You got this dude! What hardships have you gone through to be able to get help for everything you need to keep you going?

main hardship was getting laid off/furloughed. At first i was just straight laid off, and if it was not for my CF clinics social workers I would not have been able to hold my employer accountable. Rent was terrifying.

After that, missing checkups/weigh-ins at the local hospital. Doing a CF wellness check over the phone is difficult, and relys heavily on "how you feel" which is far less empirical. and scary.

next was gettign up to snuff with the food deliveries.

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i could go one for ages.... theres been so many.

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I would say the worst of all of it tho. The isolation. I thank my postman from the window, I haven't hung out with friends in ages... i know most can relate to that. But while everyone else is isolating for their own reasons, I am doing it literally in fear of my life. and thats very challenging.

Are you having any group video conferences? Quizes, drinks etc.?

I did a quiz the other day, and have played quite a bit of online poker with friends. Not to mention chatting with my fiancé, who is sadly stuck in the USA right now. But yea. I use vid chat as often as possible. It’s a real life saver

At least YOU are not in the USA.

trust me, i know.

If you wanna watch YouTube videos of some things over Netflix, I'd recommend you try out metastream with your fiancé. It syncs up YouTube/Netflix/etc between your two browsers. However, you must both be logged in to use Netflix and such, since this isn't screen sharing.

hey, thanks for the rec. I'll see if she knows of this. I know she gets antsy when i dont message her back within a few hours. so sitting down to an episode of something together would be fabulous.

Can I ask how you held your employer accountable?

given how loud this AMA has gotten im not gonna chat more on that. if you are having COVID related issues with work PM me and i can give you a bit more perspective

[deleted]

yes, thats their reason. law or greater good. thats a reason.

edit: comment OP is probably lots of fun at parties.

I have two children with cystic fibrosis, is there any additional information you were given with regard to cf and Covid-19 other than quarantine?

Discolouration in fingers and toes that are clubbed. That was the only odd one, that stood out. Like yellowing or darkening in the cuticles of clubbed digits.

Outside of that, cf and covid have the same damn symptoms. So it’s been rinse repeat of the same info we know by heart. “Different cough than usual” etc

Oh, and this is just from my experience, diet. I’ve had to change how I measure my creon. My metabolism is stagnant, due to not being active. So I find myself needing more creon, or I feel very unwell.

I've been wondering how the CF community was coping with the Covid-19 outbreak! My mom had it (she made it to 53! Passed in 2006) and knowing what she would go through on a daily basis, I couldn't even imagine how awful it would be if someone with CF got this virus.

53! shes a fucking legend! I raise a cider in her name!

That's good to know, thank you.

Are you also currently taking Kalydeco (Ivacaftor)?

nope, D-nase and reg inhalers. most of my CF complications manifest in my gut. so i dont need too much lung treatments

Considering Covid-19 seems to be primarily a respiratory illness, I suppose this is one of those rare instances where we get to say that it's a good thing it's not a lung problem instead.

indeed. i am lucky, sorta.

Which CF mutation do you have?

My nephew has CF, my sister in Ireland is doing something similar to you. Thanks for the AMA

f5, the most common. the other mutation is undefined

Why would you have two children if you know you're both carriers?

We don't have two, we have four.

Well, too bad for them I guess

yep, too bad for them. its not like they can ever be happy people ever. AMAIRIGHT GUYS?! excuse me while i chuck myself off a bridge

If you could have 1 thing there to help you through this time, what would it be?

Now I know you immediately want to say your fiance, but I said "thing", not person :p

My fiancé to be here with me. I miss her so much.

That’s it. Literally. But if she’s not an option....

Maybe a proper mattress. I sleep on a glorified mattress topper and it’s killing my body even harder. I find myself 50/50 sleeping on the sofa or in my room thanks to that hogshit “bed”

Set up a gofundme, I'll chuck in a few quid

you're too sweet for an internet person! happy cake day, and chuck them quid in the pot for a pint at the winchester as this whole thing blows over

I'll happily throw in £20 towards a new mattress for you if anyone else is willing to chip in.

no, dont worry. that was just me answering the question, not a plead for charity. im fine. thank you however

Hello! My sister also has CF and is in hardcore quarantine mode with her husband and baby (in Rugby). She has more problems with lung stuff than pancreas stuff.

Keep strong buddy, like you said elsewhere. CF makes you have to be a bit more resilient to the shit life throws at you than the average person.

Question: what music have you discovered since isolation / furlough?

she was able to conceive?! thats a blessing. many congrats to her, is the baby testing negative?

