So, I have been feeling a lot more sleepier and unwell than usual so last week I rang the kidney unit just to let them know and they suggested I come up the following Monday which was last Monday. The nurse I spoke to was Clare and she told me the best and last option for me now would be to start dialysis, she said to think about it.
Yesterday I had the access clinic which was to have a scan done on my fistula to check the flow and make sure it was all working how it should be. It was thankfully! I was supposed to start dialysis today but as I am so unsure I have another week to decide, next Monday I have an appointment anyway so I can speak to my doctor Refik in more detail abut it, I briefly saw Refik in the corridor and he basically said in so many other words he thinks now is the right time for me to begin dialysis but at the end of it, the decision is down to me. My bloods and all other tests are still the same, no better, no worse but still obviously not brilliant! So I can either start now, and get some sort of energy and quality of life back before my transplant, or I carry on how I am now - sleeping - until my transplant.
Ideally I should start now as like you're thinking it will make me a bit better and give me some energy back but I'm still undecided as showing from my bloods its not 'urgent' as such. I have spoke to my family and they have different views on it which makes it harder for me to make this decision.
Once I start dialysis I cant just stop when I feel like it, it has to be consistent until I get my transplant which is months away. My other nurse Helen is going to ring me tomorrow to discuss it with me a bit more, I hope she can help me decide easier.
I am very nervous about it, as needles are involved and I have a needle phobia. It will be 2-3 times a week in the afternoon for a couple hours each time and I will have to travel up to the Borough which is next to Guys. I was originally meant to be going Queen Marys in Sidcup, but that meant changing doctors and having a whole new team and I'd rather stay under Refik as he's a brilliant doctor and I feel at ease with the Guys team so if I was to start that's where I'd be.
Also, I have the PEG at the moment, for those who don't know its a gastrostomy tube which is in my stomach and I get fed overnight through it to help me gain weight. Well, I have been put on the December GA (general anaesthetic) list to have it changed to a mic-key which is the one I used to have. Its much smaller and easier just a lot better all round really. That's for the 12th December so more things to look forward to. Yay.
