The Beginning

20th August 2015

I decided to write  a blog so that anyone interested in what is happening in the Ayrton household since being diagnosed with idiopathic pulmonary arterial hypertension could see what we were up to!  Who would have thought  I would still be around to be writing this when I was diagnosed almost five years  ago.

Life was good before diagnosis.  We were living the dream in Javea, Spain, a wonderful place where we had the most fantastic friends. We loved the Spanish way of life and had both joined a walking group.  Unfortunately my walking was very quickly curtailed as my health deteriorated but I still enjoyed the life and long lazy lunches with friends around our pool.  All our family and friends came out to stay with us and we had some amazing times with them all.  We made many new friends in Spain too, wonderful friends. Fortunately we are still in touch with them all and see them as often as we can and keep in touch by e mail.

The life we knew was brought to a crashing halt when, after two years of not feeling "right" and a series of visits to the doctors as I was not picking up after a chest infection. we were told I had pneumonia. I was given antibiotics and told it was fine to fly to America for three weeks where we had a very busy holiday booked.  Little did we know then but the journey itself could have killed me!  

In truth the holiday was not a success as I was too poorly to enjoy the holiday, could do very little and was constantly feeling I was about to faint or be sick.  The only place I felt fine was in whichever bedroom we were staying in whichever hotel.  

Back to Javea and another visit to the doctor who this time after seeing how poorly I was sent me immediately to see a specialist.  After a series of tests my doctor told me he felt he knew what was wrong but Spain gives diagnosis quite differently to the UK.  Very bluntly as I was being prepared for a right heart catheter ( a procedure where a tube is passed down into your lungs to see the pressure) I was told he could not promise that I would live six weeks.  This was devastating as I was about to become a grandmother and did not know whether I was to be be grandmother to a boy or a girl.  The doctor, who I have since come to respect so much for his speedy diagnosis told my husband to get me back to the UK immediately as there was nothing he could do.We were fortunate as we still had a home in England as well as Spain and as we were still living in the UK as much as in Spain we were still residents of the UK. We had paid private insurance in Spain so again something we were very thankful for.

Our journey back to the UK was very frightening and when I look back I wonder just how we made it. At that time we had friends staying with us from the UK.  We trusted them implicitly so we threw them the keys to one of our cars and all the house keys and left them to shut up the house and the apartment  at the end of their holiday on their return to the UK. We quickly took what we felt was needed and was soon on our way back to England.  

We decided not to risk  flying as we knew the pressure on my lungs could be so great as to kill me.  My husband had been busy on the  computer and had sent an e mail to Royal Hallamshire and their specialist David Kiely who said we must get back immediately and get to that hospital via our own Doctor or our local hospital. Time was of the essence so the day after the final diagnosis our journey began.

We set off on a beautiful morning at the beginning of August 2010.  Colin had booked the ferry from Santander  to Portsmouth and we had to stay overnight  in a small Spanish town. The drive was horrendous as by this time I was experiencing so much pain in my heart.  I called it the squeeze  as every two or three minutes my heart felt like it was a sausage and someone was squeezing it to get all the meat out of the skin!  After we arrived in this town we parked and needed to get to our hotel.  

I could not walk more than three or four steps without stopping and resting, we were in despair.  The night was scary.  We settled down to sleep and about an hour after while Colin was asleep I had the strangest feeling, one I cannot describe but I felt I was dying.  I was not scared strangely enough but knew I wanted Colin to be holding my hand as I died.  I woke  him up and  said "hold my hand" he said "why" and I told him I felt I was dying. He must have been terrified but he cuddled me and we both fell to sleep.

After a very restless night we  began our journey to the ferry at Santander and the journey across the water home.  We had booked a four berth cabin and Colin made me a bed using all the duvets as my body hurt so much,  by this time even the journey to the bathroom was very difficult and my breathing was very laboured.  I was thrilled in the morning to see the coastline of the UK as I needed my family round me for strength.

Time to get out of bed and we were both shocked as I could not shower myself.  Colin came into the shower with me and washed me and then half carried me to the bed where he had placed my clothes for me to dress.  As he was finishing his shower he heard me cry and came to ask what the matter was, I said I couldn't dress myself his reply was "well I can dress you" and so he did. On leaving the ferry I wanted to go straight to the nearest hospital but Colin said no. Unbeknown to me he wanted to get me back to my home town as he feared I did not even have the six weeks predicted to live and he too wanted me to see my family..

I didn't see my home for five weeks.  I was admitted to my local hospital immediately we reached my home town.  An ECG was immediately given and the doctor told me there was no way I could go home, even for a day with my heart in such a condition. The problem was my local hospital had never heard of idiopathic pulmonary hypertension so could not give me any medicine,  it took three days to get funding in place and I was then on my way to my wonderful A Team at the royal Hallamshire a hospital in Sheffield.  A new life was about to begin.........