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answer : nothing new discovered, but some of my fave bands are putting new stuff out there which has been great. Oliver Tree for example, he's pretty upbeat. And theres a band i love called Phish, they put out a new album which is very pretty. Oh and some gems have been surfacing from an electronic artist i love called Aphex Twin. So yea, mainly old faithful groups, with new tunes on deck!

Would you like to play DnD over discord with us? It's Sunday evenings.

I don’t know how to, I would be ‘that guy’ thank you very much tho however

Is there anything you need or would make your life better? I am in the area.

No. I’m okay. Thank you however. I’m doing better than lots of others, and furthermore I’m still young. So I will the see the end of this whole thing.

Again, thank you.

Have you picked up any new hobbies while in quarantine? What do you do for fun?

i have a beautiful fiance who is currently in the USA until late aug/early sept (hopefully she can come back by then) who i speak with daily. Without her I would be lost.

I have been trying to play the piano, i got the first few bars of RAinbow Connection down. I really love the muppets, so that puts a big smile on my face.

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I have a few friends who I play poker with online.

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otherside of that.... not much. I am pretty depressed. and would be lying if i said i HAVEN'T slept thru a few day. in their entirety. im not proud of the fact that I haven't 'seized the day' or bettered myself. but im lethargic, sad, scared, and bored. It's a horrible cycle.

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i like cooking, but i dont do much of that anymore. i dont know. what do i do for fun? read reddit and sleep and feel sorry for myself like a boring sack of shit.

Hello! I'm a music teacher and would be happy to teach you some piano lessons through Skype or zoom if you would like. All of my lessons are free because of covid, its important to keep people busy. Feel free to PM me!

Edit: Holy shit my first gold! Thank you so much kind person!

are you serious? i would be foolish to not take you up on this. my keyboard is in front of my computer too, so its all set up for this sorta thing already.

ooo you should do this OP what a nice offer

i am going to!

read reddit and sleep and feel sorry for myself like a boring sack of shit.

You're really at risk of alienating your fan base here.

im trying to answer as candidly as possible. this has been a reality for me more than once. so thats the answer to the question.

Have you seen the protests in the U.S. regarding people who want “non-essential” businesses opened back up (such as hair salons) because they feel their civil liberties are being trampled upon? And if so, what is your reaction to these protestors?

Not to be callous, but I hope they get sick. It blows my mind that people can live in such an echo chamber. Professional patients like myself live sick every single day. Since we were born. It makes my blood boil when I see their smug faces with their signs, needing a haircut. Fuck them.

Sorry but I am never going to be able to hold a reasonable conversation re: those fucksticks. I openly admit that, and would prefer not to even start because I am horrendously biased and take it way way way too personally.

They are entitled to their opinion, and to do what they want. But if that shit was happening on my curbside I would need chains to restrain me from going out there dressed in hazmat and a fake torn mask coughing all over the place.

Do you have someone (neighbor, friends, family members) who would buy you emergency groceries this quarantine time? Or you just order it online?

My cf clinic and psychiatrist call me weekly to make sure I don’t take a mental health nosedive. If I well and truly needed something I could call anyone from that team and they would drop everything to help. The NHS is the greatest thing ever, and the staff who help me are true angels. I love them, like more than my own mother.

I will just pretend I haven't read that.

Mom

you know how to type now?! or move?! and you reddit?! how?!

Very random question. I'm a physio and am wondering if you notice a difference between manual and mechanical percussion. How would you say most people with CF feel about the options?

manual all day.

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we spend years of our life attached to machines, and taking prescribed medications. i understand being attached to a machine is more convenient to workflow and attending to more patients. However it really dehumanizes YOU, the person under the vest. When a person gives me PT its personal. It makes me feel more human. It's warm, its conscious. Thers something very scary and "im just a serial number" to pputting the vest on and being left alone in a white room for 30 mins. To have someone there, even just chatting shit... and beating the shit out of your back.... even at 32 years old i need a hug sometimes.... and manual PT is pretty close to a hug. At least I grasp at those straws.

hug

i dont know why, since this thread is loaded with positive vibes and virtual hugs... but this one. this one stood out. i felt that, fellow human. thank you.

Edit: I woke up unsettled and came back to read this comment. Huge hug back

another edit : i keep revisting this comment. thank you. so much. i REALLY feel it.

How are you managing your chest PT in isolation?

Also, sending you a great big, digital hug.

bronchodialators (sp?) and lots of forced breathing. which for those unaware is a technique of breathing that clears deep seated mucous. not literally 'forced' breathing. its a process.

