Member Spotlight: Susan.D

Firstly, tell us a bit about yourself and your kidneys

I was in my late 20s, recently finished a postgraduate degree and working full-time, when the occasional blinding headaches & hours of sickness became too regular to be ignored. Not surprisingly my GP diagnosed migraines - no reason to suspect anything different - and gave me painkillers - which made no difference.

A month or so later, a blood test gave me another diagnosis - End Stage Renal Failure with barely any function left. Dialysis and a transplant were my only options now.

To say I was stunned doesn’t begin to describe what I felt. My husband and I were renovating an old house while living in it. Any back twinges could easily be put down to the hard graft involved with that. I’d never had as much as a urinary infection before and there was no history of renal disease in my family. I had absolutely no idea what dialysis was, and as for thought of a transplant - preferred not to go there!

In a nutshell, I had about 16 months of (mostly) peritoneal dialysis at my nearest renal unit, Ninewells Hospital in Dundee. I was then amazingly fortunate to have a cadaveric transplant which lasted 23 years. With failing health for some years, she (the transplanted kidney) and I lost the battle thanks to sepsis - and back on dialysis I went.

I had the greatest of fortunes again, as after just 5 months on dialysis, an amazing cousin offered me a kidney. I spent a week at the National Transplant Centre in Edinburgh and came out with transplant number 2!

I can’t easily explain the difference this time round. I thought I felt better in 1993 with the first transplant, but with knowledge gained over 30 years as a renal patient, I realise it was not as successful. So much has changed in these decades - from operating techniques to drug regimes - and so far, 4 years on with Kidney 2, she’s doing wonderfully well and I feel gratitude to my cousin Lise every single day.

I can help my husband in the kitchen and with household tasks - or even let him have a rest! I’m first out of bed almost every morning to get breakfast and my new-found pleasure in food has ignited my enjoyment of cooking (and baking…) which is where exercise comes in!

How do you feel in general about physical activity and movement?

I like the idea of being active!  I know the benefits, physical and mental, that it brings, but have tended not to join other classes as I know my body hasn’t always been able to keep up, and it gets frustrating to have to continually explain your ‘special circumstances’.

With Kidney 1, I did a weekly yoga class for about 10 years. When the teacher moved the class venue, I then found our Pilates teacher and my husband and I have done this weekly (apart from a break during dialysis and post-operation recuperation) since then. Our teacher has even been doing classes via Zoom during lockdown which is just excellent.

What barriers have you had towards exercising?

Stamina, often a result of renal anaemia, has been a major issue. Lately I received both iron infusions and some form of EPO regularly, and there’s no doubt they helped. But as Hb levels are kept lower than ‘normal’, it’s just not possible to participate in many things as you don’t have energy. I worked full-time till last Spring and before transplant 2, found that I was too tired to do much after work.

Drug regimes can also be hard on the body – I’ve been on steroids continually for 28 years now, plus various forms of immunosuppression. Their side-effects can sometimes cause extra problems that make movement less easy, osteoporosis being one of them.

How has Beam helped you overcome these barriers?

Beam is the only exercise programme/website that I know of that is created with kidney patients – at all stages – in mind. I love that there’s a broad choice of activity, and even within the individual activities, the class leaders offer different variations of an exercise to fit different fitness levels and abilities. Anaemia is no longer an issue for me and it’s done my confidence so much good to see that I can do these classes – and not feel knackered afterwards!

I also find it very helpful to have such a variety of options to revisit online. I’ve done several of Jules’s ‘Get Started’ classes many times now and can see I’m getting stronger by repeating them.  Recently I started Rosey’s HIIT classes and intend to keep going with them, and also Jon’s stretching classes which feel very beneficial.  I tend to do most of the classes in the early evening, after work; so the online option is just excellent for me. I feel that overall these classes will help boost the other activity that I do and ultimately help my bones and general wellbeing.

What else makes you feel good?

On the exercise front, my husband and I started cycling (for the first time since childhood!) a couple of years ago. It’s lovely wheeling along a forest track and smelling the pine resin in the air. During lockdown, we reverted to an exercise bike and managed to clock up 2,000km each – John o’Groats to Land’s End and back again…plus! We also started sea swimming as we’re on the east coast, and use wetsuits etc to keep out the cold! You can stay well away from people when you’re in the water!

Feeling inspired by Susan and want to 'Get Started' on Beam?

All classes can be taken at your own pace, and if you’re feeling nervous, let the instructor know and they’ll be sure to reassure you. You can start with an On Demand session, to get active with a Live Class and join the rest of the Kidney Beam community. We also have a dedicated Get Started program, just fr new Beamers.

Remember, the Beam Team is here to support you too, so if you have any questions about starting classes, please feel free to get in touch with us - hello@kidneybeam.com