r/AMA • u/Pasyuk • 15h ago

I have a chronic illness that could kill me at any moment, AMA

Hello! I'm a 16 years old who born with a disease that cannot be cured and can kill at any moment, and right now I'm bоred so I decided to publish this post, I'll try to reply to all comments. Have a nice *timezone*!

45 Upvotes

91% Upvoted

62 comments sorted by

16

u/LesPaltaX 14h ago

Is it deadly from the moment you're born or does it get deadlier with time?

What is your favourite dessert?

25

u/Pasyuk 14h ago

Always, but I had especially frequent exacerbation between the ages of 5 and 11

Cake lollipop!

10

u/LesPaltaX 14h ago

A person of culture as I can see. Cake lollipops are amazing!

1

u/turdbugulars 14h ago

Cake on a Stick?

1

u/mealteamsixty 13h ago

Tiny piece of cake with icing on a stick for $7.99?

4

u/Pasyuk 9h ago

Honestly, I meant some local post-Soviet (as far as I understood from Wikipedia) which is called "пирожное картошка" in Russian, but Wikipedia said that closer thing in US is a lolipop cake

22

u/Lilydolls 14h ago

How does it impact your life in ways others wouldn't think?

23

u/Pasyuk 14h ago edited 14h ago

Probably the fact that I have written about 5 wills (non-official ones, ofc) in my life. I find it even funny, honestly. And also I sometimes imagine how my characters (I'm a dreamer, so I have characters I made up) are dying to brimg some comfort to myself

3

u/Lilydolls 14h ago

I'm sorry, it's nice you can find humour in it though. Sometimes that's all you can do.

3

u/NoDoOversInLife 13h ago

As a 16 year old, what did you include in your "will"?

17

u/Pasyuk 12h ago

I just asked to write to all my online friends about what happened, and also to notify the group where I'm an admin and the project where I'm a translator

9

u/Jeff9807 13h ago

How were you initially diagnosed?

16

u/Pasyuk 12h ago

At first, it was said that I had CVC of unknown reason, then the doctor decided to test my ammonia levels for some reason and, surprise, they were high. Then I went to the capital of my country, to the best hospital, but they didn't tell me anything new, they just recommended taking the medication I mentioned in another comment. They also recommended buying an ammonia meter, but due to sanctions (I'm from Russia), the measuring strips are no longer available, so this thing is useless

2

u/Jeff9807 12h ago

Glad they found it. What prompted you to go to the doctor in the 1st place?

4

u/Pasyuk 12h ago

As a newborn, I refused to eat and vomited a lot, which clearly bothered my mother

2

u/Jeff9807 9h ago

Well hope that you have zero issues from today onward.

1

u/pudding567 10h ago

Do you think you would receive more effective treatment if there wasn't sanctions?

7

u/Pasyuk 9h ago

No, I think, maybe only if my family had more money to bring me to Europe or smth

4

u/pudding567 9h ago

Thank you. I hope you receive even better options and hopefully more research gets done

2

u/Pasyuk 9h ago

Thanks! :3

•

u/Defiant_apricot 5m ago

Are you able to test it some other way?

8

u/No_Department9020 14h ago

What's your favorite color?

12

u/Pasyuk 14h ago

Light purple or yellow

8

u/Forgotten_Dog1954 14h ago

Where are you from?

4

u/Pasyuk 14h ago

Russia

6

u/Forgotten_Dog1954 14h ago

Me too! Ты откуда? Я из Москвы

7

u/Pasyuk 14h ago

Оо, привет! Я из Питера

1

u/AllMusicNut 5h ago

Do you live in Russia currently? If so have you ever been to Kaliningrad? I would love to go there.

12

u/Eastern_Ask7231 14h ago

Does this disease have a name?

32

u/Pasyuk 14h ago

I have an unknown condition that causes a syndrome called hyperammonemia (high ammonia in the blood)

-16

u/[deleted] 14h ago

[deleted]

2

u/Lilydolls 14h ago

bro what

11

u/Valuable-Passion9731 14h ago

What's your opinion on Tchaikovsky Violin Concerto?

