I have loved answering your questions, but I think it's time to call it quits for the AMA. Thank you for all the support! My short bio: including 3 open heart. Ask me anything!: 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! I also never thought enough people would know enough about TOF for it to be a conversation I would get to have, but due to it being a bit more in the public eye, I made this AMA. 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

Comments: 345 • Responses: 80  • Date: 

UmerakenIdeut269 karma

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)?

Pinkie_Fry309 karma

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!

awayonepineisland104 karma

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.

Pinkie_Fry113 karma

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.

Wasseratem6 karma

May I see the back scars? :)

Pinkie_Fry101 karma

I don't have any pictures and I'm not quite comfortable showing that much of my body, sorry. I can't find any pictures like my scars online, but if I do, I'll post them.

Wasseratem75 karma

I can fully understand that, thank you anyway :)

Pinkie_Fry50 karma

No problem!

AstronomicalArtist1851 karma

'Zipper club' I love that I've never heard of that before, I guess I haven't talked to anyone else who has ever has open heart surgery before though. I have one from when I was a baby, stretches from the middle of my back to just under my armpit. I used to hate it as a kid but now I think it's badass.

Pinkie_Fry39 karma

I didn't see this, sorry! And yeah, I think a lot of kids go from hating their scars to loving them.

KeeperofAmmut78 karma

I have the one back scar. ToF for me also. 3 open hearts. I'm seen at Boston Childrens. Best of luck to youz all.

Pinkie_Fry8 karma

Thanks, best of luck to you too!

Vaadwaur193 karma

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

Pinkie_Fry206 karma

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.

Vaadwaur84 karma

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.

Pinkie_Fry111 karma

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.

yfip19 karma

when you say followed by, do you mean you still go there when you need to go to a hospital? i go to the hospital at least twice a year and i figured after you turn 18 you're basically banned from children's hospitals.

also, not a question, but i had that same mask as a kid! i actually got it again in high school for a bit because they were all out of adult sizes.

Pinkie_Fry46 karma

When you have a lot of serious chronic health conditions they will sometimes make exceptions. They're going to start to wean me off of Lurie's pretty soon, and I'm going to need to fin a new team of doctors, but my health history is so complex that they're going to help me a lot. You're not banned but it is encouraged that you start looking somewhere else. Ambulances won't take you to a pediatric hospital anymore there, so I've had to be transferred from an adult hospital where they don't know me to the kiddy one where they do.

And the dragon asks are great! I had a fish one too but it was always too stiff.

the-silent-man175 karma

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

Pinkie_Fry349 karma

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. Meeting Malcom, Rob and Barney was great too, and I got a personal picture with Malcom! (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.

the-silent-man75 karma

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 :)

Pinkie_Fry37 karma

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.

helios2109 karma

I tried to watch TOS I really did, but it's so dated now that it's difficult to enjoy, really enjoyed reading all the comments and replies in this thread though, you might not think it but you're quite an inspirational individual. Good job!

Pinkie_Fry10 karma

Thank you! And I've tried watched TOS too, had some trouble but I really wanna give it another shot

iloveandfeareveryone11 karma

You're so sweet and wholesome and kind. Just always love yourself, even when it's hard to.

Pinkie_Fry12 karma

Aw, thank you so much! I'll definitely try!

4gotmydamnpw11 karma

DS9 is my favourite, have you watched that? Also Babylon 5 is awesome.

Ty for taking questions, you are an inspiration.

Pinkie_Fry12 karma

You're more than welcome for taking questions! And no, I haven't seen either of them but I know that DS9 is something I GOTTA see, it keeps being recommended to me!

The_Blog6 karma

Oh you met the Channel Awesome guys. That's ... well awesome. ^^
Have been a fan of their stuff for a while. Also nice Gravity Falls Cap!

Pinkie_Fry2 karma

Thank you! I'm watching the Suicide Squad review of theirs later today, I'm pretty excited.

Luigerie3 karma

Yoo I am from Naples (Italy), where are you going to go?

Pinkie_Fry8 karma

Rome and Venice, we're on a cruise so I don't think that we'll get to go to Naples, but I'd love to go sometime.

Luigerie3 karma

You have to visit it!

Pinkie_Fry5 karma

I definitely hope to some day!

