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

Its just a short post. It has been the worst day of my life. My weight was up at clinic but only a very small amount.
My tx dr has said that I cant wait anymore I need to either be fed by PEG feeding directly into stomach ,(or nasal gastric) or else I will have to be taken off the list and in his words, “live what time I have left”. I haven’t stopped crying since and my head is just unable to think.

I am absolutely petrified of having a PEG. I am bad enough with having a canula in my hand but the thought of a tube into my stomach just makes me physically sick. Plus my liver disease makes it risky and may not even allow it. My liver dr has already said that he would not want to take this route, but my Translant hospital say if my liver is that bad then I would be taken off the list anyway.
I would much prefer a nasal gastric tube but my hospital seem wary to do this as they have no one to train me to do it.
I havent stopped crying and this is the most difficult decision I have ever come to. A PEG is my worst nightmare but am I ready to give up the fight? I dont think i am.....but dont know if i have the strength.
I will be going to see a dietcian and stomach dr on friday and will try to let you know then.
At the moment I've not got much faith in prayers but would still appreciate them.
x

Can't believe its been this long again, no excuses its just hard to write when I havent been up to very much recently.
I've not been up to much other than the usual, watching tv/films, uni work, medications, crafting that is the norm. It was my mums birthday last week followed by mothers day yesterday, which always makes it hard to find 2 sets of presents! She seemed to have a good time though, on her birthday she was at work but we did presents and cards in the morning, and because she didnt want a cake i stuck candles into her hot cross bun so she could still make a wish :)
My aunt had bought mum a pamper bag with all her favourite foods (smoked salmon, olives, sushi) and flowers, so as a nice treat I managed to get downstairs (i find the stairs pretty tricky now) and make both her and my nan a nice lunch each along with a cup of tea for when she came home. I was pretty tired after this but it was well worth it to be able to do something nice for her, she does so much for me and I dont often get the chance to do something back. That evening we went out for dinner to TGI fridays which was lovely. Its the only where I will eat and eat, i wont go into what I had as you will all think im a pig! Unfortunately I was pretty ill afterwards as my tummy is not used to such vast quantities and I was up for moost of the night feeling too full to breathe and having my sugar levels dropping low which is not pleasant at all.

I think mum also had a good mothers day. She was so pleased with the presents I bought her and one of my sisters had us over for dinner so she didnt have to cook. She completely deserves to be spoilt as she honestly is the best mum ever, and nothing I can say can go any way to how much she means to me. When I am post transplant I can't wait to be able to organise some days out for us to enjoy my new lease of life together. I hope you all nice days with your mums too.

I'm trying to take things easy the next couple of days and get lots of rest as I'm up to my transplant hospital on Wednesday for my day of routine tests followed by clinic. To say I'm worried is an understatement but it will also be nice to touch base with the team again. The main worry is of course the dreaded weight. Despite my best efforts last week it was staying resolutely at the same level although I have gained 4 pounds since my last visit 6 months ago. After last times ultimatum about the urgency to gain some weight I 'm hoping they will be pleased with my efforts. Everyday and every morsel of food I shove down is often so difficult, I would love to see some rewards for my efforts..
As always I am so touched and grateful for your thoughts and prayers, but would appreicate them even more for Wednesday. I will update as soon as I can afterwards to let you know how it has gone.
Thanks again and enjoy your week.
XXXXX

Thank you for all the lovely comments, I'm glad im back too!
Its been a bit of a quiet week, just doing uni work and bits and pieces really.
I've been weighing the last few weeks and its sitting between 44.4kg and 44.2kg which is good. Its just so disheartening to see it so randomly gaining abit then losing a bit. Its so hard to get above this weight and when I am working so so hard to get there all i want is to see some results.
I'm still well in myself but it is draining as everyday I seem to have some problem one after another. Today its a bad back, tight chest and no appetite :( No huge things in themselves but enough to annoy you when its a pick and mix of various symptoms each day.
Still I am a very lucky girl to have kept so well, so I wont complain too much. I think the fact that I am up to Harefield in a couple of weeks is making me slightly anxious, especially with the weight. I want them to know just how hard ive been trying and want them to see results of that.
I'm having reflexology today which is always great to relax me so looking forward to that and hoping it will help me all round.
Anyway just wanted to write a quick entry and say hello.
Hope your all ok, have a good week! xxx