what to do?

I have Bronchiectosis from having the CF gene, so things are a bit bad not just with the lungs but with my; colon and other things also. So i went last week to see my rectalcolon specialist last week who said that I need an op for a prolapse but because of my lungs and the CF genes that he is not happy to put me under anisthetic because he is afraid that it will make my breathing worse or even that I might not come through the op. I'm 44 in a lot of pain weekly and have a lot of family responsibilities oh yes and i'm moving Help!!!

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  • He Em

    My heart goes out to you sweet - you have so much to cope with. So sorry you are having to have surgery. Has the surgeon or anaesthetist mentioned doing the op with spinal block? I had an anterior prolapse done this way because of bronch. Has he given any other options if surgery is not possible?

    Hope they come up with some solution for you Em.

    Please let us know how you get on.

    Love C xxx

  • Hi C thanks for the post, I was told to go home and way things up,, quality over quantity and if i want to go ahead with surgery then i will be able to see the aneasthatist to discuss this but thanks now i feel more informed,xx

  • Hi Em

    If it were me sweetheart I would want to see the anaesthatist before I decided to go ahead with surgery. He is the person who will have the expertise with regard to the options which are available and will have had experience before with folks having the same surgery as you and with similar lung problems. He may well decide a spinal block is an option. With the greatest of respect to the surgeon his job is the mechanical bit, your anaesthetist has the responsibility of keeping you safe, taking into consideration your lung condition.

    Presumably you are under the care of a cf consultant, and I am wondering if he/she has been involved in this.

    I'm going from my own experience of having a gall bladder removed for which they introduce gases which could cause problems for us. My surgeon arranged for me to have an out patient appointment with an anaesthetist before he agreed to go ahead, liased with my cf/bronch consultant, who took me in before surgery and had a bed booked on hdu, which luckily we didn't need. After the op the care was then back with my resp cons who decided on my discharge after we had discussed it.

    I feel you should have and deserve a more inclusive approach from other medics.

    You might want to contact you surgeon and request to see the anaesthetist before you make a decision. Also ask if he has liaised with your cf consultant as you need his/her input before you feel able to make a decision.

    You have to be your own advocate, although living with cf I'm sure you already know this Em.

    Best of luck - stay strong.

    With lots of love

    C XXX

  • Hi C

    Thank you, this is really helpful have already decided to get an appointment with the aneasatist to find all options and yes i'll stay strong :)

  • Hi Em. Me too facing an op for a hernia - and doc said I wouldn't need and should not have a general anaesthetic. not sure what the options are. Hope you keep us up to date with your news. Best wishes x

  • Hi Julie Kay.

    Yes they always seem to run a mile when they find out that our lungs are damaged...can't work out if it because we scare the hell out of them medically or financially they are scared we'll all sue them? Anyway i hope to find an alternative to the dreaded aneastetic....you never know.....Good luck to you too x

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