Allnamestaken373282789 karma

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

Pinkie_Fry195 karma

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.

DirtySyko62 karma

I also have ToF, however I've only had the one corrective surgery when I was little. I had my open heart surgery when I was 3 back in the late 80s, I'm 31 now. Currently I'm in need of a pulmonary valve replacement, but it scares the hell out of me. I can't imagine what you've had to deal with. You're a bigger badass than I am, that's for sure. I don't really have a question, just wanted to give you props for being awesome from a fellow person living with ToF.

Well, found out I have to ask a question or my post gets removed, lol. So what would you rather fight, 100 duck sized horses with ToF or 1 horse sized duck with ToF?

Pinkie_Fry40 karma

Aw, thanks! You might wanna look into a cardiac cath for your valve replacement-- if your valve or stent has calcified a lot, they can't do it from my understanding, but otherwise you may be able to have a less invasive surgery to repair/replace the valve. It's scary as shit either way, but I know the cath is less painful than OHS.

... Hm. The duck, maybe. I don't have the endurance to fight 100 anything.

GodMustBeAFK46 karma

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

Pinkie_Fry139 karma

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."

Flight71488 karma

at the same time i do roll my eyes a bit when people miss weeks of school for a cold ...

They do this to halt the spread of the contagion, not for respite.

Pinkie_Fry71 karma

Honestly, fair enough, I guess I sounded dismissive when I said that. I appreciate people staying home, since I would probably be worse off for the ware if they didn't. I still wish I could use my sick days for more minor things, but colds probably were not the best example.

bloodynervous40 karma

Hey there, my son has the same condition TOF with PA and severe pulmonary stenosis. He's 6 months old and had his first open heart 5 days after birth. I didn't realise before we went to hospital how many non-heart complications other heart babies have - I never thought I'd be sat in a childrens heart ward, with my very poorly child, feeling outright lucky. I'm sorry to hear that you've had to go through all this - nobody deserves it.

I'm interested as to how you and your parents handled it growing up? We are still adjusting to the realities of our new life and I'm curious as to when you started to understand what was going on? When did your parents have the "So, you would've died without medical intervention" talk?

How do you feel about your scars? I so hope I can bring up my son feeling positive about them, but I remember how tough it was being a teen.

Thank you for posting :) P.S, check my history if you want a small (I didn't post much for obvious reasons) snapshot into what it's like as a parent! This is my throwaway, so it's all there.

Pinkie_Fry79 karma

Hey! First off, I;m glad to hear that your son seems to be doing fairly well!

So yes, if he doesn't have other defects, his life could be pretty normal! I'm guessing paleness, fatigue and poor circulation may be issues he could run into, along with weird things like possibly being able to see his heartbeat from under his shirt, but everyone is different. I know people with TOF who have gone onto run marathons and stuff-- the important thing is that you don't like force him to do so. Something people did to me that was well meaning but frustrating was point out people like Shawm White, who also had heart defects and grew up to be athletes, etc., which they would do specifically when I was feeling bad, or saying "I am disabled and I cannot do this." It's well meaning but ends up being invalidating-- like yes, they can do this, but I cannot.

Your kid is going to understand more than you think, so be upfront. It can be genuinely traumatizing to be going through tests and things and not understand why-- remember informed consent doesn't just apply to the parent, even if they're the ones signing the forms. I understood I was sick basically from day one-- I knew other kids didn't have cardiologists and physical therapy. My parents were good about explaining some things, and not so great at explaining others. You don't have to give a full medical explanation, but even like "This test is gonna be done for your heart," and a simple explanation about what in the heart needs fixing will do wonders. The kid needs to know what's goin on.

Also little options. Simple stuff, like "Okay blood tests suck, but we're gonna let you pick the band-aid after, do you want Snoopy or Bugs Bunny?" Yeah the effect wears off when you're older, and you can't be condescending about it, but being young and chronically ill means you don't get a lot of choice, so even the little ones help.

Your son is gonna be a smart kid, I'm sure of it, and he'll be less scared and resentful if everything is explained to him. Encouragement is good, but too much "You can do it!" feels invalidating. Chronically ill people have a lot of barriers to get through to convince people that we CAN'T do something, a lot of the time.

