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.

Hi Sue,
I don't have CF myself but a good friend of mine does. He's 32 and is about to become a father for the second time after ICSI.
He was the first man with CF in Queensland to father a child.
He has occasional admissions to hospital with chest infections but is pretty fit otherwise.
Good luck with your CF thread

Thanks! Have to admit I feel a bit of a fraud putting this under 'disabled parents' since all I really have is a bad cough - but wasn't sure where else it fit. CF patients aren't encouraged to meet (risk of giving each other infections) so we can't even chat at clinic appointments. It can be a bit isolating.

Just re-read that and it makes me sound a bit depressed which I'm not

what is CF?

I think it's cystic fibrosis.

hi suenorth,i havent got cf but dd has.ive kept clear of the cf trusts chatrooms tbh.i dont know what the adults with cf ones are like but the parents ones are full of people being morbid!i also find having a child with cf very isolating,so i can sympathise with you there!dd has been really ill,and is having longer physio sessions now,so we hardly get out.and i dont even take her to toddler group incase there are any other kids there with coughs or colds as when she gets ill,she gets whatever it is really bad.and going to clinic is hilarious!you'd think everyone had something highly contagious for the way we sit in the waiting room miles apart and shouting at each other!!

Thanks for your message Buffy. I hope your dd's situation eases a bit so you can all get out and about a bit more. I know I'm so lucky to still be in such good health (comparatively anyway) and I suppose that's why the cf chatrooms aren't really for me. Reading them I just can't help feeling sad and guilty that all these lovely kids are so poorly while I'm getting on with a 'normal' life.

I should be (and indeed am) grateful to not be a normal cf patient, but just feel a bit out on my own: my friends don't really understand anything about it, and I don't really understand much of what other cf patients are going through. I think that's why I was hoping to meet someone like me on MN.

Anyway, all the best to you and your family Buffy. Hopefully with the weather getting better (presuming you're in the UK) there'll be fewer colds around and your dd can mix with the others more easily. Good luck.

hi suenorth,sorry theres not been any other parents on here for you.dd is ok atm.shes just becoming a little madam,you wouldnt think she had anything wrong with her to look at her!shes into everything and is much more of a handful than any of my others were!!have you tried looking on the american cf chatrooms?like i say,i steer clear of them,but you might find someone on there.

The CF trust has a really good and active forum, it is broken down into sections. Teens, Adults, Parents, Partners, Fund Raisers.

There are always plenty of people on there talking about babies, and quite a few mums who've had kids with a mix of health levels.

SueNorth I've actually found far more practically 'normal' cystics who've had children than poorly people like me. Just log on there and hopefully you will find some people to keep you company, and if not you can get in touch with me.

sue? are you still there? i am a mum with cf. would love to chat. seeing as you feel like a fraud putting it on disabled parents sounds as though we may get on. only just seen this thread sorry.

Hi Sue and petitmaman
don't have cf but have cystic bronchiectasis which as you prob know is what most cf sufferers get in their lungs, so can sympathise with the difficulties of being a mum with this disease. Have to do the whole physio, IVs, meds routine. Have been pretty poorly lately with pseudomonas and not coping too well but keep going with 2 young children. Hope to chat more, it can be pretty isolating, I go to a cf clinic for it but like you can't associate with others there.
hope you are ok

clearly we are all rubbish and come too late to this thread! Hope you are feeling better mhd. For the 1st time in my life i am clear of pseudomonas atm. sorry if i passed it to you! hope you are feeling better soon. keep in touch. x

Hi petitmaman, good to hear from you. Great to hear you are clear of the pseud monsters atm! Are you on constant eradication treatment for them? A,m on nebbed colomycin and cipro and atm thankfully showing clear, yaay. Hopefully keep that way for a while.
Hope you are feeling ok in general, be good to chat more x

neb colomycin too. how are you feeling now? do you have good support from family etc? do you do the whole "oh yes i am fiiinnne" thing when people ask . even when you can barely breathe, are on ivs etc?
take it you do ivs at home? my dd1 (6yrs) is really good about it. just knows it is 'special medicine' and not to touch it. would be interesting to find out how other people handle that.
have to confess to being totally ignorant. i havent heard of cystic bronchiectasis (note to self: i will no longer be mildly peeved when people i talk to have never heard of CF!)is it also genetic? is it 'just' the lungs it affects?

