Natasha and John in 2006

Natasha and John in 2006

Hi. I’m John.

I created Blast Magazine in 2006, and I launched the predecessor to this website with some of the amazingly strong women who write for Blast earlier this year. I’m not a woman. I’m a man. I don’t have a whole lotta business writing on this site, even though I own it.

The “My Story” section of the site is my only major contribution to the site. As an Italian, I grew up around strong women who had a million stories to tell. I believe that people transcend “blogs” and “articles” and “websites” when they are writing about something that defines them. Ashley is doing that with her heart surgery and “premarital divorce” articles. Emily started the section off by essentially turning the word “cripple” into “sexy,” while still making you cry. And we have a dozen or so other life-altering stories in the queue that I think will come to define this website.

So what am I doing here, now?

I’ve edited all the My Story pieces so far. None have been easy, but casually asking my friend Natasha Kirker if she was interested in sharing her battle with Cystic Fibrosis got a lot more real for me when she emailed me the article and about two dozen photos the next afternoon. And then I read it.

Because now I’m editing a story about someone I love. That’s such a funny and often misunderstood word. Let me step back a moment.

Natasha and I were born on the same day, a few hours apart, at the same hospital, Yale New Haven. We were both in the Greek system at Northeastern University. But we didn’t know each other growing up. We never dated. We weren’t even really close friends for our first few years at school. But we developed a sort of unspoken “Birthday Twin” bond over the years. Greeting cards start flying whenever anything happens in each other’s lives. I send her massively oversized gummy bears and packs of candy to help fatten her up, especially after she dropped down to 65 lbs last year, before her most recent surgery. She was the first person to send me a card when I got engaged last month. She even beat out my grandmother in that department. That’s what I mean by “love.”
Natasha is one of my favorite people in the world. She inspires me and she picks me up when I have a bad day at work or don’t feel like dragging my ass up in the morning. It’s not just because of what she’s been through — she’s been through two double lung transplants and the feeling that she wasn’t getting any air every time she breathed and the knowledge that if new lungs didn’t come soon, she would slowly and painfully die over time. Oh and both her parents died recently. You’re going to read about all that in her own words on Monday.

But no, what inspires me so much at Natasha is that she’s ALWAYS FUCKING SMILING. She’s the happiest woman I know. She changes the attitude in a room when she walks in. You’re going to see photos of her with tubes sticking out of her chest in the intensive care unit, and she’s got an ear-to-ear grin on. I get pissed off when the email system is slow at work. I get pissed off when I strike out in bar league softball.

Oh and by the way, she has an unhealthy obsession with Michael Jackson.

So there I was, editing her story, asking her editor-type questions about this paragraph and that picture. I kept asking questions, and soon enough I was just asking her questions that I was curious about that had no bearing on the story. We decided to turn it into an interview, which will preview her My Story entry.

I kept the transcription pretty raw and unedited, so you can see where it starts to turn into an interview.

John: Was your father ever in the picture in your life? Who took you to doctor’s appointments and stuff after your mom passed?

Natasha: He was not really that involved, but he did come (lived in FL) when i had my first transplant and was there when i got out of surgery. When i started to get really sick, he did call to check on me quite often. He passed away in 2009.

After my mom passed, her various three best friends sort of rotated taking me.

John: How many false alarms did you have for lungs #2?

I had five false alarms for lungs 2! I only had one false alarm for lungs 1!

John So, what is your prognosis today?

Natasha: They have the toughest time with lungs because they are the only organ constantly exposed to the outside environment. They only give you stats up to 5 years, which is 50 percent of people are still living after year 5. I think recently they have gotten to year 10 which might be 30% of people are still alive. But i know a handful of people that are living 20 years with their lungs.. everyone eventually gets chronic rejection it’s just when.

John: So, in 20 years you might need third lungs … is what i’m hearing you say. What if they cure CF?

Natasha: Yes this is true. Actually my transplanted lungs don’t have CF, so a cure for CF wouldn’t change my situation.

John: Stop me if I’m asking too many questions. I typically only like to ask you about jewelry and food.

Natasha: No, ask away.

John: you still “have” CF?

Natasha: Technically yes. But not my lungs. CF effects other things, just not as much as the lungs.

John: Are there new technologies on the horizon? Stem cell lungs/lab grown lungs?

