Hi new member with CF

[Rainbow16]

Hi everybody

I have CF diagnosed 4 years ago after a lifetime of chest infections and frustrating GP consultations.

I have been reading with interest all your comments,advice etc and think this might be an invaluable place to visit.

😁

[Hidden]

Hi Rainbow and welcome you will find lots of knowledgeable good people here..I've no experience of CF but there probably will be fellow sufferers? tor engage with,take care Ger

[Katinka46]

Welcome to this forum. There are many here with non-CF bronchiectasis. And they will offer help to you. I am not sure that we have any CF patients here. But there will be some aspects of your condition which will be similar to others.

All the best

K

[Rainbow16 in reply to Katinka46]

Hi K

Thank you for the welcome.😁

CF is only affecting my lungs at the moment so do as you say think I will find similarity here on these pages.

Before the CF diagnosis my problems were classed as bronchiectasis which I can see appears here a lot.

My view is that any tips regarding lung preservation is invaluable with the way CF affects me.

X

H

[Hacienda]

Just to say welcome Hun, You will find lots of friends here who will Guide you on CF, Stone comes to Mind...Just ask Away. I have COPD awaiting Lung Transplant. A few of us here on the List. Love n Hugs, Carolina XXXX

[Rainbow16 in reply to Hacienda]

Hi Carolina

Thank you for the lovely welcome and will enjoy getting to know you all.😊xx

[Hidden]

Welcome Rainbow i can't be much help don't really alot myself lol

[Rainbow16 in reply to Hidden]

Thank you for the hello 😁😁

[Caspiana]

Hello Rainbow16 .

Welcome to the forum. Very pleased you found us. 😀 xx

[cofdrop-UK]

Hi Rainbow and a very warm welcome to you, although really sorry to hear of your health issues.

It really does make me so cross that when you have had exacerbations all your life, you have been so short changed by your GPs - unacceptable.

As you now have a diagnosis of CF I am hoping that you now have a respiratory consultant with a special interest in CF within a CF unit. Just wondering if you are in the UK.

I have had non cf bronchiectasis since babyhood in 1948 and I am very lucky to be under the care of a team of consultants with a special interest in CF and non CF Bronchiectasis within the Bronchiectasis Service. Had you presented there with Bronciectasis you would have been tested for CF as a matter of course. Within our CF unit, as with many in the UK, CF patients do not mix with one another and have private rooms and do not mix at out-patients.

I am so pleased for you that you don’t experience some of the other issues associated with CF.

Look forward to seeing many more of your posts.

Love cx

[Rainbow16 in reply to cofdrop-UK]

Hi Cofdrop

Yes I was only tested for CF as my twin sister's daughter gave birth to a little boy who tested positive with the heel prick test they now do! I have also suffered with repeated nasal polyps which is another symptom they could have picked up.

I was in Leeds up until March and have now moved to a beautiful small Scottish Island with fantastic sea air on the West Coast to improve/slow down my condition.

I am now under the Glasgow hospital who seem to have slightly different views of treatment although still carry out the segregation of patients etc. Cannot comment as its too early although the care and the staff are ever so nice and seem to know their stuff too.

As my twin is identical she also has the condition too so I suppose we have our own little support group

Yes I am so lucky to not have the other symptoms relating to CF and do count my blessings every day. (Probably wouldn't be here now if I did)

You all seem like a lovely bunch of people and because my problems are lung related believe I will pick up advice from here.

Thank you again

H x

[cofdrop-UK in reply to Rainbow16]

My goodness me what a horrible way to find out but fortunate you did. I hope your nephew is doing well.

I am treated within the Bronch Service in Leeds and the consultants are very proactive. There are lots of respiratory consultants here but not all have a special interest in cf/non cfbe and I can honestly say in my lifetime I have had good, bad and indifferent cons. Folks are very lucky now we have the internet. I wish you had been part of our family when you did live in Leeds as we could have pointed you in the right direction, as you would have been tested earlier.

Well Rainbow we are where we are and I hope the fresh air is of great benefit to you..

Cx

[Rainbow16 in reply to cofdrop-UK]

Hi

Yes shame I didn't know about this site as I feel sure it would have come up.

I was treated at the chest clinic at the LGI for many years and the consultant I mainly saw moved into the CF field and even he didn't suggest a test.

But...I do now have correct care and the team in Glasgow seem good.

