A little catch up

I mentioned this in my latest blog but I wanted to expand and bore you all silly.

Can you believe that I’ve been dialysising for 13 months?!   It’s gone so quickly.  It’s surprising how you get into a routine so fast.

I still hope that my kidneys will wake up.    Maybe wishful thinking. But in the meantime I’m making steps towards long term dialysis. 

In August I had a fistula put in my arm.  What they did was cut an artery and a vein and see them together to make a super vein.  It’s just above my elbow joint on my left arm.  My new party trick is to get people to feel it.  As it’s growing stronger it pulses and vibrates.

The plus for having this is that my hickman line will come out.  It will also allow me to dialysis from home. It’s less risk of infection as its inside my body and not outward like the line.

As it’s me and nothing I do is simple, I’m having teething issues with mine.  I have to have two needles in fiona fistula.   One for blood out, one for blood in.  The bottom hole is out and the top is in.  The top isnt strong yet.  I have used it a few times but it’s weak and keeps blowing. 

We try it every session then revert to pumping the blood back into me via my hickman line. This will have yo stay in place until fiona is strong enough.

They are also making what is known as button holes on my arm.  Basically using the sane place to needle me time and time again rather than having several needle marks all over my arms. 

But another huge plus is how I feel.  Before my fistula I felt constantly drained.  I can’t describe how awful I used to feel during and after sessions.  The day between I’d have no energy to do anything.  Then the next day treatment would start again. 

It felt like a never ending circle of feeling like shit.   But from my first fistula session I’ve felt the benefit.  The day between sessions I can actually get stuff done.  I feel useful again.  I feel and do contribute to the running of my home once more. 

I feel alive.  I feel like I felt before my kidneys failed.   I’m not sleeping during the day where as before I needed at least 2 hours.  Of course I still have the odd bad day but they are days. Not weeks.

And one of  the best things I ever did this month was shave the head.   Those close to me know I’ve had endless discussions about it, shall I?  Shan’t I?  What should I do?  My hairdresser took care of the answer for me.  Number one without a second glance.  And she was right.  I think I tried to hold on to the tufty bits.  What woman doesn’t want hair?   We all say it doesn’t matter, but it does.  But now, to me it doesn’t.  It’s given me my confidence back.  I feel more me like this. 

I was scared to shave it off if that was as good as it gets if that makes sense?   I didn’t want to be bald for the rest of my life.  I don’t know if it will grow back to the length it was. Or how evenly it will grow.  But right now I’m ok with that. What happens will happen. 

I’ve learnt over the last six years I can’t control things.  But I can change and adapt and learn to live with it. And that’s what I shall do.

Love as always

Jellyfish Xxxx

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