Sarah - Holder ...
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Aplastic Anaemia - something good from something bad

Sarah - Holder ...
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20 Dec 2014

How my experience with Aplastic Anaemia has helped me help others

In June 2007, I counted over 40 bruises on my body; I just thought that I bruised easily.

I first noticed that things weren't right when I started getting pains in my legs, and my partner agreed as he had noticed that I fell behind him when I was walking, when normally I'm strides ahead.

I was a keen runner and had a 5k run coming up but was struggling with practice runs. In August 2007, I went for a run with my sister but could only get to the top of the road before I had to stop. My family encouraged me to go to the doctor, but I guessed that I was anaemic, so I took some iron tablets instead.

I completed the 5k run in September 2007 in 58 minutes, whereas normally it would take me less than 30. After the run I went for a Guinness (to help with the self-diagnosed anaemia) and I remember looking at the ten exit stairs of the pub and wondering how I would climb them.

I began a new job as a project accountant in October 2007 and 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.

On the day I eventually got round to seeing the doctor, I recall sitting 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 just carrying a bag. I was fretful as to how I would get to the doctors, it was a ten minute walk and I just didn't have the strength, even having a shower was painful. The doctor asked if I was always this pale and sent me for a blood test the following day (Saturday).

The following Monday morning I got off the tube at Green Park and climbed the few steps to the top, where I had to rest. The thought had crossed my mind to call an ambulance, but I didn't and went to work. That evening when I got home there was a message for me from my doctor telling me to go straight to A&E because my HB (red blood) was 5.2. I had no idea what this meant. At last I gave in and called a cab instead of taking the bus. I felt a kind of relief at being told that something was wrong.

I went to Kings Hospital and reported to the desk. No sooner had I sat down when my name was called which I thought was odd as lots of people were waiting. Before I knew what was happening, I was lying on a bed with all monitors attached to me and the tests began.....

It took two weeks to diagnose me, because Aplastic Anaemia is so rare (150 diagnosis in the UK a year). It wasn't a bad two weeks, I'd been told that I didn't have cancer, I had a room to myself due to low neutrophils and I was having regular blood and platelet transfusions. And for those of you who have received blood transfusions they 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 the cubicle because at last it no longer hurt to stand and wash my hair. The relief was immediate.

On the day of diagnosis the consultant came to see me, he told me that I had Aplastic Anaemia. I'd never heard of it and they had ruled out cancer so I wasn't really concerned. The consultant continued to tell me more about the disease, and the more he told me the more upset I got. He told me that it's ok to cry and that he'd cry too if he was diagnosed with AA. It was then that I knew it was serious. Aplastic Anaemia is a very rare bone marrow disease, caused by your immune system attacking your bone marrow. The result is your bone marrow not producing enough red blood cells, white blood cells and platelets. (AA is an auto-immune disease and I now have five of them!)

The following four weeks were a bit of a blur. I had a Hickman Line inserted in order to receive life saving treatment; horse ATG (nearly rabbit as the horse died, but they found a replacement horse!).  

The first few days were fine, but then I got extreme joint pain, so much so that even wriggling my fingers caused me discomfort. I was given lots of preventative medication, around 30 tablets several times a day, along with nasty medicine to drink.

The ATG surpresses the immune system, after the ATG I was given Cyclosporin for a year, this kept my immune system suppressed. I was gradually weaned off the drug in the hope that my immune system stopped attacking itself.

The worse thing throughout my hospital stay was the lack of sleep, I wouldn't sleep through the day because I was afraid that people would think me lazy, and I couldn't sleep at night because of the noise. It was the worse few weeks of my life.

I spent six weeks in hospital before being released, and then had to be readmitted for 4 days a week later due to an infection in my Hickman Line which was then removed.  Fortunately I never needed a replacement.

It was strange coming home, and it took a few weeks to adjust and be able to sleep through the night. I was so weak I would sit on the floor to put washing in the washing machine.

HAPPY ENDING:

- I left hospital in December 2007

- Came up with the idea of a holder for Hickman Lines whilst in hospital www.centrallineholder.co.uk

- Returned to work in March 2008

- Came off all related medication in November 2008

- Ran the London marathon in April 2009

- Had a daughter in March 2011 and another in October 2013. There is a 35% risk of AA returning in pregnancy and worryingly my counts did fall. I was advised to take Cyclosporin, which I declined, although I was told it doesn't harm the unborn child, I didn't want to take any risks. I was monitored closely and had to attend hospital at least weekly which was exhausting due to my lowering blood counts. The care I received from Kings Hospital was amazing, and luckily shortly after giving birth my counts rose on both occasions.

I designed Central Line Holder because I really didn't get along with my Hickman Line and I came across lots of others that felt the same. 

It is made from a special anti-bacterial fabric and comes with a showerproof holder. The idea is that it makes living with your Hickman Line that little bit easier.

I have received great feedback, and have sold to four NHS hospitals, I also donate to children via @remissionpossible for every 100 Twitter followers and 50 Facebook likes.

 Full details can be found at www.centrallineholder.co.uk

Thanks for reading :-)

Comments

24.12.2014

Sarah,

Thank you so much for sharing your story and being so open about your experiences with Aplastic Anaemia. You've achieved so much since finishing treatment and your story will be a real source of inspiration to others currently going through treatment.

The Hickman holder is an absolutely fantastic idea and I'm so, so happy for you that you've gone on to be able to have a family and do things like run the London Marathon. We want all blood cancer patients to be able to go on to enjoy life after treatment and will not stop until that's the case.

Thanks again and do get in touch if you ever fancy doing another challenge as we've got loads of events that you could take part in and help us spread awareness and raise money to beat blood cancer at the same time! Andy

Anonymous
24.12.2014

Thanks Andy
I really need a new challenge, I haven't ran for over a year. I think a 10k may be a nice way to ease back into running.
Thanks for your support
Merry Christmas
Sarah
ps. I'm very happy for people to contact me and ask questions about my Aplastic Anaemia. I know that having children after AA is particularly daunting.

07.01.2015

You're welcome Sarah! I did Run to the Beat last year and would whole heartedly recommend that as a way to get back in to running - it's not until September so you'd have plenty of time to get fit for it.

Thank you so much for your offer of helping others who are currently going through treatment for AA. I think having someone like you to talk to would be of enormous benefit and we'd love to feature you as a patient story on Facebook - would you be happy for us to feature you?

Thanks again and Happy New Year, 

Andy

Anonymous
07.01.2015

Hi Andy

Yes of course, I'm very happy to be featured. Do you need anything from me, or do you have all you need from my post?
I did my first run in over two years last week and it went better than expected, I'll let you know iff I'm ready for a half marathon soonish!

Happy New Year too!
Sarah

Anonymous
09.01.2015

Hi Andy
If you do need further information from me, my email is: sarah@centrallineholder.com

Anonymous
05.02.2015

Hi Sarah,
Thanks for sharing your story and congratulations on the birth of your daughters.
My husband , Val , was also a runner and also had AA,very similar symptoms to you.
Bruising and no puff !
He had the rabbit serum,didn't work so ended up having a transplant,luckily his brother was his donor.
Well done on your design too,all the best for the future,
Una

Anonymous
06.02.2015

Hi Una
I believe that they've now stopped rabbit ATG due to its lower success rate.
Glad the BMT went well, and all the best for your futures too.