Can you imagine having to cope with a heart attack, stroke, or serious respiratory condition?
Now imagine having to cope with all three.
That’s exactly what Eileen has endured.
Chest, heart and stroke conditions are often linked, which is why NICHS works with all three. The story below is about a lady who has all three conditions, as well as other long term health problems. But it is also a story about someone who is amazing and whose positive attitude is an inspiration.
“1994 was a memorable year for me. I was just 22 years old and working hard as a retail manager. I met Gary, my husband, and we started going out together. But it was significant for another reason – I was diagnosed with Systemic Lupus Erythematosus.
One day whilst at work I bent down and just couldn’t get back up again. It happened a few more times and eventually the pain in my joints got so bad I went to the doctor. He took one look at the butterfly shaped rash on my face and thought it could be ‘Lupus Erythematosus’ – an incurable condition that makes the immune system attack normal healthy tissue. Lupus can damage your joints, kidneys, skin, heart, lungs and your brain. Blood tests confirmed his diagnosis.
Barely able to walk and in terrible pain, I was admitted to Musgrave Park Hospital and given steroids to get my symptoms under control. Eventually I was able to return home to my mum, which was lovely. And having Gary beside me has made things that bit easier.
I wasn’t and have never again been well enough to return to work, but I did have my life back.
In February 2003, my kidneys failed. As well as sticking to a strict diet, each night I had to attach myself to a machine to undergo dialysis while I slept.
Lupus then started to attack my lungs. I developed bronchiectasis, which is inflammation of the tubes in the lungs. I had to use inhalers which, like the dialysis, became a daily part of my life.
Then in January 2007 I got a terrible pain in my chest. Gary took me to see my doctor who sent me straight to hospital. It was Gary who realised when I took the heart attack. He saw the colour drain from my face and called for help. I had a stent fitted and once again my life returned to normal. At least as normal as life can be when you’re trying to plan a wedding whilst coping with lupus, kidney failure, nightly dialysis, bronchiectasis, steroids, inhalers and a stent!
Gary and I were delighted to marry in May 2007 but we had to spend our first Christmas as a married couple in hospital. Less than a year after our wedding I had a stroke. One morning I woke up paralysed down my right hand side. Gary had left for work so I phoned my Mum. All I was able to say was “Mummy” and “stroke, stroke.” She understood what had happened and immediately called an ambulance.
Amazingly my speech returned quickly and on the third day I even managed to wiggle my little toe. After working hard with the physio and occupational therapists, I was able to be moved in a hoist. However, rather than being a great step forward for me, I found it very difficult emotionally. You feel vulnerable and a burden being moved around in a hoist. You feel like you’ve lost your dignity. But I wasn’t going to sit and cry. There are so many people in this world who are worse off than me.
After three months I was able to go home. I had a wheelchair, but I mostly managed with a walking stick. The stroke meant that I could no longer manage my dialysis at home. My right hand was too weak to connect everything up, so I had to spend three evenings each week in hospital having dialysis.
One evening my phone rang. Miraculously after 6½ years a suitable kidney had become available and following hours of tests I was given the all-clear to have a transplant.
Unfortunately there was a downside. Three days after my kidney transplant, I suffered a second stroke. This time the stroke badly affected my speech. Now, I often struggle to remember names or faces so I carry a notebook to help jog my memory. I’ve also lost peripheral vision on my right hand side so I can no longer drive, which has taken away my independence.
After my second stroke I started going to a Young Stroke Group run by Northern Ireland Chest Heart & Stroke. When you have problems with your speech, you have to push yourself. I’m good at that, but not everyone is. Being part of a group really helps. As wonderful as Gary and my Mum are, it really helps to talk to people who have been through similar things. Together we share tips on how to overcome difficulties. Hopefully I’ve been able to help other people too.
This all began when I was just 22 years old. I am now 44 and I’m proud to say I’ve learned to write with my left hand. I’ve also started baking again. I can’t grip with my right hand but Gary has found lots of special equipment to make it easier for me to bake.
I’d like to take this opportunity to pay tribute to the wonderful man who has been by my side through all of this. He is my absolute rock. I may not have been very lucky in health but I’ve been extremely lucky in love. I also want to thank my Mum whose love and care has made such a difference.
The incredible help and support that NICHS provided for me, Gary, and my mum has made a huge difference to the way we have coped with my illness and the after effects. They are still there helping us today.
That’s why I’m asking you to help NICHS continue the life-changing, life-saving work they do. Please donate whatever you can. Every pound you give really will make a massive difference to someone like me.” Eileen xxx.