Over 30 years ago, I was diagnosed with IgA Nephropathy following blood and urine tests prior to a trial for asthma medication. Although I hardly had any symptoms apart from raised blood pressure; over time, my kidney function gradually declined. It hardly affected my life at all – I had a healthy baby boy in my late thirties and led a completely normal life. I did know that at some point in the future, my kidneys could get to the stage where I would need dialysis or a transplant.
I was monitored over the years at Salford Royal. In the last four to five years my kidney function started to decline further, and when my GFR reached approximately 15% I had to have a fistula created in anticipation of haemodialysis. I had my first fistula created near my wrist, but this was not successful. Surgery was planned for another one near my elbow, which was a success, albeit a very strong fistula. I had it for about 18 months before it was eventually used; by which time it was super strong (possibly too strong!).
Prior to starting dialysis, I was doing my utmost to avoid the inevitable. Although my kidney function was at 7%, I still had hardly any symptoms, perhaps a little nausea now and again but not much else. At this time, I received a call from the training unit as I wanted to do home haemodialysis, and they had a space for me in the training unit at Salford Royal. However, I just didn’t feel ready, so I carried on with 7% kidney function (for almost a year), at which point I was then told that my potassium, even with dietary control, was getting to a dangerous level. I got another call from the training unit a couple of weeks after, and reluctantly agreed to start.
I started dialysis on the 19th of July 2021, in the training unit at Salford Royal. Because I hadn’t felt particularly ill, there was no immediate change in how I felt – I know many people feel much better very quickly after starting dialysis. There were some issues that came up, such as my blood pressure going too low on dialysis, and issues with clotting. However, once the correct heparin dose had been established, the clotting problems were solved.
Unfortunately, the initial problems with my low blood pressure, and clotting, did mean that I lost a couple of dialysis circuits of blood, resulting in my haemoglobin level dropping to within the low 70s. This made me feel dreadful. At that time, I could hardly climb the stairs at home, however, this did get better after I was given both an iron infusion and blood transfusion.
Over time, I got used to the process of dialysis; not to mention having to go in three times a week for 4+ hours at a time, travelling from Bolton to Salford each time, and the impact this had on my life.
Initially, my fistula was problematic, and I had to have a couple of surgical procedures to resolve this. To enable this, I had to have a neck-line fitted – which I personally was not keen on. Throughout this time, I was learning how to set up the machine and dismantle it after each treatment; self-cannulate, prepare the trolley etc. I also had to consider which machine I would have – where it would go in my house – was my water pressure going to be sufficient etc. I knew that I didn’t want to dedicate a bedroom to dialysis, so I opted for an NXStage machine that was smaller and that could be installed in a part of my living room; I felt I didn’t want to be shut away for hours at a time!
From a logistics perspective, my water pressure wasn’t good enough to support the running of the bigger machine, so an extra electrical socket was installed in the living room, along with a line for water from the kitchen, and a means for drainage. This was done with minimum fuss and disruption. When not in use, the machine sits behind the settee out of sight. When I need to dialyse, the settee is moved to the side, and the machine is wheeled round for use.
The numerous boxes required for all the supplies for dialysis are fortunately kept out of sight in our garage, and I have a trolley with drawers which I can put all the bits and pieces in that I need at hand to needle and prepare myself for dialysis.
My first days of dialysis at home were supported by the excellent staff from the training unit. After a few sessions, I was deemed fit to continue alone. At first, I dialysed when there was someone else in the house. My fistula can bleed excessively when I remove the needles, so I was rather nervous about this part of the process.
I’ve been doing home dialysis now for about 10 months. I dialyse on my own most of the time. I am extra careful
needling and removing the needles. I have learned that most faults with the machine are of my own making – usually to do with forgetting to unclamp things! I’m now extra careful when setting my machine up to ensure I don’t get constant alarms because of air entering the system quite as often as I did at the beginning. That’s not to say that any alarm doesn’t throw me into a panic; but I’ve learned to deal with them, and the telephone support from NXstage is superb. The staff at the training unit are always there for advice too.
It seems immensely daunting at first, just the fact of needing dialysis, then with all the things you have to learn to get yourself able to do it at home. None the least being the self-cannulation. The thought of doing this initially was quite alarming, but now I take it in my stride, it genuinely does not hurt, the only real pain in the process for me is removing the tapes from the crêpey skin on my arm!
I thought dialysis would take over my life, but it really hasn’t. I get up early and get it out of the way and make the most of the time that I’m not on the machine. It takes time to get trained up on all aspects of home haemodialysis, and there were times I didn’t think I’d be able to do it, but it keeps me alive. I may one day get the call for a transplant, I don’t think about this too much. If it happens, great, if it doesn’t, so be it. Now that I’ve got to grips with dialysis, it really isn’t that bad.