Mair was diagnosed with myeloma that attacked her kidneys… This is her story.
It all kicked off at the start of 2019 ,when I just felt a bit under the weather, putting it down to post Christmas blues. Then I got this insatiable thirst, so I made an appointment with my surgeries diabetic nurse. I had the usual blood tests only to be told I wasn’t diabetic, but my GP did want to see me.
I continued feeling rough and continued seeing the GP for further blood tests. All of which came back negative. After a few weeks and numerous blood tests, one came back with a question mark for multi myeloma. I could tell this was serious just by the way my GP told me .
And sure enough it was myeloma an uncurbable blood cancer. He then referred me to a cancer consultant, for a proper diagnosis. So on Feb 21st after seeing the consultant, who said that judging by the results it was very likely to be myeloma but she wanted to do further tests. I went home only to receive a phone call that evening, telling me that one of the results wasn’t that good and I could either go in to A&E then or go and see my GP the next day. I opted to go in there and then.
On being admitted I learnt that the cancer had attacked my kidneys which were in a pretty bad state . I went into the cancer ward and was given chemo in a tablet form straightaway. They told me to drink 3 litres of water along with being given 3 litres intravenously a day, in hope that my kidneys would kick into action. However, this didn’t work so I was put on some dialysis sessions .
To cut a long story short, due to complications I ended up spending 6-months in hospital.
While being an impatient I would regularly be taken down to the renal unit, when necessary for dialysis, this was via a neck line.
It was at this stage that I was first introduced to the home dialysis nurse who mentioned considering having dialysis done at home. I was under the impression that I couldn’t have home dialysis while still using a neck line and I would need a fistula fitted. At the time it just felt like too much to deal with.
I was eventually discharged from hospital with the pretence that I would have regular blood tests done and my neck line checked along with the odd session of dialysis. It was while I was on one of these sessions that a bombshell was dropped, during the consultant’s regular round he informed me that I was going to need dialysis on a full-time regular basis. Which is 3 sessions a week, for 3 hours at a time.
It was a big shock! I thought about all the plans I had in my calendar I’d already missed, including a Take That concert and a friend’s wedding. So many things went through my head, I couldn’t take it all in. So, this was it I was about to become a fully-fledged dialysis patient, potentially for the rest of my life.
But then Covid hit which meant that going into the unit was a double-sided blade.
Again I was approached by the home dialysis nurse . During this chat, I found out that I misjudged the need for a fistula, so with the go ahead from my consultant, I could have home dialysis with a neck line.
Thankfully my husband was prepared to take on the training of connecting monitoring and disconnecting me while on dialysis.
I was fortunate to have a spare room that we would use so it was all sorted out at no expense to ourselves and we then took delivery of quite a large amount of equipment including a large bed which much to my embarrassment had to be wheeled down the middle of our street on a forklift truck. I started home dialysis in September 2020 and luckily for me because my bloods stabilized, and with my kidneys functioning between 13 and 15%.I had my last session on January 1st 2021.
Potassium has become my nemesis. But by keeping a keen eye on its intake and with the aid of medication, I’m off dialysis. Since I’ve had a fistula created, which took 3 attempts.
This is where my link up with kidney Wales began, I now had some free time and I wanted to give something back. They’ve been a blessing in disguise to say the least. A great team of people .