How it all began

In January 2018 I moved down to London from Edinburgh to begin my new grad job. Immediately prior to the move, I had started experiencing regular nose bleeds which were becoming more intense. I suspected something was wrong after getting out of breath walking to my tube station and my friends telling me that I looked increasingly pale. I remember playing a game of 5 aside football with my new work colleagues where I could barely run after 2 minutes from exhaustion.

I decided it was best to go see my GP to get checked out, although I suspected it was cold/flu – London had just experienced the ‘Beast from the East’. My GP told me he was slightly concerned and took a blood test – I was told to call back in three days for the result. However, that same evening I received a call telling me some of my blood counts had come back extremely low and I was to get a taxi to hospital straight away.

 Diagnosis

I seemed to skip every queue at the very busy hospital and saw a doctor almost immediately. They took more blood tests and then put me in a wheelchair to transport me to another room - at this point I realised it might be slightly more serious than the flu! I went through a wide range of tests over the evening to try determine what was wrong as well as having my first blood transfusions. The next morning a doctor confirmed there had been no sign of any cancerous cells in my blood results, which was a massive relief – although I still had no idea what was wrong with me.

 It was only after 3 days that aplastic anaemia was mentioned, and this was confirmed after a bone marrow biopsy (not a pleasant procedure!). I had never heard of the disease before but was told it was serious and I would possibly require a bone marrow transplant from one of my siblings to fix it. Soon after my diagnosis was confirmed I was transferred to UCLH – where the implications of my illness were explained. The doctor said I was likely to be off work for at least 6 months which hit me hard as I was really enjoying the new job and starting my career. It also meant missing out on two holidays I had booked for the coming summer. I got over this quickly as I realised that regaining my health was the most important thing for me and my focus for the coming months.

 Next steps and treatment

The next few months were a bit of a blur of hospital appointments and blood transfusions. Unfortunately, neither my brother or sister were a good enough match for a transplant so I underwent a course of ATG (horse) and cyclosporine treatment. This treatment aims to suppress your immune system for a short while in order to give your bone marrow time to heal and hopefully make blood cells again. It takes 3-4 months to see if this treatment is successful, and even although I was back at my flat it was a very restless time.

I had to be in hospital twice a week to receive blood transfusions so that my counts were at safe levels. Extremely low neutrophils (one measure of white blood cells) meant high risk of infection – I’ve not been allowed to get on the tube since diagnosis! Combining this with the fact I’m told to avoid busy or crowded places as much as possible, it’s been very limiting what I can do.

All my doctors have said

this disease is a marathon not a sprint

Thankfully, I had a huge amount of support over this time from my girlfriend, flatmates, friends, family, and work colleagues. I’m particularly grateful to my mum who has temporarily relocated to London, I can count the number of hospital appointments she’s missed on one hand!

Where I am now

After the four month mark I had a review with my doctor, who unfortunately said the treatment hadn’t raised my blood counts. Thankfully I have now found a 10/10 unrelated match on the Anthony Nolan register and am due to have a transplant in the near future. This is an extremely effective treatment, especially due to my young age and relatively healthy lifestyle. As such, I’m feeling very positive about this treatment and recovering my health over the coming months.

Thank you for taking the time to read my story – I hope by sharing it to spread awareness of aplastic anaemia!

 

Charity fundraising, August 2018