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Cystic Fibrosis...any threads??

(40 Posts)
littletommy22 Wed 13-Jun-12 20:56:05

does anyone know if there's any active cystic fibrosis threads?

Gigondas Wed 13-Jun-12 20:58:15

There is one in chat about new medicine for cystic fibrosis- why not ask there?

DorisIsWaiting Wed 13-Jun-12 21:04:41

We did have a thread ages ago but it wasn't a very regularly updated (I think many of us used the CF trust boards with CF specific issues) although it's always nice to have somewhere people tend to 'get' what you're going through...

I don't have CF but my dd2 who 4 does.

I happy to stay around and chat. Particularly as DD is not well at the moment and we have been struglling for the past few months now...

I'm currently in hospital with DS1 who is 7 and has CF, we're here for 3-4 weeks so I have all the time in the world to chat.

DorisIsWaiting Thu 14-Jun-12 09:46:36

4 weeks is a loooong time for admssion Titsa. Fortunately we've managed to get home IV's but still had longer admissions for bowel obstructions in the past (although touch wood non recently, largely due to a unhealthy poo obsession!)

How's your ds coping? Have you got family and friends close by?

We're ok, bored silly but coping.

We have 2 weeks at our local then a bronchoscopy at the Brompton then another week or 2 of treatment there so we'll be 3 hrs from home: sad
DS has an abnormal anatomy and has an extra chamber in his right lung that is causing nothing but trouble atm so we need to get that under control before thinking about longer term management.

That along with being 18 weeks pregnant with number 3 and battling a constant UTI it's not much fun. Only blessing is having DP at home with Ds2.

DorisIsWaiting Fri 15-Jun-12 10:11:04

Oh that's crap! They keep talking about bronch for dd but that's 2 hours away in Bristol so I know what you mean about being away from home. Will you be able to stay with him or is there a Ronald Mcdonald House nearby?

Not much I can really say to make it any less stressful are you having help with the physio ? And are you on any treatment for uti ?

sending good wishes your way

I'll be staying with him, I'm always staying with him! I also have to get up early go and fetch DS2 take him to school then pick him up again and have them both at the hospital until 5.30.
Tbh I'm bloody exhausted and could cry. sad
I miss DP, I miss home and I could do with a nap most days but the war require DS has constant supervision.

DorisIsWaiting Fri 15-Jun-12 17:05:43

Oh! <<< very unMNetty hugs>>> I'm tired just reading that. Are there any volunteers / chaplaincy type team / playworkers who could sit for a couple of hours to allow you some time out ?

It's really hard on the wards and it must be even harder when you can see no end in sight (I know there is an end but 4 weeks is a long time--on the inside-- on the ward).

Do you have much family support, we are 00's of miles away from my family who are fit enough to help, but close to MIL who is loves the DD's but is not desperately hands on.... and I hate asking friends again....

please try and speak to someone to get some time out, (whilst the ward want you there it is up to them to provide the supervision..... sometimes being a little less obliging will help protect you in the long run) I know it's really really really hard to say no particularly when you are worried about what they [dc] will get up to when you are not there, whether they will get scared or come to do yet more tests. But sometimes you do need to bump yourself up the priorities list abit, telling the ward you HAVE to go may be what is required.

They don't make this easy do they...

I get my allotted "time off" to get Ds2 everyday. There is one play lady who has him then.
Family are thin on the ground and everyone that can help is helping with DS2 for the times he is at home. I should be used to it by now but it never gets any easier and DS1 is a somewhat "spirited" child at the best of times

littletommy22 Sat 16-Jun-12 15:35:32

ive just been reading through ur conversation, i feel for you both. i have a son aged 9 with cf along with several other illnesses. titsalinabumsquash as ur son is aged 7 is he not entitled to hospital school, from my understanding all school aged children are entitled and it gives u a big break. when my too is too poorly they usually come to his bedside for an hour or so maybe just to read to him, also what about the music therapy people. Is it a childrens hospital ur currently in or just a general? we have a local hosp with 1 little childrens ward but we are rarely there for his cf and we tent to go to manchester childrens hospital for everything now. i also have a daughter aged 5 she's healthy :-) its hard work when having to split urself between ur children isnt it....titslinabumsquash and dorisiswaiting how do ur other children handle things? do they feel pushed out at times? my little girl seems to think we're going away for fun everytime we're at hosp. im looking forward to the new ronald mcdonald house being built so we can stay as a family

ReindeerBollocks Thu 28-Jun-12 22:33:46

Hi littletommy22 (and everyone else) whereabouts is your tiny unit in Manchester? I'm in a small hospital too in a similar area (well DS is). If I'm thinking right you can't be far from me?

tits how is your DS doing? I PM'd you about a week ago to check how you were getting on, but forgot you couldn't access the PM system! are you two weeks in now? How is his chest doing? (and you too sleeping on those horrid beds) hope you are all ok.

doris hope your DD improves soon and doesn't need the bronch. Did your DD have MI too? Just with mentioning the bowel obstruction.

