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Central Line Holder
Sarah shares her experiences of living with a Hickman Line in her beautifully written and heart wrenching blog post
Central Line Holder
In June 2007, I counted 40 bruises on my body, shortly afterwards I began to get pains in my legs, even walking was proving difficult. I had entered a 5km in September and had to walk most of the way, I was also sporting a black eye where I had knocked it with a button when getting dressed.
I’m on the left, the one with the black eye.
After the 5km I had a Guinness (to help with the self-diagnosed anaemia) and I remember looking at the ten exit stairs, wondering how I would climb them.
I ignored all of these warning signs!
I began a new job as a Project Accountant in October 2007. I can remember the screen being blurred, and finding it hard to concentrate. Little did I know, this was my eye bleeding due to low platelets.
The following week I made an appointment to see the doctor. On my way from work to the doctors I sat on the train 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. I did of course make it to the surgery, the doctor asked if I was always this pale and sent me for a blood test the following day, a Saturday.
The following Monday, I got off the tube and climbed the few steps where I had to rest. I thought about calling an ambulance, I thought I was going to collapse; stupidly I carried on to work.
That evening when I got home there was a message from the doctor telling me to go straight to A&E because my haemoglobin (Hb) was 5.2 (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 stood in the hospital reception queue and couldn’t stop shaking; I was so scared and full of adrenalin. 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 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 when the consultant said it’s ok to cry, I would cry to if I was diagnosed 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 in a room all to myself due to low neutrophils and increased risk of infection, and I was having regular blood transfusions.
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; it 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 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. I spent six weeks in hospital.
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 an idea. In 2012 I founded the Central Line Holder; a specially designed pouch that holds and supports the 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. Two wards at Addenbrookes hospital have the holders along with Stoke Mandeville, whom have purchased the holder on three separate occasions.
Hospitals are purchasing through their charitable fund, and Macmillan fund.
At present, my counts are still lower than an average person, but they are perfectly good enough for me to live a normal life.
Over the years I’ve written a few articles like this, and every time it is very emotional, they take a while to write as I keep crying. These days it’s more about the children and leaving them without a mum. I’m in remission and there is a 20% chance of it returning. Also because of the treatment I have an increased risk of other diseases like Leukaemia and MDS. I rarely think about this, and focus on the positives; my two children and amazing partner Pete, who has helped me more than he will ever know.