Friday, 16 May 2014

Wednesdays appointment!

So, I had my appointment Wednesday! It wasn't too bad had some good and bad news really. First I had my weight and blood pressure done - got out of having bloods yaaay! Lost more weight again, which isn't too good!
Then I met a nurse Helen and she was there to give me all the info about dialysis, gave me more booklets and DVDs to have a look at, which I still haven't got round to yet. She told me I will more than likely be needing dialysis within the next few weeks, so she has organised a scan on my arm for a fistula to be fitted. A fistula is where the surgeon joins to main veins together to make it larger so its quicker, safer and easier to dialyse through. that takes up to 6-8 weeks for the fistula to enlarge so if I need dialysis in the mean time, I will have to have a permacath which I think I mentioned in my last post, that is a bit like a portacath. For the 'non CF folk', a port is a small appliance that is put under the skin and has a lead that connects the port to a vein. The permacath is kind of less permanent but that also is risky as it can cause infections which is the last bloody thing I need right now on top of everything else!
Then the issue of my weight got bought up again. They are really concerned how much I'm losing so quickly, I just cant help it. I don't feel hungry and when I do, I'm getting full really quickly. I know myself it is a problem but I can only but try my best which clearly isn't good enough! They have suggested I have a gastrostomy put back in, and although I am very reluctant about it, because, well I had one since I was 11months old until I was 18/19. You'd think I'd be used to it and wouldn't mind having it back, but I feel the complete opposite, I feel as though I'm going backwards, with the wheelchair, tube, not managing to go out. Plus I'm fed up of having things hanging off my stomach, when I had bowel cancer etc. But I know its for the best. The 'better' I am before I start dialysis or have a transplant, the better I will recover and I know from last time it is so much easier to be as well as you can beforehand. Hopefully will only be a temporary thing anyway!
I mentioned about transplant and live donors, she isn't the person to talk about it to as she just deals with dialysis. There's another team that deals with transplants, haven't yet met her but I have her phone number if I need to ask anything! From what I do know is live donor is someone who is alive and is willing to give me one of their kidneys, they must be fully checked obviously as with any transplant. If none of the live donors are a match for me, then I will go onto the transplant list, where as before with my lungs I will have to wait until a kidney becomes available.
I seem to have accepted this is all going to happen, which is making things a bit easier, so at least as time goes on will be less scary. I still think about it all obviously as its only early days but I've got this handled I think. It's something that is going to happen so its just got to be done!
Soon as I got in from hospital, it was about 2pm. I literally got changed into my pajamas, and went straight to sleep and didn't wake up until half 8 the following morning. Even yesterday, I slept pretty much all day. Been up since 830 this morning, I'm gonna try something small to eat then have another little sleep!
Also forgot to mention, the fistula, permacath and gastrostomy are all done UNDER A LOCAL ANESTHETIC. help.

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