Natasha: They are trying to grow organs in labs, not lungs yet, but a heart. If they could figure out how to cure chronic rejection, then my lungs would last forever, and they are working on that everyday. They tell me even today if i had chronic rejection i would be in a much better place as far as treatment to stall decline than I was 5 years ago.

John: Are you actively involved in research advocacy? How much of a part of your life is this?

Natasha: If they ask me for samples of things I always agree. They often will take lung tissue samples for research and that sort of thing. That is really the only way I am involved.

There are a lot of patients that do a lot of advocacy and I leave that up to those people : )

John: So you’re not an “activist?”

Natasha: Nope. If I was going to advocate for anything it would probably be organ donation.

John: So, how concerned are you with the length of your life? Because I think about that constantly — and I don’t have anything to put that into personal perspective Frankly, I’ve had it way too easy.

It’s in the back of my mind most of the time, but I try not to let it run my every day life.

Especially because I have had transplant lungs fail on me once, so I think I probably think about it more now than I did with my first lungs.

John: Do you mind if I turn this into a little interview?

Natasha: Sure!

John: I have an idea for something to preview your story

Natasha: OK, awesome!

John: At what point in your life did you become aware of what CF meant, and what it meant for you?

Natasha: Oh that is a great question, I just wrote about that in my memoir. When I was around 10 or 11, I was at a routine checkup with a lung doctor (I was aware there was something wrong with me from all my doctor visits, but I didn’t really get it) and I starting hemorrhaging blood from my lungs all over while I was in his office, cups and cups of blood. I was life-flighted to Yale and spent a week in the hospital. After that experience I knew my life was different and began to understand what CF was.

John: What was going through your mind?

Natasha: I for sure thought I was going to die, and then I thought well this could happen again at any point, but my CF doctor assured me it was a rare occurrence and I would be fine.

John: But you’re 10. You don’t believe that.

Natasha: Well I think that is the great part about being 10, you brush things off so much easier, if that happened to me today I would be anxious about it all the time.
I think mortality, for anyone, gets more and more nerve wracking as you age.

John: So today?

Natasha: So today I try to take each day as it comes. I try to experience more, do more, be kind to everyone, and hopefully these lungs will last me 20 years.

It took my second lungs to make me realize you only get one shot at life.

John: How are you breathing today?

Natasha: My second lungs don’t have the function that my first lungs did (100%) and that has a lot to do with cutting the same muscles, nerves, organs, etc for a second time, so they sit around 70%. I won’t be running any marathons, but I can do mostly anything I want. Better to be alive with almost normal function than not alive.

John: Are you getting to enjoy food?

Natasha: Yes of course, it has been a pleasure gaining 45 lbs back since my surgery!

John: Thatagirl!

Let me ask you this. How do you approach dating?

Natasha: Well to be honest I haven’t been in a relationship with anyone that didn’t already know my circumstances. Either they knew me firsthand, or knew me through a friend, so they already sort of always know. I’m not sure what I would do if I had to introduce this to someone entirely new to me.

It’s interesting but I have never had it scare someone away, people are better at stepping up to the plate than you might think.

John: So are you playing the field, enjoying the attention, or looking for true love?

Natasha: Hmm… I guess playing the field. It’s a big burden placing this life on someone else

John: What about work/career?

Natasha: That’s tough. Most lung transplant patients don’t work in the traditional scene Because being this type of patient is a full time job. I have ambitions to write and try to do things where I can make my own hours, like the jewelry. Work is also tough in the scenes that it really screws up insurance matters for someone like me.

John: Yeah — you make your own jewelry on Etsy and you’re working on a book finally. How’s the book coming along? How are you approaching it?

Natasha: I’ve really been writing it for the past ten years as things have been happening to me. Then once my mom died I just couldn’t write about it so I stopped. It was too hard. Then after my second transplant I finally was able to put pen to paper again. It’s not a memoir of disease. It’s hopefully something that everyone can relate to in some way. Everyone has their ups and downs and everyone has something they have to survive. I hope it can give anyone a small piece of hope.

John: That is awesome, Natasha.

Natasha: (smiles) Anymore questions?

John: I think that’s enough for now. This will be up later today — your My Story goes up Monday. Did you get the design/edits?

Natasha: Yes I did. I can’t wait for you to post it! I’m thrilled you asked me to contribute thanks so much!

About The Author

John Guilfoil is the editor-in-chief of Blast: Boston's Online Magazine and the Blast Magazine Network. He can be reached at [email protected]. Tweet @johnguilfoil.

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