so I've been diagnosed with Cystic Fibrosis

[venusvenus123]

so it's kind of annoying and all, but explains the reason behind my being sick for the best part of a year.

it means I have to nebulise drugs three times a day. Now that I have this diagnosis I qualify for a faster machine, so it could be worse. But washing up all the tubing is a drag.

I also have to do daily chest physio and regular exercise (the best bit).

I will probably get sick again and have to go into hospital for IV antibiotics. It could be worse of course and I'll probably live a full life, but it's a lot to get my head around.

Feel free to sympathise. :o

[Adam]

Oh my. So sorry to hear that. I can't imagine how you are feeling. All my best, I really dunno what else to say.

[trailerprincess]

:( That's really tough but I suppose the only good thing is that at least you now know and can get a really good treatment schedule together. Best of luck with it x

[Echewta]

Heres to hoping that the diagnoses means the treatment works spot on and less visits to the hospital :)

[HEIRESS]

:(

Atleast it is something manageable right, isn't that the silver lining on this cloud?
Does anyone else in your family have it?
Or is your diagnosis due to a mutation and has not been present since birth?
Are they looking into any gene therapies as part of your treatment?
Are you better enough now to go back to your normal daily routine?
I will stop asking questions now, sorry!

I'm just so glad they figured out what was the matter! And so glad you will not having anything in your amazing life cut short!
<3 <3 <3 <3

[abcdefz]

I'm so sorry. I hope you can have good spirits while you manage it. That's hard.

[QueenAdrock]

That's really rough. I can't imagine everything you're going through...but like has been said, now that it's diagnosed, it's more manageable. All my best, Venus!

[hpdrifter]

Wow, that's really heavy. Best of luck with everything and at least now you know what you're dealing with.

[venusvenus123]

:(

Atleast it is something manageable right, isn't that the silver lining on this cloud?
Does anyone else in your family have it?
Or is your diagnosis due to a mutation and has not been present since birth?
Are they looking into any gene therapies as part of your treatment?
Are you better enough now to go back to your normal daily routine?
I will stop asking questions now, sorry!

I'm just so glad they figured out what was the matter! And so glad you will not having anything in your amazing life cut short!
<3 <3 <3 <3

It is manageable, yes. As far as we all know, no one in the family has it. They found that I was a carrier of the main CF gene in January, then they had to look further beyond the common variants. The tests took 3 months (yep, efficient NHS :rolleyes:) and I just got the results -- a month ago, when I was in hospital.

I have had it my whole life, but it is a mild version so basically I've just had tons of chest infections and, until I got really sick last summer, with a chest infection that didn't respond to any of the regular antibiotics, they didn't guess.

It is a progressive disease, which leads to lung scarring and damage. They saw evidence of both of those in the CT scan I had last November, when I was admitted to hospital.

At this very moment I am really down because I just got back from the pharmacist (I tried 2 different places) who said that the drug I was prescribed in hospital recently, which is finally making me feel better, is too expensive! Grrrr. I know it's a bit of bureaucracy that will sort itself out, but I have been up against so much of this crap already, I'm running out of patience with it all.

The upside is that I have an incredibly supportive CF team at my local hospital. I will call them in the morning and hopefully they'll be able to help. This drug costs the NHS £500 a month :-o.

Thanks for all the kind words, it means a lot. It's really just a question of fitting it all in to my life and what that means. I am asking to go part time in my job, and hopefully they'll accommodate that. I work in parliament and they've been super supportive. So yeah, that could all be so much worse!


And to answer your other questions, Heiress, I'm not sure if they're thinking about gene therapy, but I have a clinic this Thursday so I will ask.
I'm just about getting back to a normal-ish life, let's say 75% there. I had a busy weekend, 2 evenings out in a row, and felt totally shite on sunday. so umm, not quite there yet.


Thanks for listening!

[MC Moot]

buena salud a usted,sinceramente...

[mickill]

You seem to be maintaining a positive outlook despite the obvious reallykindasucksness of your condition, which is great. I wish you all the best with your treatment, and I hope you find every way to overcome the challenges left ahead of you.

[Waus]

Wow. :(

Nothing poignant for me to say, but good luck with that. Sorry to hear it.

[kaiser soze]

hugs and hope for a healthy life regardless of this condition!

avoid mucus making foods (especially dairy!)

[paul jones]

Sorry to read this mate,all the best and hugs

[Guy Incognito]

sorry to hear about this, you sound like you have a good handle on it so keep yer chin up.

[ms.peachy]

Jeebus Christmas! Sounds like you are getting to grips with it in a really healthy and positive way, though. And I don't doubt that there is some relief in at last knowing what is 'wrong' with you, after all of the random chest infections (which, I know from experience, suck ass) and now have a more defined course of treatment. Still though, I get that it's a bit of a blow. Hang in there, it really does sound like you are on the right path.

[rirv]

I want to say something about how it's good to get it off your chest...

...but instead I'll say that your family are superb and deserve a healthy mother who will deal with this condition in such a way as to render it meaningless.

[Fern]

sorry baby

[gbsuey]

Hey, i'm sorry you've had to deal with being unwell fairly regularly, and i hope having a diagnosis will make life a lot better. And i hope you get the meds you need, that's just rubbish that they can say they're too expensive. Why make them then?? And surely once they're developed they can't cost that much to replicate?? But ranting won't help will it!

You sound positive and fairly upbeat, i know it's either that or sit and wallow but you most definately have a great attitude.

[skra75]

hugs
I have pretty bad asthma I can sympathize.
lung illnesses suck.
I donate regularly to the cystic fibrosis charities if it makes you feel any better.
good luck and god bless

[venusvenus123]

Thanks for all your kind replies everyone, it really means a lot to me :o

Having a rough time recently...
It's fucking shitty when the symptoms flare up, as they have now. It also requires a huge mental adjustment, going from being a "regular" kind of person to a person with a disability, albeit invisible to most.

Kaiser, I asked my specialist about avoiding dairy products and she said no, you don't avoid any foods at all, make sure you follow a balanced diet. The people who have the full symptoms are often severely under-nourished because they cannot process fats and absorb nutrients. I saw a couple of them when I was in hospital-- really skinny :(

I got the drugs sorted, thanks gbsuey. It was a ridiculous situation, all the medical professionals around me agreed--think there was a break in the chain of communication, plus I encountered an ignorant chemist. Now he's lost my business! I have a really supportive team at the hospital and they sorted out a month's supply for me. Then the (nice) chemist also coughed up, so I was all sorted and it will be fine in the future. I hope!

That's all for now. Work is another matter, but I actually don't have the energy to even type about it right now. All this is probably why I've gone a bit quiet on the board. I rarely go out in the evenings. I had to turn down my sisters "girls' night in" on Thursday because I could barely function by the evening. Now if people could organise get togethers in the morning, I'd be there.. for at least five minutes.

Pity party over! *hugs*

[Bitchamachacha]

I <3 you.