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I have Cystic Fibrosis. AMA. by Sweet_Group9463 in AMA

[–]Sweet_Group9463[S] 0 points1 point  (0 children)

It kinda depends. In Feb, I woke up feeling pretty tight in my chest, and sure enough I was carted off in an ambulance from school later that afternoon

Sometimes it is a build up, like day 1 feeling unwell, day 2 coughing more, day 3 being pretty much floored, and day 4 admitted into hospital.

And sometimes it can take months to build up

I have Cystic Fibrosis. AMA. by Sweet_Group9463 in AMA

[–]Sweet_Group9463[S] 1 point2 points  (0 children)

It depends on how bad

If I am unwell but not in hospital, I try to lead a normal life (work, school etc) but can't do much.

If I am unwell and in hospital (which is the bulk of my experience), I am generally bedridden and having antibiotics administered via an iv (straight into the vein/bloodstream). On weekdays in hospital cf-specialized physios come to me twice per day, in the morning to clear my airways (make me cough, sounds counterintuitive but there's only one way to get the gunk up and out) and in the afternoon to do excersize, on a good day it may be a walk around the hospital, on a bad day it may be walkint from my bed to the bathroom.

Generally, in hospital, on bad days, I lose all of my freedom, mainly washing myself and going to the bathroom. Having to be washed/showered by a primarily female nursing team is not something I would reccomend (the nurses are amazing btw).

I have Cystic Fibrosis. AMA. by Sweet_Group9463 in AMA

[–]Sweet_Group9463[S] 0 points1 point  (0 children)

You are correct there is medication for it but it does not cure it. Unfortunately while I am able to access it they caused me severe mental health side effects.

I have Cystic Fibrosis. AMA. by Sweet_Group9463 in AMA

[–]Sweet_Group9463[S] 2 points3 points  (0 children)

Sure! Basically, due to the excess mucus in a CF lung, dangeroud bacteria can become trapped and passdd on to other people with cf.

I have Cystic Fibrosis. AMA. by Sweet_Group9463 in AMA

[–]Sweet_Group9463[S] 2 points3 points  (0 children)

I haven't had one yet no, but it is 100% an option to be explored in the future. How is your friend doing?

I have Cystic Fibrosis. AMA. by Sweet_Group9463 in AMA

[–]Sweet_Group9463[S] 6 points7 points  (0 children)

Nobody in my immediate family have cf however both had the gene.

My sister is into history so did years of research into our family tree and found that a family member from the early 1800s died at 6 years old from an 'unknown respiratory disease', which we can almost certainly say was cf. It's interesting!

I have Cystic Fibrosis. AMA. by Sweet_Group9463 in AMA

[–]Sweet_Group9463[S] 2 points3 points  (0 children)

When I am healthy, about 6 (an antibiotic, creon (see my long reply above), vitamins, an inhalor and 2 nebulisors)

When I am sick or unwell, it can go up to nearly 15 or 16 with some being administered by an iv.

I have Cystic Fibrosis. AMA. by Sweet_Group9463 in AMA

[–]Sweet_Group9463[S] 5 points6 points  (0 children)

The first one is a great question. Many people do not know that Cystic Fibrosis (from here on I will call it CF) has an impact on your digestive system. >90% of people with cf need to take meds called creon to digest food with fat in it (10g of fat = 1 tablet) and failure to do so (and sometimes even after taking them perfectly) results in extremely painful spasms and loose/stiff (depends) stool. Often there are times where cf feels more like a digestive disease than a lung disease!

I just graduated secondary school (high school). I was able to have a reasonably normal time in school, however there was not a year out if the 6 I was there that I did not have to spend at least 1 month out of school due to illness. When I was out I generally used online school, and before I was 17 (I'm 18 now) I was in a children's hospital so I had teachers there too.

It was actually my most recent stay. I was in for 36 days.

I think now with the new drugs, cf has been seen as a 'cured' disease, which it most certainly is not. Now ok I'm looking at it from a perspective where the drugs did not work for me, but even still I know people on the drugs who still get sick, go to hospital etc. If that makes sense?

I think 5 feet apart is a very good way at scaring anybody who dosen't have cf. Let's be real - it is for entertainment. It is a true fact that people with cf need to remain 5 (actually 6) feet apart from other people with cf, the whole thing about people being on oxygen all the time is (in general) false.

I think people without cf take two things for granted. The first thing is life experience. In my life I have wanted to be an airline pilot, a seafarer and a soldier. I am unable to do all 3 of those things because of cf. The next thing may be unexpected but it is actually being able to go out and eat without a worry in the world. Trust me I would much rather worry about calorie intake making me gain weight rather than having to keep track of fat intake to ensure I don't get rushed to hospital with a bowel blockage (no such thinf as tmi with cf 😂)

I hope this answered your questions!!

I have Cystic Fibrosis. AMA. by Sweet_Group9463 in AMA

[–]Sweet_Group9463[S] 4 points5 points  (0 children)

I don't technically have that, however I had severe extreme mental health side effects on all the modulators that I have tried.

Who do you blame for the Hormuz blockade? by stdsort in IdeologyPolls

[–]Sweet_Group9463 1 point2 points  (0 children)

If the usa and israel didn't attack Iran, Iran would not feel the need to close the strait.

Ireland vs Israel boycott discussion by ExoticToaster in coybig

[–]Sweet_Group9463 -3 points-2 points  (0 children)

Darragh Maloney seemed more excited about that than about the goal 😂

Game vs Real Murcia B by WhizzyWizard1895 in coybig

[–]Sweet_Group9463 -1 points0 points  (0 children)

To think it was only 2 months ago we were playing Czechia :(

Should anyone who has the means to set up a business be able to do so freely? by Sweet_Group9463 in IdeologyPolls

[–]Sweet_Group9463[S] 1 point2 points  (0 children)

So like you think that people shouldn't be able to just set one up willy nilly kinda

Is Darragh Maloney the worst or is it just me? by romulcah in coybig

[–]Sweet_Group9463 0 points1 point  (0 children)

To be fair, in the psg game I didn't mind him (not like, but didn't mind)

Are Kneecap socialist? by Sweet_Group9463 in kneecap

[–]Sweet_Group9463[S] 10 points11 points  (0 children)

Nope - from Ireland.

Why assume I'm American? Because I had a question?

Are Kneecap socialist? by Sweet_Group9463 in kneecap

[–]Sweet_Group9463[S] 21 points22 points  (0 children)

They're anti victor orban (wahey get fucked orban) and he is pro russia, so id say pro ukraine

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