Triggering: I Might Have Cystic Fibrosis :c

[milo_o]

So, on monday I have Vorsorgeuntersuchungen with my doctor (english translation is preventative examination) because I have had respiratory issues frequent sinus infections gut irritation nausea and have used an inhaler for years now, but was always diagnosed with asthma. However there is a history of cystic fibrosis in my family they want to check me up for that bc my symptoms have been getting worse and they haven't done a sweat test in a long time. I'm worried about getting diagnosed because if i get it then it's life threatening and I won't be able to play football which I've always wanted to do and my life expectency will be much lower than it would be otherwise my quality of life will be much lower since it gets worse over time and there is absolutely no cure for it. my relatives who had the disease never made it past 45 and that's rly scary.

All my doctors could do is treat the symptoms, so while it's not a terminal illness per se it can be pretty bad but i can live for a while or it could get worse and worse and i die young. i struggle with suicidality but for some reason the thought of dying young bc of a genetic disease really scares me, i don't want to die yet. i have so much i still want to do, i'm only 14 years old. i want to work as a nuclear reactor engineer and maybe eventually be a scientist to develop widespread clean sustainable nuclear energy solutions and maybe even contribute to fusion research. i still want to get married to a cute boy and have a nice house in bavaria and 3 cats and travel the world. i want to do so much and i'm just scared that i wont live long enough to do it all, my symptoms keep getting worse, and luckily it's not debilitating most of the time but sometimes it's just awful and i'm scared of that being my life now. if they discover that i have it then the fact is that my lifespan is immediately confirmed to be less than almost everyone else who's active in this forum and that is rly hard to think about.

it's ironic and i feel kind of guilty and cowardly for being as suicidal as i have been since now i might be getting what i want i'm terrified. i just don't know what to do if i get the diagnosis. idk if i'm just letting ocd and anxiety get me scared for no reason but based off what I know from my family and my own research i have to admit that i'm scared. i'm really scared.

[WhisperingSilence]

hey, cystic fibrosis (if you are diagnosed with it) shouldn't stop you playing football, I've got a friend and her sister has cystic fibrosis and last year she ran (she's 31 now) 3 marathons, and she horse rides on a regular basis. I know there is not a cure for cystic fibrosis currently and while a diagnosis of CF can be life changing, they can give you medications and treatment plans etc to mean that you can still live life to its fullest.
I think most Dr's actually reccomend that with CF you keep active as it can help your lungs function etc.
Treatments for CF are constantly being looked at and theres lots of research into treatments etc, I'm not entirely sure what the average lifespan for CF is, but I do know that people who do have CF are living longer.

Your Dr and medical team etc will explain it to you in detail more, and explain CF to you if you are diagnosed with the condition.


I have asthma and find that in the summer due to the pollen count etc it is sometimes aggravated a little more, and I also find in the winter when its below zero that my asthma is often a little worse, I am also prone to chest infections. it could just be that your asthma is not well controlled, have they also checked for things like IBS/IBD as both of those ( I have IBS - irritable bowel syndrome) can cause gut and digestive issues - things like nausea and diarrhoea etc.

Try not to worry to much.

[Arabesque- golfing girl.]

Hi, I am sorry about what you are going through and I hope that you will be okay soon. Try talking to somebody who you trust about this and let them know how it is making you feel.

[Mindfulness.]

Hi there,

I'm sorry to hear what you're going through. I can't imagine the anxiety you must be feeling right now.

As WhisperingSilence mentioned, you shouldn't let having Cystic Fibrosis (if it is that) stop you from doing anything and everything that you wish to do. I know that's better said than done but you can do anything you wish to achieve.

I'm here if you ever need anything.

[milo_o]

I'm gonna post my update that I posted in another thread on here:

Sorry for being so inactive, but I've been busy with real life stuff and I ended up getting word back from the testing my doctor's did. I did in fact get diagnosed with Cystic Fibrosis, and it is quite accute. I'm going to try to not get too doomer about it, and I definitely was letting my OCD and anxiety take over and make me assume the worst in my previous messages. It's going to be really difficult to deal with, and it really sucks knowing I will be chronically ill with this for the rest of my life, but I'm sure I'll be able to manage. I'd be lying if I said I wasn't scared, but luckily my doctor said I should be able to still play in my football club which is good. I'm glad that my life isn't literally over, but suffice it to say I'm definitely going to be losing a good bit of years out of my life that I otherwise would've probably had, but I'll just have to find peace with that. Nothing I can do about it but learn to live with the time that I have left, which admittedly is probably still a lot, but i'm still so young that being told I won't live as long considering what they've seen and the history that my family has with it is a scary thing. Thank god I live in the modern age so hopefully my doctors can keep me healthier for a lot longer than my family members who passed from it.