Hi, thanks for replying
I am lucky to have a great supportive dh and parents/pils, they all rally round when I get bad and take over, makes it all a bit easier, although I wish it didn't have to be the case. Have recently started getting DLA which really helps too with stuff like getting a cleaner (can't clean properly as lungs close up) and good bedding and transport and all sorts, so v thankful for that.
Yes I do IVs at home. It has been a bit of a fight actually because our NHS trsut had funding issues and wouldn't release funds for traiining bronchiectasis patients, only CF, but I with my consultant's support fought this, saying for eg I have 2 young children, being away 2 weeks every few months is not on, and also it frees up a bed for them, and I am perfectly capable of administering my own Ivs thankyou very much!! They finally came round and since then have let me home after 3-4 days in to be sufficiently strong to do it. Like you I tell my 7 and 4 yr old it is mummys special medicine, they are so used to lots of that being around lol, and leave it alone. They are great when I am doing IVs and v gentle with me, after my 4 yr old jumped on me one time and almost yanked out the long line, ouch! It is soooo nice to be able to do it at home. Haven't had them now for 4 months yaaay, hoping it lasts a bit more.
Bronchiectasis is not genetic, it is caused by different factors, mine was childhood pneumonia. Causes scarring of the lungs and disfunction of the cilia similar to CF and can be mild, moderate or severe, mine has now turned severe unfortunately and I have cysts and scars in all the lobes across both lungs. lovely. It is the same as CF in that infection can strike easily and can't be fought off in the way normal lungs would. It also affects sinuses but not the other CF problems. I so feel for you and others with CF, it is so debilitating, I get a nasty taster of it and it's just horrible.
Well I'm going on here, but it is good to chat. How are you doing right now?

Oh yes I know well the 'I'm fine' thing, I just say it automatically even if I'm feeling like crap, but dh doesn't let me get away with it, says 'no she's not, she's shit', lol, bless him.

Take care and chat soon

i am doing good at the mo (touch wood) as just finished a course of ivs.
Have you ever found anything to help your sinuses? i had op about 7 years ago to clear them but only worked for a couple of months.just take neurofen at the moment but doon't really like doing that every day.
my dh does the whole oh yeah she s fine thing to the pil. sometimes i think its coz he really doesnt have a clue. my mum sees straight through it though.
I had a portacath fitted about 10 years ago now for ivs. no veins left for longlines so had to have canulars so would have to go in about every 24 hrs to have it re sited. was against it to start with but i have to say it has revolutionised my life (dont tell my consultant he was right!)
am ok on the whole but not as well as i used to be (such is life) starting to vaguely mention heart and lung transplants but also in a weird way hopeful . chat soon. x

Glad you're ok, must feel strange starting to think down the transplant route tho, have they given you a time frame for that?
I'll poss be having a portacath at some point, long lines are ok for now and sooo much better than the awful canulars which I just hate.
I've not really found anything for the sinuses, just keep taking painkillers, far too many really, I get so much chest pain too and have to take co-codamol as that's all that will touch it. Makes me v v sleepy tho. ho hum.
Sorry to hear though that you have deteriorated over the years - me too. it's hard with these diseases that are progressive. can get you down. Are you on DLA or IB?

