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Aah bollocks.

Posted: Fri Dec 14, 2018 12:27 pm
by Pickers
I got told this week that basically I couldn't ever ride a bike properly again. Ever.

I've been diagnosed with a hereditary heart condition - Hypertrophic Cardiomyopathy - that causes the heart muscle walls to thicken and harden, a by product of this is that the thicker walls restrict blood flow in the heart between the various chambers. The upshot of this is that there's a lot less blood pumping round than there should be, and the blood that is there is prone to clinging to the (not so flexible) walls and clotting. This is bad. This is what caused a minor stroke in July whilst in the pub at Abergynolwyn during a BaM weekend. The fine figure of me pictured in the "ferry" on the BBB calendar is the morning after the stroke happened. I still finished my pint.

It is hereditary, something to do with genes. My kids will need to be screened as well to see if they're likely to carry the condition. It wouldn't have mattered how I'd lived, if I'd been thin or fat, it would have nobbled me eventually. As I sit here with a resting HR of 45 this morning, cholesterol at 4.3 and no sign at all of stuff such as diabetes I should be in pretty good condition. But I'm really not. And there's nothing I could've done about it. There is no cure. It will not get better.

I now have a whole pharmacy in a cupboard in the kitchen at home, six tablets a day so far but that seems to increase every time I see a doctor now.

There's two things I'd like to say.

First up, as Stu said on a thread recently, missed opportunities. FFS go and do the stuff you want to do, while you can

Second up, I'm still relatively sane - a hefty portion of this is down to a few good people that I've met here - Big Dummy Steve, Reg and Dr Nick especially warrant special mention for keeping me riding and bivvying. Thanks chaps, you've helped more than you can imagine.

On the other hand, I still feel extremely lucky. I'm still alive and functioning pretty normally - a night on a stroke ward in hospital showed very plainly what the alternative could be.

Re: Aah bollocks.

Posted: Fri Dec 14, 2018 12:37 pm
by middleagedmadness
that's w@nk rich ,lets hope the meds can help ,and try and keep a positive outlook , cycling may have been your main hobby for years but its not the be all and end all of life you've got some great memories and youll find something that can sort of take its place and get you outside to make for memories
all the best mate

Re: Aah bollocks.

Posted: Fri Dec 14, 2018 12:43 pm
by Bearbonesnorm
E-bike Rich? ... and yes, you never know what's waiting for you round the corner. Think about all the big changes that have happened in your life, I'd guess that most were the outcome of a single second. A chance meeting, right place wrong time, etc. We all assume we're going to live forever but no one gets out alive but if we're lucky, we do get the occasional second chance.

Re: Aah bollocks.

Posted: Fri Dec 14, 2018 12:49 pm
by smartay
Stay positive. Time in s stroke ward makes you realise how quickly your life can change

Re: Aah bollocks.

Posted: Fri Dec 14, 2018 2:08 pm
by BigdummySteve
Arrr bollocks :cry: Think of the many people who will get news like this having never taken the opportunity’s that life offers.

A draw a lot of motivation from a friend of mine who sadly died of cancer aged 20, he made me promise not to waste my life, I often think ‘rich (Kemp) would have liked this’

Although you may no longer be able to do the bikepacking, take some solace in the memories which you have accumulated and also the best excuse to bail out of this weekends weather :wink:

Re: Aah bollocks.

Posted: Fri Dec 14, 2018 2:20 pm
by Mbnut
Ah Pickers that is harsh news.

Now my understanding is somewhat rudimentary but normally it is considered ok to exercise with Hypertrophic Cardiomyopathy, within reason, the advice not to being more based on legal concerns rather than medical.

So an E bike and a relaxed approach could see you knock over a few more BaMs yet.

Apologies if i'm speaking out of turn, you know your case and I don't.

Whatever happens you'll make it to the pub on occasion I suspect.

All the best and thanks, you are so right.... We do need to start going and doing the stuff we want to do and this may just be the shove I need.

Re: Aah bollocks.

Posted: Fri Dec 14, 2018 2:34 pm
by Pickers
An E bike is very much part of the future... I should've had one a couple of weeks ago but the wrong box was sent out. I then should've had one yesterday - another chuffin huge box in the garage, the test ride last night showed it to work about as well as I do at the moment...brand new and broken straight out of the box. That's going back as well. Refund please.

HCM is a bit of an odd one, the advice I was given from September through to November was carry on as before - everything will be fine if you keep taking the pills (!). Tuesday afternoon with the consultant cardiologist is what changed that - the obstructions between the chambers could block at "high revs". That would indeed be bad. For the moment I'm inclined to follow the safety first advice - there's an element of risk here after all. I have a ruck of tests to look forward to so we'll see what becomes.

