Hi everyone,
Update for you.
The last couple of days have been hell but I am beginning to see some light now. I went to my cf clinic yesterday and was so nervous it took a good 10 minutes for me to stop retching and panicking and actually go in. I must have looked like hell because my dietcian saw me and took me straight in. She absolutely wonderful and had both NG tubes (tube that goes down your nose into your tummy) and PEG tubes (goes straight though your stomach or intestine )to show me. After explanations of all the options and me and mum asking lots of questions, we have decided to try Ng feeding first of all which I am much happier with. I will go into hospital for a week or so to learn how to put the tube down (I will do this myself) and see how i tolerate the feeds etc.
This method doesn't work for everyone but is less invasive and feeds can be changed around etc to try and find something suitable for me. If this option didnt work then a PEG would probably be the next logical step.
My liver dr has said that my liver shouldnt stop me transplant wise but that placing a PEG with my enlarged liver, spleen and varicose viens in that area would be risky and not to be taken lightly. He is prepared to do the procedure himself if necessary (he knows my probs and actually wrote the clinical guidelines on the procedure so i am in good hands). While its still a daunting prospect I feel much calmer now and am trying to think positively about it all.
I can honestly say the support I've had from so many many people (most of which dont know me) has made the worst of days bearable. SO many people from this blog, and the cf forum have come together to show support and share experiences with me. I cant thank you all enough, one lovely lady sent me photos of her own PEG so I could see one for the first time and another sent me a video on how to place an NG tube both of which are invaluable. It truly shows that something small can make such a difference to someone else and give them a reason to keep going. You are all stars and have made me strong again.
I'll leave it there for today as I am very tired from all the worry and running around. I will update next week when I should have more idea of a start date for feeding.
Love to everyone, itnot over till its over and i am continuing the good fight xxxxxxxxxx