As for my scars... I went through phases as a kid. Sometimes I thought they were cool, other times they had to be covered up at all costs. The fact that you're aware that your child might be self conscious about them is already a good sign. Currently I'm alright with them, but I know that may not always be the case-- especially when the anniversary of my surgery comes up. I wish I could help with how to make your kid feel better about his in the future, but I'm still figuring it out myself.

IDK if you're on FaceBook, but there are TOF groups there, mainly for the parents. I will warn you it can be a bit of an echo chamber, and I would recommend you listen to the members with TOF a little more than the families of people, just because veen the most well meaning allies can mess up, but I also understand that being a parent doing this time must be absolutely terrifying, and there is that support system to lean on, and, from what I can tell, it's a good one. I know my mom belongs to a few. I hope this helps a little!

Razare35 karma

Congrats on finishing your freshman year of college!! What are you studying and what is your favorite memory from your first year?

Pinkie_Fry37 karma

Thanks! I'm at School of the Art Institute of Chicago. I'm going for a BFA with an emphasis in writing, technically, but I've been taking comic book and animation classes, since that's what I'd really like to do in the future. An animated television show would be ideal, but I also really love the medium of comics. Realistically I know I'll probably get a retail job or some other way of actually supporting myself, but hey, I can dream.

Razare12 karma

Hey, just keep at it and you'll surprise yourself haha. Create a network with professors who know people in industry and go from there. Never settle :)

Pinkie_Fry13 karma

Yeah, I'm definitely going to try and do that, thank you! My professors seem to like me, which is good, and I'm sure that I can ask them for help to get a leg up in the industry.

JungProfessional30 karma

Has it been hard to date or have relationships?

Pinkie_Fry105 karma

Kind of. I'm also neurodivergent and acted "weird," which didn't help. I was the kinda kid that got asked out a lot as a dare, which wasn't exactly great for my self esteem. Y'know, when that gaggle of boys would go "Oooh, my friend likes you!" and you could see them snickering in the background. And I was gullible, which again didn't help. (Luckily they never found out I liked girls, too, I can only imagine how much worse the teasing would have gotten.) I had crushes on a lot of my friends throughout school but not a lot of them were reciprocated. I've dated twice, and have a boyfriend currently, who is also chronically ill. We've only ever dated online, and we're still figuring out a way to meet IRL, but we've known each other nearly three years and we'll have been together ten months this month, I think. (He's better at keeping these dates than I am tbh.) It's kinda nice to be dating someone with similar experiences, if we aren't up for talking or just feel bad we can say "low spoon day" to each other and know that we should really just talk about cartoons today, and that one of us might fall asleep in the middle of talking.

6beep6bum630 karma

"Low spoon day"... hm, that idea is really cute, I might be stealing it!

Pinkie_Fry67 karma

Just realized I didn't explain what spoons are! https://en.wikipedia.org/wiki/Spoon_theory

Feel free to use it if it applies to you, of course!

DemyeliNate19 karma

I have Multiple Sclerosis and use that all the time. Have to budget my energy due to extreme pain and fatigue. Cool to see other illnesses use it too. I've only ever seen it in MS literature.

Pinkie_Fry16 karma

Huh, that's interesting! I feel like the first time I ever heard it it was used for describing what being mentally ill felt like.

BEANandCHEE28 karma

Do you have weird diet restrictions?

Pinkie_Fry51 karma

Sort of. I have a lot of stomach problems so I'm not supposed to eat a lot of rich food at once, but I admittedly cheat. Also due to my IBS I'm not supposed to eat popcorn, but fuck that because popcorn is delicious. IBS is a balancing act anyway because you never who what's gonna trigger a flare up.

A lot of the stuff is more self imposed. I had a feeding tube for a good portion of my early childhood, so I'm picky about certain tastes and textures just because, (and admittedly this is my own theory,) I don't think my tastebuds ever developed properly since I couldn't always be fed much as a kid. I also have sensory issues due to other shit that isn't physical.

I eat a lot of plain pasta, (garlic, butter, salt, parmesan cheese and some seasoning,) burgers, lots of red meat and junk food, which isn't very healthy, but it's all I like. I have a lot of trouble gaining and keeping weight, so for a while I was forcefed Gatorade throughout fourth grade (drinking one cup of water meant I had to then chug a cup of Gatorade) and to this day just thinking about the stuff makes me feel sick. Also a lot of those like protein shakes with the teddy bears on them.

