Now Ye're Talking - To a Cystic Fibrosis patient & lung transplant recipient

sadie06

Wonderful thread…great questions!

I too am wondering about your experience of the health-care system in terms of specialised units and support etc.

I remember a few years ago the journalist Sam Smyth (whose daughter is a sufferer if I remember correctly) stating that those North of the border had a much better prognosis as the Republic were years behind in providing specialised, isolated care to CF sufferers. Has this improved? Are we catching up?

gerrybbadd

Hi Brian,

How is your heart now, that the donor heart wasn't suitable back in the day?

Great story by the way - I had no idea from following your other posts!

brianregan09

ken wrote: »

Other than the kid's thing is their anything you'd like to do/try but can't because of your CF?.

If that's too personal just ignore it.

Good question to be honest I've tried everything possible ...well not 100% everything obviously but I've never shirked from anything over CF if i want to try something I'll do it , take for example amusement parks , I go on absolutley everything I've tried boxing , Kick boxing and numerous other things i've never ever let CF get in the way if I want to try something

brianregan09

Dozen Wicked Words wrote: »

Hi Brian,

What have your experiences been like in the Irish and UK health service? Things you'd like to change if you could?

I think the UK service at the time i was over and back was absolutely light years ahead of us , Like the care is pretty on par , But the personal aspect is so much better over in Harefield they had there own housing estate in the village/town for patients families to move into while there were staying and the ward itself was phenomenal for the kids , If i wanted something aka I wanted Terminator 2 , they had an extensive video library for the adults/kids and if they didn't have it they'd give ya a card to get in the local shop, I think alot of that kind of stuff is lost in the Irish Health System

and on the Irish Health System I know we hear the horror stories of people on trollies almost daily now a days but I can't fault them to be honest , now maybe because of my condition i got preferential treatment because i rarely had to wait long for an outpatient appointment or a bed when i was ill and the team in there now is fantastic , in the clinic there is a dedicated CF team which there wasn't back then so no can't fault them at all, In the Mater it's the same they are top notch pro's and you can't fault them at all

brianregan09

Medusa22 wrote: »

Hi Brian, thank you very much for answering my last question. I'm glad that aside from some initial rejection that you haven't had too many problems, that is great to hear. I was just wondering what your lung function is like, your fev1? In litres or %?

Percantage wise its at about 27 now which is pretty good , It was alot higher intially after my Transplant but it does eventually dip back down , As long as I stay above 20 I'm fine and should have little to know problems and I go for walks with my dogs and live a fairly hectic lifestyle so I doubt i will ever have much trouble on that front

brianregan09

moleyv wrote: »

Hello.

I was wondering what support networks and services are in place for people with CF?

Like support groups, gatherings/clubs, one to one and that type of stuff.

And do you think there is enough support for people with CF?

They are there definitely I was offered a psychiatrist and all that stuff but I turned it down as I'm quite level headed about the whole thing and always have been as I said in a previous question so I don't let CF define who I am , So the support is there if ya need it , But outside of the appointments , tablets I kind of distance myself from all that stuff as I've very much Brian and not Brian CF

brianregan09

sadie06 wrote: »

Wonderful thread…great questions!

I too am wondering about your experience of the health-care system in terms of specialised units and support etc.

I remember a few years ago the journalist Sam Smyth (whose daughter is a sufferer if I remember correctly) stating that those North of the border had a much better prognosis as the Republic were years behind in providing specialised, isolated care to CF sufferers. Has this improved? Are we catching up?

Obviously as I said earlier UK back then was light years ahead and as far as we have come they probably still are I can't speak from experience nowadays but I wouldn't defo think we are massively improved from where we are

brianregan09

gerrybbadd wrote: »

Hi Brian,

How is your heart now, that the donor heart wasn't suitable back in the day?

Great story by the way - I had no idea from following your other posts!

Hey gerry suppose ya never know who the person is posting in the wrestling forum eh lol ?

But ya they decided to go ahead without the heart because 1 the heart isn't suitable and 2 my own heart was quite strong and i'd like to think it still I've never had any problems anyway and not on any medication for it so there ya go

brianregan09

Hey guys just wanted to say thanks a million for all the questions and it was really fun answering them , I hope I gave you the answers you were looking for and if not as close as possible and to the guys who have CF or relations don't give up the fight , I haven't and I never will

Gloomtastic!

Wishing you all the best for the future.

Before you go, what's your favourite type of cheese?

brianregan09

Mozzarella

MagicMarker

I saw a documentary once about multiple transplant patients who all received their new organs/limbs from the same donor. But it turned out that the donor was an evil murderer type, and the receivers started having murderous thoughts, and their limbs would take on a mind of their own.

Are you afraid this may happen to you?

brianregan09

MagicMarker wrote: »

I saw a documentary once about multiple transplant patients who all received their new organs/limbs from the same donor. But it turned out that the donor was an evil murderer type, and the receivers started having murderous thoughts, and their limbs would take on a mind of their own.

Are you afraid this may happen to you?

I think i've actually seen that one freaky stuff , But yeah no I've no fear of that happening me, Don't think my lungs could actually do much on there own though apart from maybe shutting down so hopefully that doesn't happen lol

Clearlier

What's the dumbest thing that you've ever done considering that you have CF?

Is there anything interesting that nobody has asked you a question about?

GAAman

Hi Brian, something I have wondered about transplant patients

Does it/did it ever freak you out that you have someone elses organs inside you?

Boards.ie: Niamh

I'm closing this one up now, thank you so much Brian for taking the time to answer all of these questions.

If anyone reading this thinks they have a story or experience that people might be interested in hearing about, let us know