take care. x

hi again,
sorry for the radio silence....caught a bug grrr.....
dd has temperature and sore throat for 24 hrs and get over it. next day i wake up with sore throat... nearly 2 weeks later, 2 courses of antibiotics, one of steroids and now something else as antibiotics have given me oral thrush and still not that well. typical to be summer hols feeling v guilty as i had so much fun stuff planned. never mind. its just a lot of dds friends mums dont know re cf so i sound a bit silly saying "oh yeah, i have that sore throat thing" they must think that i am the worst hypochondriac!
dont know if this is normal with progressive diseases, probably, when i am well i think oh i have years yet... then bug hits and you start thinking well, this could be the start of the slippery slope.... so no real idea of time frame re transplant, maybe 1 to 3 years??
have just started getting dla. tried to go back to work after dd 2 (worked pt after dd1) but was just sooo exhausted all the time (hypochondriac thing again!) just wasnt worth it. thats when i applied for dla. tried for IB but didnt qualify as hadnt been working enough hours. v v frustrating as had reduced my hours due to ill health to start with but didnt want just to go on benefits so had worked out the minimum i could survive on if working.iyswim. should have just gone on benefits to start with, turns out you have to know how to play the system....
anyway, hope youare well.
take care. x

Hi again

Our situations sound so similar. I also tried to go back to work after ds but kept catching bugs (worked in a nursery which didn't help) and like you the exhaustion hit. My gp and consultant told me very firmly that I should never consider paid work again, and I am unemployable now anyway, no employer would take me on with the amount of time off involved. It's hard isn't it when others don't get it - know what you mean re the hypochondriac thing, no one reallu understnads unless they are close to you.
I also applied for IB but was turned down because I hadn't paid enough stamp, I think the system here is so flawed - I had taken time off to look after my babies - obviously not of any value in the eyes of the govt.
At least tho now I get DLA so we can cope, before I was on no benefits and just scraping by on dh's money which is not great. I must say I've felt v let down by the system. I put a lot in for the time I was able to work before the disease progressed too much. Ooops, this is turning into a bit of a rant!! sorry.
I'm sorry to hear you've been ill again, its often like that isn't it with bugs the kids bring home. I've also been on more abs the past two weeks due to chest getting bad again and couldn't drain it all, felt lousy. But now have thrush on top of it, aaagh. Haven't had to resort to pred yet this time tho thankfully.
would love to chat more, are you on Facebook?
x

Just wondering how you are petitmaman? Haven't heard from you in a while?
I've been pretty lousy, on the full abs and steroids and waiting to see if my consult admits me next week, hoping to avoid it as do feel better, but he said I had to be fully better...sigh. Winter is here!
Hope you are ok.

Sorry to hear that, hope you are better. i am ok at the mo' (touch wood) drs trying lots of new nebs etc which seem to be working . recent dramas though as lack of sounds in r lung. sent for ct scan found, totally seperate, miniscule blood clot on lung. super. now on anti coags too. am on face book. take it you are too? is there an easy way to find you on it? take care

Hello,

I'm not pregnant yet, but desperate to start trying. However, like you chaps, I have bronchiectasis. It is only mild, but complicated by very severe asthma and an immunodeficiency. I take salbutamol/atrovent nebs 4 times a day, plus 12 other medications, including steroids, antibiotics, mucodyne etc etc. I'm also admitted about 3/4 a year with a severe asthma attack (usually treated in ITU) brought on by an infection.

Although this sounds bad, I am definitely more stable now than I ever have been, and I do feel well enough now to cope with a baby. Between exacerbations my lung function is great - c. 80%, although it does drop rapidly and I end up dependent on oxygen for a while.

How did you go about getting pregnant? Did you talk to your doctors first? Did you have to come off many of your medications or was it alright to continue on them? I do feel stable now, but I don't know how stable I'd be if off them. I just want to fall pregnant naturally, without discussing it with anyone other than DH, but I suppose that is not the right way?

Any advice hugely appreciated, and hope that you are both doing ok at the moment.

How did i get pregnant?! welll.... the mummy and the daddy have a special cuddle...
no, with dd1 she was an accident so no doctor discussions before hand but dd2 many negotiations with my consultant.but i am lucky and have known him for years and he is great so didnt have a problem with this, can understand why you so though.
i have cf so prob on different meds but didnt have to come off mine. Good luck and keep us posted!

How is it going WTT? I'm sorry I haven't been around for a while, been having a pretty horrendous winter. Hope the ttc is going OK - not much advice really except to say your doctors will look after you and take you off the meds that you can't be on, but make sure you take ones that are.
How are you petitmaman?

I am ok at the moment thank you. how are you? has it not been a good winter for you then?