Nowadays I'm trying to be more adult and expand my palette! It's still hard because certain textures can make me physically gag, (also I have acid reflux so... y'know, fun,) but I'm really trying to broaden my horizons.

BEANandCHEE17 karma

I used to work with a woman with ibs. She had the same lunch every day at work, white bread balogna sandwich, chips and Mountain Dew. She also didn't eat a big variety of things, stuck to the same few and no vegetables other than potato. I bet switching it up more would help with reflux and also you might end up finding something you really like that you didn't expect. I dunno tho, just a guess. Good luck!

Pinkie_Fry15 karma

Yeah, that's part of the reason I'm trying to. It probably would help in the long run and kind of make my stomach stronger, plus pasta is great but... it gets boring every day. And I have found a few things I really like that have expanded my palette, and I'm trying to go a bit further. And thanks!

UnicornFarts11119 karma

Thank you for sharing your story. I just want to let you know that you are not alone on the gagging on certain textures. It has gotten a little better as I have gotten older, but there are still certain things that i can't eat. I'm a big fan of pasta myself, and often eat it the way you described. Good luck on the broadening your horizons, small steps are the key!

Pinkie_Fry12 karma

Thanks, this helps a lot! And honestly even if it's plain, garlic pasta is a lifesaver.

ShadowAviation4 karma

Also feel like puking at certain textures - you're definitely not alone :) It only got bad when I got lung clots and couldn't stand meat for a year. I'd love to see a database of foods grouped under different textures, so I could avoid overly slimy things.

Edit: Also love that you're a fan of Gravity Falls. It's beautifully weird.

Pinkie_Fry6 karma

God, I love GF, it's one of my favorite cartoons. And yeah, slimy is bad, I can't stand canned anything... also mushy solids are gross as hell.

Elubious18 karma

While not as serious I've got some chronic health conditions as well that don't happen to be treatable. How do you keep hoping? Do you even keep hoping? How do you stay strong enough to keep trying to live life?

Pinkie_Fry51 karma

I'll be honest. It's hard. I'm suicidal and have been since I was around eight-- it's rarely active, but more just, "Oh, I guess if something happens I could always die." or just... as a little kid, I never thought I'd live this long, so it's weird now that I have.

I guess it depends on what you mean by "hoping." I don't hope to get "better," although that is in part because I never knew what "better was." I know that it can be a lot different for people who used to be abled to suddenly become not, and I wish I had more advice for that experience, but I haven't lived it.

It's stupid and cliche, but the little things help. I've honestly been kept alive by little things like "Jesus Fuck I'm miserable and I hate myself and I'm in pain, but if I die now then I won't ever get to eat cotton candy ice cream again." or "Yeah I know I wanna die but next week they're playing Weirdmageddon on Disney XD and I really wanna see that again."

Stupid things help. Distractions help. Having coping mechanisms help. So I guess it just kinda depends on what you mean by "hope."

Elubious10 karma

I'm probably going to die of a heart attack due to some family stuff and my inability to exercise. I've had three or four major surgeries but none of them have been related to my condition. I don't know why I'm still alive or why I care about how others feel. It's not that I want to die, more of that living just hurts too much.

Pinkie_Fry31 karma

Yeah, I get the last part especially. I don't know how much advice I can really give, and I'm genuinely sorry for that. And I also know that cheery "You're alive for a reason, don't give up!" can be really sucky and invalidating. You don't wanna die, you don't wanna live, so just think about this maybe-- what do you still want to do? You don't have to make long term plans, just little things. I really, really wish I were more equipped to help you with this and I'm genuinely sorry I'm not, I think I understand what you're feeling but I'm not sure how to relieve any of the pain.

noneofthisshitbro15 karma

Hey! Med student here. What are the aspects of the entire healthcare experience, do you think, doctors and hospitals must improve upon or competely redesign?

Pinkie_Fry27 karma

That's a tricky one. Make sure patients always know what's going on, be aware that a drugged up patient may not remember what you've told them and may need to be reminded and told again. Also communicate-- if your patient has a team of doctors, make sure you know every single one, and what they say about the person. Even if you don't understand pulmonology, listen to the doctor and hear what they say the patient has. Make sure to tell the whole team if a new symptom or diagnoses pops up-- they may understand what's happening before you do.

