Hey there! Title pretty much says it all - I really have nothing better to do and the wifi here is dogshit so this is at least something for be to pass the time.

Background: I had liver failure in October of last year, less than a week after turning fifteen. Doctors are still unsure of the root cause of that, but after getting to the brink of bedding a liver transplant and turning around right as I was offered a liver, I made it out ok. Or so I thought. In subsequent weekly checkups my platelet count started to drop, and shortly after that my neutrophil and red blood cell counts. After my parents did some consulting of Facebook groups we were pointed in the direction of Children's Wisconsin. I had been at Texas Children's for the whole liver ordeal as we've lived there for the last ~5 years, so we rented an rv (the owners were kind enough to reimburse us when he filled them in!) and proceeded to drive across the country to Milwaukee.

My transplant was originally scheduled for April (I think? Been here way too fucking long) but it was right around when covid started becoming an issue here. They ended up having to freeze the bone marrow for transport, and when it was thawed it was determined there wasn't enough marrow and my transplant was delayed. I've been living at the Ronald McDonald house across the street ever since, which is a blessing to have but at the same time I'm sure you can picture a teenager cooped up with both parents in a two room "suite." Two days ago I was finally admitted for conditioning and I'm now on my second day of chemo. The transplant is scheduled for seven days from now, so here's hoping nothing else goes wrong.

Proof (let me know if more is needed, I don't have the MyChart login but I can try to get it from my parents)

Aplastic anemia info

It would mean a lot to me if you sign up to the bone marrow registry. All it takes is a cheek swab and you could save someone's life someday.

I'll probably answer questions here for a few hours at least, and maybe back tomorrow if that's a thing that's allowed. Not like I have anything else to do!

Comments: 47 • Responses: 15  • Date: 

DistroyerOfWorlds7 karma

Hope the transplant is a success! Two questions,

1: being there for 5+ years, what things did you wish were easily accessible and non restricted?

2: favorite video game(s), if not, what's a go to hobby that you enjoy?

Sending love here from Connecticut!

enwash4 karma

1: my bad, I think I phrased that badly. We've lived in Houston the last five years, this whole thing is more recent.

2: as for video games, it jumps around. I saved up to get a vr headset with web design commissions a free years back and I've had a ton of fun with that - Pavlov, essentially vr csgo, is a hell of a fun time. Also the obligatory classics - Minecraft, Portal, and I've just started the half life franchise which was super cheap for the steam sale. I enjoy programming in my spare time, I've gotten to the point where I can make reasonable amount of money off of web design so that's super cool.

Thanks for the questions!

ThePrettyBeebz2 karma

How did “Make a Wish” get in contact with you? Is that something the hospital did or that you have to apply for? I’ve never known how that all worked :)

Is this transplant supposed to completely “fix” you? Is this the beginning or an end of procedures?

Hanging out with your parents at that age can be interesting lol I remember being that age :) Sounds like you appreciate them though which is awesome! Cherish these times (as much as you can at least) because once you’re an adult it will definitely be something you hold onto dearly.

Do you and your parents get along? Do they like play games and hangout with you or?

enwash2 karma

Iirc the make a wish thing was set up by the social workers at the hospital. They arranged for them to call us and get everything set up. Ideally, the transplant will solve everything yeah. I'll be severely inventory compromised for the next year at least - the chemo is killing off my immune system so I'll essentially get someone else's. For the most part I get along with my parents - there is the occasional argument but hey, I figure that's expected at this age lol

ThePrettyBeebz2 karma

If you aren’t disagreeing at all then you aren’t thinking for yourself is how I feel :) My kids are all over 18 now but growing up I always encouraged them to tell me (respectfully) if they didn’t agree or if they wanted to understand why I asked them to do something etc Critical thinking is extremely important!

Well I wish you all the luck! Sounds like you’ve got a strong support system and extremely knowledgeable people around you to help make you whole. Sending all the good juju :)

enwash2 karma

Oh believe me, there's plenty of disagreement lol

carltheawesome2 karma

What would you most like to tell us that no one ever asks about?

enwash14 karma

Not sure if it really answers the question but I've always been a little overweight. I've been swimming for a while and I really am in decent shape, but not with aplastic anemia I can't walk more than fine minutes without running out of breath - everyone just assumes I'm a fat kid and that's why.

I guess it really comes down to people judge you by their first impressions, and it's not a great feeling

ThatsDopee071 karma

Hello! Sorry for your situation, if these questions make you uncomfortable there is no need to answer:

1: Has anyone every brought you down because of your anemia?

2: Do you go to school? If so, does anything special occur in it?

3: Have you met others with aplastic anemia in person?

I wish you the best of luck with your situation and I hope you get better very soon

enwash1 karma

No problem.

