This is Holly’s story in two parts.

2009 – Stress, it was my best friend … that was until it very nearly killed me. As a journalist I used stress to help me find the best stories meet deadlines and generally be the top dog at work, but it was to be my downfall.

In 2009 I woke up one morning with a stinking cold, aches and pains and thought “Oh god I’ve got man flu”. I went into work and tried to carry on as normal but I couldn’t seem to get rid of it and decided a few days in bed would cure all ills – it didn’t. My nose was constantly running but I couldn’t seem to blow it and when I dapped at it there was always blood on the tissue. I had a wracking cough, headache, sore mouth and was absolutely exhausted. I’m no delicate little thing and love my food but for once I wasn’t hungry and couldn’t seem to eat anything that was put in front of me. My then fiancé, James, even tried to tempt with a full fry-up and I think I managed to swallow a bean or two before I pushed the plate away (he was gutted). One evening I coughed up blood, so got an out-of-hours appointment where the GP diagnosed tracheitis and gave me antibiotics. I was sure I’d start to feel better really soon – I didn’t.

Things came to a head one Sunday evening when my family decided it was time to take me to hospital. It was no easy feat but after hours of waiting I was finally admitted. They took blood and sent me for a chest x-ray which, although I didn’t realise at the time, showed my lungs were full of tumours. At about 5.30 am I was taken up to a holding ward; I stayed there for the next two day days with my condition worsening. I lost most of my hearing, my gums started to disintegrate and my energy levels look another nose dive.

I was then taken to the high dependency unit on the respiratory ward where doctors performed a nose biopsy to confirm their diagnosis. It was a traumatic and painful procedure and as it was finished one of the doctors lent down to me and spoke in my ear “We’ve got a crash team standing by Holly”.

The next day I was to find out exactly what was wrong with me. I had Wegener’s Granulomatosis. At first it meant nothing to me but after it was explained I realised that I was in for a rough ride and that my life would never be the same again. I was told that the most effective form of treatment was cyclophosphamide, but that it was chemotherapy based drug. I was 26 years old and due to get married in nine months, so the thought of chemo and what it would do to my fertility was upsetting. In fact I was more upset and worried about that than the disease itself. Because of my concerns and the lack of egg harvesting case studies, my doctors decided to give me intravenous pulsed steroids and mycophenolate instead. The pulse steroids worked like a miracle and about an hour after the drip had run dry I started to feel a whole lot better.

Little did I know that this was just the start of another journey, one that would take me on a long and winding road. I was discharged two weeks later, just days before Christmas. Over the coming weeks I made slow progress and gradually began to build up my strength again after being so ill. I also managed to build up my weight quite nicely and although I lacked the energy to use my legs much, my hand to mouth movement didn’t seem to suffer from the same problem – miraculously really!

For the next four months I was taking 2000mg of mycophenolate daily and 60mg prednisolone (steroid). This very high dose was gradually reduced. Although my condition had improved I wasn’t making as much progress as we’d hoped. After much discussion it was decided that I should begin a course of cyclophosphamide which would be given intravenously every three weeks. I was to have six sessions and the dose would be 500mg.

Well that was the plan but as I was coming to realise, things very rarely go to plan when you’re dealing with WG. After my second session I ended up being admitted to hospital with severe chest pains – inflammation in the pericardial sac around my heart. I had another round of pulsed steroids and my consultant decided to increase the number of cyclophosphamide sessions – the frequency and the dose. It was to finish just a week before my wedding day.

Holly and James

It did and, on the day I got married, tests showed my inflammation markers were the best they’d been and I was able to enjoy my day to the full.

Fast forward to 2012

Holly and James feared that, because of the cyclophosphamide, Holly’s fertility would be affected and that they would never have the family they yearned for. Well, see the photograph below:

Robyn Hampshire

Information on Fertility and Vasculitis

Dr David Jayne, Addenbrooke’s Hospital, Cambridge, has provided Vasculitis UK with an article on Fertility and Vasculitis