Saturday, 24 August 2013

When September Comes

Five years ago today I was still blissfully unaware I had PH. I'd spent most of the summer planning my lessons for the next year and I remember being particularly pleased with myself because I'd designed a term of lessons for my year sevens based on The Apprentice. As it turned out they loved it and it earned me a high praise from Ofsted. I was also looking forward to enrolling in a part time university course. I was going to do a degree in Child Psychology. I figured if I understood how the little darlings thought I'd be more effective at teaching them. I was happy at my school, happy with my home life and for once I couldn't see anything but good things on the horizon.

On September 12th 2007 I was given the diagnoses of Pulmonary Hypertension and felt relieved. If only I'd realised what it meant maybe I wouldn't have been so delighted. So why was I so happy to find out I was ill?

My problems started about three years before. I'd always been fit. I swam, I walked everywhere, I did weight training and I had an exercise bike and stepper (a machine you walk on which offers resistance so you are always going up hill) at home for when I didn't have the time or inclination to go out. I began to feel breathless during swimming and found it hard to do as much as I had been doing. Then when out walking I found myself stopping to catch my breathe after a steep hill or flight of stairs. I went to my GP who diagnosed a worsening of the asthma I'd had since early childhood. My inhalers were changed and for a while I felt there had been some improvement. I had been under a lot of pressure at the time. I'd just completed my teaching degree and was working at the worst school in the area. My head of department had upped and left half way through the year leaving just me and another newbie to run the department and take over his classes. In short I hadn't had the time to do much exercising and felt my fitness was waining, so I threw myself back into it and for a time all appeared well.


About a year later things started to deteriorate again so I increased my exercise and hoped for the best. I was now at a much nicer school and was in my second year so was no longer the newbie teacher everyone played up. One morning while preparing for class with Ashaf, one of the technicians I worked with, I suddenly collapsed. I couldn't catch my breathe, I was grey and sweating and Ashaf thought I was having a heart attack. Other teachers arrived and started to do strange things such making me breathe into a paper bag. The paramedics arrived, took my blood pressure, turned white and blue lighted me into hospital. This event was the beginning of two years of patient ping pong.

The cardiac department said it was a lung problem while the lung department said it was a cardiac problem. Over the course of two years I was given diagnoses that ranged from the sublime (severe asthma) to the ridiculous (you wear your bra too tight) but I just kept on deteriorating. Eventually my cardiologist said he would refer me to a psychologist as he thought most of it was 'in my mind'. I wasn't happy about this but had secretly begun to doubt my own sanity so agreed to at least attend the initial appointment. In the meant time I was told to keep exercising and things would get better.

Then things took a turn for the worst. I was on my stepper in the back garden pounding away with my music blaring in my ears and about five minutes from the end of my timed session. I suddenly felt overwhelmingly drained but I pushed on and then staggered into the kitchen where I grabbed a drink and slowly did some warm down stretches. Normally my heart rate returned to normal fairly quickly but today it just kept going and then started to increase until it got to 182 bpm. I couldn't breathe and I felt sick. I called for Peter, who thankfully was home that day and he drove me straight into accident and emergency. I was put in the waiting room and after an hour a bored looking nurse came out and sat next to me to take my pulse. Things moved very quickly after that and I ended up on the cardiac ward for a week. The psychiatrist was cancelled but they still had no idea what was going on. I was sent home with instructions to stick to gentle exercise for the next month. Two weeks later I was watching TV when my heart thumped. Within minutes it started racing again and I was back in hospital. This time the drug didn't work so they had to cardiovert me (shock my heart back into rhythm) and then referred me to Harefield for an ablation as they now thought I had Atrial Flutter or AF.

My appointment duly arrived and in June 2007 I arrived for a pre-op consultation. The procedure was explained to me and loads of tests were carried out then I had to wait to see the consultant. When he arrived he looked very grave. He explained to my that the ECG my local hospital had sent of my heart rate while in flutter and the tests they'd just done had thrown up some surprising results. He thought that my dodgy heart rhythm was a symptom of something much more serious and not just a stand alone condition as first thought. I was asked if I was in any hurry as he wanted another doctor to see me. This doctor was a specialist in Pulmonary Hypertension. I'd never heard of that but figured from the wording it had something to do with blood pressure and lungs.

Dr. Swann was lovely. She explained what PH was and went through my entire health history before announcing that she wanted me to attend the Royal Brompton for a series of tests including a right heart catheter test, I didn't like the sound of that but was so fed up I just wanted a yes or no answer so agreed. I received a letter the following week booking me in for 10th September, which was a pain because it was right at the start of the school year. My employers though were extremely sympathetic, told me not to worry and to go for it.

September arrived and I had a very busy week. I think they tested everything except my eyes and my IQ. On Wednesday morning several important looking doctors and a gaggle of nurses gathered around my bed. Yes I had PH, worse I was extremely ill and was on the border of WHO class four (this is end stage). My extreme fitness had worked against me and kept my symptoms at bay until my poor heart could no longer take the pressure and was sending out frantic danger signals. The reality check was being told I'd be unlikely to see my fiftieth birthday, at that time I was just coming up to forty eight. Despite all this the relief of actually being told I was ill and it wasn't all my imagination made me smile like an idiot, it was only when I sat in bed reading the literature they had given me that it began to dawn on me that I was in serious trouble. Because of the severity of my condition they started me on drug therapy straight away and I was told not to go into work until I was stable.


Three months and several drug changes later I was finally stable on Sitaxentan. My life returned to normality, more or less. I was given permission to do some light exercise so I still went swimming and I walked. I had a lot of thinking to do and walking was my therapy. Sometimes I'd find a quiet spot and sit and cry my eyes out. Mostly I just seethed with anger. I became, for a short while, not very nice. I took my frustration out on everyone, my medical team, my family, my friends, my work colleagues, my students and even strangers on a PH support forum who tried to help me through coming to terms with my illness. Going back to work helped. I didn't have time to think properly but it also revealed how ill I really was. Back in June I was still operating at full tilt. After a six month break I found the going tough. My normal school day started at eight and ended at four, then I'd go home have something to eat and read the paper. Then I'd play with my boys, take them swimming or for a walk or up the park. Tea was at six then the boys were dispatched to bed or to do homework and I settled in the dining room to mark books and go through the following day's lessons. I'd pack up around nine or ten, watch the news and go to bed. Now I'd arrive home at four, lie on the bed and sleep until six. Thankfully Peter was working from home by this point so he was able to deal with the boys. I'd eat, spend about an hour on my school work and then flake in front of the TV. My work and home life began to suffer.

A year later I moved to a school closer to home and worked as a cover teacher. This kept me in the classroom but relieved me of all the stuff that went with it such as the planning and marking. My idea of doing another degree went to the wall about this time too. After just one year I decided I couldn't do it anymore and found the job I do now. I'm still required to use my brain but I spend the day sitting down and can go at my own pace.
Since diagnoses I've gone through every drug on the market culminating in the IV Flolan I use now. I've had three further cardioversions and finally had my ablation in 2011. I've nearly died, twice. I'm now on the transplant list and I have outlived my use by date by three years.

When I think back over all I've been through, all I've achieved and all the set backs I am amazed I'm still here. I've lost a lot of PH friends over those five years and each loss makes me wonder how much longer is left for me. I could defy all medical predictions and live another five years or more. I could get the much longed for call for transplant and end up having another thirty years in front of me. All I know for sure is that my time is running out. Every August/September I reflect on my PH journey and count off another year. My biggest wish is that next year I can start counting off the years post transplant.