MY HEALTH EXPERIENCE: CHRISTINA BARRETT:I went from healthy new mum to intensive care with MG
I WAS 37 when my second daughter Rachel was born in March 2004. I felt the usual new-mother tiredness but didn’t think anything of it until a few months later when I began to have strange symptoms. Initially I had double vision when I watched TV and felt dizzy when I was driving.
I went to the eye and ear hospital for a check-up. But doctors told me that I had perfect eyesight.
However, the symptoms continued so I went back and had some more tests but they still couldn’t find anything wrong. I tried to carry on as normal but one day I was out at the clothes line and couldn’t lift the laundry from the basket to the line – my arms were unable to reach up.
Initially I thought I was having a stroke and immediately went to the GP. But she thought I was showing signs of MG (Myasthenia Gravis) and referred me to a consultant – Dr Ray Murphy at St Vincent’s.
I went straight to hospital and a neurological doctor from Dr Murphy’s team came to see me. After running several tests, I was diagnosed with MG, a very rare auto-immune disorder – so rare that fewer than 400 people in Ireland are known to be suffering from the condition.
At first, I reacted strangely to the news. I didn’t really think about myself, it was the kids (Tracy and Rachel) who I was most worried about. I asked the doctor if it would kill me and was relieved when he said no. However, if I had known how difficult the road ahead of me was going to be, I don’t think I would have coped at all.
I was still distraught. With a baby so young and a daughter in her Leaving Cert year I was worried that I would not pull through. I tried to hide the fact that I was sick and made the mistake of pretending I was better than I was so that I could get home to the kids.
Shortly after diagnosis, I began to go downhill quite quickly and lost much of my normal day-to-day function.
I couldn’t brush my teeth or my hair, I was unable to put on make-up or get dressed and having a shower was a nightmare. I couldn’t even lift the spoon from Rachel’s bowl to feed her. Then my eyelids began dropping so eventually I couldn’t open my eyes fully. I had difficulty chewing, began slurring my words and got out of breath really easily.
And after several months of waiting and deteriorating rapidly I collapsed at home and was rushed to hospital where I was put on oxygen full-time and had physiotherapy to try to help with the breathing but after a few weeks in hospital I ended up in ICU – it was Christmas Eve 2004.
My thymus gland had enlarged and was invading the vena cava (a vein) in my heart. I was so lucky that this was detected as my heart would have just stopped if the vena cava became completely blocked.
I was put on a CPAP machine, which breathes for you, and was told that my only option was to have open chest surgery to remove the thymus gland.
At this stage I was so weak that the surgeon said I wouldn’t make it through the operation. I was devastated, but thankfully, Dr David Luke from St Vincent’s said I had no hope of survival unless they gave the operation a go.
So surgery took place on February 12th, 2005, and thankfully the five-hour operation was a success. But I was very weak and spent a month on a life-support machine.
I was fed intravenously, had heart monitors attached, a catheter fitted, aerial lines to my arm to check my blood gas and tubes going down my throat from the life-support machine. My body was black and blue from the constant checking of blood sugar and injections to prevent the blood from clotting.
Eventually, I was able to sit down with assistance, but I had so many physical, emotional and mental problems. I couldn’t believe I had gone from a young, energetic new mum to someone who couldn’t do anything for herself. The only part of me still working normally was my brain.
I felt as if I had left my dignity at the door and I promised myself I would pick it up on the way out.
By this time I hadn’t seen my youngest daughter Rachel for six weeks and my eldest daughter Tracey was in the middle of her mocks for her Leaving Cert. She was wonderful and always put on a brave face every time she saw me.
My family were brilliant, they came from Mayo and all lied about how great I was looking. My bed was near the nurses’ station so I could hear when they rang and were told how I was or wasn’t progressing.
Times like that were so hard to deal with because it’s impossible to cry with a mask on because it steams up, your nose starts running and you can’t wipe away the tears. So I learnt quickly not to cry. But it was so hard not seeing the girls. Thinking of them made me determined that I would get through this illness and get back home to them.
After I was discharged, I spent almost three years in and out of hospital fighting infections and recurring MG symptoms. But thankfully I have come out the other side of this horrible illness. My medication has decreased dramatically and I have returned to work part-time (as an administrator in Crumlin College). I have learned to listen to my body and know when the signs are not right.
I have two beautiful girls and a wonderful family who have always supported me. I have been very lucky to get through this and hope my story will inspire anyone who is going through what I did to believe in themselves and know that they can get through it and MG will not rule their lives.
I got through it and am looking forward to a brighter future.
In conversation with
ARLENE HARRIS
Doing four marathons to raise money for MG
Ronnie Whelan, patron of the Myasthenia Gravis Association of Ireland, will walk four marathons in four days from Belfast to Dublin between April 22nd and 25th to help raise funds for the MGA.
He will be joined by his wife Elaine, TV and radio presenter Brian Ormonde and other supporters of the charity.