I'll probably think of others later but my mind it going a bit blank admittedly.

noneofthisshitbro7 karma

Thank you so much for your time! That made a lot of sense:) And good luck:)

Pinkie_Fry6 karma

You're welcome! And thank you!

Yolkley14 karma

Where did you get that hat?

Pinkie_Fry15 karma

Amazon, it was $4.99!

MillionDollarCheese13 karma

How can you afford the treatment?

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

What is your ongoing out of pocket expense?

Pinkie_Fry35 karma

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.

NoncreativeScrub12 karma

As a healthcare professional that works with kids who have TOF (and other congential defects), what are some things you wish more of your caregivers knew about, or could have addressed? Thankfully I work with some amazing Child Life, but they're not always around, and can't answer every question a kid asks for me.

Pinkie_Fry11 karma

I wish I could give a more in depth response but I'm falling asleep, I would look at what I answered below, I talked to a med student and a mother of a TOFer. Wish I could help more, but I'm really out of spoons.

illgetup_andflyaway10 karma

Favorite band/musical act?

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

Smiles

Pinkie_Fry30 karma

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!

jshark1010 karma

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

Pinkie_Fry17 karma

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!

kingbuddha993 karma

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

Pinkie_Fry9 karma

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.)

grubmeyer10 karma

I'm probably late and this is probably a dumb ass question, but when they did your heart surgery, did they cut through the same scar? Call me ignorant, but i thought that wasn't supposed to happen.

Btw, keep kicking ass! And thank you for taking the time for us random internet peoples.

Pinkie_Fry20 karma

Hey, no such thing as a dumb question, unless you're purposefully being an asshole to me. And you're not, so don't worry!

They actually did cut through the same scar, but not as far. So like 3/4 of my scar are this bright pink because it was opened two years ago, and the rest is this pale white because it's been allowed to heal almost untouched for about eighteen years. I'm honestly not sure what normal procedure is, I can just say that they did cut in the same place for me.

And thanks, can do! And tbh it's fun talking to people!

iwas99x9 karma

Which charity should Redditors donate to to help find cures and better treatments?

Pinkie_Fry6 karma

I wish I knew, but at the moment I cannot think of anything. I'll tell you if I do.

girliegirl807 karma

I think you are one cool ass guy! I'm in my 30s and I act like a cry baby when I have to even do blood work. My biggest fear is having to have surgery one day and you've been through several! Do you ever get freaked out for a procedure? I'm not so much afraid of the procedure itself but the aftermath. Healing, stitches, pain, etc.

Pinkie_Fry9 karma

Thanks! And yeah, I get freaked out a lot honestly-- I have pretty severe anxiety so I actually occasionally work myself into near crying fits. I usually watch cartoons to destress, listen to the same songs over and over, bring a fidget toy. And sometimes I still panic anyway, and it's scary and shitty.

The aftermath is the worst part in all honesty, I've given a little advice on how to deal with it but the short answer is it sucks and it will be painful, even with great coping methods. I wish the answer was more optimistic, but it is what it is.

cerenfion7 karma

Hi! Fellow Nostalgia Critic and Gravity Falls fan here. (Love the hat!)

I have a couple different questions for you:

  1. What was your favorite class that you took last year?
  2. What are your coping mechanisms of choice, especially on difficult days.

Thanks for taking the time to do an AMA, and keep kicking butt!

Pinkie_Fry7 karma

Thanks! 1.Hm. Okay so I thought History of Silver Age Comics was one of the most interesting classes, but I really loved the work I produced in my animation and research classes, so I guess it's a draw. 2.Cartoons, lots of cartoons. Yeah, it's kinda silly, but it helps me calm down when I'm really upset. Certain comfort items too, like favorite plush toys, or putty to squeeze, or rereading favorite books or stories. Silly stuff, but it helps to kinda ground you.

