Why me? Why HHT? Why Afib? IT'S NOT FAIR!

 

Why? Why? Why?

It’s not fair – why have we got Atrial Fibrillation and/or HHT?

The latter is simple – genetics – it’s a hereditary condition as the name Hereditary haemorrhagic telangiectasia (HHT) suggests.  On the NHS website it describes it as follows “HHT is an inherited genetic disorder that affects the blood vessels. It's also known as Osler-Weber-Rendu syndrome.”

 

Now what about Afib?  Now this is a bit more complicated.  The major risk factors are as follows:

     ·         increasing age

·         high blood pressure

·         obesity

·         heart disease (like heart failure, valve issues, CAD)

·         diabetes

·         excessive alcohol

·         smoking

·         sleep apnoea

·         family history

·         lifestyle factors like strenuous endurance exercise

Now from a personal point of view none of these apply to me – I’m not ancient, I’m not over-weight, my BP is fine, I’ve never smoked and while I boozed a bit all my life it was never excessive.  I’ve got an uncle who had Afib and I’ve done exercise but never anything too mad – as my electrocardiologist explains it's eyeballs out, long endurance sport that would precipitate it, not a bit of jogging,

This is a source of interest (to me, at least) to wonder why I am so sickly.  I mean you see all these massively obese people smoking and drinking and never moving and they are never sick – I have an in-law who is exactly like that.  It drives me mad.

I found it really depressing (and very annoying) until I did a bit of reading up – and came full circle back to this genetic malformation of the blood vessels - the afore mentioned HHT (Hereditary Haemorrhagic Telangiectasia).  These mis-shapen blood vessels cause the blood pressure in various places to be too strong for the vessels and cause bleeds – 90% of HHT people have nosebleeds, but they can be in the brain, lungs, liver, gut etc.  Those with serious HHT will have bleeds lasting hours and need infusions of iron or blood every few weeks.  Luckily mine is mild/medium at the moment.  It does vary week by week!!  I’ve also had four lots of laser ablation treatments plus a skin graft on it to keep the bleeds under control.  It’s called the “Not so rare, rare disease” as only one person in 50,000 has it diagnosed but they reckon TEN times that many actually have it. You can read more about HHT here:

 

https://www.blogger.com/blog/page/edit/5200697355248151291/5198752850662709055

 

BUT, here’s the thing, HHT makes it far more likely that you will suffer from (drumroll!):

 

·         ATRIAL FIBRILLATION and other arrhythmias

·         and HYPOTHRYROIDISM (underactive thyroid)

·         and SPONTANEOUS CORONARY ARTERY DISSECTION (SCADs)!!!

 

Call me weird (and you are probably right) but I find it oddly comforting that I have really ONLY one thing wrong with me (HHT), which I can do nothing about, but which causes these associated symptoms/conditions (Afib, underactive thyroid, SCADs).  I didn’t “do it to yourself” with too much exercise, or too much alcohol, or coffee or bad diet.  In fact, I would have been a whole load worse off if I had over-indulged in the bad stuff and not kept fit.  Or as a friend told me “We were saying it was a good job you’d kept yourself so fit as you’d be dead by now”!!!  This was said with no malice so I took as the compliment I know it was intended to be…

 It's the HHT that is also responsible for my liver malformation and the enlarged coeliac and hepatic artery which the last scan showed – not to mention the nosebleeds.

My skin issues (previously I was allergic to many things) and the skin cancers are due to hereditary factors also.  Basically, I’m very melanin-challenged (I got that expression from the Black Hikers Page on FB – made me spit my tea out with laughter).  Basically, as the fair one in the family with olive skinned parents and sibling, plus another sibling who tanned nicely (though has since had his own problems with skin cancer) my readiness to burn was not always spotted early enough – plus back in the 60/70/80s you just couldn’t buy suntan lotion or if you did it was SPF 6 (and prohibitively expensive).  I remember buying “kindermilch” (i.e. lotion for kids) sunscreen in Austria which was a massive FACTOR EIGHT! 

 Nowadays I always wear SPF 50 – but horses and stable doors spring to mind…  Plus, I also owned a SUN RAY LAMP – enough said!  I often spent too long in front of it and emerged like a red-faced panda with white goggle marks – very naughty. Nowadays I am pale and interesting – or rather very boring, but with a thin layer of fake tan to disguise the dazzling whiteness of my limbs… 😊

Which reminds me that I was hiking in Somerset once and we went into a teashop.  There were a group of old people in there and one of the chaps was an old Cockney geezer much like my granddad – he took one look at the whiteness of my legs and said “Cor Blimey! Your legs ain’t ‘arf white”.  Luckily, I laughed and pointed out that it was the first day of my holiday and it was cold, grey and miserable out anyway!!!

It also reminds me of a terrifying teacher at my school.  He looked like a Fascism thug, but I can remember him reprimanding a white kid over some name he had called one of the Asian kids.  His point was basically that if us so-called white people think we are superior to non-whites, as this incident implied, then why do white people spend a small fortune going on holiday to lie on a beach and turn brown? (with skin cancer as an added bonus!). 

Now that reminds me of something I once heard where a dermatologist was talking about researching skin cancer and saying that Australians had, unwittingly, provided the world’s best ever skin cancer survey, where millions of fair and pale people moved to a hot country and exposed themselves to the sun for decades. This was a study which would have otherwise been impossible – both in scope and in ethical terms… 

And this led to “Slip, Slop, Slap".  This is the iconic Australian sun safety slogan from the Cancer Council, meaning Slip on protective clothing, Slop on broad-spectrum sunscreen, and Slap on a wide-brimmed hat to prevent skin cancer. The campaign, launched in 1980, has been expanded to include Seek shade and Slide on sunglasses, emphasizing comprehensive UV protection.  

I seem to have massively digressed from Afib and HHT, but my appointment at the emergency skin cancer clinic tomorrow is foremost in my mind.  I will now shut up!

But before I go – I’m now NINE weeks post-Minimaze and can now walk 2.75 miles on consecutive days (though currently struck down by a cold – it’s coz I’ve been going out socialising again – germs everywhere!) so making good progress, finally.

 

MERRY CHRISTMAS AND A HAPPY, HEALTHY 2026. Thanks for reading - don't forget to sign up. xxx