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Cystic Fibrosis...any threads??(40 Posts)
does anyone know if there's any active cystic fibrosis threads?
I'm 25yr with CF. I have two healthy boys aged 5yrs and 2yrs.
I'm free to chat x
This thread never comes up in threads I'm on, for some reason.
NettleTea, I'm sorry that things are difficult at the moment. I hope that things are working out ok in the hospital.
Are you on Facebook? I'm a member of a couple of very supportive groups on there that are much more active than this thread!
A year on and we are here, in Kings, after having a bronchoscopy and flush yesterday, with a PH probe down the nose (but she is refusing to eat or drink because it is 'agony') and having lost nearly a year of school from anxiety and illness where she has at many times refused point blank to do any meds or physio. We had an admission early October so am sad we are here again now. But despite the difficulties of juggling being away from home, and DS not being allowed on the ward ( have had to call in all the favours for people to look after him) I am glad we are up here, as she will see the psychologist several times during her stay and we might start to get somewhere with this brick wall we have come up against.
Feeling a mix of not positive and very positive depending how the wind blows. I have to leave her here on Sunday night as I need to get home and look after DS. We will both have to come up next week, and juggle again, as he can nly stay n the waiting room. Hopefully we can take her out at some point next weekend.
hi NettleTea .....really sorry but only just seen ur post, better late than never eh???
Thank you for sharing your story. It must be hard for you to step back but i suppose that she is going to need to start taking responsabilty at some point, still scary tho
Hi another mum here with a cf child. DD is 12 and just started seconday school. her little brother does not have CF but recently has been diagnosed with asthma and was overjoyed to have an inhaler like his sister. Can I just say how great and how true I found MissLivvys post. We know CF will get in the way, and we try to just take it in our stride. Its infuriating at times, worrying at others, and a bloody pain in the arse quite a bit. DD is probably heading into diabetes too, so that will be more to deal with, but generally she is a normal little girl, interested in doing the same as her friends, and we let her partake as normally as she can. We have had an average of 1 admission a year since age 8, before that it was 3 years, before that none at all - she was diagnosed just before her 4th birthday, and has the most common mutation.
She rebels against her treatment, and I am doing the difficult thing now of stepping back and allowing her to take responsibiliy. She desperately doesnt want a port, so she knows if she is lax and ends up having more admissions then that will be on the cards. She is in charge of her own creon at school.
Didn't mean to press post! Dh has had late work nights and so I've been more tired and stressed than usual, just dealing with bedtimes by myself, which might account for why I've felt especially bad the last few days. I also read some things on the Internet that maybe I shouldn't have ... Our specialist nurse said the future has never looked better for a baby born with cf, but then there are still tragic stories out there.
What's gene therapy - is it some kind of treatment? I'm staying away from google for now! It would be good to know if there are treatments on the horizon though.
Baby is sleeping and older dc playing so I might manage a longer post! Littletommy, thankfully ds is healthy at the moment. If it hadn't been for the heel prick test, we would have no idea that anything is wrong at all. He's my third baby and we were just getting into the swing of things, with dh back at work etc. when we got this devastating news.
Twojumpingbeans, I think I've pm'd you, but please tell me if it hasn't worked. I've had a look at the cf trust website, but would it sound crazy if I said I haven't wanted to post there because it might make it all a bit too real? MN seems a bit safer because I posted here occasionally when my others were babies.
MissLivy, it's so good to hear about your dd! I think your advice about getting enough sleep etc is probably very good. Dh has had some late w
MissLivvy - what a brilliant message, how exciting to be involved in the gene therapy trials, please do keep us posted.
little tommy I've sent you a friend request on FB so I can add you to the group, I have found it to be really helpful. I think one of the cruelest aspects of this is that our children won't be able to be friends in RL. So, I'm all for as much on line support and friendship as we can get - it helps me and hopefully in time will help my lovely little DD.
Morethanasong - will look forward to hearing from you, hope you are bearing up. X
Thanks everyone for your replies - for some reason they weren't coming up on threads I'm on so I've only just seen them. Twojumpingbeans, I will pm you when I'm not trying to breastfeed a wriggly baby!
tonight (tuesday) on BBC3 at 8pm, love on the transplant list
thats very good advice MissLivvy xx
Hi more than, our DD was diagnosed at 3 years old, she's 17 now and has just applied to Oxbridge. I know those feelings of desperation, when the life you thought you were going to have, has gone. I'm not suggesting it will ever be 'right' and of course I wish my beautiful daughter did not have to suffer as she does, but over the years we have experienced so much love and kindness from so many. DD has missed about 2 years of school yet has achieved so much. But what has made the difference is how one's family deals with the cards one has been dealt. I always remember her consultant on the day of diagnosis, saying CF will dominate your life but don't let it ruin it. This is the attitude we have adopted, we have 2 sons 18 and 15 wocf, and we enjoy our family and all the good things in our life. I believe the biggest chance in life is the parents you have, their approach is crucial. There will be very tough times ahead, DD has had periods of terrible illness, but she has pulled through. Just because things may look very bleak at times, does not mean that's how things will pan out. My advice would be, you're perfectly entitled to feel sad about the cruel blow you have been dealt, but try to focus (in time) on all the good things in your life. Always get enough sleep - tiredness can bring the sad feelings rushing back (also you need to be ready to leap into action should illness strike). And try to live in the present, and not think too much about 'what ifs'. The future is brighter than ever for CF sufferers, in fact tomorrow DD goes for first gene therapy trial treatment! I wish you and your family a long, happy and healthy life xxxxx
I've just had a look for those facebook groups twojumpingbeans but can't find the, don't suppose you have a link for them? as i would like to join x
Hi there - I'm here. Believe me I totally understand how you feel. My little one has CF and is now 7 months old. If you want to talk then please PM me and we can swap contact details.
