Hi, I'm assuming she has it because that's what you've told me. For blood tests it is impossible to get a false positive. They test the blood for the genetic fault on chromosome 7, genes can't...
Hi, Does your sister also see a CF specialist doctor. That can make a big difference in the care she will be receiving. IMHO unless someone specialises in cf then they do not know the ins and outs of...
Hi Sabrina, Sorry for not been on, been a bit of a hectic weekend. I don't know about Creon at that age if I'm honest all you can keep doing is going back to your child's doctor. Creon is a bit of a...
How is everyone, keep us updated :) Gem...
It is possible that you could be a carrier, yes. However for the cf gene to cause problems, you need 2 copies of the gene, but a carrier only has 1 copy from one parent. Some say carriers are more...
Hi Austin, Firstly I will say discuss with your cf team to see if they think it's possible as they may know a different way in. I'm sure I've heard something about civilian services or something like...
Hi skyvast, I know it's easier to say than do, but try not to let yourself get worried about this. I'll say from what you've just said it doesn't sound like cf. Also I'm very shocked they've...
Hi Spencer, As Austin said Orkambi is a new medication that's out that helps treat those with double df508. You should ask your doctors if you aren't on it already. Are you seen by a CF specialist...
Hi and welcome, There are of course risks when it comes to cf and working in an environment known for high concentrations of bacteria. I suppose there's a risk in any environment but hospitals are...
I agree, everyone is different and some with CF are pancreatic sufficient. I was the opposite, my mum could only get me to eat fruits and veggies as a child and I was severely underweight. It was...
Wiley, I meant my lung function was sat in the 70's not my saturated oxygen. If it was my SPo2 that was in the 70's I'd be rushing myself to A+E. I never desaturate below 95%....
Hi Wiley, I don't have another GTT planned until next year. I know what you mean about lung function, even though I have high functioning lungs at 90+% a drop of 10% can feel like I'm being choked of...
Only if she has pet allergies which can be tested for if she starts having problems/wheezing more etc. Lots of people with cf have pets. I've been through them all, rabbits, Guinea pigs, hamsters,...
Hi Sabrina, Sorry for the late reply, been busy. It could be that the pseudo isn't gone in the first place and is still hanging around in the lungs. It normally takes 3 clear sputum results over a...
Here is a diagram to make it easier to understand :) http://www.daviddarling.info/images/cystic_fibrosis_inheritance.gif ...
There is a 1 in 25 chance of someone being a carrier of the CF gene. (uk statistics). If you look at the full CF gene being part of a puzzle, there are 2 pieces to the puzzle. 1 piece is from each...
Hi and welcome to Healingwell, I don't know anything about these 2 specific mutations I'm thinking they're probably rarer ones. Different mutations cause the CF gene to be faulty in different ways....
Its getting to barbeque season!! I'm having my first one tomorrow, first actual proper barbeque too and as such I've probably got a bit excited with my invite hammer so will have 12 hungry people to...
Eat2bwell, I have tried to privately message you but you have no contact details so hopefully you will see this here. Will you please becareful about any dietary advice you give out on this forum....
Hello, and welcome to healing well, While nutrients are important please only follow a diet set by your sons dietician. A high fat, high calorie, high salt and in some cases high sugar diet is...
Hi sabrina, I'm not really sure how cpap can directly help with weight gain. However there is some science to cf that might explain the thinking of the doctor. When lungs are working really hard they...
Hi, So sorry to hear your son is having such a tough time. A CPAP machine they use in CF and Sleep Apnea if you've ever heard of that condition. Something like if you are not breathing strong enough...
My experience with cf is, both my brother who is 2 years younger than me and myself have it. I was diagnosed at 2 years old about a month before my brother was born so he was tested right away. My...
I can imagine it is a very stressful time for you both. For now I would just try to enjoy your pregnancy, you're growing a person a wonderful little boy and that's amazing. CF will just be a small...
Sorry to hear that mbills. How are you feeling about it, are you OK?...
