Cystic fibrosis

[Rosa17]

HiI was diagnosed with bronchiectasis at the beginning of the year, at the time it was mentioned i have a mutated CFTR gene, which I assumed meant I was a carrier. My daughter had CF in the 80's. I've just been to the CF clinic, i thought it was for gene studies , and was gobsmacked to be told I have this - at my age!!!! And I'm not exactly a skelf (I struggle to lose weight). I feel my world has been turned upside down, back to front and outside in!!!!

[Swizzy]

Yes quite a shock I suppose but as your daughter had cf probably to be expected. The good thing is that you have been living with it quite happily for a lifetime and are obviously at the very mild end of the spectrum. Now you will be entitled to all the cf treatments and services.. I have had severe bronchiectasis all of my life but no cf gene has ever been found. Every time they test I pray that one will show up and then I will get all of the treatments which I am denied.Now that they know that you have a gene I hope that you will get all of the treatment that you may need to keep your quality of life a good one.

[Rosa17 in reply to Swizzy]

Hi SwizzyYes, the CF team are fantastic and I am lucky to have them now. I also feel privileged to get to my age, I'm at least 6 times older than the children I knew who had CF. I am still in a state of not believing I have this, as as you said I have been relatively healthy, and I keep comparing myself to the children I knew, I think I'm feeling guilty. I hope you get the help and support you need, as everyone with health issues should have access to it. Take care Xx

[Swizzy in reply to Rosa17]

Don’t feel guilty, feel lucky that you have discovered this and will get all of the help that you need. Also, with your experience of cf in others you are in an ideal situation to help and support others, if and when you feel able to do so. I think that you will find some on this forum who had a cf gene found later in life.

[Rosa17 in reply to Swizzy]

Hi Swizzy, I am going through a plethora of emotions at the moment , but know everything will settle and I can just get on. I will probably get back into CF work at some point. X

[Swizzy in reply to Rosa17]

Yes when the boat stops rocking you will come to the conclusion that you have been living happily with this gene for all of your life and that nothing has changed except that now you have people to look after you and the drugs that cf patients can access should you need them. When we are given a ‘label’ such as cf or bronchiectasis it can make us feel that we are now different to how we were before and will suffer more challenges but actually we are not. I am sure that as you wake up every day, feeling the same as you did the day before you will breathe deeply and relax. Just remember to manage your cf bronch symptoms which, with your experience, I would not dare to go over with you.

I do hope that you feel better soon and you are very welcome to a community where every member knows only too well what it is to feel like you do now.xxo

[Rosa17 in reply to Swizzy]

Hi Swizzy, thank you. you are so correct, it's just a word, a label.I'm the same person. I do have bronchiectasis and fully intend to stay with this forum, xx

[Rosa17]

Hi Healthywz -thank you for your kind words, i am a bit all over the place at the moment! I cannot say how highly I respect and appreciate this forum, and the help I have been given from everyone. And it is good to have a medical team I can access, which is all new for me.

[Dottie11]

Hi Rosa , Sorry to read what you are going through . There is a condition called A Typical CF. A milder form. Some are indeed diagnosed later in life. Have you had sweat tests ? Mine were low positive with only my first fifty most common genes tested. I am managed as Bronch and coping well. Good luck. This site is excellent plus the CF site. xx

[Rosa17 in reply to Dottie11]

Hi Dottie, - no it was diagnosed by blood tests taken by a consultant at the bronch clinic. I wasn't aware of the milder form, that makes sense, I know I have 2 cf genes, but nothing more. Ill ask next time. I'm glad you are keeping well. X

[Dottie11 in reply to Rosa17]

Yes I had no idea either . I saw a CF Dr and he explained everyone just thinks its the severe type but the milder tend to be diagnosed later. They sound like they are doing a very good job and very pleased to read. 2 cf genes makes you a milder rarer that rare. Mind when saying mild the symptoms can still be very tough. Well done that hospital. Wishing all the best and take care. xx

[Patk1]

I hope u get treatment to slow progression of bronchiectasis+ other symptoms x

[Ern007]

Hi - I have not got bronchiectasis or CF - I have COPD/Asthma and assorted Heart Goodies. Somehow I managed ok.

I can inagine your emotions would be in a WAZ and you being gob-smacked with a diagnosis of CF.

I and others for different reasons have felt " your world has been turned upside down, back to front and outside in" .

I felt like that one day when I went for a test, and was told I had cancer. That was in 2021. I travelled home in a daze.

Others on here know more about bronchiectasis and CF .

All I can contribute is - That is so natural to be "gobsmacked" and wonder why your world as flipped. these emotions get better.

I wish you well and hope CF is mild and stays mild.

[Rosa17 in reply to Ern007]

Hi Ern, thank you for your kind reply. Now I am aware that there is 'mild' C.F. I can understand it a bit easier. Yes, we have different health issues, but support each other. Take care 🙂

[MoyB]

Sending virtual hugs! ((((( ❤️ ))))) xx Moy

[Izb1]

Well done to the hospital for testing you, you will now get the right treatment. I don't think I have ever been tested my bronchiectasis was diagnosed via ct scan . It sounds like you don't have many problems with it and hope this continues x

[Dottie11 in reply to Izb1]

They will look at family history, type of bronch, other symptoms, and gut symptoms also. Then sweat tests and and genetics also used. xx

[Izb1 in reply to Dottie11]

Well I have never been tested then , although I don't think I have his and am lucky my bronch is mild x

[Dottie11 in reply to Izb1]

That is good you are mild. I think if we have others in familiy with CF will go down that route.xx

[Alberta56]

I'm not surprised you've been bowled over, but Swizzy's words of wisdom are very comforting. The diagnosis gives you all the more reason to live life to the full, as far as you can, and have small treats (or big treats) every day. It's good to know that your medical team are so on the ball. Best wishes. xxx

[Rosa17 in reply to Alberta56]

Thank you Alberta x

[Nula2]

Hi Rosa, hopefully you will now get all the help you need🤞🤞. Sounds to me (reading Swizzys reply) like we should all be getting that level of care anyway. ❤️xxxx

[Rosa17 in reply to Nula2]

Hi Nula, I totally agree, no-one should have to fight for their health care, unfortunately this is more often the case than not xx