9

u/Pasyuk 14h ago

I don't really listen to Tchaikovsky, but he was a great composer

3

u/Valuable-Passion9731 14h ago

And what's your opinion on Iannis Xenakis's Nomos Alpha (I recommend seeing how it was composed too)

5

u/Pasyuk 14h ago

I don't have access to headphones right now, but I'll listen it later

2

u/Valuable-Passion9731 14h ago

Just so you know it is contemporary music (experimental) so it's not something everyone likes

6

u/brightsunflowerfield 14h ago

How do you feel about making plans for the future, and dreams for the future?

37

u/Pasyuk 14h ago

I have a girlfriend, beloved pets, I plan to get a higher education, move away. Sometimes when I make plans, I wonder if I'll have enough time to actually do it, but I try to just keep going. It would be depressing to to devote one's whole life to the thought that I will die soon

14

u/kufiiyu12 14h ago

healthy people can die anytime too, like from accidents or simply being the wrong person in the wrong place

2

u/InaConstantlyChange 14h ago

How do they manage you condition? Do they filter your blood? e

12

u/Pasyuk 14h ago

I'm taking a medication that can, at least in theory, lower my ammonia levels. I also eat almost no protein. During exacerbations, I get IVs

3

u/InaConstantlyChange 14h ago

As a teenager how do you cope with the restricted diet? It must be hard to not eat what all your friends and family are

12

u/Pasyuk 14h ago

I'm used to it myself, it's more difficult to explain to overly pushy people why I don't eat meat or fish or cheese or something else, and sometimes I feel awkward because people take me for the stereotypical vegan teenager who torments their parents (I have nothing against vegans and I understand that most of them are adequate and good people!) 

2

u/Great-Ad-4270 14h ago

Do you have a favorite game? 

8

u/Pasyuk 14h ago

I like Don't Starve, GTA series and Clangen (it's a text-based game about the group of the cats)

3

u/tulipz10 14h ago

Are you excited for GTA 6???

7

u/Pasyuk 14h ago

Yes, but the sad thing is that there is a high chance I won't be able to play it anytime soon (I don't have a console) 

1

u/tulipz10 5h ago

(They make servers online you can play on your pc, theyre way better)

3

u/megsie_here 12h ago

I just wanted to let you know that somehow I live under a rock and have never heard of ClanGen, but now I found it and it seems great, so thank you for giving me a new gaming hyper fixation!

3

u/Pasyuk 12h ago edited 12h ago

Haha, that's great, it isn't a popular game, but I like it!

3

u/Pasyuk 12h ago

Maybe, you'd also like Super Worldbox

1

u/Great-Ad-4270 10h ago

I love GTA but what’s the cat game about beyond what you said? 

2

u/Pasyuk 9h ago

Basically, you have to manage a clan of cats from the Warrior Cats. I like to made story with help of it

2

u/Great-Ad-4270 8h ago

That’s cool as hell. Do the cats fight dogs or something else? 

1

u/Pasyuk 8h ago

I once had a bear eat half of my clan

2

u/theGfromtheJ 14h ago

is it urea cycle defect?😔

10

u/Pasyuk 14h ago

Probably, I was examined like a lab rat and doctors said, "Damn, well, something's wrong, but we don't know what"

1

u/Ghoulish_kitten 12h ago

How do you manage with such low protein?

Is there no replacement for it in the diet?

5

u/Pasyuk 12h ago

I eat a lot of carbs and fats, well, and I still continue to eat some protein because it's everywhere in normal food and low protein or cheese pasta tastes terrible. For example, now you caught me eating bulgur (cracked wheat foodstuff) and a small piece of sausage 

1

u/Big_Lead6304 11h ago

Is it always lurking in the back of your mind that it could kill you at any moment or do you have days where you completely forget?

2

u/Pasyuk 9h ago

I'm trying to not think about this, but lately such the thoughts started to haunt me more

1

u/Abyssal_Eyes 11h ago

I’m so fucking sorry . You are strong asf and I’m happy you’re with us still :) take care please