Sorry if it's been asked but I didn't read whole thread yet..

But, how do you cope? I find it hard to focus on much.. I smoke a lot of weed at home to kinda zonk out but it doesn't totally work either. In your shoes what are you doing tho?

when i feel really down, i just sleep. ive lost track of time a few times.

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i also use marijuana, but smoking is very bad for me. So i just kinda take a small hit here and there. but dont use it much. if we had legal edibles here i would be a grade a stoner. pot helps with my stomach problems, big time (really, im not just saying that. its true)

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how do i cope? im not sure if i even am.

Haven't heard of government supplied meals. What are they like? Delivered to your door I assume? Do you get to choose out of a selection? Best of luck for your lockdown.

They are like microwavable things you would get in the hospital. some are pretty tasty. its not about the taste tho, its about the calories.

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also, theres weekly grocery drops.

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two rolls of TP, some small things of soap and shampoo. a thing of pasta, some soups, a loaf of bread (which goes bad within like two days, so i always toast it first, and rip off the blue bits)... some fruit. potatoes. its a great service, and while there's issues with some things... the govt food drops happened FAST and have been incredible.

Edit: no, no choices. Not a problem. Mans gotta eat

If you freeze the bread and just take slices out 10 mins before use to defrost it'll last much longer.

Good lord that’s an amazing idea. Thank you VERY much

Good luck friend. One of my good friends is 42 now and has cystic fibrosis. We both live in New Jersey, one of the worst hit places in the world currently for Covid-19. Scary times.

Ah, 42, the Answer to the greatest question of them all. I sure hope I make it to 42. Then I get a whole year of hitchhikers guide jokes

Best friend has CF, she's turning 40 next month. You'll make it there and beyond.

fuckin a right i will.

How many meals do you eat in a day?

depends, if i can handle more than four than i can hit 5/6 'square' meals a day. But I prefer to just be constantly snacking/ingesting.

if I am only eating two, it's important to consume a high calorie nutritional shake called "scandishake" which has 600 cal or something along those lines. This offsets low caloric intake for a day.

You were supposed to respond with 2 or 3 and then I edit the post to What is your IQ?

my IQ is literally over 12. you cant fool me.

What color is your toothbrush?

Lemme check, I just opened a new pack.

Purple! Nice.

In your picture, I see creon capsules along with two vitamin D 50,000u? What are the small red capsules?

Good luck!!

red = vit A + D

orange = uro acid

white = thiamine

dark ovals = new supplementation created by my nutritionist in Bristol! its called Parafit (paravid?) and it does the work of about 3 other pills i would have to take 3x a day. So its cut that pile of pills in half. Love the stuff.

then yea, creon. lots and lots of creon.

pic obvs does not show nebulizers and salbutamol

Hi :) I am a phd student who is studying mycobacterium abscessus, a bacteria that almost exclusively affects people with CF. My question is, do you follow the science regarding CF, and which area of treatment (antibiotics, physio etc) do you think needs the most research? Most of all I wanna say stay safe, and I hope you can get through the rest of self isolation okay, it's tough for us all but I can't imagine having a chronic lung condition on top of that. x

Thank you for taking such interest in a wildly niche bacteria. It's people like you that bring all their research together and cure cancer. So allow me to thank YOU.

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which area of treatment needs more research? from a strictly clinical perspective I think that zygote and early (read pre-natal) detection is key. we can identify mutations very early, and abort said babies. but if we were able to "fix" them and allow them to live. it would be far less traumatic to the parents, and people like me would have been fine once we were fired out the birth cannon.

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from a more personal perspective, i wish i had been better educated and prepared for the mental side of things. from learning what CF really was (by accident, while reading the encyclopedia in the library at school. it had a VERY morbid write up) to understanding how to cope with being told i wont be able to have kids... and i cant do too much physical activity... and i have brittle bones... in the early years each step had some good news, and loads of bad news. At it just never stops. So you just keep trucking. Then all of a sudden you are in your twenties and have lots of issues, that can take priority over your physical ailments. We are strong, cf patients, but we are still people. and living in the shadow of death since 3 years old sows some very deep seated issues. That tend to come up out of no where, next thing you know you are an hard boozing asshole with anger issues.

Have you managed to sort out supermarket delivery?

I'm also on lockdown for 12 weeks and getting delivery slots was a nightmare. I've worked out that when you fill in the government form on the website you need to make sure your email and address match the details on the supermarket account.

