Tag Archives: transplants

May 15 2012

adjusting

Now that Ashley has begun the first of her two summer internships, there are a few things I’ve had to adjust to. The most notable of these is that, most of the time, I’m alone in a house with ten friggin’ cats! Seriously? If I don’t show up to work one day look for my body parts in the litter box.

Another thing is that she’s gone most evenings. When the person you speak to more than anyone else on the planet is suddenly not around as much, you notice. Like the other day. I had to watch our neighbors go through a break-up-and-move-out right in the middle of our shared driveway, and I had to watch this all by myself. As I sat there, peeking through the blinds in the bathroom, all I could think was how much more fun it would have been if Ashley’d been there peeking through the blinds with me. I imagine it felt something like when James Cameron watches his old home movies in regular old 2D: the experience was good, sure, but lacking something indefinable.

Everything is quiet all the time. That’s another thing. Though I’m sure my family will remember back when my brother and I used to make like we were Def Leppard jamming in our bedroom, it turns out I just don’t tend to make a whole lot of noise. I’m not the kind of person to leave the TV on. I might play some tunes, but I do it through headphones because my headphones sound better. Otherwise, reading and typing on the computer’s about as noisy as it gets. I would be shushing monks and librarians, is what I’m saying.

But without a doubt the oddest thing is being on the receiving end of text messages from someone working in the field of organ transplantation. Yesterday, for example, was this:

Going to surgery at 3!!

Now, I can imagine that there are some people excited about going to surgery. People finally undergoing gender-reconstructive surgery, for example, are probably excited about it. Nervous, but excited. But you have to remember that when Ashley talks about going to surgery, she means standing by while doctors removing organs from deceased patients.

So to me her text reads like this:

Me and a bunch of people at work are going to stand in a room with a dead guy at 3!!

Few will argue the necessity of organ transplantation more ardently than I; yet, it’s a good thing that she wasn’t around to see my face when I read her message. To see the courage it took to text her back with an equal number of exclamation points.

Today we had the following exchange:

Me: Our flight is booked.
Ash: Nice. In OR now. Heart is about to come out.

See? It’s already weird as hell. All I can picture is that dude from Temple of Doom being like some team-building-exercise leader.

“And so now I’m just going to let myself fall back and you’ll all catch me. It’s about trust, people.”

To continue:

Me: You’re texting me from the OR?
Ash: Yep.
Me: That seems odd…is that odd?
Ash: No. I’m not sterile so I’m not gloved and we have our phones to keep in contact with the office.

Well okay sure. When you put it like this it makes sense. So I figured since texting is okay in the office, why not sexting? Maybe it’s not the best idea, but few things work better to get me used to something than being just plain silly about it.

Me: Oh. Well then. What’re ya wearin’?
Ash: Scrubs lol.
Me: Oooh. Yeah baby. Papa like.

See? Getting into it a little bit. Trying to work my mojo just a touch. But then this:

Ash: Lungs are about to come out.

And we’re done.

Turns out I can’t have a conversation, salacious or otherwise, while I know that organs are being removed in the relatively near vicinity of my fellow conversationist. I never knew that about myself, so I guess there’s just one more thing to get use to.

Apr 26 2012

pittsburgh

Ashley and I are in Pittsburgh today for a check-up with her transplant team. You can see here how well she’s doing:

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You can follow the link above to the Spirometry page to learn how to decode this, or you can simply trust me when I tell you that she’s doing very, very well.

And her doctor has promised that during our next visit, in August, we’ll all sit down to talk about having a baby. It’s a pretty big risk, with all kinds of things that could possibly go wrong. But Ashley and I have decided to try going down that path until something firmly stands in our way.

Like all things worth doing, the thought is both exciting and terrifying. But for today, she is happy and healthy, and that is more than either or us has a right to hope for.

Jan 23 2012

gifts

This evening Ashley and I were invited to a small gathering at a local university. A group of students had brought in someone to talk to them about organ donation, and she invited Ashley to tell her story.

I never tire of watching Ashley tell others about her transplant. She will tell her story to anyone who will listen. And she doesn’t tell it from a dramatic standpoint; it’s very matter-of-fact and informational. She’s not there to manipulate people into becoming organ-donors. She merely wants the facts of her story and her life to give people a real, live example of the gift that is organ donation.

Emphasis on the live.

But tonight was very different. Before Ashley talked, the family of a donor told their story. The mother cried a couple of times, but her message – that her son got the chance to be a hero, to literally save five lives – came through clearly. And it was a little difficult, to listen to her tell what is a lovely and sad story about her young son’s death, only to sit there next to someone who was there because of someone else’s similarly tragic death. Dylan’s mom even tearfully pointed out that the five people he saved would get to celebrate the birthdays and weddings that they now will never get to enjoy. And so to think about how we’re getting married in a few months was…unfair. To them.

I’ve spent so much time with Ashley, listening to her repeatedly talk about organ-donation as such a great thing – and it is – that somehow until tonight it never really sank in that someone had to die. I mean, academically, I was totally aware of that. But somewhere out there, a young girl’s parents sometimes cry because Ashley is going to have the wedding their daughter will never get.

And I don’t even know how to begin to thank them. Or really to even comes to terms with that.

It’s hard to know that the life you enjoy comes at the expense of someone else’s sorrow. I’m sure Ashley has been more than aware of that for nearly 4.5 years now. But I never really understood what that meant until tonight.

Aug 22 2011

three new things

Even after all the time Ashley and I have spent together, yesterday something new happened. Actually three somethings new.

Thing the first: She woke up at 8AM on a weekend…and stayed awake.