Noducksintheduckpond2 karma

Have you seen Avatar: The Last Airbender? :D

Pinkie_Fry7 karma

I've seen parts, I know it's one of those thins i need to see but my mom and brother watched it without me and I never caught back up.

maitre-lux6 karma

I actually just wanted to say how beautiful you are and that your smile really pierced my heart! I would probably have the strongest crush on you if I'd be able get to know you in person.. (and it wouldn't be as awkward as this comment + I am also 19 years old but sadly i don't even live on your continent) I have to ask a question so: Do you like superhero movies? (If yes what do you think of the guardians of the galaxy franchise?) Do you have spotify?

Pinkie_Fry9 karma

Aw, thank you, this is amazingly sweet!

I like some superhero movies, but they wren't my favorite genre. Admittedly my favorite superhero movie I've seen in a long time was the Lego Batman Movie. I liked the first Guardians of the Galaxy and I really wanna see Volume II! And I don't have a spotify, I tend to listen to stuff on youtube, or podcasts.

Sherpanauts6 karma

How do you handle the pain and fear?

I've got a major skull operation in a few months and the pain and fear are the two things i'm most worried about.

Pinkie_Fry10 karma

Lots of hydrocodone. It personally knocks me out because I'm so tiny, and then you just sleep through the pain. (Okay so painkillers help but I am kinda kidding, you don't wanna get addicted to the stuff. It's a fine balancing act, but if you listen to your doctor on this one, you should be okay.)

In all honesty, though, distract yourself. Fear during tests is scary, and I usually put on a movie, or play a gam on my phone.

And crying is okay. It sucks, and it can be embarrassing, but if it helps, it helps. They'll give you something to numb you if you really need it, in my experience. Some pain with any surgical procedure is so be expected, and unfortunately that's just sort of a fact of life. Heating pads and lots of pillows can be lifesavers.

Sherpanauts9 karma

Thank you so much for the tips! You're wonderful.

Pinkie_Fry8 karma

Of course, and thank you!

Farts_McGee6 karma

Hiya, do you have MAPCAS as well? How many times have you been cath'd?

Pinkie_Fry10 karma

As far as I know I don't have MAPCAS, but I'll be honest there are parts of my medical history that I do not know-- for example, I wore foot braces as a kid and tbh I'm still not exactly sure why.

As for cath, I've never had a cardiac cath, always open heart. If I have to have more heart surgeries though, they're going to look into cardiac caths, since the recovery time is so much better and it's less dangerous. (At least from my understanding.) I've had a regular catheter post surgery because... y'know, you can't get out of bed, and I've had a ureteroscopy before, so they used a cath for my stents. Always an unpleasant experience, tbh.

MjrMjr5 karma

Are you Jimmy Kimmels daughter?

Pinkie_Fry21 karma

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.

outlawblue15 karma

Hey I've had open heart surgery too. I had mine when I was 4, now I'm 23 and I think the scar is rad. Favorite video game?

Pinkie_Fry12 karma

The scar is pretty cool! I was really self conscious about it growing up but I've learned to love it.

Favorite video game... Lego Star Wars. I'm admittedly not much of a gamer, but I really like the lego games, Indiana Jones being me second fave. I liked Undertale, and I like the songs in Nuclear Throne (mostly Y.V's mansion rap tbh) but haven't gotten the chance to play yet even though it's on my steam, just haven't found the time. I', also not good at shooter games, I'm kind of more interested in the lore. Really wanna play Lisa and Lisa: the Joyful but again, haven't found the time and more interested in the lore. Played through a bit of Portal 2 and loved it but I didn't own it so I never finished. Also South Park: Stick of Truth was pretty fun, I wanna play the Fractured But Whole but I own a mac, so it's currently sitting on my steam uselessly.I also like Sims and Pocket Mortys. Pokemon Go was nice for a while but I can't walk for long so I ended up exhausting myself and causing flare-ups trying to play. I heard a new Futurma game is coming out (the trailer dropped today) and I'm psyched for that! EDIT: BENDY AND THE INK MACHINE I KNEW I WAS FORGETTING SOMETHING. I really love that game.

creeperslayerHD3 karma

OMG yes! Lego starwars is the best! Whick is your favourite? Mine is probably ep 1-3. And I remember I hired lego Indiana Jones for weekend and finished in a day. Loved it.

Pinkie_Fry6 karma

I had the episode 1-6 bundle as a kid! I think I remember liking the phantom menace levels a lot even if the movie was... well, the phantom menace

RaggedyDoctor15 karma

Hey I have TOF too! Just about to go for my next open heart surgery, keep fight the good fight! When were you first corrected ?