Re: Aah bollocks.

Posted: Fri Dec 14, 2018 2:41 pm
by thenorthwind
That's thoroughly sub standard news, and something I'm sure everyone on here must dread. But I can tell just from that one post that your attitude to it is spot on, and you'll make the best of it, hopefully with the continued help of the fine folk on here.

Re. doing stuff you want to do, while you can... absolutely. Always worth reminding each other of that.

All the best.

Re: Aah bollocks.

Posted: Fri Dec 14, 2018 2:44 pm
by BigdummySteve
Pickers wrote: - everything will be fine if you keep taking the pills (!).
That’s what they said to reg :-SS

Re: Aah bollocks.

Posted: Fri Dec 14, 2018 3:33 pm
by RIP
Good bit of blackish humour there Steve - we all know each other too well by now :smile:.

I'd like to record here that I've had some of the most fun in my life while out wandering round with our Rich - an all round top gent. As Nige says, don't want to speak out of turn, but we ain't going to let the story stop here hopefully m8. Obviously it'll be your calls, but in the meantime there'll be the occasional cajoling and nagging from this quarter certainly. Now about that E-bike.... :-bd.

All the very best Rich, speak soon.

Re: Aah bollocks.

Posted: Fri Dec 14, 2018 3:43 pm
by Richard G
Pickers wrote:Tuesday afternoon with the consultant cardiologist is what changed that - the obstructions between the chambers could block at "high revs". That would indeed be bad. For the moment I'm inclined to follow the safety first advice - there's an element of risk here after all. I have a ruck of tests to look forward to so we'll see what becomes.
Sounds to me like a heart rate strap and a max heart rate alarm on the Garmin / watch / whatever may very well be the order of the day.

Keep the HR low, use all of that e-bike goodness on the hills. Jobs a good'un.

Just avoid Stu's routes...

Re: Aah bollocks.

Posted: Fri Dec 14, 2018 4:32 pm
by ton
Rich, so sorry for your predicament mate. life is a bastard sometimes.

but, face it head on mate. new big ebike and no surrender.

I had 5 years of heart trouble, resulted in open heart surgery.
now at the other side of it hopefully and riding more that ever.
when my time comes, I hope it is whilst riding up a big feck off hill after enjoying a nice lunch time pint.

keep you head up mate, and if you ever fancy another pootle up my way, let me know mate.

Re: Aah bollocks.

Posted: Fri Dec 14, 2018 6:17 pm
by Moder-dye
That's really crap and currently being in a similar situation I know how you feel. :cry:

I'm now on beta blockers, statins and aspirin awaiting an angiogram with the cardiologist obviously expecting I'll be getting a stent when that's done early in the New Year. In the meantime I'm also on a bike and exercise ban having been told to keep my hr below 90bpm. I don't drink, don't smoke, cholesterol OK, do loads of exercise and the suggestion is I may have a hereditary condition based on my Dads early death. Before the medication I felt fine, now I feel decidedly crap and exhausted the time. The one hope I have is that after the investigation & op I can hopefully start building back up.

I hope there may be some option for you to get back to doing the things you love.

Re: Aah bollocks.

Posted: Fri Dec 14, 2018 7:46 pm
by belugabob
My brain is trying to work out some kind of e-bike/tag-along hybrid, to allow others to take the strain for Rich. (And I've not been drinking)

Chin up, Rich - does sound like you've got a good attitude to what is basically crap news.

Good advice on the Carpe Diem front, too.

Re: Aah bollocks.

Posted: Fri Dec 14, 2018 9:19 pm
by barney
That's really sh1t news.

I know not exactly Bearbones stuff but I did a few walking overnighters this year and enjoyed them just as much as a bike bivy.

Something to consider? :sad:

Re: Aah bollocks.

Posted: Fri Dec 14, 2018 9:40 pm
by macinblack
Ouch - That's not good.

Adapt and overcome - We can't be deprived of that cheeky grin.

Re: Aah bollocks.

Posted: Fri Dec 14, 2018 11:29 pm
by BigdummySteve
Just a thought, are you allowed to meet at a pub, get pissed, cycle a few miles then sleep in the woods?

If only you knew such slackers...... ;)

Re: Aah bollocks.

Posted: Sat Dec 15, 2018 9:21 am
by Pickers
Just a thought, are you allowed to meet at a pub, get pissed, cycle a few miles then sleep in the woods?
That's February sorted Steve, same plan as last year except I probably won't ride out beforehand!

