How do you view CF?

a blessing from God? I dont think so. I am told that God can do anything, well Im waiting for him to heal me. CF is so rare, I dont know why I had to be born with it. any1 who says its a blessing has no idea what there talking about

 

God can do anything. God will heal you, if not in this lifetime, if you have faith, you will be grabted freedom from cf. I have witnessed God act in awesome ways. I've heard the bones of a man with a crippled arm crack back into place while a bunch of us were praying over him. I'm not lying. I've felt and angel with me, and I know God will heal me. Faith is the key. God gave you cf for a reason, he knows you can handle it, and if it seems like you cant, turn to God, He will not leave you. I know I'm only 14, but cf has forced me to grow up fast, and I know and Love the Lord. I am asking you to please talk to me if you want help knowing God, my email adress is [email protected] I know you might not respond to this, but I hope you will. May God be with you, you are in my prayers.

-Leah

Oh, I'm really sorry, I didn't know. I wont do it again.

I am 17 and Have CF. I have always looked at it in a positive light and am grateful that I was given the chance to have this disease. I use it to promote awareness and help look for a cure. The only thing that upsets me about it is the lack of awareness throughout the country, but I hope to change that one day.

Dear hlady

Welcome to Healing Well and the CF Forum.  I am Kitt.

I am so sorry your daughter died and as a Mother we share that.  I lost my son to a car accident when he was 21 years old.

I want to thank you for posting here to the others as your words are so supportive and caring.  You have lived the life of a parent with a child who had CF.  I believe you have great wisdom and caring.

Again a warm welcome.

Kitt

Hi......You could have the father of your children tested to see if he is a carrier.  It's done by a blood test.  If he is not, then your children won't run the risk.  Chances are he's not a carrier.  But if he is...meaning you both are, your children can be tested to see if they have CF, then you will know for sure and won't have to wonder and worry.  Usually symptoms show up earlier in life from what I'm finding out.

    Best wishes Rose

I'm 15 and I really don't remember a time when I didn't know that i had CF. My parents were a bit radical with my treatment, no physio. Simply because they didn't have the time since they were both working full time and i have two older siblings. For me this seemed to work well, instead of physio I would swim heaps and play lots of sport. I go to school every day and no one there apart from a few friends know that I have it. It really sucked when we were doing genetics in science because our teacher had all the wrong information and it was quite upsetting some of the things that she said. Despite my mum complaining to the school and all that she seems to hold her ground on her views of CF sufferers. I suppose I'm luckier than most since I've never been hospitalised apart from the odd hiccup such as infections in my ankle bones. CF isn't really one of those things that I dwell on really. I've recently given up sport (much to my parents horror) and nothing has changed yet. When i was little I went through a phase where I wouldn't take my meds and I would do this so that I would feel "normal" again. Since growing up a bit more I've realised that having CF isn't so bad really, I get to eat what I want and miss a few days of school here and there and I suppose I'm just that optomistic about life :D

You can, but you probably have another CF gene mutation that science cannot yet detect. I don't believe one single gene will do anything, though many people claim too be carriers with full blown CF. From what I've been told my my docs and other hospital staff, you have to have 2 genes, one from each parent.

Hope this helps and makes sense. If not, tell me which bits and I'll try and clarify.

Gem

I'm not sure of the exact odds, I think it's like a 2% chance of being a false reading.

The best thing will be have another sweat test, and see what those results show. Only then will you know for certain I think.

People with CF sweat 100% more salt than a 'normal' person, which is what the sweat test tests for-chloride levels in the sweat. You can either get a negative, borderline or positive result. The borderline result is a real grey area, and it is decided on someone having CF depending on symptoms.

With genetics side of CF it's awkward. There HAS to be one gene from each parent to make a whole one. However, as I said, they can only test for a small percentage of CF genetic mutations.
There are many different mutations, and the ones they have found, seem to have definate differences in how the gene effects people. Also the rest of your genes in your body can counteract certain parts of the CF gene, which is how you get 'milder' versions of CF.

The sweat test is the most accurate tests, and is about 98% accurate.

Don't worry about rambling on, anymore questions please ask. I'll give as much info as I can. Though, off to bed now, as I'm from England and it's getting late, so will respond in the morning.
I'm not an expert on CF, only really on my own experiance of the condition, and most of my info does come from internet research I've done over the years.
I think things are a lot harder when you don't know exactly what you're dealing with, so I try to keep up-to-date with everything.

Night night!
Gem

Wow, a CF support group-I'm jealous!!!! Our cons would have a fit if we had one over here. He goes mad at the slightest risk of cross-infection between patients lol.

I do have a few friends with CF. We always used to play together as kids, and there were no cross-infection rules back then. I miss those days, as friends with CF can be so valuable! But, as you say, you lose people along the way, which is so sad. I have met some people with CF, who have such beautiful hearts though.

CF can be so lonely sometimes, if you don't find that right support. I'm glad you've managed to find some.
Gem

Consultant, lol sorry about shortening it.

I think even if we have masks our consultant would have something to say about us cross-infecting-because you could touch the same door handle etc. He's very strict about it.

I never agree with how strict he is though-I'd be happy to wear a mask if it meant I could talk to people the same as me, but he says no, and goes into a cross-infection lecture at slight even acknowledgement that there's another cf patient on the ward.

EternalOptimist-

We do have specialist CF clinics over here. The clinics are completely cut off. You're led to a single room and everyone comes into see you like doctor, nurse, physiotherapist, dietician. You can only have clinic days on specific days, where everyone in on that day has your bug. You're only allowed upto the clinic on any other day of the week, if it's an emergancy.
If there is someone in clinic who doesn't have your bugs, then you have to use an alternate entrance so you're not even passing by their room.
After one person with CF leaves a room, all surfaces and chairs have to be wiped with alcohol rub and left to settle for half an hour before another person with CF can enter that room.

On the ward is a different story entirley. We're not supposed to mix, but do as soon as the CF team leave the ward. But only if we're carrying the same bugs. I have a few friends who carry the Liverpool strain of Psuedomonas same as me, they're the people I've known since childhood. But not everyone does. I won't mix with people who can't tell me what bugs they have.
We share 1 bathroom and 1 toilet, unless you get one of the special rooms that are onsuit. But those rooms are disgusting in other ways, in that they have a bad habit of flooding out with sewage when the pipes block up.
We each have a room, to keep us protected from the elderly patients on the ward, and too keep them protected from us.......We're young, we get bored easily lol, laptops, music and TV and maybe a games console we take in to stop the boredom.

We did share a kitchen on the ward, but I think that might have been closed down, I'm not sure as I had my last lot of IV's at home.

We're soon getting a proper CF ward built, with all new stuff. Sounds good, but I can imagine room confinement actually coming into full force........They best make the room nice too stay in. :P