Parents with CF?

[suenorth]

Any other adults with CF out there? CF chatrooms seem mostly for teens. Just wanted to see if there are any more of us on MN.

No have had pretty bad time. Had a couple of good weeks round Christmas which was good, but since have been not good. Consultant is wanting me to go in for IVs soon, but our hospital is in a state atm and saying emergency admissions only, there is MRSA and norovirus flying around so prefer not to anyway. Waiting to see if things improve on the oral abs, but bit fed up of feeling crap and not being able to get out, haven't even done school run for last two weeks as breathing so bad, but hopefully can do it this week. Anyway enough moaning. How are things with you?

Just reviving this thread to see how all the CF/bronchiectasis ites are - petitmaman, how are you?
I'm in a bad spell right now, but had a good month pre that, so can't complain. My main problem is the prednisolone, it's giving me huge insomnia this time so have not slept for 3 nights now properly. any advice on this? It does have the advantage of helping me to er...breathe, lol.
Hope you are all doing ok.

madhairday

your first person i herd from who has the same as my dd not heed anyone else on here have it before

Hi Sue North. Just joined MN and I'm just like you!! A 37 yr old mum with cf. I think this is the first & only time i've labelled myself under the disease. I too live a very normal life but i don't feel guilty about it. I think we owe it to those who can't to get on with it & enjoy it as much as possible. I don't know about you but it tends to make me alot more chilled out in life as I don't tend to get too worried about lifes general ups and downs. I think its so important to let people know that like most diseases there is a scale of severity and you can get on and lead a relatively normal life. Hope mums with kids with CF are comforted by this! And I never look at the CF websites!!!!!!!!!!!

Hi Phoenix, sorry only just seen your message. So does your dd have bronchiectasis? I'd recommend the site www.bronchiectasis.info - it's got loads of great information and support about the disease, there are quite a few parents of bronch. children on there.
Hi crouchender, nice to meet you. I am also 37 and with bronchiectasis (same treatment as cf for the lungs.) I have it pretty severely so it does effect my life a lot but I also try to have an upbeat attitude and get on with stuff, you have to don't you.

hi sorry not check on here for a while Yes she does madhairday they thought was cf at first .Yes it affects DD pretty badly to physio ,iv antibiotics , nebs o2 on bad times were planning on getting portcab done to as her veins are pretty shoddy . as she has immune defcieny so picks thingsup even easier and goesstaright to her chest she also has A1Ad(inhertied form of emphysema) but e stay up beat and shes cheeky bossy cheerfull little thing

will go check the site out thank you

Hello

I am 38 and have been diagnosed with CF after years of illness and a terrible pregnancy which I believe resulted in lots of my lung damage as I wasnt on any treatment. Think there is still a lack of knowledge with GPs that adults can have previously undiagnosed CF.

I also have 2 children, age 10 years and 18 months. Its hard. This was meant to be the best bit of my life and its been difficult.

Waiting for them to be screened.

Trying to keep things as normal as possible too.

Hi everyone,
thought this thread was gone for good, sorry.
i am v well at the moment and trying to keep it that way. have new consultant who has put me on loads of new medication and phsio regimes etc so am having to work at it but it is worth it.
SPACEPANCAKES, what were the results? hope they were ok.
MADHAIR DAY how are you? are you on face book for more of a chat?

Hi petitmaman, I haven't been on here for ages, lost the parents with disabilities thread and summer happened! Hope you're still in a good spell, sounds like your consultant is looking after you.
I am doing OK. I had a reasonable summer, with just a few chest infections which were milder and some pleurisy, but generally kept going and even did some long walks on holiday. I'm starting to dread the winter a bit, it's always worse as you know, and already the gunk is increasing. I have a new physiotherapist who is lovely and is exploring some new ways to help me. Are you having the swine flu jab? I'm getting conflicting advice - consultant says I should, as does one gp, other gp says don't touch with a bargepole ... aaagh. Think I will have it, it's due to be coming in soon I think.
Hope everyone is doing ok, would be good to hear from you all.
petitmaman if you CAT me I'll give you my FB details.

Just bumping this. Petitmaman hope you are OK as haven't seen you around for ages. Anyone else out there with CF/Bronchi?

Hi, I'm a new Mum with bronchiectasis, and although my health has always been pretty good I have been going down hill since I had my little boy 20 months ago. I have had pseudomonas and treatment with nebulised antibiotics and iv's. I find it tough to stay positive .... not knowing what the future holds in store .....

Would love to hear from anyone else going through this, and how they are coping???

Hi Joeysmummum, I'm sorry I didn't see this before, I should visit this topic more. Hope you are still around. Have they managed to eradicate the pseudos? I managed to get rid of mine last time with 6 months nebbed colomycin and cipro, so it is possible.
It is hard to stay positive sometimes with this disease, especially with young children too. But it's important to keep as positive as we can, and I find support groups so important for that. I am on www.bronchiectasis.info and it's a great community that really supports and understands each other.
So...I don't always cope...but I keep going. Do you have support from your family/friends?

Hope to hear from you soon. take care.