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Health-LiveIamA IamA chronically ill young adult (19 years old) with TOF w/ pulmonary atresia, (yes, what Jimmy Kimmel's baby Billy has,) and several other disabilities! I've been in and out of the hospital since birth and had nine major surgeries,

May 18th 2017 by Pinkie_Fry • 16 Questions • 376 Points

My short bio: including 3 open heart. Ask me anything!

EDIT: deleted the original thread due to mistakes I made, sorry! I figured people might be curious about what growing up being constantly hospitalized would be like. Especially after completing my first year of college, I realized this isn't really an experience people understand or are are comfortable with, so I figured I might as well shine a light on it! Note: I don't know a ton about my diseases from a medical perspective, more just what it feels like and what it is like spending so much of my childhood in a hospital.

My Proof: a picture of me showing off my heart surgery scar, with one of my canes: http://68.media.tumblr.com/fe077bb8f418f8637f8133a4f5e3be68/tumblr_oq4gx7uBGm1s5ytqno1_500.jpg A picture of me two years ago, age 17, recovering from my most recent open heart, (probably about a week after surgery):http://68.media.tumblr.com/bb0900ec129dd1885d980ffe9919ebbd/tumblr_nlr5fwTLsP1s5ytqno1_250.jpg picture of me with a nebulizer treatment as a toddler:http://68.media.tumblr.com/8107d7b43b5af979d4c33002f7e3a907/tumblr_nmzff9afl51s5ytqno1_250.jpg

Q:

So you have a bucket list? What have you checked off so far? What's next?

A:

Okay so I've met a few celebrities I've always wanted to meet-- a member of team Starkid and the Nostalgia Critic crew! Heck, Doug even complemented me on my cosplay and asked for MY picture and I helped convince Tamara to do the Tamara's Never Seen on Heathers. (I'm from Chicago.) I've done average stuff like going to Disney and Universal, (never got a Make-A-Wish though,) and I've gone on three amazing trips-- London, Kenya and Alaska, and I'm going to Italy this summer with my family. I also got into School of the Art Institute of Chicago, and I'm learning how to animate! (I took one course this semester and am taking one fall of 2017, and I have a pitch book for a cartoon getting started.) I'd like to go to France some day, maybe, and I'd love to meet Mat Groening, Alex Hirsh and Lauren Faust. Also on a more mundane note I keep meaning to watch Star Trek TOG and TNG. I also hope to be a comic book artist or have my own animated show one day. I know it's a bit of a boring bucket list but I've had enough near-death experiences that I'm not looking to skydive or anything anytime soon. Also I got a dog this year which has been a childhood dream forever-- she's a rescue named Dodger and I love her very much

One More Edit: I can't believe I forgot to mention this but when I met the Channel Awesome Crew, I also had a really in depth discussion with Jim about prop building and it was honestly incredible. I did stage crew and had made an Audrey II model for my cosplay and he complemented it and we talked about technique, it was really great.


Q:

That's a great bucket list! I love that a few things on your list are the beginning a big adventure like becoming a comic book artist.

Definitely watch star trek TNG. It's been a great source for writing inspiration for me, and it's just a good show.

Matt Groening and Lauren Faust are on my list of people to meet, as well. And John Lasseter.

Dodger is a cool name. Congrats on the pup :)

A:

Oooh, John Lasseter would be fun too! And thanks! I'm on my way, already wrote an 11 page fully colored comic as my art school final!

I'm definitely starting with TNG-- I'm a big MLP fan and Discord is my favorite character, so it kinda seemed like the obvious choice. But I also feel like I gotta pay my respects and watch TOS.

And thank you! Named her after the character from Oliver-- another bucket list thing I forgot to mention was I got to play the Artful Dodger when my school did Oliver Twist, which is one of my favorite characters of all time.


Q:

Do you become close to your nursing staff/doctors? Are they different or the same group?

A:

It sort of depends! Some of the doctors I've had I've had since I was a few weeks old-- my pediatrician is a family friend and had on occasion gotten me and my brother presents for the holidays. I'll be really sad when he retires and/or when I outgrow his care.

Otherwise... meh. The thing is, while I've had my cardiologist, pulmonologist and GI doctor since, again, I was a few months old, they're more like distant relatives? I see them every six months, they ask me how school is doing, and give me a sticker or lollipop. (And take some blood which most relatives probably don't do, but hey, I don't know what your family traditions are.)

Also you get more doctors as you age and develop more issues. I have kidney issues now, possibly because of meds I've takes, (yay...) so I don't know my urologist or nephrologist well becaue I've only had them three years.

