Life is for the Living: Time for Run to the Beat Once More

Sunday, 14 September 2014

Time for Run to the Beat Once More

I cannot quite believe it's a year since Rose ran the Run to the Beat half marathon for the phaUK, the charity that has supported our family through the many ups and downs of having a rare disease that no one understands.

It was such a relief to find this charity in those first few days of being diagnosed with a disease that I had never heard of. I remember Rob and I driving home in absolute silence and shock after I was told I had it and probably wouldn't have long to live. We had no idea what type of PH it was at that point; what treatments might be offered; what causes it. We hadn't got as far as going to one of the PH specialist centres that the country has - there are only 9 hospitals in the UK and Ireland equipped to diagnose and treat it - we didn't even know there were specialist centres at that point.

Of course, at this stage you are practically out of your mind about where to turn or what to do or who to ask. Waiting for your next cardiology appointment for follow up tests feels like an absolute lifetime away, you cannot even begin to wait until your next appointment to try and find out more. It is totally excruciating waiting for the next test and then the other and not knowing where it is going to lead to.

Inevitably you turn to the internet and this can be a very dangerous thing to do when you are in shock, but fortunately I found the phaUK more or less straight away. They sent me numerous brochures and a folder that explained the disease - I remember frantically checking the post every day until they came. The information they sent me helped me get through those next dreadful months while I waited for a formal diagnosis and to see how far advanced my disease was. It is a very complex disease and difficult to understand and I hadn't come across anyone who knew anything about it.

Even my cardiologist knew very little, so the information they sent me was a godsend to help me get my head around what was happening to me. The best thing of all was how they put me in touch with other patients - real people, with real experiences to share. They run a forum and a facebook forum where we can chat and help one another, because the reality is with something so rare you will definitely not be bumping into anyone who has PH in the doctor's or at work. They also run a conference most years so patients can meet up and become better informed on all the new treatments and research. We have met some of the most inspirational and incredible people through the phaUK, who have now become life long friends.

Many babies, children and teenagers are diagnosed with this disease and the phaUK run an annual family weekend, where families get to do lots of enjoyable activities and a chance to meet other families who are going through similar experiences. The charity also supports medical research, works with our specialist centres and seeks to raise awareness of PH including amongst medical staff, who are still relatively uninformed on the disease.

Our family will never forget this organisation that gave us so much help through my illness and still does, as well as our PH family too, who have given us both their unstinting support and friendship over the years. Rose decided she would like to try and raise more funds for phaUK through running the 'Run to the Beat' 10K 2014 run, being held at Wembley this year.

Rose also felt it was quite a significant time to do this too, as it is nearly a year now since I had my life changing heart and double lung transplant. September will now always be quite an emotional time for our family and Rose doing her run, somehow helps to mark the event and gives us an opportunity to try and give something positive back.

So very early Sunday morning Rob and Rose set off for Wembley, the weather was fine and not too hot, perfect for running.

I'm delighted to say Rose completed the race in just an hour and has managed to raise over £600 so far for phaUK. Many thanks to everyone who sponsored Rose and have helped us give a little something back to this wonderful organisation.