Reality strikes again

So clinic yesterday…
Walking into the room we were greeted by two of my consultants (which is never a good sign).

They both looked at me and shook their heads. My results are still haywire and basically the tablet (ACE-inhibitor) they were going to put me on would not make any difference. My protein leakage is rising and is now 9 and although some of my other results aren’t that bad, this result in itself proves that poor Ivy (my kidney) is on her way out.

My consultant wants a fistula made in my left arm ASAP. This takes 6 weeks to mature and once that’s done it will be ready to needle and I’ll be ready to start dialysis. I requested that the operation be done under general anaesthetic but he didn’t seem keen on doing this in someone who has organ failure. The compromise was that he himself would do the operation (not a registrar) under local anaesthetic and he would make it as pleasant as possible (not sure how he will do this but hey, he was trying to be nice) and I agreed.

It was also decided that I would need to speak to the anaemia nurse about receiving injections to help my Blood count, so they will be in touch with me regarding that. I was also advised that now dialysis is so close that I shouldn’t go back to work until I am fully on dialysis and stable. I’m disappointed as I want to get back to it, deep down I know I’m not well enough though. I Just feel like I’m letting people down and I don’t want people thinking I’m skiving or just going for the easy option, I’d give anything to be well enough to go back to work (I need the money for one and of course I miss the staff and kids).

After clinic I went for an ultrasound vein mapping scan. This was a scan on my left arm to see which vein and artery would be suitable to use to form a fistula. It looks like this will be at my left elbow. I knew the lady who did the scan from previous times and from me being a Guinea pig at a medical conference a few years back, it was nice to see a friendly face and catch up rather than talk about the obvious reason I was there.

Whilst in the waiting room at the ultrasound department me and Mum got chatting to an old friend who had helped me first time round starting dialysis (she was in charge of the vascular access), her husband has also had a kidney transplant so she knows the journey from both sides. She also organised for me to go and see a lady about holiday dialysis as it’s clear that I won’t be going to Malta dialysis free.

Turns out that the only suitable dialysis location in Malta is a private clinic costing €330 per session (I will be needing 3 sessions whilst I am away) that’s a grand total of €990 to dialyse for a week… We definitely take the NHS for granted. I would have to pay upfront when I get there. Thankfully I would be able to claim some money back £150 per session it is looking like. Still it seems odd to have to pay for treatment without which I would die.

Anyway that’s all still a little bit in the future so I don’t need to worry about it just yet and thankfully my Auntie has been super generous and said she will pay for me to have the dialysis on holiday. With my sick pay going down to the grand total of zero on the 25tg February that is a weight off my mind.

I spent yesterday afternoon after clinic on the phone to the DWP to see if I am entitled to any benefits. I don’t like the thought of claiming, but how am I meant to survive? I certainly don’t expect my parents to fund me (although they would at the drop of a hat). I’ve got my own mortgage and bills to pay now so without some sort of help I will be up that infamous creek without a paddle!

So, the plan of action now is to wait for a date for my fistula operation, wait to hear off the anaemia nurse, go back to clinic next Monday Morning, wait to hear about the benefits I may be entitled too and go for an abdomen scan on the 23rd February. All fun and games.

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