You develop more relationships with nurses because they're with you more constantly, but my parents know them better than I do-- I was so young, or on morphine, or just feeling awful, and I'm also bad with names and faces, so I kind of... know that they exist and recognize them by face but I don't know them super well? I've also had awkward times where my mom and I have run into someone on the street and she's like "I was your nurse when you were two and you had that one surgery do you remember me???" and I'm like "... I was two years old and unconscious so no???" (I don't say that, of course, I just kinda go, "Sorry, no, but thanks for taking care of me!" but that's how it feels.)

Also, it's not always doctors and nurses. My parents and I befriended this guy who would clean the bedsheets at my local hospital when I was a little kid-- I barely remembered him but I had pneumonia a year and a half ago and we went back to the hospital, and he knew who I was immediately, and he and my mom started talking like they'd only seen each other yesterday. And once I realized who he was, I grinned and said hi too. I also got really close to some of the receptionists at my pediatrician's office-- one retired recently and she left a voicemail on our phone saying how much she would miss us and how much we meant to her because she'd known us nineteen years, and honestly I'm going to miss her a lot too.

But they are separate groups, and as a whole, I know nurses better than doctors just because they physically care for you more.

EDIT: Voicemail story-- I was in college when this happened and I got some stuff mixed up since I never heard the voicemail, sorry. The receptionist didn't actually leave anything, but she told the other receptionists that she'd miss us and we meant a lot to her, and they told as that. My mom asked for her number so she could leave a voicemail for HER. Sorry, guys, didn't mean to mix that up. I'm still going to miss her though.


Q:

So, have you found different hospitals have different cultures? Also, have you had to go to different cities/regions for specific treatments?

A:

Well, I always feel a bit out of place in hospitals that aren't my own. I'm followed by Lurie Children's in Chicago and have been since birth-- I was born at another hospital but was quickly sent there for better care, and there I stayed, for the most part. (I think I may have bene at like Northwestern, etc. as a baby, but I'm not completely sure.) Since it's a pediatric hospital, it was generally very child friendly, and the people there were generally very good.

Religious hospitals have a certain culture that I'm not used to, because I come from a secular and mixed religious family, but I don't really mind as long as everyone is nice, I always just feel a bit out of place.

I've never had to been flown out or had to change states for procedures, luckily, but I have had ambulance drives from like my pediatrician's office to the hospital (there was one exciting time where I stopped breathing as a baby in the middle of the waiting room and they couldn't help me at the current doctor,) or from one hospital to another, when I was first born, or when an ambulance sent me to a hospital that wasn't Lurie's.


Q:

Good to know. Please ignore the troll towards the bottom talking about taxes. He is a twat.

As to what you said, I asked because some hospitals do have weird cultures, especially private versus public ones. I glad that you were served well.

A:

Yeah, I went on their profile and they seem to just like being inflammatory to be inflammatory, I don't think they're even worth downvoting.

And some definitely do, I've been very lucky in that regard to get a good hospital and, for the most part, good care. (Although, admittedly I do have some fun stories to tell about some iffy care, but when you've been in and out of the hospital almost twenty years, you get a few horror stories.) For the most part though, I got technicians, nurses and doctors that were pretty great, and a hospital that was... well, hospitable.


Q:

DILV w/pulmonary atresia here. Nice to meet a member of the zipper club. Do you have a back scar as well (obtained from infant surgery)?

A:

Yes! I have two actually, one on each shoulder blade. It almost looks like where wings could be!

Also I have a zipper club t-shirt, always nice to meet another member!


Q:

Its funny, I googled zipper club because I hadn't heard of it. On urban dictionary these days they show an activity graph and it was high for may. I wonder if this is why.

A:

Well, I'd be flattered if it was! It may also be people looking up TOF after hearing about Jimmy Kimmel's baby and coming across the term from that, and not knowing what it is. But I gotta say it'd make me happy if it was because of this AMA.


Q:

Does it make you angry when people complain about their little problems that are petty compared to yours?

A:

yes and no. on one hand it made me a lot more receptive to certain people who seem to have "small" problems-- on days i don't have my cane or my scar isn't showing, i seem able-bodied, so i kinda learned to never doubt anyone saying they were disabled or in pain because i understood that a lot of people who are don't SEEM like they are. at the same time i do roll my eyes a bit when people miss weeks of school for a cold when i would have to go with walking pneumonias and kidney stones. i get that everyone's pain tolerance is different, but i always kinda went "wow i wish that i was healthy enough that i could use sick days for stuff like that."


