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The Long Cutie

The Long Cutie

The Long Cutie Legacy

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Author: thelongcutie

I'm 'retired' as a teacher in 2016 to become a full time carer for my daughter Isla. Isla sadly passed away October 2022 so this site is now dedicated to telling the story of other Long QT heroes.

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.

thelongcutie Uncategorized Leave a comment May 26, 2023May 26, 2023 2 Minutes

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) →

thelongcutie Uncategorized 1 Comment Aug 14, 2022 2 Minutes

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 →

thelongcutie Uncategorized 1 Comment Feb 12, 2022Feb 12, 2022 3 Minutes

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 →

thelongcutie Uncategorized Leave a comment Nov 7, 2021Nov 7, 2021 4 Minutes

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! →

thelongcutie Uncategorized 1 Comment Oct 14, 2021Oct 14, 2021 2 Minutes

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 →

thelongcutie Uncategorized Leave a comment Aug 26, 2021Aug 26, 2021 6 Minutes

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 →

thelongcutie Uncategorized Leave a comment Jun 15, 2021 3 Minutes

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 →

thelongcutie Uncategorized Leave a comment Feb 24, 2021 3 Minutes

2020: Review of the year

In history books 2020 will always be the year of ‘The Pandemic’. A year so many lost their lives to this horrific virus. A year we applauded our NHS front line workers every night for a few weeks and then apparently forgot them just as quickly. Condolences to anyone who lost loved ones this year. … Continue reading 2020: Review of the year →

thelongcutie Uncategorized Leave a comment Dec 31, 2020Dec 31, 2020 6 Minutes

Empathy and understanding

When I was relatively new to the teaching profession I remember someone saying ‘you can’t be a good teacher unless you’re a parent’. While obviously this isn’t true because you can be an amazing teacher still of course; in some ways non-parent teachers technically have a distinct advantage as they should be full of the … Continue reading Empathy and understanding →

thelongcutie Uncategorized 1 Comment Oct 7, 2020Oct 7, 2020 7 Minutes

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The Long Cutie on Facebook

The Long Cutie on Facebook
Walk The Big One complete! Brilliant experience! Honestly the scariest thing was focusing on not dropping my phone… it was a little windy at the top but the views of Blackpool were incredible! Could see right across to Southport all the way up to the Lake District. Proud of our @we_are_team1c crew ☺️ This is the ecg of 2 year old with #longqt type 1 being treated with salbutamol due to bronchiolitis (top is before, bottom is during the nebuliser). Doctors were unconcerned about prolonging his QT interval as they had done it once and nothing bad happened so they wanted to remove cardiac monitoring - this is not ok! When it is risk vs benefit and giving #qtprolongingdrugs you have to have a risk strategy and minimise that risk. As you can see it is a quicker heart rate (due to the distress of the nebuliser) but the QT is dangerously long. One worrying thing with this case is there was no plan other than the crash cart if he went into cardiac arrest and no one was in fact monitoring the ecg. There were no 12 leads done or printed at any stage. A student asked a nurse what #longqtsyndrome is and the answer was ‘a fast heart rate’. When doctor was questioned about the plan they claimed cardiology told them salbutamol was fine to give and there was no point a nurse monitoring the ecg because they can’t read them. A qualified nurse can read sinus rhythm and spot an ectopic beat or VT. When it comes to arrhythmias, local hospitals must do better! Communication from heart centres needs to improve. The Long Cutie presents… Finlay! Finlay has Long QT Type 3 like Isla and as Isla always did, he smiles even on the toughest of days. I hate that I can only use the same pictures each reel. I have 10s of 1000s of Isla but I wish there were more. Please take pictures of your loved ones and make memories, you never know when you’ll need them. Today was a @we_are_team1c proud day ❤️ We presented a cheque to @wshospscharity for their playground appeal. For children like Isla, who had regular stays in our local hospital due to common illnesses causing cardiac complications, having access to somewhere safe and sheltered to play as an inpatient would have been a dream. The play area they have designed at Whiston looks amazing and I can’t wait to see it completed. Such an honour to visit today and to be able to support such an important, yet often overlooked, part of hospital life for children. Wonky Walk 2023 #forisla It’s been an emotional day but we have smashed the target and another part of Isla’s legacy is funded. I’m so proud that Isla’s name will be spoken about by children across the world and she will help so many families because of @we_are_team1c and all your support. Really humbled. Tomorrow (Sunday 7th May) I am running a 10k for Isla followed by the 1k walk which this year is in Isla’s memory. I fully intended on training properly for this as its 10k but I have hardly done anything. Two Superheroes, two quotes. The second one especially sums up what I’m doing and what I hope to achieve. Sometimes hope is hard to see and sometimes you just need to change your perspective a little. No matter what, there’s always hope.

https://www.instagram.com/thelongcutielegacy/

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Walk The Big One complete! Brilliant experience! Honestly the scariest thing was focusing on not dropping my phone… it was a little windy at the top but the views of Blackpool were incredible! Could see right across to Southport all the way up to the Lake District. Proud of our @we_are_team1c crew ☺️
This is the ecg of 2 year old with #longqt type 1 being treated with salbutamol due to bronchiolitis (top is before, bottom is during the nebuliser). Doctors were unconcerned about prolonging his QT interval as they had done it once and nothing bad happened so they wanted to remove cardiac monitoring - this is not ok! When it is risk vs benefit and giving #qtprolongingdrugs you have to have a risk strategy and minimise that risk. As you can see it is a quicker heart rate (due to the distress of the nebuliser) but the QT is dangerously long. One worrying thing with this case is there was no plan other than the crash cart if he went into cardiac arrest and no one was in fact monitoring the ecg. There were no 12 leads done or printed at any stage. A student asked a nurse what #longqtsyndrome is and the answer was ‘a fast heart rate’. When doctor was questioned about the plan they claimed cardiology told them salbutamol was fine to give and there was no point a nurse monitoring the ecg because they can’t read them. A qualified nurse can read sinus rhythm and spot an ectopic beat or VT. When it comes to arrhythmias, local hospitals must do better! Communication from heart centres needs to improve.
The Long Cutie presents… Finlay!
Finlay has Long QT Type 3 like Isla and as Isla always did, he smiles even on the toughest of days.
I hate that I can only use the same pictures each reel. I have 10s of 1000s of Isla but I wish there were more. Please take pictures of your loved ones and make memories, you never know when you’ll need them.
Today was a @we_are_team1c proud day ❤️ We presented a cheque to @wshospscharity for their playground appeal. For children like Isla, who had regular stays in our local hospital due to common illnesses causing cardiac complications, having access to somewhere safe and sheltered to play as an inpatient would have been a dream. The play area they have designed at Whiston looks amazing and I can’t wait to see it completed. Such an honour to visit today and to be able to support such an important, yet often overlooked, part of hospital life for children.
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