Pinkie_Fry2 karma

Thanks! You too, and best of luck to you! I had my first stent at like two days old and my first full repair (I think) at about eighteen months.

ClassicStyleSmokin3 karma

In what order were your diagnoses? Can you give us a time line? Do you think baby Billy will be in the same situation as you? Sorry for posing so many questions, but they all relate so it's not so bad. I hope everything works out for you!

Pinkie_Fry11 karma

Timeline is muddy, it was all diagnosed around the same time. I was born blue so they knew something was up immediately. TOF w/PA got diagnosed first, then I think esphogeal atresia and tracheoesophogeal fistula. Pulmonary issues and asthma came later, then kidney issues, then IBS? Again the timeline is difficult because I was so young and I don't have direct access to my health history. I can't really speak for Billy, because I don't really know if he has any other conditions. I really hope he has a smooth ride.

eutohkgtorsatoca3 karma

How much do you try to look at your best as pretty you are? Do you have to spend more time than an average lady? How much time does it take off your daily life to get on with it?

Pinkie_Fry20 karma

I don't wear makeup at all, I don't have the energy. I shower every day and pick out clothes I like but that's about the extent of it. Also I'm a virgin, and I'm okay with that at this point.

DAVasquez-3 karma

Does that qualify you for Make a Wish? If so, did you ask one?

Pinkie_Fry17 karma

I didn't qualify, no. It's more for kids where the disease is terminal-- my diseases were dangerous but not necessarily terminal, and nobody applied for me when I was eligible. I still got to go to Disney and Universal on my own time though, which was nice!

DAVasquez-5 karma

How is your particular life expectancy, according to professionals? How long, regardless, would you wish to stick around for?

Pinkie_Fry14 karma

Not sure, honestly. I think they expect a full life! I don't know for sure though. And at the moment I hope to stick around as long as I can.

TastyMonkey3 karma

Hey, I don't know much about your condition, but looks like you have gone through so much. How is the future looking? Will you be able to stay "farther away" from the hospital?

Also, you're really cute. Love the no makeup style, keep at it! :)

Pinkie_Fry2 karma

Future's looking okay! Id on't know if I wanna move away to be honest-- I live like twenty miles form downtown Chicago, which is kind of a great place to be. Moving is an option but it would be tricky to find a new tam of doctors, since they wouldn't be affiliated with my Chicago hospital-- that' part of the reason I never applied for CalArts. And thank you!

Updxted3 karma

Given that you were in the hospital a lot when you are growing up, what's a normal routine for you? Do you have to go to school during your stay? Do you get to play video games? or what TV series you watch?

Pinkie_Fry2 karma

I didn't have to go to school but I was sent homework and expected to do it-- I went to a public school my entire life. Hospital routines were kinda determined by if you had tests and procedures that day, or if they just wanted rest. Luckily I generally had most of my tests and procedures done in the ER, but not always. So I wouldn't be able to start lunch if I was about to have nebs, couldn't nap if they were gonna pound on my chest to clean my pneumonia, etc. I had a DS for a while but all I ever had on it was Frogger, Nintendogs and this one Clone Wars game with a water level with Asajj Ventris that drove me NUTS. I think there were gaming systems you could rent but I trie dit a few times an dhad a hard time since I had IVs. I watched a lot o f Powerpuff girls, and also a lot of like Dora and Backyardigans because they were on. I also watched a lot of movies form this binder they had in the hospital. "Snoopy Come Home" was a major fave.

jihiggs3 karma

if you were given the option, would you choose this life or having never been born?

Pinkie_Fry27 karma

I kinda like where I am right now, I think I'd stick around.

di5c0rd2 karma

Hi! Do you have any tips on working out for when the pain days are manageable? I only managed to walk a little over a mile yesterday and my body is in a lot of pain because of it. My body couldn't take more than merely a few push-ups and a few laps around the track..

Pinkie_Fry3 karma

... Teej you don't have to ask this question like we aren't dating. Anyway, total stranger, I don't really work out much other than walking Dodger, but I like to bike, it's easier for me than walking. And just rest a lot after, heating pads, etc., you know the drill. Push ups may not be the way to go, I can't ever do those. Start really slow, and we can also talk on Skype if need be.

iwas99x2 karma

Do you play videogames?

