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Thank you to all of you who are helping raise funds and awareness of Cardiac Risk in the Young (CRY) and myheart in these unprecedented times. Please find in this newsletter information on:
  • CRY Heart of London Bridges Walk 2021-Registration Open
  • Blog by myheart member, Jamie Poole
  • Update to the CredibleMeds List
  • Offer from MedicAlert
  • Private myheart Facebook group

CRY Heart of London Bridges Walk 2021 registrations now open

We are delighted to announce that registration for CRY Heart of London Bridges Walk 2021 is now open! This year is a very special year for our flagship event as it marks the 15th anniversary of the walk.

This is an incredible milestone and we would love for you to join us on Sunday, 27th June from wherever you are in the UK. Read more here

Blog by Jamie Poole

For the first time in 12 years, I experienced my first incident of an inappropriate shock. Not just one, but five, one after the other.

Bang.
Bang.
Bang.
Bang.
Bang.

To say it was painful would be a gross understatement. It was a combination of the most painful experience of my life, mixed with the most terrifying. Not only was it the first time I had inappropriate shocks, it was the first time I had multiple shocks in a row.

And the thing is, I didn’t know they were inappropriate at the time (nor am I convinced they were, but I’ll get to that). In my mind, I was dying. As far as I knew, I was going into cardiac arrest again and my ICD was doing its best effort to keep my heart beating. The fact that it shocked me multiple times not only added to the pain I was experiencing — but with each shock it exponentially made it more terrifying. Why wasn’t it working? Why didn’t my heart return to normal after the first shock? Why not after the second? The third? The fourth?

As each shock jolted my shoulder forward, my thoughts quickly entertained the idea that something was even more wrong than “normal”. That this time may be the last time, for good.

So why is it not a relief that I wasn’t going into cardiac arrest? I wasn’t dying, it was an “accident”, a unfortunate possible side effect of having an ICD, just a bug in the code that they can’t fix. Why doesn’t that make it feel any better?

Well for one, I’m still not entirely convinced it was inappropriate.

See, I’ve had 9 appropriate cardiac arrests now. I like to consider myself somewhat a “pro” at “dying”. I know the feeling my body goes through, I know the timeframes before my ICD will attempt to treat an arrhythmia, and I know that calming myself down does not prevent me from going into cardiac arrest. The experiences from those 9 cardiac arrests have literally dictated how I live my life, I have avoided that feeling for 4 years by listening to my body (a little too much sometimes). I know what my body “sounds” like before an arrhythmia, I know my heart’s limits, and I stop myself from reaching that limit to avoid potential death. Simple.

So with that decade of experience in mind — I was frustrated when the Cardiology team paid so little credit to the fact that I felt these exact feelings the minutes before I was shocked “inappropriately”. I’m not a “noob” at this, this is almost a regular Wednesday at this point, and I knew that my heart rate was accelerating and I wasn’t in the driver seat anymore. While it may look like a normal ST rhythm on an ECG, I somehow knew a shock was coming. After my last cardiac arrest, the nurse responsible for monitoring the ECG summed it up perfectly when she said to another Doctor, “It’s weird, he knew it was coming before the ECG picked anything up”. If it was inappropriate, how did I know it was coming?

While the fact is the read-out showed a steady incline that appeared to be ST, I had stopped all activity before it shocked me. I was literally waiting for it, standing in the doorway to my room. While the Cardiology team explain the inappropriateness away as “during mild-exercise”, I wasn’t. I wasn’t half-way through making my bed and “Bang it shocked me”. No, I felt my heart rate accelerate, I stopped, and stood still for a couple of minutes, as I always do. Again, while it may look like ST on paper — when it did not decelerate when I stopped, warning bells rang in my head.

But what do I know. I don’t know the ins and outs of Cardiology and I don’t know exactly how much information my ICD gives Doctors post-events. Any reasonable person would have to trust the judgement of Cardiologists and Electro-Physiologists who looked at my case that night. They are the experts at this, and I am obviously not the first patient they’ve had with inappropriate shocks.