Hi there and welcome mbills, Congratulations first off, having your first baby, you must be so excited despite circumstances. I hope you find some good information here. People born today with CF...
I understand why you're scared the unknown is always so much scarier than the known. When I was 19 my muscles started wasting away with no explanation. The doctors thought the only reason could be...
Nope they are not accurate. A positive is normally a definite positive. However there a lot of factors that could throw a negative test. They might not have got enough sweat so they could be testing...
Hi there, The tv and the internet can be scary when you're feeling rubbish and looking for answers. Cf is a very big diagnosis and is a multi-organ genetic disease. Normal people do get chest...
Hi there, Hopefully you will get the answers you need from the CF centre. They do sound like possible cf symptoms but then there are many diseases that could be similar. A sweat test result of 24 is...
Hi there wiley, Well it turns out the gtt was a blip. The 5 day food diary and blood sugars all were OK. They think that with me having an infection and I've been having anxiety attacks going to the...
Hi there, Sorry to hear you now have a definite CF diagnosis after all that confusion aswell. I hope you are OK and feeling well despite the diagnosis. I see you were also diagnosed with diabetes,...
Thank you for your information Lanie, it is very helpful. It's give me an idea of some questions I could be asking if my food diary does show I'm diabetic. :) Gem...
Oh ok, so I knew a bit of that info. Didn't know diabetes could cause weight loss though, and excessive tiredness is me all over and has been for a few months. Lung functions still OK though. Now I'm...
As far as I'm aware over here they don't discourage you from eating anything you just have to make sure you take the insulin to match it. I've been instructed not to change my diet only to add more...
So, 2 weeks ago was my annual review. My blood results have come back from my glucose tolerance test and it shows my 2 hour blood sugar to be high again. It's 14, so yeh pretty high. 2 years ago it...
Hi shoni, I just thought I'd check in and see how things are doing. Have you had any information from the tests yet? I hope all is well Gem...
I agree, the worst thing is the unknown. Once you know either way you can get on with it. Until then you will be looking for symptoms and that is normal. A lot of children with cf have no signs until...
Hi, Jumping forums, just because Remeron is a med I know a little bit about. One thing about it is the side effects are worse the lower the dose. So, 45mg generally gives less side effects than 15mg....
Hi, welcome to the healingwell forums, I'm guessing the test at birth was the heel prick test? I'm not sure about the total accuracy of that one as it tests for a certain chemical in the blood. A...
Hi there, I don't have Crohns but am from the UK. Can the Gp not refer you to a specialist at the hospital? When looking for an NHS doctor a gp has to do the referral. I found that out last month...
I'm always running at a low temperature. 35oC (95oF) is my normal average reading sometimes as low as 34.5 (94.1F) very rarely over 36. 37.5oC (99.5F) is a raging fever for me. Does anyone else...
Thanks Lanie, you're a star!!! I wouldn't have even known where to start contacting Lauren. The link you posted works ok :) I have completed the survey now, I feel where the responses were "more...
Thanks Lanie, and Judy. Hopefully Lauren realises there's a problem and comes back to fix it. :)...
Maybe my tablet. Tried to show the message and its messing about with photo bucket links too. I'll log my computer later and check again. Judy is the link taking you anywhere? Even hotlinked it says...
Hi there Lauren, I've followed the link and it says "this URL is incorrect". I think it might be right and the link is wrong, as usually urls are automatically formed into clickable links on this...
Yeh I think it's that way too Judy. There's another American film called Foreverland, which was good, I enjoyed it and it hit a few good touchy feely parts. But the rest of it just felt like it was...
There have been many TV shows and films that portray what Cystic Fibrosis is really like. Some are a lot more realistic than others. Which are your favourite/least favourite and why? In the UK we...
Hi there, I know I'm a few months late on this and apologies for that. The sweat test isn't totally accurate but gives some indication of whether cf might be present. People with cf sweat out 100%...
Cystic fibrosis effects many of us in many different types ways. Firstly people who use this site may have cf, maybe be the parent, cousin, friend, partner of someone with cf or may just like to know...