Phighter Friday: Michelle R

Before I got PH I had a very active lifestyle, running, sailing, caving, climbing, hiking up mountains, and my passion, horse-riding. All my life I owned, rode or worked with horses. I would think nothing of biking 8 miles to work (running a Riding For the Disabled Yard) and back, and then going for a 5 mile run in the evenings. I guess i was a bit of an adrenaline junkie, competing cross country and show-jumping with the horses…..and often going to theme parks to ride all the scary roller coasters.

During the winter of 2009 we had a lot of snow, and one evening my car got snowed in at the stables.  I ran the four miles home in the snow, getting pretty cold and wet. A few days later I got pleurisy. I never really recovered from that. When all the snow had cleared I tried biking to work again and found it incredibly hard. I tried to go out for a run, but found I was out of breath after a few metres. I knew something was very wrong, but the doctor assured me it was down to the pleurisy and I had to get fit slowly again.

I spent the whole of 2010 trying to do just that. I walked everywhere, but still couldn’t run. Going up hills I used to run up I had to stop to catch my breath. I found working the horses really hard work, and I kept getting a  weird tingling feeling down my arms and into my wrists. My hands and feet were numb even in the summer!

Early in 2011 I seemed to be getting worse and I went back to the doctor, who thought I might have asthma and gave me an inhaler.  I pushed myself so hard to get fit I don’t know how I didn't kill myself instead. A few months into 2011 I was at the doctors for a general check up and she asked how my breathing was. As it was no better she sent me for a x-ray.

A few days later I had a phone call from an alarmed doctor, who told me I had an enlarged heart on the right hand side. I was told to be very careful and was referred to hospital. After a series of tests one thing after another was ruled out until finally 2 days before my 45th birthday the consultant said he thought I had PH and was referring me to a specialist hospital, the famous Papworth. In the mean time I googled PH as we all do and was thrown into a panic after reading I only had two years left to live!

I lost my job as I was deemed too unfit, and I put my own pony out on loan. At that point I couldn't even climb the stairs without stopping.  Papworth initially classified me as a WHO class 2/3 and started me on Sildenafil and Warfarin.  They helped a bit but I sunk into depression.

Without the horses I felt like my right arm had been cut off. I found it hard work just walking the dog round to the shop, a mere 1/4 mile away. I was even jealous of runners. I mourned the loss of my lifestyle. I applied for several jobs without success, and was in a really black place.

Finally in April 2012 I got a job at Tesco on the checkouts.  Papworth also started me on Bosentan , and those two things were the beginning of the turnaround. Slowly I started to find I could do more, walk further and felt stronger. I discovered the Facebook PH group and was amazed to find people that have lived with PH for 20 years. I began to feel ‘normal.’ again.

In April 2013 I got a job in my home town in the ice cream shop, which is physically harder than Tesco, but again the more i did the better I felt. I also got a second job in the evenings, waitressing in a bar, and walked everywhere. In my 6 minute walk tests I could do nearly 600m. I almost forgot I had anything wrong.

This year I have had a couple of set backs as I was diagnosed with Breast Cancer and the local hospital refused to operate due to the risks of the anesthetic. Lucky for me really as I was referred to the brilliant training hospital Addenbrookes only 10 miles from Papworth . I spent a couple of days at Papworth having all the tests again, and was delighted to discover the pressures in my lungs have lowered and I am now a Who class 1. I sailed through local anaesthetic lumpectomy and removal of 3 lymph nodes, making history into the bargain, and the following 6 weeks of radiotherapy. Unfortunately that caused pneumonia in October and I ended up in intensive care, which has reminded me, that I do actually have a lung condition and to slow down a little bit!!

Back in the summer I met someone local who keeps horses and started helping her out. To my delight I found myself back in the saddle, and not out of breath! I am also trying to start a dog walking business,  although I only have one customer at the moment, I find it no problem striding around the countryside, doing 3 miles or so. I firmly believe the exercise helps the condition. So although at the beginning it felt as though PH had stolen my life,  little by little I have stolen it back again!