hospitalization, I began the work-up at Children's, which was a lot of stuff you just don't think about. I'd actually done a bit of it before that, such as:

--having my sinuses drained, which I'd never had done, and is very important since all sorts of bacteria can hang out there ane cause trouble later
--visiting an OB/GYN to make sure I was medically sound in that department
--having my dentist do whatever she needed to do to my teeth because dental hygenie is very important pre- and post-transplant (even more so than for the general population).
--A VQ scan, to see how well your lungs distribute certain gases

In March, I had:
--Complete PFTs
--blood work
--an ECHO and an EKG to make sure my heart was OK
--a bone scan
--CT scan
--ultrasounds of my pancreas and abdominal areas
--6 Minute Walk test with PT
--social evaluation with Laurie, the Children's tx social worker

So that was a fun few days. After all the data was collected, a profile of me was compiled for UNOS and we spent the better parts of April and May arguing with my insurance company about the need to transplant me at Children's. Finally, they said OK--since I was going to be the first (or one of the first), some haraunging was involved. But no matter. I was officially listed at the end of May, and then immediately put on 'hold', since I was going to Pittsburgh for my grandpa's 80th birthday party.

Tuesday, July 11, 2006


Yes, friends, today is the ONE YEAR anniversary of my double lung tx. I know I am getting ahead of the story, but I just had to write something today. I cannot believe it's been a year! Thanks to all my friends, including the Dulmages (who are awesome!) who have remembered today. And Chicago to celebrate this weekend!! Woohoo!

Saturday, July 01, 2006

Becoming gainfully employed

Around the beginning of August, I was starting to get kind of anxious about my job prospects. I had sent out my resume and writing to samples to a few companies in D.C., hoping to get hired, and had interviewed for an internship position with the state legislature, but had been told I was put on the 'alternate' list. While I was enjoying my campaign work, it was becoming increasingly evident that I need to, um, get a job. A real one. With money.

Fortunately, I got a call in the beginning of August from the internship program, saying that they had an opening and would I like to come work for them? I really didn't need to think too hard about that one, said yes, and began work as an intern in the Ohio Senate August 16, 2004. It was a paid internship (I made good money) and I got to work with three Senate offices, as well as write the internal memos for the GOP staff for the Finance and Ways and Means and Economic Development committees.

This was a fun job, as I enjoyes using my degrees and working close to home. The people were (are) fun, even though it was quiet as a tomb around there because it was a campaign year and everyone was home for the summer, campaigning. I was managing to stay fairly healthy, even though I did have two hospitalizations for lovely pancreatitis, one in October and one in December. But that can happen to anyone, right? So I didn't 'let the cat out of the bag' just yet. No one technically had to know. :)

November was good to us--we retained our majority in both the Ohio legislature and Congress, so all was well. I also accepted a job working for Sen. Cates of West Chester as his adminstrative asssitant when he became the Senator for the Fourth District in January. So I had money and health insurance of my own! Woohoo!