Pinkie_Fry4 karma

Sort of, but not often, I have a few games I like, which I've already talked about!

iwas99x2 karma

Do you often stay up late at night?

Pinkie_Fry5 karma

I have trouble sleeping, so yes. That being said, I am going to bed and after I answer the questions I've already gotten, this thread is closed.

SeegurkeK2 karma

All the zipper-club people coming out of the Reddit woodwork here Ü (me included)

I've got PA with VSD and recently had a heartcatheter done to prepare my heart to get a new pulmonary valve and the doc was surprised that I wanted to stay awake and watch the procedure, but sadly he didn't let me watch it live, but I got to see their video afterwards.

Did you ever manage to get to watch your own surgeries? If in video form, did you get any cool copies you can show us?

Pinkie_Fry2 karma

I haven't-- I can't watch surgery without panicking, even on like tv shows and movies, so while I'm happy that was a cool experience for you, it really wouldn't be one for me. I don't have any video that I know of, sorry.

It's nice to meet another zipper club member though!

icalleveryonefam2 karma

I LOVE YOUR DIPPER HAT! What other cartoons do you like? :>

Pinkie_Fry3 karma

MLP, Futurama, Simpsons, Bob's Burgers, Phineas and Ferb, Rick and Morty, and sometimes I'll be like "oh yeah need to catch up with Steven Universe" although I admit it's not exactly a priority of mine. I also wanna start up Adventure Time again and watch the Amazing World of Gumball, I heard those got really good. And I need to watch SVTFOE and finish up Wander Over Yonder.

irreverentgirl2 karma

Thank you for your AMA! My son was born with TOF... He's 26 and doing really well. I sent him the link so he can learn your perspective. From a parent's point of view, seeing your child suffer and not being able to help them... I can't describe it. Here's my question: do you dwell on the pain afterwards or is it something that you forget and move on from? (My son doesn't talk about it, but I often wonder what's going on in his head.) Also, do you think your TOF has changed any of the relationships that you have with friends? Thanks again!

Pinkie_Fry2 karma

The experience can be different for everyone-- he might have genuinely moved on and if he has, props to him! Some of us don't though and we can develop PTSD from the experience, which really sucks.

TOF and being in the hospital made it hard to make friends, I think. I don't ever remember friends visiting in the hospital-- first it was because they were too young, but then it was more they were too busy, I guess, which could get a bit lonely. I can't begrudge them though, it's an awful place to be. I think also interacting mainly with adults made it so it was harder to relate to kids, and we also didn't often have the same issues. I also needed and clung to fiction more than the average kid, and it meant conversations were hard, and honestly still are. It's sort of all I wanna talked about and I have hard times maintaining relationships through just talking about tv shows and books, although it's changed now from Harry Potter, the Simpsons and Star Wars to Gravity Falls and My Little Pony. (Think I might regressed there but w/e.)

It's also hard to say what was specifically my TOF, what was my neurodivergencies, what was my other chronic illnesses, and what was just being a naturally awkward person. I know I was a bit of a doormat, but that also might just be me, you know?

And I can't even imagine what it must be like to have to sit through your child being in the ohspital and not knowing how to help, I'm so sorry.

Lord_Maldron1 karma

Nice hat! You mentioned cosplay. Do you an album? I have been meaning to get into the hobbie but I don't know where to start on prop making

Pinkie_Fry6 karma

Never done an album, but I have cosplayed! I used to do "casual cosplays" with items from my closet, but my most intense ones were Fry from Futurama and Seymour from Little Shop of Horrors. (Also Harley Quinn but I bought the costume so I dunno if that counts.) I'm hoping to also do Pinkie Pie one day!

Prop making... well, start with what you have around the house. if you get creative, even junk can be some really cool shit.

iwas99x1 karma

How often are you on Reddit and what are your favorite subreddits?

Pinkie_Fry9 karma

... I used to be on a lot when I was 13 but this is my first ever post on reddit on almost seven years, so I'm not sure yet! I did tune in for the Bill Cipher AMA, though, even if I didn't ask any questions.

HumanLeftovers-10 karma

[deleted]

Pinkie_Fry4 karma

nope