When I first learned that the time for dialysis treatment or transplant was approaching, I was invited to speak with a specialist nurse about dialysis options. She visited me at home bringing pictures of dialysis equipment and treatment. When I saw the pictures showing patient fistulas, I immediately decided that I wouldn’t be going down that route! I did not like the thought of my arm being disfigured. In fact, I decided that I would opt for peritoneal dialysis (PD) as it could be done at home and was presented as being gentler on the body. My brother, who also has Polycystic Kidney Disease (PKD), used this treatment for about 6 months before his transplant; I knew that he had found PD easy to fit in with work and his lifestyle. My dialysis choice was agreed with my consultant who checked that my abdomen could accommodate the required catheter. I was also shown the set up that was needed for this treatment at home. I then put this decision to the back of my mind, hoping that dialysis would never be needed….
In late 2019 when my GFR was about 11mls/min, my consultant discussed an estimated date for surgery to put the peritoneal dialysis catheter in place. It was agreed that this would happen around Easter 2020. However, like many things on the kidney journey, this didn’t go according to plan! In January 2020 I found out that I needed major gynaecological surgery. As my GFR was now less than 10mls/min, I was told that I could not have the surgery at my local hospital. It would need to be done at a hospital with a dialysis unit as I would need dialysis before the operation could go ahead. On the day I went for the pre-op, my GFR was 7mls/min and I was feeling quite poorly, hence in early March 2020, I had a neckline inserted for haemodialysis. I was also told that my forthcoming surgery would rule out PD, because of abdominal scar tissue.
Insertion of the dialysis line was a quick and painless procedure, but this was not what I had planned! I started dialysis one week before the first National lockdown; a very scary time. I found that the line was a convenient means of connecting to the dialysis machine, though not getting it wet was an inconvenience for bathing (until I discovered shower pouches), and I really missed being able to swim. All went smoothly for about 6 months, I had my surgery and started training to do dialysis at home. Around this time, I had the first infection in my line, and I then spent ten days on the renal ward and was treated with antibiotics. Over the next 12 months, this happened a further three times; I was always conscious that a high temperature might signal another infection. The line was removed and replaced once, and eventually it was decided that it was coming out for good!
The removal of my infected line was only possible because I then had a working fistula; that’s another story… I first had my veins scanned with a view to fistula creation, shortly after I started on dialysis. Fistula surgery was delayed until after my gynaecological surgery so that the fistula could not be compromised. In November 2020, three months after my major operation, I had fistula surgery above my right elbow. The surgery, done under a nerve block, appeared to have been successful but the fistula never worked, apparently this is not uncommon. Surgery to create a fistula in my left arm was considered more complex, requiring a two-stage process. In April 2021, I had the first stage to join the vein and artery. The second stage in September involved moving the blood vessels to the surface of my upper arm which involved a three-hour operation. By October 2021, I was the proud owner of a working fistula and was line free.
Although a fistula was not what I wanted, professionals told me it was the best form of dialysis access. My experience of multiple line infections and hospital admissions convinced me a line was more of a risk. Some people do have lines for years with no problems, however once mine was infected I did not seem to be able to stay infection free, despite antibiotic treatment and line replacement. By the time I had a working fistula I was doing dialysis at home, and I had to re-train to needle myself. This was a hurdle to overcome but proved to be less of an issue than I expected, and I was soon able to access my fistula independently. My fistula has given me the chance to return to the swimming pool to enjoy the sport which I love. Overall, the road to getting here may have been a little rocky, but I am happy with the outcome.