M-d - I'm sorry to hear of your issues, I hope those instructions are temporary until they know more about what's going on. They have to err on the side of caution at this stage, I was in a similar state for the first 6 weeks or so until a proper diagnosis was done - as RG says, it's a good excuse for a new Garmin and other gubbins. I use Livetrack as well on the Garmin as this gives my wife peace of mind when I'm out riding solo. My mum died following a stroke, my dad is still going but he could still do 200+ mile 12hr TTs into his mid 70s..... fit as anything. I blame my mums' side of the family!

Tony - I'd love to take you up on that at some point, thank you. I gotta say you were pretty much (in the nicest way...) the first chap I thought about in July after the stroke. Life is indeed a bastard sometimes but we keep on getting back up. You had a lot more thrown at you to deal with than I've had, but never ever admitted defeat.

There's been some great comments here, many thanks to everyone for those. Let's keep on keeping on.

Re: Aah bollocks.

Posted: Sat Dec 15, 2018 10:26 am
by whitestone
Ah, that's crap! Only met you the once - on the winter event at the cafe in Bwlch y Sarnau - so nowhere near the knowledge of you that Reg and Steve have.

Something like this is exactly what an e-bike's for, I know a guy who has one for similar reasons but probably not the same condition, lets him get out and ride with the group. Definitely not a reason to simply say "stuff it" and spend your days watching Jerry Springer or Jeremy Kyle, though those would probably send your HR through the roof anyway - maybe Antiques Roadtrip :lol: Having a positive mental attitude helps massively for things like this.

My cousin's husband lost his arm in a farming accident. Almost the first thing he was told in rehab/physio was: forget what you could do, focus on what you can do. For him it was the small things that presented most difficulty - he couldn't tie shoe laces any more so had to use slip on shoes or write (he lost his dominant arm) but was happy to go on a chainsaw operators refresher course! He'd ride his bike to the shops to get the paper and milk. PMA? He got a job at an aquarium as a guide so got a lobster claw as attachment for his prosthetic arm :-bd "The job gets to you was his line" :lol:

Good luck!

Re: Aah bollocks.

Posted: Thu Aug 22, 2019 1:05 pm
by Pickers
Well, I'm walking around this morning now like a dog with two d1cks!!

Been to see the Doc this morning, and after 9 months of visits to doctors and consultant, CT and MRI scans, treadmill stress tests, HR holter tests, blood tests, ECGs, echo cardiograms and more, the cap on my heart rate has been removed.

I still have Apical HCM but things have calmed down with the meds and the risk is now considered to have passed, or at least is under control. My heart volume is still restricted, there's still an obstruction in there but I'm not going to keel over any time soon.

There never was much speed in my bike riding and that won't change at all.

A word about E-bikes though. I loved mine as they gave me a taste of the freedom that cycling brings. But it was only a taste. With the freedom came (for me at least) the knowledge that I needed places to keep the thing running daily. I don't mind whole evenings in the pub but it's not actually what I seek, and relies on the goodwill of others if I'm with a group. Everyone has to sit and wait while the battery charges. A pain.

I've been granted a reprieve. I'm still bloody lucky and folks put up with a lot worse.
I'll continue to ride bikes and enjoy them all, but with the knowledge of what it's like to have that freedom taken away. It's not nice. If you see someone on an ebike please bear in mind that they might not be a lazy sod, they might actually have a genuine need - I know that I'm not the only ebike rider on here.

BD Steve asked me (halfway up the 2nd highest hill in the Black Mountains...) if I'd sell them if I ever got to this point. The answer is yes I would! And I will.

Re: Aah bollocks.

Posted: Thu Aug 22, 2019 1:10 pm
by middleagedmadness
:-bd :-bd :-bd

Re: Aah bollocks.

Posted: Thu Aug 22, 2019 1:16 pm
by composite
I didn't notice the original post date, so reading this thread was a roller coaster of emotions! :lol:

Glad to hear you are on the mend and able to get riding again. :grin:

Re: Aah bollocks.

Posted: Thu Aug 22, 2019 1:38 pm
by ScotRoutes
What a brilliant turnaround. If I'm ever down your way for a night out I'll gladly carry a spare battery :lol:

Re: Aah bollocks.

Posted: Thu Aug 22, 2019 2:29 pm
by ton
brilliant news Rich. hope you keep well now.
if I'd sell them if I ever got to this point. The answer is yes I would! And I will.


as soon as I was well after my heart trouble, I sold the ebike. with a promise that if I needed one again I would buy one without a thought.

hopefully we wont ever need one again mate. :-bd

Re: Aah bollocks.

Posted: Thu Aug 22, 2019 3:38 pm
by GregMay
Good news all round.