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Sarah Cheeseman was diagnosed with a rare bone marrow disorder, aplastic anaemia, in 2007. Her experiences of a Hickman line led her to develop the Central Line Holder to make living with a Hickman line that little bit more bearable. Here, she tells her story.
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; it 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, this was my eye bleeding due to low platelets.
The day I eventually got round to seeing the doctors 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 doctors 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.
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 very 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.
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. People 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 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 I remember taking a photo of them all lined up! I felt like a walking pharmacy!
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 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. 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, not to mention the risk of infection that comes with it, it gave me some food for thought. In 2012 I founded the Central Line Holder; a specially designed pouch that holds and supports a Hickman line. It is made from antifungal and antibacterial fabric and comes with a showerproof holder, making it that little bit easier to live with a Hickman line. Currently, I am working on raising awareness of the Central Line Holder amongst hospitals up and down the UK, encouraging them to stock the product.
Leukaemia Care has been fantastic in supporting the Central Line Holder and I will be attending their nurses conference in November which will help to raise awareness of the product amongst the nursing community.
At present, my counts are still lower than an average person, but they are perfectly good enough for me to live a normal life. And I can’t ask for more than that.
2019 update from Sarah
“My children are now 5 & 8 which is a lovely age and we have moved to Woldingham in Surrey, much quieter than Sydenham and has a really country village feel, I play lots of tennis and do lots of gardening, I’m on the Horticultural committee and life is good! I’ve been feeling really well and live a normal life, I even did a triathlon last year! My first and probably last!
On the down side a day doesn’t go by that I don’t think about a relapse and I always have a tear in my eye at my annual hospital appointment where they give me the all clear. I’m on lots of forums and hear of people relapsing and so the fear never goes away, I have tears in my eyes writing this, If I live to see my children grow into adults I’ll be happy.
Central Line Holder is going really well, It appeared in the Daily Mail in July 2018! I have received such lovely feedback of how it is helping keeping the line safe and how it makes showering much easier. Several hospitals have purchased the holders including Addenbrookes and Stoke Mandeville, and several more hospitals display the leaflets.
A message to all; Don’t ignore symptoms that are out of the ordinary! They can come on really slowly, if people are noticing something different about you then something is possibly wrong, people were noticing my breathlessness and bruises at least 6 months before I went to the doctors.”