In May 2008 I was told following a kidney biopsy that I had ‘cast nephropathy’ and that I would need dialysis within the year. In fact my kidneys deteriorated so quickly that I started dialysis in the September of that year.
At that time I was very weak. This was partly due to the underlying condition that had affected my kidneys, a little known blood cancer called myeloma. The myeloma had not only affected the kidneys but also had led to two collapsed vertebrae and the loss of 5 inches in height. I could walk but very short distances and going shopping required me to use a wheelchair.
When I knew I had to start dialysis I was given the option of haemodialysis or peritoneal dialysis. Having spent 17 weeks in hospital in the previous year I could not face three days a week at the hospital so opted for peritoneal dialysis.
I remember the nurse bringing a manual bag to the house and me trying to split the bag to mix the two fluids and finding it incredibly difficult. This was just another indicator of how weak I was. After initially being on manual exchanges four times a day I moved to the overnight machine by December 2008.
Shortly after I started dialysis I tried to get a little bit fitter by walking round the block, probably much less than half a mile. I gradually increased the distance slightly and asked my GP if she would refer me to BEATS (Bury Exercise and Therapy Service). In 2010 after an assessment by BEATS, they suggested I start tai chi, increase my walking and do a gentle gym programme which they worked out for me. I followed their suggestions and found ‘health walks’ too which I did with a friend.
Although I only went to the gym for a year as I found it a bit boring, I continued with walking and tai chi. Indeed I gradually increased walking distances so that I could walk three miles. The tai chi helped build up my leg strength and in 2012 I decided to start Zumba.
Now I do tai chi twice a week, qigong (slightly similar to tai chi) once a week, and Zumba once a week too.
I am so glad I chose peritoneal dialysis as I love travelling and since starting on the treatment I have visited Spain (4 times), Italy (twice), Latvia, Estonia, and Sweden as well as holidays in various parts of the UK.
I felt really down when I heard that I was going to have to be on dialysis for the rest of my life but whilst that may still be true I have now an excellent quality of life and wheelchair … what wheelchair?
4 thoughts on “From Wheelchair to Zumba …”
It’s so good to read such a positive story! I particularly like the way you’ve incorporated dialysis into your life as opposed to letting it become your life. You’ll have to share some photos of your travels!
Great read, you are an inspiration to many
A terrific story, I am particularly interested because of my MGUS as well as CKD
Sorry to hear that you have MGUS. I know this can sometimes develop into myeloma but hope this is not the case with you. Should it do so in the future I am pleased to say that there are a lot of developments in treatments even since I was diagnosed in 2006.
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