Ironically I had just finished therapy when all this started for my tendency to be a shut-in, so I'm probably taking this better than most.

highly vulnerable have early doors on supermarket delivery slots! england is doing a great job handling people like myself. so i get to put orders in prior to joe public

If you could replace all the grass in the world with something else what would it be and why?

can i choose hypoallergenic grass? cause it would be less itchy, and a shocking amount of people are allergic to grass. and thats no way to live. I miss laying in the park.

No

in that case, four leaf clovers.

I have Cystic Fibrosis too! It isn’t easy especially in these current situations. Yesterday was my birthday and I still had a great day, just trying to keep positive :) How are you finding the government packs? I just seem to get beans and tomato soup haha

My dude!

Your post is a great example of how cf people think. “It isn’t easy” and “still had a great day”

This thread has lots of charity, but the reality is we are face to face with mortality. Every day.

Also yea, heaps of beans

How do you cope with the fact that you will probably have to stay in quarantine for a least a year until there's a vaccine?

'Out of sight, out mind' is my first thought. CF teaches with an iron fist, and as such I have learned to approach each day one at a time.

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when i was born, i wasent supposed to live past 12 years old. then 16... then 18... now im over 30. so if I had the what-if mentality I would just be hiding under the patio clutching a gallon of milk and my inhalers.

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I would like to think I will be free, soon. But I dont know. No one knows. Thats part of why this whole thing is so scary.

Do you think it would make more sense to isolate 1% that is highly vulnerable or isolate everyone?

woof. that is a HARD question. I will revisit this, as its a fab thing to mull over. thanks for the brain food

considering a vaccination won't likely be ready for another year or so, do you think you might have to live like this for a while?

See other post re: this. Quick tho, I do not think about the fact I might be this way for a full year. If I did I would go crazy

Biochemistry student here. In my genetic studies classes, the concept of gene editing has been long debated and discussed, particularly the moral implications of changing an unborn fetus’ genes. They are unable to consent, as they are not yet born vs the parents should be able to consent for their child. We talk about CF quite a bit, as it’s (technically speaking) easier to fix in a person’s DNA than many other diseases. What are your thoughts on genetic modifications that would prevent developing diseases such as CF?

A classmate of mine has a sister with CF, so I’m curious if your opinion differs from hers. Thanks, and stay safe, friend!

i support genetic modification 100% - if i was still able to be born, but without cf.... why wouldnt i choose that? I mean i wouldnt CHOOSE to be aborted, had my mother known in zygote stage that i had CF. I like myself, and feel like im important to my friends & coworkers, i just dont like the CF thing.

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I am not religious, so that plays into my very clinical perspective.

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Simply put, if you see the kids broken do what you can to fixem. earlier the better.

I lost my friend just over a year ago to Cystic Fibrosis, it's a horrible disease.

How are you finding the quarantine so far? Stay safe!

It is horrible! Smelly too!

Quarantine = the big suck

What makes CF smelly?

digestive issues. we dont digest all of our fatty foods, so it rots in our gut (not literally, thats just the most laymans term i can use) - so we are very gassy and our bowel movents are..... well.... closer to bio-terrorism than poop.

Stay strong my dude. Does having CF entitle you to any financial aid aside from standard job seekers? It seems crazy that you have to worry about finding work in the near future considering the risk. Also I've heard about lung transplants for people with CF, is it something you would consider in future?

All the best!

I am not sick enough for most financial aid, as I am still able bodied. There are systems in place for those who are close to death. But I am glad to not need them yet.

Lung transplants are major... you don’t even approach that unless you NEED one. It’s not like they just whack a new pair in and you’re sorted. I will hopefully never be in the position to be considered for such a procedure.

Is there anything you’d like people to know about Cystic Fibrosis or be more aware of?

YES! now more than ever, the coughing is normal. i know it sounds AWFUL, and it feels pretty crap too. however that coughing is good for us.

in this state of the world, i understand people are scared of coughing. but i need to clear my lungs, and i always have... always will. please dont stare

Hello, glad to hear you've made it to 30+.

I have an inlaw with CF, and he recently started a new drug called Trikafta and had experienced great results. Is your mutation eligible for this drug? If so, it may be worth checking out.

only one of my mutations is common, so i am ineligible. furthermore, im not *quite* sick enough for big drug rollouts. they affect your day to day life heavily.

Did you see the movie Five Feet Apart? What did you think of the depiction of people with CF?

this movie was a big deal in the CF community. splitting most people in half.

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one part says, hey great... awareness!

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other part says, thats just not how it goes.