So yeah, there's the update for y'all. In short, I have cystic fibrosis and always will. My family members who've had it have tended to die a lot younger than the other members of my family so my mom is utterly heartbroken and distraught. I'm scared about it, but I have the condition in a time with far better medical technology than there was when my relatives died from it. So there's hope, but I'd be lying if I said I wasn't very nervous and upset about it. Just hate that there's nothing I can do about getting rid of it, but oh well, chronically ill Milo arc inbound I guess lmao.

[Astro04]

I'm with you. Don't let it consume you. Be careful and do your best!

[Mindfulness.]

Originally Posted by milo_o

I'm gonna post my update that I posted in another thread on here:

Sorry for being so inactive, but I've been busy with real life stuff and I ended up getting word back from the testing my doctor's did. I did in fact get diagnosed with Cystic Fibrosis, and it is quite accute. I'm going to try to not get too doomer about it, and I definitely was letting my OCD and anxiety take over and make me assume the worst in my previous messages. It's going to be really difficult to deal with, and it really sucks knowing I will be chronically ill with this for the rest of my life, but I'm sure I'll be able to manage. I'd be lying if I said I wasn't scared, but luckily my doctor said I should be able to still play in my football club which is good. I'm glad that my life isn't literally over, but suffice it to say I'm definitely going to be losing a good bit of years out of my life that I otherwise would've probably had, but I'll just have to find peace with that. Nothing I can do about it but learn to live with the time that I have left, which admittedly is probably still a lot, but i'm still so young that being told I won't live as long considering what they've seen and the history that my family has with it is a scary thing. Thank god I live in the modern age so hopefully my doctors can keep me healthier for a lot longer than my family members who passed from it.

So yeah, there's the update for y'all. In short, I have cystic fibrosis and always will. My family members who've had it have tended to die a lot younger than the other members of my family so my mom is utterly heartbroken and distraught. I'm scared about it, but I have the condition in a time with far better medical technology than there was when my relatives died from it. So there's hope, but I'd be lying if I said I wasn't very nervous and upset about it. Just hate that there's nothing I can do about getting rid of it, but oh well, chronically ill Milo arc inbound I guess lmao.

I'm sorry to hear. How are you feeling?

[milo_o]

Originally Posted by Mindfulness.

I'm sorry to hear. How are you feeling?

Allo, I am personally not taking it well but i feel like if anyone got diagnosed with an incurable chronic illness that they would probably feel the same. It could be worse but it's not as though it can be much better, I just hate that my genetics were so shit. My mom is taking it the hardest though, since multiple people have gotten CF and have died young as a result of it my mom is terrified of that happening to me too. She's scared of maybe only having the next 20-30 years with me since it would put me around the same age as my relatives who've died from the illness. If I get that much time left or even less then honestly I'll be okay with it. I have quite a lot of build up in my body already so it's a pretty acute case, who knows what my future has in store. But the doctors and my mom are concerned, so here's hoping that medical technology can pull out a Hail Mary

[Arabesque- golfing girl.]

Hi, I am sorry about what you have been going through and I hope that you will be okay soon.

[Mindfulness.]

Originally Posted by milo_o

Allo, I am personally not taking it well but i feel like if anyone got diagnosed with an incurable chronic illness that they would probably feel the same. It could be worse but it's not as though it can be much better, I just hate that my genetics were so shit. My mom is taking it the hardest though, since multiple people have gotten CF and have died young as a result of it my mom is terrified of that happening to me too. She's scared of maybe only having the next 20-30 years with me since it would put me around the same age as my relatives who've died from the illness. If I get that much time left or even less then honestly I'll be okay with it. I have quite a lot of build up in my body already so it's a pretty acute case, who knows what my future has in store. But the doctors and my mom are concerned, so here's hoping that medical technology can pull out a Hail Mary

That's completely understandable. I can't imagine what you're going through at the moment.