I love living here and because it's a small place the A &E is 2 mins away too so my care I think has improved.😁

Hxx

[cofdrop-UK in reply to Rainbow16]

Shame on him/her. Gosh the chest clinic building is still there but hasn’t been used as a hospital for many years now. The CF unit is at Jimmys and the out-patients is at Seacroft, which was my second home as a child. Most of the respiratory stuff has moved from the LGI, although I believe there is still an out- patients there.

It does sound as though you have a good QOL living where you are and I am glad you now have good care.

Cx

[Rainbow16 in reply to cofdrop-UK]

The chest clinic I am referring to was at Martin Wing at the LGI which I believe might still be there although I did go to the old one on the corner which turned into Richer Sounds I think.

Seacroft was my CF outpatient clinic before I left which was a nice place to go. Only went to Jimmy's when I was ill and had to be admitted thankfully ( not the cleanest of places to visit when well)

[cofdrop-UK in reply to Rainbow16]

Yes I used to go there too occasionally as a kid but Seacroft was my home from home as it were. Yes it is some kind of IT or studio place now. I am so curious as to which consultant you had although you would have to pm me as we are not allowed to mention docs on site. I would be astounded if it was one of the ones there now. I am wondering if it was my last con who has now passed away. Just being a nosy git!

Cx

[Rainbow16 in reply to cofdrop-UK]

I am also a nosey git I think all the consultants I had were CF mainly although I suppose respiratory illness is a broad umbrella and ended up having a consultant that had moved over to specialise in CF who was really nice so who knows?

If they passed away at a good old age then no allmine have been quite young.

[Ramy22]

Hello.... how did they eventually diagnose you? Was that in Leeds or Glasgow? You’ll get lots of support here..... sometimes all you need to do is read!

[Rainbow16 in reply to Ramy22]

Hi Ramy

I was diagnosed using the sweat test to measure salt levels and a blood test.

😁

.

[Ramy22 in reply to Rainbow16]

Gosh.... what a shock! I’m glad you found out though! I used to live in London and I am sure my health would be better managed there... I am now in Leeds and am treated at the chest clinic at Seacroft. I have a real phobia of the LGI,created decades ago,and find it practically physically impossible to actually go there!

[Rainbow16 in reply to Ramy22]

Hi Ramy

I didn't even know there was a chest clinic at Seacroft and that was close to where I lived and went up until March.

My CF clinic was there but didn't realise it was also a respiratory clinic at other times.

I do agree with you re better care in a larger place as I feel that already after only 2 visits to Glasgow hospital although the air quality in London may have been poorer?

Sounds like you had a bad experience at the LGI and once that happens it can be hard/impossible to shake off.

[paul9298]

Can someone tell me what CF is?

[Hacienda in reply to paul9298]

Cystic Fibrosis Paul. XXX

[Casleo in reply to paul9298]

Cystic fibrosis

[Izb1]

Hi Rainbow16 and welcome to the site. Like you when I found this site it was like opening a window, the information you find on here is better than the hospitals as some of the doctors are not specialists and dont give the correct treatment. I was treated for asthma for years until they found it was bronchiectasis. So good that you have been able to move to a lovely scottish island that will do your condition the world of good, along with your mental health anc even better to have family near by. Irene x

[Rainbow16 in reply to Izb1]

Hi Izb

Thank you and yes I believe that often people with the conditions know more about what does/doesn't benefit and have felt I am presribed far too medications without any thought going into it.

I am working at the moment with my new consultant towards coming off certain drugs which is refreshing.

Hx

[Hidden]

Hi Rainbow,

Not a CFer myself, but I’m a full-time carer to my 10 yo who was provisionally diagnosed with CF antenatally due to echogenic bowel on the 20 week scan, and the ex and I coming back as carriers a week later. It was confirmed via cord blood genetics at 5 days old, no known history in either family prior to her. She’s had a fairly rough ride since the get-go, and it was a steep learning curve for the first year, but it’s ‘old hat’ these days and we just get on with it. Do you mind if I ask how old you are and what mutations you have? Late diagnosis is still relatively common with some mutations, although I’d have hoped with a history of recurrent exacerbations you’d have been picked up long before now. I’m assuming you’re pancreatic sufficient?

Take care,

Charlie

Single dad to E

[Rainbow16 in reply to Hidden]

Hi Charlie

Nice to hear from you.

I am 53 years old and was only diagnosed as I said recently.