I have a DS who is also 7. He has been in a bad way for a while (small patches of collapsed lung recently) but we went on holiday last month and it seems to have made a big difference and he seems much better. Only to be diagnosed with CFRD today. Quite a shock as its very rare under the age of ten. Even our consultant was shocked. But ho hum, we take the rough with the smooth, as do all cf parents I guess.
I also have another child but she doesn't have CF, but accompanies us on all of our trips there. Seems not too bothered but this may change with age.

littletommy22 Fri 29-Jun-12 11:00:17

Reindeer
I'm sorry to hear that, it does seem young to have it, i only know older children who do. What age is your other child? My non CF daughter is 5 and still likes to attend things with us. I'm yet to have taken mine abroad but have heard that the nice weather can make a big difference. I dont think our rubbish summer is doing them much good!
The nearest hospital to me is Furness General Hospital in Barrow-in-Furness, i live in little village just outside it BUT they wont do any CF care there now so we go to Royal Manchester Childrens Hospital. Which one do you go to? We used to go to pendlebury and booth hall before they were re-sited.

ReindeerBollocks Sat 30-Jun-12 21:12:55

We go to Wythenshawe, which is a tiny unit (very good though) and links with the adult unit which I believe is the centre for the north west. We don't go to central often, but did go there for his port and mini button three years ago. I found it very odd, but then again we were on a general surgical ward, not a CF ward.

It is very young to develop CFRD. I know he hasn't been in the best of health, as he has had a couple of harsh winters and long courses of IV's but they were just testing to rule it out of not gaining weight, only for a confirmed diagnosis. But Im hoping this will improve his current health and hopefully mean benefits for weight and chest so I'm trying (very hard) to look on this as a positive. My daughter is 3, and because we attend a small unit, the nurses all know her and my DS by name and are so kind, they both got Christmas presents etc. they really look after the whole family and we are truly grateful for how they treat us.

Ah I'm rambling, Barrow in Furness is north Manchester but still probably about half an hour on a good day, were in south Manchester. How is your son doing? Is he going to be choosing high schools soon? Hope he is well.

littletommy22 Mon 02-Jul-12 00:54:04

Aw thats nice to hear about ur local being like that with u all, i suppose it helps a little if u feel comfortable and more at home whilst in. I have heard of wythenshaw but never been. Barrow is miles away from manchester, its near the lake district in cumbria lol.
He is a special needs school so wont be leaving to go to high school, doesnt leave until 19, unfortunatly CF isnt his only illness so cant attend mainstreme school. He got encephalitis when he was 5 which has left him with neurological problems, epilepsy, mobility problems to name a few so his CF has kinda taken a back seat for the past few years with everything else going on.
Yeah i know what u mean about not always being on the CF ward, we get placed all over the hospital, sometimes it depends where they have a spare cubicle but id of thought if he had a port fitted then the surgical team would want him on the surgical ward, maybe the staff there are more used to looking after post-surgery wounds etc?? We were placed in the burns unit at boothall once just because they were short of cubicles.
And ur not rambling, i rarely talk to people around me so its nice to find others in similar circumstances to chat to.
Ur daughter isnt much younger than mine so i can imagine urs is starting to get very clued up and trying to help out...has she ever pretended to be poorly yet to get attention? mine has a few times.
Well its almost 1am so i best get to bed, i logged on the comp quickly to order DD some red shoes at 10pm and ended up on the Next clothing website getting carried away lol

OhEmGee24 Tue 03-Jul-12 16:51:58

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 grin). 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.

littletommy22 Tue 03-Jul-12 18:26:53

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??

OhEmGee24 Tue 03-Jul-12 19:15:22

It's great grin 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 grin

ReindeerBollocks Tue 03-Jul-12 21:54:01

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.

hugglebug Wed 11-Jul-12 21:36:45

Hello all!
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.

littletommy22 Fri 13-Jul-12 10:07:19

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.

hugglebug Fri 13-Jul-12 14:58:24

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.

twojumpingbeans Mon 27-Aug-12 20:15:44

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. thanks

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...

morethanasong Tue 16-Oct-12 10:11:14

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.

morethanasong Tue 23-Oct-12 12:50:06

Anyone? sad

littletommy22 Thu 25-Oct-12 22:47:48

Hi morethanasong
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?

twojumpingbeans Sun 28-Oct-12 12:27:06

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.

littletommy22 Sun 28-Oct-12 18:12:25

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

MissLivvy Sun 28-Oct-12 18:46:53

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

littletommy22 Sun 28-Oct-12 20:03:30

thats very good advice MissLivvy xx

littletommy22 Tue 30-Oct-12 19:50:18

tonight (tuesday) on BBC3 at 8pm, love on the transplant list

morethanasong Wed 31-Oct-12 19:19:18

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!

twojumpingbeans Thu 01-Nov-12 07:21:18

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

morethanasong Thu 01-Nov-12 09:56:20

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

morethanasong Thu 01-Nov-12 10:00:38

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.

NettleTea Fri 14-Dec-12 14:40:17

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.

littletommy22 Sat 27-Apr-13 01:11:25

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

NettleTea Sat 16-Nov-13 13:11:55

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.

morethanasong Mon 25-Nov-13 14:34:44

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!

scoobydoo88 Sat 25-Jan-14 08:18:32

I'm 25yr with CF. I have two healthy boys aged 5yrs and 2yrs.

I'm free to chat x

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