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Lets say you love fishing, youve been fishing for years... you started by not catching anything... then learning you needed bait.... started catching small stuff, so you learn about flys. You know, like developing a learned opinion on it. Then all of a sudden some film comes out, and it shows people just chucking hooks out there and snagging trout left right and centre. You think, man... i mean yea... thats how it do... but not really. But you're happy, cause cause now your friends want to go fishing with you. Which is cool. Does taht make any sense at all?

What symptoms did you have that led you to get screened for cystic fibrosis?

my day care workers as a baby noticed i had "aggressive" bowel movements. and i would leave rings of salt in my crib on hot nights. mum took me to the doc and they sussed it out quickly

How do you use that CF Patient card? What purpose does it have as part of your care?

Also, thanks for doing this! I hope it makes the ‘greater good’ real for people - remind people they aren’t just isolating for themselves, but for the millions more vulnerable like you.

the patient card gets me priority at A&E (ER for the americans) and also if i am unconcious or whatever they would find that in my wallet and know not to put me in a shared room in the ICU or something along those lines. I dont think it lets me skip lines at disney world, but i havent tried yet.

What happened in 1927?

The first transatlantic telephone call is made via radio from New York City to London

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also, the Harlem Globetrotters played their first game. which blew my mind as well.

What are your thoughts on the UK's initial "herd immunity" strategy?

150% does not apply to me, or other CF patients. We are outliers. We are not healthy to begin with. We die, and once we die, herd immunity might work.

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You know the phrase "gotta break a few eggs to make an omelet"? Herd immunity, and the things certain politicians say make me feel like the egg in that phrase. We are the expected casualties. Pretty grim. I got feelings man.

I got sad and drunk last night and smoked 13 cigarettes and coughed up a lot of black shit this morning. Am I dieing?

Nope! The lungs are filled with mucous and that shit is STICKY (esp mine) If you’re purgin black shit, it’s prob from ages ago. And you should be happy it’s out, not in. Now quit smoking.

What does it feel? Are you scared? Anyway you got this dude, wish you the best

what does it feel like? like being out of breath all the time. also a never ending stomachache. pain is white noise, constant and sometimes you forget its even there.

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am i scared? yes of course.

Out of curiosity, what are the meds you are on?

red = vit A + D

orange = uro acid

white = thiamine

dark ovals = new supplementation created by my nutritionist in Bristol! its called Parafit (paravid?) and it does the work of about 3 other pills i would have to take 3x a day. So its cut that pile of pills in half. Love the stuff.

then yea, creon. lots and lots of creon.

pic obvs does not show Dnase nebulizers and salbutamol

How do you feel about dieing for the economy? There are plenty of people out there which demand that solidarity from you.

i'll fall on my sword for lots and lots of things. but the economy? no. I'll go out and donate my body to clinical research. thats how I'll help.

What was for breakfast today?

Lemon tea with a bit too much sugar, and about 15 shortbread biscuits.

Have you heard anything lately about Trikafta? Is it available yet and would it benefit you? It sounds amazing.

i sorta touched on this previously, so i'll givea quick response. im too healthy for trikafta.

Went to school and played lacrosse with Gunnar Esiason. How do you view the Boomer Esiason Foundation’s work in the space?

i think its wonderful, and since i dont have any personal experience with them i have no reason or standing to speak as such. but from what i see online and on the CF communities, they seem to be fighting the good fight. especially in the USA, where healthcare is some kind of privilege.

Do you think that the economy/"I don't want to be told what to do" is a valid arguement to put people like you at risk?

no, its not a valid argument. it is however, an argument.

Have you been hard the entire time mate?

nah, only sporadically.

Maybe I’m biased due to being addicted, but are video games /consoles of any kind not an option right now, or just not at all your thing?

i have a ps3, i just beat GTAV and have been playing DOOM 3 & Resident Evil 5. But im not very good, and get bored of them quickly. I would prob be into PC games, but i only have a mac from 2008 and it just doesnt... do... that.

Did you vote for Trump Lite?

I was very torn re: politics. However I always vote in favour of the NHS. So.... draw your own conclusions.

Torn, really. Was the other candidate or candidates that terrible too? I'm sorry, I really don't follow UK politics

its politics, so once the can of worms is open..... so i wont get into that subject any further

Why are you making this up?

why are you making up that I'm making this up?

What makes you think you're interesting enough to do an AMA just because you have weak genes?

I’m not interesting enough. And they are not weak, they are mutated. You have cf genes in you too.

But yea... I happen to have a completely open schedule today. Moved some things around. You gigantic twat.