I have the common CF gene think its F908? but tests carried out by Leeds have been unable to show the second. At my last visit to Glasgow's CF unit the consultant took my blood and is going to attempt this again so I will let you know if successful.

I think both my parents must have been carriers too although my Dad ( deceased now so unable to check) was plagued with polyps so maybe he had this also. I only have the one daughter 18 years old who does not want testing and doesn't seem to show any signs of having CF so can't blame her really.

As regards the rest of my organs they seem to be fine and yes I am pancreas sufficient thankfully. It could have been much worse I know.

You sound like although you have your hands full you are coping very well which is what your little girl needs

Hazelx

[Hidden in reply to Rainbow16]

I’m glad to hear you’re doing ok. DeltaF508 is indeed the most common mutation - around 90% of the UK CF community carry at least one copy of it, and there are a lot of new treatments in the pipeline for those that have it as a result (drugs like Ivacaftor and triple therapies designed to improve lung function) although there are issues over cost between NICE and Vertex who are creating them. I believe the initial screening panel tests for the top 28 mutations found in the UK, so it’s entirely possible not to pick up a second mutation from it if it’s much more rare, and there are now 2000+ known mutations of the CFTR gene. In some cases a second mutation still isn’t picked up even with a full genetic search, but as you’ve already found you’ll continue to receive appropriate treatment even if this turns out to be the case given that you clearly have symptoms. My daughter has mutations that are in the 28, but both are rare within that - of the 10,000 in the UK with cf, only 30 other people carry one of them, and the other is shared by around 100.

Both of your parents would have to be carriers (at a minimum, it’s possible your dad could have had the disease, although polyps aren’t unique to cf) for you and your sister to have cf. With regards to your daughter...the decision to have carrier testing is entirely down to the individual and I would never, ever presume to tell anyone otherwise. But, as someone whose child has already spent 2.5 years of her life in hospital, takes 25+ tablets, 6 nebulisers, 2 inhalers a day just to try and stay well, and quite often has a lung function in the 60s despite my best efforts, I do very strongly feel that where there is family history then cascade screening is extremely important. CF is a spectrum disease and highly individual, even identical twins can have very, very different disease profiles, and just because one person is relatively ‘well’ with cf doesn’t mean another child within the family will be. I would give my right arm for my parents to get tested if only to inform the wider family which of them could potentially be carriers and enable informed choices for having children, but neither will do it. Both my half-sisters have been screened though, the youngest off her own back last year as soon as she turned 16, and that was as a direct result of living with us and seeing the reality of CF when at the more severe end of the spectrum. You probably already know this, but even if it came back your daughter is a carrier, and with your diagnosis the odds are 1 in 2 that she will, the only thing that means is it would be sensible to screen a future partner she intends to have children with. If he came back negative, then that’s the end of it, but if he came back positive it would enable them to make an informed decision rather than having a child and simply hoping for the best. I wouldn’t be without E for the world, but I do wish I’d known cf was a real possibility prior to having her; we get on with it, but there is no denying that her life at times is incredibly hard, and we opted not to try for any more children after spending 6 of her first 12 months in hospital. I apologise if I seem ‘preachy’ or am telling you things you’re well aware of, and I hope I haven’t offended you, I just struggle to understand anyone with family history not finding out their carrier status having seen my daughter struggle so much.

I’m not a fan of the CF Trust (long story, and partly why I loiter here), but they do have a forum. I haven’t been on there in a long time now, and the parents/carers’ section is dead these days anyway, but there seems to be some activity in the section for adults with cf if you wanted to try and reach out to others. There’s also a number of UK Facebook groups if you’re on social media, and those are very active. If I can be of any help at any point or you just want to have a chat though, feel free to drop me a line. Good luck for finding your second mutation, too.

Take care,

Charlie

[cofdrop-UK in reply to Hidden]

What an excellent reply Charlie. Your experience will be invaluable to Rainbow but I am so sad you and your dear little daughter have had and stil have so much to deal with.

Wishing you both well and healing hugs to precious E.

Love cx

[Angel1049]

Hi Rainbow, I agree with you this is an invaluable place to visit. We help each other sort things out, finding what needs we have and accessing those through orher’s experiences!

Greetings from Florida! 🙋🏼

[cofdrop-UK]

You and your daughter might find this (explaned by Charlie) helpful. The diagramme is easy to follow. Apologies if you know this but it may be of help to someone.

cff.org/What-is-CF/Genetics...

Cx