This is tantamount to Lindsay Lohan turning down free alcohol – it just never happens. Usually Saturday and Sunday mornings are my time with the cats, my time to read or do research, my time to watch movies she won’t like and play video games because I can count on her to sleep until probably noon or so. When she sat up in bed I figured she needed to use the restroom. But she stayed in bed and even more surprisingly her eyes stayed open and she voiced her intent to remain part of the conscious world. I was about as surprised as if I’d woken up with an opposable toe or a prehensile penis. Then I learned why she was up.

Thing the second: She woke up early…to read.

Ashley’s not much of a reader. Not that she doesn’t like books, but they have a habit of putting her to sleep. Almost every time I’ve seen her sit down to read for class I’ve seen her asleep 30 minutes later.(1) So it was very strange that as I did my normal Sunday routine – cats, laundry – she was awake and reading in bed. It’s like those dreams in which you go to work and everything’s totally normal…except maybe all the furniture has fur or all the people are green.

Thing the third: Ashley in professional-type attire

This was maybe more jolting than when she sat up at 8AM. Ashley is very much a blue-jeans kind of gal. Even her nicer clothes are what I’d call relatively simple.(2) So when we went shopping for more professional clothes, it was something I’d never seen her in before. And she looked stunning, of course. But it was odd, like seeing your boss in a ballcap or something.

And the reason for all of the strangeness?

Today Ashley starts graduate school for a Master of Science in Biomedical Science, Human Donation Science.

In layman’s terms, she’s looking to become a transplant coordinator and/or an organ-procurement specialist.

Every time she’s ever talked about a potential career her interest has always been to help people go through what she’s gone through. At first she wanted to do art therapy, to help children in hospitals deal with being in hospitals. But she’s now settled upon this, and I think it’s perfect for her. She’s not sure which aspect of organ-procurement she wants to be part of, but part of the program is to learn that sort of thing. She wants to help others give and receive the gift of life just as she did.

Wish her luck in your spare thoughts. And cheer her on. She’s gonna be great.

  1. Though of course reading for class is totally different and way more narcotizing than regular reading.
  2. Of course, what I know about women’s clothes could fill a dwarf’s thimble, so…
Jul 28 2011

Transplant check-up day

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A few months ago I live-blogged Ashley’s and my trip to the University of Pittsburgh Medical Center.  We do this once every four months and while it is sort of like a short vacation, it’s also a short vacation during which we could potentially receive really bad news.

Not that either of us expects that. Ashley’s doing just about as well as any post-transplant cystic-fibrosis patient and her doctors could hope for.

This blog is as much about Ashley,  CF, and transplant-issues as it is about me and my rambling concerns re: Batman. So today I’ll be talking about our trip, hospitals, doctors, prognoses and Pittsburgh.

Right now we’re on our way,  having awoken earlier than we would have for a regular workday.  So so much for the vacation feeling…

More later.

10:30a. Made it to Pittsburgh. Up next: blood-work and x-rays.

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12:00p. Two encounters over lunch.

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The Pittsburgh Pirates’ Parrot was wandering around the cafeteria at lunchtime. It’s just cool how much this city loves its sports teams.

After Pirate Parrot left, Ashley saw her pre-transplant coordinator and ran over to talk to him right away. He recognized her and was excited to see her and catch up. He congratulated us on our engagement and then had to get back to work. But Ashley was really happy to see him.

Next up: the appointment.

1:15p. Pulmonary Function Test

PFT results are pretty much the metric for how well Ashley’s doing. They measure several different aspects of lung-function which you can read about on my spirometry page. The results are expressed as both a quantity (such liters) and a percentage (based upon the expected quantity for her height, weight and age).

Today’s results:

FVC: 4.58 liters. 116%.
FEV1: 3.15 liters. 134%. (!!!!)
FEV1/FVC: 92%
FEF 25%-75%: 7.99 liters/second. 221%
PEF: 14.63 liters. 220%

In short, these results are freaking AMAZING!

2 – 3:00p.

The appointment went as well as possible. There’s some concern that the PFTs are high due to a mechanical/calibration error. But as far as Ashley’s health everything seems: stellar.

What gets me is how astoundingly lucky we are. Everyday I interact with CFers and post-transplant peeps who continue to struggle with medication and medical issues. Who have even after transplant a rather tough time.

But for Ashley, and by extension me and her family, this hasn’t really been too tough after her transplant. Not that we don’t all put a far amount of work into keeping her healthy. But over all I think we’re incredibly fortunate.

Mar 29 2011

the chair

Beginning at 10:30 this evening,(1) Ashley and I will be spending an hour in a chair.

This isn’t just any chair. This chair has a point: to never be empty.

The reason this chair is never to be empty is that each person who sits in it represents someone who has or can benefit from the wonder that is organ transplantation.

So, for an hour this evening, Ashley and I will represent two people whose lives have been enriched by this medical miracle as part of Life Connection of Ohio’s 24-hour sit-in. The event will happen at one of the local news stations and given that we’ll be there during the 11PM news, there’s a chance that we’ll end up on tv.(2)

I’ll use this event today to remind you all that organ donation saves lives. But more so, it enriches lives. If you haven’t signed up to be an organ donor, please consider doing so. I’ve written already about why being an organ donor is awesome, and if that doesn’t convince you can check out the information on the Donate Life website. There are a LOT of misconceptions w/r/t organ donation, so please don’t write it off without researching the accuracy of your particular objection, if you have one.

I’m sure I’ll be tweeting from the chair later tonight, so feel free to tune in!

  1. UPDATE: So it turns out I’ve got my weeks all turned around and this whole chair this is supposed to happen next Tuesday. I’m not really sure how I’ve managed to get this one wrong, but, well, there you have it. My bad.
  2. The temptation to do something ridiculous or to maybe make-out on live tv is something I’m hoping to get over sometime pre-2230h.