Not really? Sometimes people assume I'm just a fat ass and that's why I get tired from walking alone or so much as changing clothes, but for the most part people are understanding.

I've been homeschooled since second grade. When I say that people immediately seem to picture a troubled/autistic kid, which gets a bit annoying but hey what can I say. I've always had more time to spend on my interests-music, programming, etc-without, and this night sound cliche, being part of the flock of sheep in a high school.

I haven't met anyone in person with my condition. I've sent a few emails back and forth with successful transplant patients from this hospital but that's about it-i never find it overly helpful to "talk about it".

Hope I answered your questions, thanks for your interest!

swvagirl1 karma

Do they think the liver failure had anything to do with the subsequent aplastic anemia diagnosis?

enwash3 karma

Yeah, forgot to cover this. It's actually a known thing called hepatitis-associated aplastic anemia. Hepatitis doesn't just mean the diseases - hepatitis is liver inflammation, and hepatitis a, b, and c, can all cause it. None if those were the cause though.

Essentially when my body fought the liver inflammation it decided it was bored and needed something else to fight. Rip marrow.

themightydouche11 karma

Do you feel like you have a good support system through this? What do you do to cope? (Ps. You are very brave and amazing)

enwash3 karma

I mostly do programming and graphic design to pass the time. The team here at the hospital is amazing as well; they have a bunch of Legos and shit to pass the time which had certainly helped and a communal "teen room" on the floor with an Xbox, PS4 and some board games etc. Thanks for the questions :)

Bf4Sniper40X1 karma

are you afraid to loose your life?

enwash4 karma

This is the one thing that really scares me. It seems so unreal that it's actually a possibility, but at the same time I know it is - I guess I'm just in denial, but every once in a while I think "what if?" I'd be leaving a lot behind, and it's not a nice thought.

greenstraw1 karma

Did you try any ATG treatments? My brother had aplastic anemia when he was 22 and did a round with the rabbit protein that didn’t work and then did a round with the horse protein that did work. He wasn’t able to find a match for a bone marrow transplant so that wasn’t an option.

That was almost ten years ago and he is doing very well now. He is married and has a beautiful son. Best of luck to you with your transplant. So glad you were able to find a match!

enwash2 karma

Thanks!

The doctor's opinion was the horse/rabbit shit wouldn't work in my case. At Texas Children's they were doing some study and I would have been randomized to either atg or transplant upfront which is why we came to Wisconsin - for an upfront transplant.

DugpaDan1 karma

How are you feeling today? And what's your favorite movie and/or TV series? I hope you're doing okay!

enwash2 karma

Today was.. Not great. Second dose of chemo, yesterday's went fine but today I set the threshold for a ten on my personal pain scale. Out of nowhere went from sitting at my laptop to the worst pain of my life in the form of a headache. Morphine, blood pressure medication and IV Tylenol did the drink, thank God.

Ironically, my favorite show of all time is probably House MD. It's a bit formulaic but I found the show to still be really good, and the overarching story line was fantastic. Parks and rec probably come in close second.

Thanks for your questions!

DugpaDan1 karma

Sorry to hear you experienced that much pain today. It sounds awful. I hope you can find ways to distract from the pain. House is a great choice for favorite series. It also has a really good series finale.

I wish you luck. You seem to have a good mindset. Good luck with your programming!

Here's one last question you can choose to answer or not: If you created a VR game, what would it be about?

enwash1 karma

I've never really thought about that one. I've tried making a normal game a few times but always give up - I guess the time is now huh?

kaolincash0 karma

Do you believe in skeletons?

enwash2 karma

🤔

HepatitisShmepatitis0 karma

Since you’re hanging out in a hospital, do you see large amounts of people dying of covid or hooked up to respirators clinging to life?

enwash2 karma

I do not. I'm in the children's hospital here and there's a separate floor for cancer and blood disease patients which is where I am - I've heard most of the hospital is empty except this floor and a few cases of other immune compromised kids in isolation for covid.

Sweatyjunglebridge0 karma

Do you watch 90 day Fiancee?

enwash2 karma

Never heard of it, why?

Sweatyjunglebridge1 karma

Theres a woman on it who had aplastic aneima, I just wondered if it was as... debilitating as she made it seem. Its a reality show so she comes across as an awful person. Its tough to tell if she just uses it as an excuse to be a jerk.

enwash3 karma

Well I haven't seen it but I can try to testify. It's easy to use it as an excuse; with low hemoglobin (red blood) I feel like shit, constantly tired, grumpy, and get out of breath from so much as taking a shower. But then again, I think it depends on the actual patient - it's a conscious choice whether to be a dick, and I try not to when I can.

Might have to check out the show now lol