Ezra was diagnosed with Long QT 1 very early through genetic testing with the mutation passed down through the paternal side. Fortunately, this has meant that Ezra has been under the protection of beta blockers all his life. While Ezra hasn’t had any confirmed cardiac events, he has had 2 syncope episodes while unwell with … Continue reading Ezra’s Patient Story
Family Fortunes: The Pinches Family
Rebecca: A Guardian Angel While this is the patient story of Claire and Jamie, it is their guardian angel, Rebecca, who is the main character. Rebecca sadly passed away aged 14 following a cardiac arrest one morning before school. It was the tragic passing of Claire’s niece Rebecca which triggered the investigations and testing for … Continue reading Family Fortunes: The Pinches Family
Finlay – A Patient Story
At 27 weeks pregnant, a sonographer suspected Finlay had Long QT Syndrome… ...Unfortunately, this was dismissed by doctors as it was 'too rare" to be a possibility.
Follow your head or your heart (or go with your gut)
You always hear the dilemma - ‘should I follow my head or my heart?’ I think this is the main reason I broke down when I was told Isla was to be listed for a heart transplant. The idea that the heart is your soul is pretty well ingrained in society. ‘They’ve got a good … Continue reading Follow your head or your heart (or go with your gut)
Mistakes were made: Part 1
February: Retrospective I hate February. Every year for the last 3 years it has filled me with dread. The memories of it are traumatic and something I can’t get past. This is my attempt to. To get some stuff off my chest because it’s something I don’t think I’ve ever come to terms with and … Continue reading Mistakes were made: Part 1
It wasn’t The Grinch that stole Christmas
It’s that time of year where I often joke about being a Grinch and hating Christmas. There’s actually three sides to my dislike of Christmas so I’ll start with the bit that most of you haven’t heard before. One year when Isla was really poorly before Christmas I did promise that if Isla made it … Continue reading It wasn’t The Grinch that stole Christmas
No more psychologist = more blogging!
On Monday, after a year, I finished my psychology sessions. It was bittersweet because I did find them really useful and I found her really easy to talk to. I find talking and opening up difficult. It’s not nice to admit your lowest feelings and darkest thoughts. I know everyone always tells you that you … Continue reading No more psychologist = more blogging!
Blame it on the weatherman
Not written for a while but I had an interesting discussion with my psychologist today. It was about luck/chance of bad things happening and where you place the blame and anger. There is around an estimated 0.05% chance of having a genetic mutation of Long QT. That’s 1 in 2000. Now I don’t know 2000 … Continue reading Blame it on the weatherman
The Eriksen Effect
The world watched in horror on Saturday 12th June as Christian Eriksen collapsed on the pitch in the 43rd minute of Denmark’s game with Finland. Eriksen suffered a sudden cardiac arrest. He received immediate medical attention including CPR and 1 shock from a defibrillator. It was harrowing to watch. I cried. I don’t know the … Continue reading The Eriksen Effect
Greenland
I’ve recently watched Greenland. I would recommend it. One thing really hit me though. The little boy talks about the flashes you see before you die. 'Your life flashes in front of your eyes when you die. I think it would be better if it did that while you lived. That way, you could see … Continue reading Greenland
The Long Cutie 