Which leads to the first of two reasons why it’s scarier not to die. Read the full story here

Update from CredibleMeds


We have received the following information from CredibleMeds:

March 31, 2021 
Re: Revision to the QT drugs list 

We are writing to inform you that two newly marketed drugs in the US, Ponesimod for treatment of multiple sclerosis and Voclosporin for treatment of lupus nephritis, have been added to the Possible Risk of TdP category.

Also, if you haven’t already, we hope you will try AZCERT’s web-based decision support program, MedSafety Scan®.  It is available at MedSafetyScan.org to help healthcare providers quickly assess a patient’s risk of QT prolongation and detect potentially dangerous drug-drug interactions.

The features of MedSafety Scan are described in detail in a recent article published in Trends in Cardiovascular Medicine titled Assisted prescribing: Clinical decision support with MedSafety Scan

May 4, 2021 Re: Revision to the QTdrugs List

We are writing to inform you that three new drugs have been added and one removed from the Possible Risk of TdP category. Two drugs used for androgen deprivation therapy (Bicalutamide and Relugolix) and an antibiotic (Linezolid) have been added to the Possible Risk catagory.  The drug combination, Moexipril and Hydrocholorthiazide was removed from the Possible Risk of TdP category due to labelling changes and a lack of supporting evidence. Also, we want to remind all registrants that the QTdrugs list is a copyrighted technology and, as stated in the Terms of Use, any commercial use requires a license.  For registrants to gain commercial access to the QTdrugs Technology, Single and Multiple Users Licences can be ordered online here.  For companies wishing to incorporate or embed QTdrugs Technology in their commercial products, a license can be purchased here.  We are available to answer you questions or discuss other potential uses for QTdrugs at info@azcert.org. Thank you for your interest and continued support of CredibleMeds. 

Scientific Review Committee Raymond L. Woosley, MD, PhD
Klaus Romero, MD, MS
C.Will Heise, MD
Tyler Gallo, PharmD
Jared Tate, PharmD
David Woosley, MPH

Members with cardiac conditions may like to consider registering with CredibleMeds to be kept up to date with any changes to the QT drugs to avoid list https://crediblemeds.org/everyone/

Offer from MedicAlert
 

We have been sent the following message from MedicAlert and they have asked us to share this with myheart supporters:
 
I just wanted to get in touch to highlight that our Early Start Programme currently has some available funding. This scheme provides free MedicAlert membership (valued at £32 per year) until a child's 10th birthday, along with a medical ID, fully funded by Lions Club International. 
 

 
We know that times have been tough for many families over the last year and, for those with children living with medical conditions, peace of mind is more important than ever. Places are, of course, limited to funding available and so applications are considered on a first-come, first-served basis. We know that this project can fill up quickly when highlighted publicly, due to its popularity.
 
For more information, please contact www.medicalert.org.uk/Early-start/

Private myheart Facebook group
 

myheart has a Facebook group where members (aged 18 and over) can connect and share experiences with other people who have been diagnosed with a cardiac condition often ‘out of the blue’.

So many people who contact CRY/myheart want to talk to others who are in similar circumstances to themselves. The group is a private community for members of the myheart network to share their feelings and experiences with others who have suffered a cardiac arrest, inherited a cardiac condition, have a congenital condition or found out that they have a cardiac condition after a sudden cardiac death in the family and be part of a network of support for one another. A place where we hope you will feel safe in the knowledge that you are not alone in your experience.

The group is private and can only be joined by invitation from myheart. The discussions within the group can only be seen by group members. Whilst myheart has access to the group as an administrator, the group is not actively moderated by myheart. The rules for the group can be found here, and are also available in the Facebook group page.

To join the myheart network and find out more about the private area of the Facebook group please visit www.myheart.org.uk/join-myheart.

If you are already a member of the myheart network and would like to join the myheart Facebook group, please email myheart@c-r-y.org.uk

You can also send in a query to us at myheart@c-r-y.org.uk and we will post it on your behalf if you choose to remain anonymous.

Best wishes
myheart team
Copyright © 2018 Cardiac Risk in the Young, All rights reserved.

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Cardiac Risk in the Young
Unit 1140B The Axis Centre
Cleeve Road
Leatherhead, Surrey KT22 7RD
United Kingdom
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Cardiac Risk in the Young · Unit 1140B The Axis Centre · Cleeve Road · Leatherhead, Surrey KT22 7RD · United Kingdom