So things went royally pear shaped. I was doing so well needling myself with very few problems, I had managed nearly a whole month at home.
Then last Thursday I tried to needle myself, my lovely nurse who will be known as M just happened to be there dropping supplies off. I kept getting flashback on the needles so I knew I was in the right place but the blood was black. It had gone, clotted off. I racked my brains to think if I had done anything different the day before, banged my arm or done any lifting. I hadn’t, sometimes it just happens – so frustrating!
I went to A & E. Saw various doctors, had a scan to confirm that it had clotted off and stopped working. They tried to get blood off me from various places and I ended up with a cannula in my foot.
To cut a very long story short. My graft is beyond repair. It has had so much work on it that it can no longer be fixed. So I have myself a very attractive new accessory… picture not for the faint hearted.
Last time I had a neckline inserted I was asleep, I had eaten this day so they couldn’t even sedate me. This has been the most horrendous procedure I have ever had done (even after the angiojet to unblock the clot last time). Not ashamed to say I cried… I like to think I am brave but I totally wasn’t. It didn’t help that they inserted one neckline and it was too long so they had to pull that out and insert another one! When they did this they trapped some air and my sats dropped (level of oxygen in my blood) and I felt like I couldn’t breathe.
I was put on oxygen and had to be observed for 5 hours. Once it was all over I almost instantly went to dialysis. Amazingly I was let out the same night and didn’t get home until midnight.
The pain over the next few days wws excrutiating. Paracetamol just wouldn’t touch it. I couldn’t get comfy, couldn’t lay down and couldn’t sleep. I stayed at my parents house and spent 2 nights on their reclining sofa. The pain is starting to ease and I can lay almost flat now. I’m adjusting to life with a neckline now – it feels like a lot of my independence has been taken away though. I can’t wash my own hair as I can’t get it wet. I can have a shower round it and a shallow bath and swimming is a no no.
I am currently training alongside Mum so I will be able to dialyse at home again, the procedure compared to the graft is completely different so its hard to unlearn that and relearn this. But we will get there.
Thanks to nuse M, Aidan and the olds as always for their invaluable support. Things may have gone pear shaped but I know I am a lucky girl.