How it all started

In June 2007, I counted 40 bruises on my body; I just thought I bruised easily. I realised things weren’t quite right when I started getting pains in my legs. My partner agreed as he had noticed that I fell behind him when walking, when normally I’m strides ahead. I was a keen runner and regularly ran 5-10km with no problems. I had a 5km race coming up but was struggling with practise runs. In August 2007, I went for a run with my sister but got to the top of the road and had to stop.

My family were telling me to go and see a doctor, but I just guessed that I was anaemic so took some iron tablets in the hope that they would give me more energy. I completed a 5km in September 2007 in 58 minutes, which would normally take me 30 minutes. Afterwards I had a Guinness (to help with the anaemia) and I remember looking at the ten exit stairs, wondering how I would climb them.

I began a new job as a Project Accountant in October 2007. I recall the screen being blurred and finding it hard to concentrate. Little did I know that this was my eye bleeding due to low platelets.

I made it to the Doctor’s

The day I eventually got round to seeing the doctor I sat on the train on the way home from work and tears filled my eyes as I looked down at my hands which were bruised from carrying a bag. I started fretting as to how I would get to the doctor’s as it was a ten-minute walk and I just didn’t have the strength. Finally, I made it to the surgery and was called in to see the doctor who asked if I was always this pale and sent me for a blood test the following day.

Journey to diagnosis

A couple of days later, I got off the tube and climbed the few steps to the top where I had to rest. The thought had crossed my mind that maybe I should call an ambulance, but I didn’t, and carried on to work. That evening I got home from work and listened to my answer phone messages. It was the doctor telling me to go straight to A&E because my haemoglobin (Hb) was 5.2 grams per decilitre (anything below 12 is considered low). I had no idea what this meant but I called a cab and, strangely, I felt a sense of relief after being told that something was wrong and that I wasn’t going mad. I went to King’s College Hospital and no sooner had I sat down, my name was called. I remember thinking this seemed odd as lots of people were before me. Before I knew what was going on I was lying on a bed with monitors attached to me and the tests began.

The ‘D’ day

It took two weeks to finally diagnose me. On the day of diagnosis the consultant and a doctor came to see me and told me that I had aplastic anaemia. I’d never heard of it, and as they told me it wasn’t a cancer, I wasn’t really concerned. But as the consultant continued to tell me more about the disease, the more upset I got. I knew it was serious. Aplastic anaemia is a rare bone marrow disease, caused by your immune system attacking your bone marrow. As a result, your bone marrow doesn’t produce enough blood cells. I was put in a room to myself due to low neutrophils and increased risk of infection and I was having regular blood transfusions.

Treatment

People who have received blood transfusions will vouch for me when I say it is an amazing feeling. People around me could see the colour returning to my face. I had a shower and danced in there because at last it no longer hurt to stand and wash my hair. The relief was immediate. It was all a bit of a blur for the next four weeks. I had a Hickman line inserted, which I hated and continued to do so for the entirety.

I was treated with horse ATG (a protein which suppresses your immune system). The first few days were fine but then I got really bad joint pain, which was painful to just wriggle my fingers. I was given lots of medication to ease the pain - so many that I remember taking a photo of them all lined up! I was then given cyclosporine (another drug that keeps your immune system suppressed). I was gradually weaned off this drug over the next 12 months. The idea is that you slowly allow your immune system to return and hope that it works correctly.

The challenges

The worse thing in all of it was the lack of sleep. I wouldn’t sleep in the day because I was afraid that people would think I was lazy and at night I couldn’t sleep due to the noise in the hospital. It was the worst few weeks of my life. Luckily, I only spent six weeks in hospital. I did have to go back for four days due to catching an infection through my Hickman line which they removed and luckily never needed a replacement.

It was strange coming home and it took me a good few weeks to be able to sleep and get back into a routine. It was all good from then on and a busy few years prevailed.

Light at the end of the tunnel

I came out of hospital in December 2007, returned to work in March 2008, ran the London Marathon in April 2009 and gave birth in 2011 and 2013 to two beautiful children.

There is a 35% risk of aplastic anaemia relapsing during pregnancy and my blood counts did fall. I visited the hospital twice a week and was exhausted. But the care I received from King’s College Hospital was amazing and luckily, days after receiving treatment, my counts rose.

After my experiences with a Hickman line and realising just how cumbersome and inconvenient living with it could be, so I started to design a Hickman line holder. In 2012 I founded the Central Line Holder; a specially designed pouch that holds and supports a Hickman line. It is made from antimicrobial fabric and comes with a showerproof holder, making it much easier to live with a Hickman line.

At present, my counts are still lower than an average person, but they are perfectly good enough for me to live a normal life.