A reminder about me, HHT, Afib and what I know about it - and a depressing list!

 

A reminder about me and what I know about HHT and Afib

So, what do I know? Well, firstly, I have them both!  HHT is a genetic bleeding disorder, characterised by malformations of the blood vessels which bleed – these can be in the nose (90% of patients) plus also could affect the lungs, brain, gut, mouth, liver, etc etc.  It can be a contributor to Afib as the mis-plumbing in the liver can lead to increased pressure in the heart and cause problems.  Nobody really knows and it is estimated that only 10% of people who have HHT are diagnosed.  I have seen many ENT specialists over the years and they are all pretty uninformed about it – I was lucky enough to know it was in my family via grandad, aunt and mum.  My nosebleeds have been treated at a specialist centre in London with a laser ablation.  I’ve had this done four times plus one skin-graft where they took skin from the thigh and patched the nose with it in the same manner as a puncture repair kit mends a puncture on a bicycle!

Atrial Fibrillation is an arrhythmia of the heart – the top chamber/s start to beat erratically.  In some people it happens without them even knowing (in which case they run the risk of a stroke); in others, like me, my whole body is being visibly shaken, breathing becomes difficult and I feel weak and faint.  My heart rate has topped out at 195 which is really unpleasant.  I have always gone to A&E for those reasons and mainly had to be electrically cardioverted (electrically shocked to stun the heart, which stops beating and starts again, hopefully back in normal rhythm) which has (touch wood) always worked for me.  This is known as a DCCV.  I’ve had eleven of these, plus I have self-converted twice and chemically converted once.

 

Here's the full list!

Jun 2014             HHT nosebleeds         KTP laser treatment #1

Aug 2015            AFib #1                     DCCV #1 after two days in hospital

Dec 2016             HHT nosebleeds         KTP laser #2

Jul 2019               HHT nosebleeds         KTP laser #3

Aug 2019            AFib #2            DCCV #2 after 5.5 weeks mainly in hospital

 

March 2020       HHT nosebleeds               Septodermoplasy (skin graft)

March 2020       Afib #3                           DCCV #3 after 5 weeks

MAY 2020           FIRST ABLATION            CRYO-ABLATION OF PULMONARY VEINS

 

March 2021       Afib #4                            DCCV #4 same day

April 2021           Afib # 5                         DCCV #5 same day

April 2021           Afib #6                          chemical cardioversion with IV flecainide

APRIL 2021         SECOND ABLATION         RADIO-FREQUENCY ABLATION OF LEFT ATRIUM

May 2021           suspected TIA            kaleidoscope migraine!! Due to ABLATION

Sept 2021           Afib #7                          DCCV #6 same day

Sept 2021       ear infection - hospitalised for IV antibiotics after infected piercing!!!!

Oct 2021             Afib #8                           DCCV #7 same day

Dec 2021             Afib #9                           SELF-CONVERTED

 

Jan 2022              Afib #10                        DCCV #8 same day

JAN 2022             THIRD ABLATION            RF OF LEFT ATRIUM

Apr 2022             Afib #11                         DCCV #9 same day

Jun 2022             Afib #12                         SELF-CONVERTED

Jul 2022               Afib #13                        DCCV #10 same day

Nov 2022            HHT nosebleeds              KTP laser #4

Dec 2022             Afib #14                        DCCV #11 same day

 

June 2024           Afib #15                        SELF-CONVERTED

Sept 2024           HHT nosebleeds              KTP laser #5

OCT 2024            FOURTH ABLATION         PULSED FIELD AND RF OF LEFT AND RIGHT ATRIA

 

Also had skin cancers removed in 2005 and 2018!!

 

In 2018, I was suffering with very fast HR and fainting (ambulance out twice!) – this was put down to ‘panic attacks’ but obviously was the precursor to more Afib.  From Feb 2023 to Sept 2024, I was taking Amiodarone (drug) and therefore had only one visit to hospital with my heart.  Great drug for the heart rhythm but has possible horrendous side-effects.

 

To sum up, I’m costing the NHS a flipping fortune!

 

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