Moving mountains… one stone at a time
At the beginning of September, PHA UK member Cindy Regalado will hike 1001 metres up a peak in Snowdonia – 14 years after being told she only had months left to live.
She shares the experiences that have led her to this challenge and explains why the trek will be a tribute to those who have supported her along the way.
“In the summer of 2007, I was living in Ontario, Canada, when I suddenly started getting pangs in my chest whilst walking uphill to work.
I also have systemic lupus erythematosus and at the time I had a kidney condition too, and it was my renal doctor I trusted the most – so I went to see him as soon as I could.
Dr Somerville listened very carefully to what I was describing, and he consulted with colleagues. Two days later, he asked me to come to the hospital so a respiratory specialist could carry out some tests.
They deliberated over the results for what felt like a very long time while my partner and I waited outside.
With tears in his eyes, this doctor who was normally so stern and stoic, told me I had pulmonary arterial hypertension. He explained it was probably a lethal manifestation of my lupus, and my prognosis was just three to six months. I was 26 years old.
It was difficult to get approved pulmonary hypertension drugs in Canada at the time, but Dr Somerville moved heaven and earth to help me.
Whilst he looked for ways of accessing treatment for my PH, I went through some painful and debilitating – but effective – treatment for my lupus. This proved the connection between the two conditions and showed that by treating the lupus, for the time-being my PH could be controlled too.
Learning my limits
Eventually I was able to start medication for my PH too and I felt well enough to go to Mexico for three months to do some research for my Master’s degree.
I moved to Sweden a year and a half later, where I was admitted to a pulmonary hypertension clinic who performed their own tests, and treatment there began quickly.
It was whilst living in Sweden that I truly learned my limits, as I was no longer taking the lupus medication that was helping my PH, so it was now about treating the PH symptoms specifically.
It took a few months to fully adjust, and I came to terms with the fact that I wouldn’t be able to run or do too much. I quickly learned to be on time for the bus!
I lived in a third-floor apartment but even though there was an elevator, I was defiant and would push myself to go upstairs very slowly.
A new (calm) life in London
I lived in Sweden until 2011, when I moved to London to pursue my research interests, and I have been here ever since.
The process of transitioning to treatment here was very efficient, as my doctors in Sweden started conversations with the specialist centre at the Royal Free early. I felt in very good hands, and I’ve been stable on oral medication for many years now.
I’ve learned that I must take care of the lupus first in order to take care of the PH, and for me that means avoiding stress. Stress activates my immune system, which sends my lupus haywire and then makes my PH symptoms worse.
Completing a PhD with these medical conditions was very challenging, but it taught me to change my mindset. Now, even with my own co-founded company, I prioritise my health and do my best to live a calm life.
I break my working days up with yoga, I go for walks and I immerse myself in novels to get my imagination going. This all gives my mind a break from the pressures that come with being an entrepreneur, which has really helped.
Of course, you can’t always selectively tone down what you feel. Extreme stress and extreme joy are two sides of the same coin, so I’ve had to sacrifice one for the sake of the other. Therapy has helped in this regard.
Mountains on the mind
The idea for the challenge came from my six-minute walk tests. I became obsessed with going further every time, and I enjoyed having that goal – so I decided to see what else I could do.
During the November lockdown, I started walking more around where I live, going a bit further and a bit steeper each time.
I feel very lucky that I had such an extraordinarily fast PH diagnosis, and to have been stable for so long. For this reason, I decided to use my stable health and walking progress to work towards a challenge that would help raise awareness of the condition and the symptoms, as I know that not everyone is as fortunate as I have been.
I chose Glyder Fawr because it is the smallest of the three peaks in Snowdonia. It is also the least frequented peak because it presents the most challenging inclines, such as those that life throws at you – but the rewards of reaching the top will be priceless. Plus, 1001 metres has a very nice ring to it!
I didn’t know what to expect when I mentioned the challenge to my PH specialist, but he was very supportive, especially as he had seen the training I had already begun.
He did, however, want to carry out an echocardiogram as a precaution, and suggested that I try a ‘halfway point’ challenge before tackling the real thing. And so, at the end of May, my partner, friends and I climbed Mam Tor (a 500 metre hill in Derbyshire), which all went fine.
I will be accompanied by friends on Glyder Fawr and we will camp at the top, so the trek will be split across two days.
I was very nervous before the walk up Mam Tor, but completing it has made me more confident about September and I know that if I pace myself well, I can do it.
Dedicating the distance
This challenge will be a tribute to the wonderful doctors and nurses, medical researchers, and my friends and partner, who have supported me through this whole journey with my health.
It will also be for other people with PH. I’ve been so inspired by some of the stories I’ve read in Emphasis; these people have helped me focus on being happy, and I’ll be thinking of them too when I’m going up the mountain.
Ultimately, it’s about accepting what you can’t do and focusing instead on what you can – which is what this challenge is all about.”
Cindy is inviting anyone close to her cause to join her for this challenge. If you’d like to trek with Cindy in support of a loved one, or in tribute to someone who has helped you, please contact firstname.lastname@example.org
If you have pulmonary hypertension, it is vital that you speak to your specialist team before embarking on a training regime or physical challenge such as this.