Ankylosing Spondylitis A Form Of Spinal Arthritis Broke My Heart

Deborah Fletcher, 45, sits comfortably in her quaint home just outside of Manchester, it is peaceful, warm and inviting, you can hear the sound of passing traffic in the distance and more closely, a mechanical ticking, the sound of Deborah’s new heart valve.

debTwo years ago, she had undergone open heart surgery to correct a leak from her aortic valve after learning she had ‘Ankylosing Spondylitis’, a form of spinal arthritis.

She said; ‘It all began when I woke one morning and noticed my eye was red and itching. I presumed it was an eye infection and after it not clearing for a few days I saw a doctor and was given medication for conjunctivitis’.

She carried on her normal week, enduring the school run and heading to work as a health and safety officer at a local firm.

‘I thought I had conjunctivitis, not for one second did I think there was something wrong with my heart.

Deborah said; ‘It had been about a week and my eye had not really cleared up, when I woke during the night in the worst pain, I can’t even describe, it’s like being stabbed in my eye, I couldn’t look at the light and it was visibly swollen’.

Taking herself to accident and emergency, Doctors transferred Deborah to the Manchester Eye Hospital where she was told her she had a severe case of iritis and she was treated with steroids.

She said; ‘I spoke to a few people and found that some friends had also had iritis and so I wasn’t really alarmed or concerned. I just got on with it’.

It was only after the iritis, described as ‘inflammation of the iris which causes redness of the eye,  aching pain, sensitivity to light and blurred vision’ had come back three times, that the hospital decided to investigate.

‘I was asked lots of questions, particularly about back aches or any pain in my spine, I told them I had often suffered from a trapped nerve in my lower back’ she explained, it was something she which she had never worried about and just put it down to poor posture or general wear and tear.

Deborah a fit woman, enjoyed running and trained each week with her local running club. She is competitive and enjoys setting herself goals, pushing herself at training, on a quest to beat her own timings at the park run she attended.

She reflects back on those times; ‘I would train each week the same as everyone did, but I always struggled.

‘I wouldn’t quit because I like to succeed and want to be strong, but as the races finished people would talk to me and I never had the breath to answer them back.

‘I asked my coach, ‘how do you breathe when you run?’ because I thought the struggle was down to my own technique. I never considered I was ill.’

After having tests at the hospital, including a computerised tomography (CT scan), X-rays and blood test, the hospital found that Deborah was the carrier of the gene HLA-B27 that has strong links to ankylosing spondylitis.

‘I was referred to a rheumatologist and at this point, I started to Google ankylosing spondylitis, I read about the effect on the spine and how people can end up in a wheelchair.  I was worried about that.’

The rheumatologist carried out further test, looking more closely at Deborah’s spine to assess any long-term damage.  He requested an electrocardiogram (ECG), it was here where they discovered the common arthritis was, in fact, a rare form and that over the years it had been damaging her heart.

Deborah was asked to come into a side room, the type at hospitals where you know that the news is bad, she walked in and took a seat.

They asked her if she had someone she would like to call, apprehensive of breaking whatever news they had for her whilst she was alone, but she told them to go ahead.

She said; ‘They explained that the ECG and test had shown that my heart valve was leaking, it’s called aortic regurgitation, and there was an aneurysm, they told me about rare cases of ankylosing spondylitis, about 1% of cases, where it can affect the heart, and that this was happening to me.

‘I think I didn’t fully comprehend what was happening, they told me I would have to have surgery. I replied that I was going on holiday with my friends; I had just booked a deal and was to fly out in a few weeks,

‘He told me ‘Cancel it, you won’t be going anywhere’ He looked concerned as he said ‘You’re a very poorly lady and you need heart surgery, without it you will die.”

It had been just over a year at this point since Deborah’s first symptoms and visit to the hospital, she had taken it in her stride, but right now, she felt afraid and alone.

Deborah was admitted into the hospital for open-heart surgery, she was told the operation would last eight hours where they would replace the aortic valve, and she had to make a choice between a mechanical valve and tissue. Opting for mechanical, as it is less likely that this would need replacing again, the tissue one would only last 10-15 years.

She was also told that the damage was more severe than expected and so she would also need to have a section of the aortic arch replaced, the aortic arch is the portion of the main artery it distributes blood from the heart to the rest of the body.

Surgeons would use ‘deep hypothermic circulatory arrest’ a surgical technique that involves cooling the body, it is described as a form of carefully managed clinical death in which heartbeat and all brain activity cease.

Deborah said; ‘I was in the hospital for nine days after surgery. I don’t really remember too much from being in intensive care. I recall waking after the surgery in a white room, I could sense someone in the room and at that point, I thought I was probably dead.

‘As I became more aware I realised they were nurses and I was being washed and cared for.

‘It was a strange feeling, I was aware of tubes everywhere, in my neck, my hands, and my tummy; my chest had been cut from my neck to under my breastbone and the skin held back together with glue.

She was later moved to the high dependency unit for heart patients where she began her recovery.

Deborah said; ‘I was the youngest on the ward, I was only 42, It was here that I felt most vulnerable. I looked at myself, unable to walk, I was scared to lift my body, worried that my chest would open, I didn’t have the strength to shower myself, I sat naked, exposed whilst someone washed my hair. It was the weirdest feeling.’

After recuperating at home and getting back to a new kind of normality Deborah found herself facing one last hurdle, five months after her first surgery she developed an infection after surgical wires used to re-join the breastbone were irritating her insides;

She said; ‘I was admitted back into hospital and was there for almost six months as they battled to rid the infection’.

It’s now been two years since the operation and Deborah is back in work and trying to rebuild her life.

She struggles to embrace the scar left on her chest but has learnt to embrace the loud clicking noise present when you are around her.

She said; ‘It’s bitter-sweet really, I thought for a long time that I couldn’t put up with it, but now when I can’t hear it when I am preoccupied I have to stop and check it’s still there, its reassurance that my heart is working.

‘The whole experience has changed my life in so many ways, I am lucky to be here and don’t take that for granted but I am also left fearful, I think about taking up running again but I’m paranoid that something might happen, I wonder if I ever meet someone will they be able to sleep beside me?’

Ankylosing spondylitis is a condition in which the spine and other areas of the body become inflamed.

The symptoms of AS can vary, but usually, involve:

·         back pain and stiffness

·         pain and swelling in other parts of the body – caused by inflammation of the joints (arthritis) and inflammation where a tendon joins a bone (enthesitis)

·         extreme tiredness (fatigue)

These symptoms tend to develop gradually, usually over several months or years and may come and go over time.

You should see your GP if you have persistent symptoms of AS.

For more advice and exercises for low back pain and other injuries, please visit www.octopusclinic.com/back-pain

Lucy Macdonald is a Chartered Physiotherapist at the Octopus Clinic, London, she treats patients that have been diagnosed with arthritis, she said; “Physiotherapists are often the first to pick up the symptoms of ankylosing spondylosis (AS) when the patient seeks treatment for their low back pain. If we suspect AS we will refer our patient to have test with a rheumatologist”.

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