Rob is smiling when I come out and jokes where have I been, as I seem to have been ages. I whispered to him to prepare himself, as they had found something. Rob says he will always remember this moment and these words for the rest of his life!
We are ushered into the cardiologists room and sat down and then we waited in anticipation of what he was to say. They had found the right side of my heart was extremely dilated and that I had sky high pressures in my pulmonary arteries, they measured at this time at 137mmhg all indicating that I had pulmonary hypertension, a rare condition, which can be secondary to other medical conditions or could start on its own. My heart was failing badly, my ankles were swollen up like elephants and the next step was diuretics to help my heart.
We drove home in complete shock and quiet at what we had been told, the girls had been waiting anxiously and we explained what we had been told. We decided that as this was serious, it was better to be frank with them from the start.
When I started the diuretics, I lost half a stone in a weekend and realised I hadn't just put on a few middle age pounds, but I had been walking round in severe heart failure for goodness knows how long! Further investigations and tests were to follow to try and find out a cause.
I went into school the next day, but felt as though my whole world had been completely tipped upside down, I tried to act normal and managed to get through all the physical motions, but mentally I couldn't concentrate, my mind was all over the place still trying to make sense of what had been said to me and really I could barely function I was in so much shock.
The school had offered me another supply contract for Autumn Term, after explaining to the Head Teacher what was happening and that tests would go on all summer we agreed a date that I would let her know if I could or couldn't come back. This was an extremely difficult time, I had just started a new job, everyone had been lovely and welcoming to me, but I hardly knew them and somehow I had to tell my closer colleagues what was happening. One can imagine the conversation: 'well I've just found out I've got an incurable condition, which is in a dangerous stage'; 'oh I've got severe heart failure.....': how on earth do you begin to start telling people you have only known four or five weeks? I knew deep down that when I walked out of school on that last day of summer term that I would not being going back and that it was probably going to be very unlikely I would ever teach again. The pain felt unbearable, but I managed to get to my car without completely breaking down.
On reflection of this situation I should never have gone back in to school after finding out what was wrong, I should have let me husband ring in sick and that be the end of it, but everything makes more sense when you have had time to reflect and look back. So much for the new start in life as a part time time teacher and the new me! Here I was about to start on yet another journey, unplanned, terrifying and completely afraid where things were going to lead and knowing they would only lead somewhere if I managed to stay alive in all of this!
Many tests followed that summer and early autumn, with my symptoms deteriorating, and by October 2010, I was referred to Papworth Hospital in Cambridgeshire, a specialist centre for patients with Pulmonary Hypertension. Here I would get a proper diagnosis and specialist drugs. This was going to be hospital number four I had visited in less than four months.
Pulmonary Hypertension is a very rare condition, where the blood vessels in the lungs become dilated and blocked, causing high blood pressure in the pulmonary arteries and causing the right side of the heart to become strained and dilated, eventually this leads to heart failure. The lungs and heart become increasingly damaged. It is an incurable and progressive disease, but can be treated to hold back the progression.
The waiting period while being referred to Papworth was an extremely anxious time and during this time we researched Pulmonary Hypertension (PH) and joined the PHA association UK (PHA UK). This is a charity for PH sufferers and their families. They had lots of information to help us and a forum where other patients could be contacted for support. This was a great scource of support and comfort to us at the time and the forum and people who helped us on there still are and many of them have now become friends either online or I have managed to meet them in person. The PHA sent us lots of informative and reliable brochures about the condition and this really helped me to prepare for some of what was to follow.