CF
 

My sisters boyfriend(who lives with us, and i am very very close to, he's more of a brother than anything else) has the inherited terminal illness Cystic Fibrosis. Just wondering if there was anyone else with it or know's/did know people with it.
Or any other terminal illnesses for that matter?
And does anyone feel like they are greiving already even though there not gone yet? Just because you no it could be any time and you are apsolutly terrified of loosing them?

XxXxX

My friend from school had cf and she died just before her 21st birthday. However this was years ago and I believe they can do more for people with cf now. Her sister also died of it and her brother who I was also friends with has/had it, I don't even know if he's still alive, I know that sounds terrible but I've no way of finding out.
I'm sorry your sister's boyfriend has it, I don't know what to say to comfort you. If you want to talk anytime, just pm me.

i can understand how you feel about already grieving.

i would advice though that if you can it is best not to greave until they are gone you need to keep the time you have with them happy, it maybe short or long none of us really know that.

I understand what you mean, its not the same, but my great grandma is still alive and shes 93 and it always feels like everyones grieving already, its kind of sad because everytime she goes to the hospital or theres something wrong with her everyone thinks thats it.
Of course its very different when the person is younger, and its much more important that you try not to think in that way, otherwise you wil have wasted all the time with him and in the future you will really regret it. Cystic Fibrosis is an always thing, but the life expectantcy is increasing all the time as treatments become more and more advanced. If he is so special to you, you should use everyday and every week and every month and every year, having fun and enjoying yourselves. I know its hard to do but you really will regret it if you spend all your time, grieving before he's gone.
Take care
Aimee xx

Thankyou People=] Tis all very helpful

XxXxXxX

One of my uncles had Cystic Fibrosis - we werent very close at the time of his death, so it didnt have a great effect on me .... but I did find out later about the tough time that my Aunty went through during the last 6 months of his life. She saw her husband just getting sicker and sicker in those last few months of his life .... and she sat by his bedside in hospital as he endured an unsuccessful lung transplant, only to lose him a couple of months afterwards.

I totally understand that loved ones often experience premature grieving when they are anticipating the death of someonewho has a terminal illness. But as understandable as it may be, and although I realise that its a way for loved ones to prepare themselves for the eventual outcome, I sometimes think it can be a bit of a waste of those last few monebnts on earth that we get with that person we love. My Aunty often tells me now how lucky she feels that she got 10 long and happy years with my uncle ... and all of those years were like a gift ro her (and to him!) .... because although he lived until he was 45, doctors told him that he'd never survive over the age of 20 (apparently there had only been one other person with Cystic fibrosis in Australia, who had lived past my uncle's age when he died)

My motto in life is - you never know when life is going to throw you a curve ball ... you just cant predict what will happen from one moment to the next .... healthy people die in car accidents frequently ... scientists are always finding new and exciting cures to a baffling medical conditions - although I can understand why it happens, it just doesnt make alot of sense to be grieving for someone while they are still an active presence in your life.

I think we should all make the most of our friends and family in the here and now - make each day count like its the last, and you'll never be disappointed or regret one single moment.

Yeah im am enjoying the time i have and supporting my sister an all =] just difficult seeing someone you love going through so much. but you are all completely right. gotta look at the here and now =]

Thankyou

XxXxxXxX

CF is a devastating illness.
a friend in school had it but she died at 19 years old.
but that was 11 years ago so hopefully they have new medications and treatments available.
but yes, we all knew it was coming and we were prepared.
im really sorry.
spend as much time as you can together and make many happy memories.
much love.
xx

One of my best friends has CF and is waiting to go into hospital at the moment. It never hit me how serious it was until a couple of months ago when I found out that she'd nearly died. Now I often feel like I'm grieving for her already so I know what you mean. You never know when it's going to be. Here if you want to talk xxx

I have never been through anything like this, but I can understand how you must be feeling. I'm thinking about you, please get in touch any time. Take care. xxx

Was just wondering how you and your friend are doing? I hope you're ok. My friend is quite ill at the moment but at least she's not in hospital.

Take care xxx

I think I can say I've been through this.
When I was in high school, I met a girl in the first year who told me she had CF. We became friends and she would talk about all the things she was going through, and me and her other friends would listen and comfort her even though it broke our hearts to imagine how cruel life was being to her.
One day she had a deep conversation with me about why she didn't want people to dislike her, because one of her biggest fears is knowing that there wont be many people who will want to attend her funeral.
At that moment I began to grieve for her as if she were already gone; realising that terminal <i>means</i> terminal hits you so hard.
It's terrifying, but I understand how tough it is to stay brave and optimistic for the people around you.
In our third year of high school, I had to go to A&E with her (for a sports injury) and when they asked in the ambulance if she had any illnesses she said no. I thought this was a strange form of denial, but when I whispered to her mum later on at the hospital that she had not mentioned her CF her mum told me that she doesn't have it.
Turned out she had been lying all through high school, putting all her friends through the pain that people like you have to deal with.
Sorry for rambling out a story. But I guess in a way, I'm explaining that I can help you if you ever want to talk - Because I've been through the grief and come out on a different side to those who have gone through it <b>all</b>.
Take care xxx