Before you read any further, please be warned that this post contains images of blood filled tubes and needles poking out of my arm. Those of a nervous disposition might want to turn back, or alternatively swallow some courage and read on. Come on, what’s the worst that could happen? So you vomit a little? You’ll live.
As the title suggests, I’m dialysing at home! A long journey to finally get the machine and the paraphernalia installed in our little third bedroom is finally over – and as an extra bonus, Hollie now no longer has a room in which to store junk. Win-win for me.
I’ve been home-haemodialysing now for four weeks – and I can’t believe how much of a difference it has already made to my life. Travelling backwards and forwards to the hospital is already a distant memory. It feels like I’ve been dialysing at home forever. It’s so nice having the machine there waiting for me to be able to hook myself up whenever I like, rather than being tied to a hospital schedule. When having hospital treatment, I was up and out of the door by 7am every Tuesday, Thursday and Saturday morning. Now, on a day off, I can mooch about the house, play with the boys, have a shower and choose when I want to dialyse. And as I’m now dialysing more often, I can have an extra cup of tea when I get up; I can have that large Red Bull over a pint of ice without feeling guilty and doing liquid calculations in my head, wondering how this will affect my fluid gain for the next dialysis session. Everything is more relaxed – fluids, diet, lifestyle. It’s just so good. If you are reading this as a dialysis patient, either haemodialyis or CAPD, I beg you to explore the possibility of home-haemodialysis. Once you get past the stigma of putting your own needles in, the rest is easy.
The machine itself takes around 40 minutes in total to set up. From priming the machine, getting saline into all of the tubing and mixing the dialysate fluid (the stuff which removes the toxins from my blood). Then it’s time for the needles. Something I never look forward to, but I’m always pleased with myself once they’re both in! I start by removing the scabs from my previous session, which goes against everything I was told as a child! This is so I can use the same holes as before and the needles can slot into my fistula with greater ease. Once the three hours of dialysis is over – and doing that one hour less per session makes a lot of difference – the machine then has to be put into a hot disinfectant clean lasting around 30 minutes before I can then switch it off, close the door and forget about it for another day. All in all, it’s about four-and-a-half hours that I’m up there in my renal room. But compared to five-and-a-half that I spent out at the hospital – sometimes more – it’s no real hardship. Plus – I can stay in my pyjamas.
*Click on each image for a closer look
I can’t quite believe I’m doing my own dialysis. This year will be my 14th year of suffering with kidney problems, and when I think back to how I felt as a 15-year-old boy laying in a hospital bed for two weeks, desperately trying to get my head round what has happened, what will happen and what kind of life I might lead in the future – well, it all seems a very long time ago. That teenager in the old Norfolk & Norwich hospital in 1999 had a central venous catheter sticking out of the join between his neck and shoulder, tubes coming out of the side of his stomach and two parents who were scared. Very scared, partly because I had become so ill in the first instance, but also because they didn’t know what to expect. None of us did. It was like a foreign language – dialysis, plasma exchanges, blood transfusions, creatinine, potassium, phosphate…all the things about which I now know almost everything there is to know about was all completely alien and, at some points, overwhelming in ’99.
Today, I don’t think there is anything I don’t know about dialysis. I want to go back and tell that boy that it’s alright. It’s going to be alright. There will be some horrible days where you won’t feel like getting out of bed, and there will be times when every movement your body makes feels like your insides are filled with battery acid.
But…it’s really alright.