Have you looked at the CF trust website? Their forums are ace. Also if you are on Facebook there is an amazing group called My CF Family, they are wonderful. There is a sub group too for CF Parents who are completely brilliant and very supportive.
Please know that I understand exactly how you are feeling. It's like your world has been smashed to a million pieces, we are still rebuilding ours but we'll get there, things will never be the same again, just different.
Sending you love - if you want to talk or email then PM me and I'm here for you, hugs.
Sorry for the late response but i don't come on here very often. Also i'm sorry about your bad news. i found out about my son not long after he was born and it is very daunting especially as its an illness i knew almost nothing about. Is your son currently in hospital?
I hardly ever post on MN but I really need some support. My lovely 8 week old ds was diagnosed with cf 4 weeks ago. I think I'm still in shock, we had no idea that there was anything wrong with him. I have two older children who don't have cf. I just feel so sad at the moment, all the time, like I'll never be happy again. We've told a few people and they've all been kind, but everyone seems to be saying that I just need to get used to it and that once we get used to the routine of medications, physio, appointments etc. it won't seem so bad. But I don't see how my son having a life-limiting illness is ever going to seem better. Anyway. Please, I really need to hear from people who know what I'm going through.
Reindeer - just wanted to come here to say thank you so much for your thoughtful and kind messages when we first found out about DD2's CF. Those early days were (are) so overhwelming and frightening it really made a difference to get your messages. So really - thank you.
I am so sorry to hear that your DS isn't doing too well, I truly hope he starts to improve very soon. DD2 is almost 6 months old now and so far is doing well, a couple of colds and coughs but these seem to have cleared with extra antibiotics, every clinic appointment and snot test fill me with fear though, I think it's knowing that at some point she will get poorly. Very difficult to deal with, we just take one day at a time and try to be grateful for every one. She really is the happiest little baby, this is both good and bad, if you know what I mean?!
Not that I'm a Daily Fail reader or anything (though I am a sucker for the sidebar of shame...) but there is a really interesting article about Kalydeco on there at the mo' . I have to hope that this is the start of some real progress in treating CF. I am plip plop at links but think its easy to find if you do a search...
Hi Little. No not CF but I have lung damage caused by a ventilator over heating and scalding my lungs then I have asthma, the tracheal rings..heart disease...it's all very boring and annoying. However, I've met more CF patients than I can shake a stick at being in and out of hospital with them. Hope you don't mind me hopping on board none the less.
im not a big fan of the new hospital either reindeer i much preferred boothhall and pendlebury, shame they close :-(
Hiya hugglebug i'm guessing that u have CF? Its good to hear that ur ok, well as ok as you can be. Its nice to meet adults with cf, mostly its children that i come across.
I'm Mum to a 3.5 year old and currently 6 weeks pregnant. I also have heart and lung disease (bronchiectis sp?) as well as tracheal stenosis. generally I'm ok (by my standards) but finding this second pregnancy a bit more of a struggle already, using my nebulizer more, more breathless. Just a hello really.
Haha little tommy that just highlights how bad my geography is! DH has been to barrow for work so I just assumed it was closer. I am sorry to hear that he has other complex problems, I'm not surprised CF isn't high on your list of worries. I wasn't a fan of the Children's in Manchester but I know that some people really think highly of it. We went to booth hall for surgery once, it seemed quite nice, shame they had to close. Yes my daughter is very clued up on hospitals, but they treat her as part of our team spits quite nice. We are very lucky. We seem to be ok for the moment, so despite the diabetes we're happy, which after a few rough Christmases and dodgy x-rays I'm glad to see.
OhEmGee, it's really nice of you to offer that info on threads. It can be difficult to access certain services sometimes due to the nature of the ward rounds, but it can be really useful getting one on one school time (plus it eases the boredom).
Hope Titasalinabumsquash and Dorisiswaiting and their DCs are ok.
It's great it's really close to Chelsea and Westminster hospital. That's the school base then they go to three other sites including Brompton. The Brompton's school site is especially for cardiac and lung patients. They have a specific part of the classroom with a glass wall so cf patients in isolation can still take part
ohemgee24 yeah i was telling titsalinabumsquash this further up in the thread about all scholl aged children being entitled to it after being in for so long. Not always so easy with the cf patients tho cos they're not allowed to mix and are often in isolation :-(
I alwats take advantage of this and get them to sit by my DS bedside reading storied just so i can have a little break
I'm not too sure where the Brompton is??
Op- if your son is having his broncho at the Brompton there's the most fantastic hospital school there (I did my teacher training there ). The teachers can do stuff with your son at his bedside or he can go the onsite classroom. Either way you'll get a break. Hope he's doing ok.
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