Aplastic anaemia, celebrating 10 years in remission

In June 2007, I counted 40 bruises on my body. I thought I just bruised easily. However, I realised things weren’t quite right when I started getting pain in my legs. My partner agreed. He had noticed I fell behind him when walking when normally I would be strides ahead. I was a keen runner and regularly ran 5 -10k with no problems. I had a 5k race coming up but was struggling with practice runs. In August 2007, I went running 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 assumed I was anaemic and took some iron supplements, in the hope that they would give me more energy. I completed a 5k run in September 2007 in 58 minutes – it would normally take me 30. Afterwards we went for a drink and I remember looking at the ten exit stairs, wondering how I would climb them. Around the same type, in October 2007, I began a new job as a Project Accountant.

I recall the screen being blurred and finding it hard to concentrate. Little did I know, this was my eye bleeding due to low platelets.

A trip to see the doctor

The day I eventually got round to seeing the doctor I sat on the train on my way home crying.  My hands were bruised from carrying my bag. I worried about how I would get to the doctor, as it was a ten-minute walk and I didn’t feel as if I had the strength to get there. The doctor asked if I was always this pale and sent me for a blood test the following day.

A couple of days later, I received a phone message from the doctors telling me to go straight to A&E because my haemoglobin was 5.2 grams per decilitre (anything below 12 is considered low).  I remember feeling a sense of relief after being told that there was something going on and that I wasn’t going mad. I went to King’s College Hospital and, just as I was sitting down, my name was called which seemed odd as lots of people were before me.

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. They told me it wasn’t a cancer so I wasn’t really concerned. But as the consultant continued to tell me more about the disease I realised how serious it was.

Life with aplastic anaemia

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 an increased risk of infection and was given regular blood transfusions.

People who have received blood transfusions will vouch for me when I say it is an amazing feeling. You could see the colour returning to my face. I had a shower and danced a celebratory dance 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 I then started to experience joint pain.  It was even painful to wriggle my fingers. I was given lots of different medicines in an attempt to ease the pain – so many I remember taking a photo of them all lined up! I was then given a different medicine that keeps your immune system suppressed. I was gradually weaned off this over the next 12 months. The idea is that you slowly allow your immune system to return and hope that it works correctly.

The worse experience 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. I came out of hospital in December 2007, returned to work in March 2008. I went on to run 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 I was utterly exhausted. But the care I received was amazing and luckily, days after receiving treatment, my counts rose. At present, my counts are still lower than an average person, but they are perfectly good enough for me to live a normal life.

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