Q:

Favorite band/musical act?

What did/do you usually do to pass the time during treatment or recovery?

Smiles

A:

I like musicals, honestly! I listened to Les Mis, Oliver!, Joseph and the Amazing Technicolor Dreamcoat, Little Shop of Horrors, etc. a lot as a kid, and when I got older I also listened to stuff like Fun Home, Book of Mormon, Avenue Q, etc.

When I was a kid I read a lot. A series of Unfortunate Events, Harry Potter and the Calvin and Hobbes strips were some of my faves. I also watched a lot of Powerpuff girls, Spongebob and Disney movies. (I was weirdly sheltered in certain ways so unfortunately I never watched Ed Edd n' Eddy, Johnny Bravo, Ren and STimpy, or Samurai Jack. Did watch Fosters Home, Rugrats and Dexter's Lab though, and I loved Tom and Jerry.) There was this binder of movies in the hospital that you could choose from-- there were lots of options, but I always picked the Aristocats and Snoopy Come Home, they were sort of my "hospital movies." I also drew a lot when my IV wasn't on my hand-- it was too difficult to draw when it was. My hospital also had this thing called "body parts bingo" where you would get a card with like body parts instead of numbers, and you would tune in live and call a number if you won, then you got to choose a prize from a cart! It was fun, even if looking back it seems bizarre and a bit morbid. I went to a kids hospital so when I wasn't quarantined, I would also go to the common play area.

When I got older the stuff I read and watched changed but the actual activities didn't really. My hospital got rid of the binder and had a shitty on demand system with like 30 movies, which seems like a lot but when you're there for a week... really isn't. (Especially when they had options like fucking "Alpa and Omega.") My new "hospital movies" became Wreck It Ralph and Little Shop of Horrors, and I now watch MLP, Gravity Falls, Futurama, Bob's Burgers, Phineas and Ferb and sometimes Rick and Morty or Simpsons. (... Still kind of a kid at heart.) I watched Parks and Rec in its entirety while recovering from open heart, and that's also when I got into Bob's Burgers. Also like... Dora and daytime TV when I'm high on painkillers and too tired to change the channel, which is boring but at least its background noise, y'know? And a LOT of youtube, Nostalgia Critic being my favorite. Also I write, mostly fanfic admittedly but also some creative fiction, and I read fanfic. I've also read the novel "Flatland: A Romance of Many Dimensions" a LOT and I still love Calvin and Hobbes, but admittedly I don't feel up to reading much anymore when I feel too shitty.

Mostly though I try and sleep.

Smiles to you, too!


Q:

HAMILTON. Listen to Hamilton. yesterday. Do it yesterday.

A:

Buddy, I was in a high school theater troupe when Hamilton first came out, so we all heard it a lot! Thanks for the suggestion!


Q:

Guns and ships, dear Theodosia and Yorktown are life, also have you seen Heather thats one of m favs too

A:

HEATHERS IS MY FAVE! The amount of time I have gotten "Candy Store" stuck in my head is honestly ridiculous, if I had the lung capacity and acting chops, then MacNamara would be a dream role. (Veronica would be fun too but I love a good ol' cry song, and "Lifeboat" sure is that.)


Q:

Are you Jimmy Kimmels daughter?

A:

Ha, nah, but it was honestly an emotional experience having him talk about TOF w/pulmonary atresia, just because I'd never heard it talked about on TV before.


Q:

How can you afford the treatment?

What's your insurance through (if you have it)?

What is your ongoing out of pocket expense?

A:

Honestly, luck. I have a side of the family that is wealthy and help us pay, and we're comfortable ourselves. I know I'm extremely lucky in that regard.

I have Blue Cross Blue Shield, and I'm not sure of my out of pocket expense. My mom complains about copay sometimes but I don't hear about money too much. I admit, I'm a bit worried about for when I'm no longer covered by my parent's healthcare.


Q:

So you're trying to pass yourself off as a woman with a heart? Not buying it.

A:

well, if it's any consolation, mine sure as fuck doesn't work right.


Q:

Well played..... Good luck to ya.

A:

thanks, same to you!


Q:

so how much tax payer money has been spent on you at this point?

A:

... Do you want me to send you a check or something? There's no way of knowing, honestly, my family is lucky enough that we've been able to pay off my bills and I have good insurance. I'm sure none of your money specifically has ever gone to me, so you can rest easy knowing that you've never helped save my life. Hope that takes a load off your chest, pal.

Sorry, I know this seems rude, but this is really confrontational and really rubbed me the wrong way.