Forum menu
got given the worst news possible yesterday.
my consultant told me i have to face up to the fact that i am gonna be stuck in permenant afib.
in the past 17 months i have has 2 failed cardioversions and 2 failed cardiac ablations.
my last ablation, like the 1st worked for about 10 days.
the consultant explained that he would not be able to work on my heart again because there is only so much the heart will take, and also that the area that is now causing the trouble he is unable to reach, because of the size of my aorta.
he explained that there is 1 more thing that might work, the removal of my av nodes, which are kind of like the hearts spark plugs.
i would be totally reliant on a pacemaker then to keep my heart beating.
he said he thought i was too young for this treatment.
also told my i would be on warfarin and beta blockers for the rest of my life.
i am honestly totally devastated at present, and just need to offload this somewhere.
all i have ever done is ride my bike and play rugby since the age of 9.
and now at 45 not being able to do something you love so much, well the thought of it is unbearable.
i have entered a couple of uplift days, with thoughts of something to do bike wise in the future, hopefully this will help me keep my chin up..i do hope so. gonna try and get motivated to get out on my electric bike again, but like a meat lover eating quorn...it aint the same at all.
why is life so rubbish at times? i know a lot of people are worse off, but that dont stop me feel so bad.
anyway, sorry for offloading this like i said.
and to everyone i have ridden with off here over the years, it as been a pleasure and a fantastic experiance.
gutted for you ton
Gutted for ya. 🙁
Gutted for you Tony. Assuming you are still coming up to Innerleithen though?
I was also wondering about the pacemaker thing - if it's seriously going to affect your quality of life, can you not insist they go ahead with it (or is there some downside?)
ton, you are a mate and a legend on stw. really sorry to hear prognosis, its crap to hear amd not sure what comfort I can give. If you want any company even on the leccy bike then just ask.
Sorry to hear that ton. Dont apologise for speaking your mind on here, we're your mates and we'll do whatever we can to lift your spirits, come up with ideas and all the rest.
BOOOOOOO.That sucks the big one fella.
I won't trot out the platitudes......you could turn to cookery.I've heard you've got a mean fist pie.
Sad news Tony, have followed the story so far. Really not sure what to say, other than keep your chin up. Keep doing whatever you can to enjoy life.
Ton, you'll get loads of sympathy, but you need to accept that things are the way they are and then get on with living as well as you can.
Carry on with the diet, do as much in the way of exercise as you can and if you end up having to be permenantly paced, suck it up fella and get on with living.
It's ok to be pissed off, it's ok to be fed up, but as you already say; it could be much worse, so get on with it.
tough break Ton 🙁 you feel bad as you like mate, it's great that you can offload on here.
Sorry to hear that Ton ...but you have to think life is not all about riding bikes and rugby ....yes it's a bummer but you have to take stock and think what CAN I do ...you will find something else to fill your time and wonder why you ever did the things you did before ........
Feel gutted for you ton.
Sometimes though, life is inexplicably cruel. Some people live til their 90's after smoking heavily all their adult life and never doing any exercise, some people (like you) live a healthy active lifestyle and then have chronic heart problems, or get cancer, or whatever... My Dad's best mate dropped dead of a heart attack one morning, aged 54. He was the fittest 54 year old you could meet, he ran every day, spent most weekends doing 40+ mile hiking routes, cycled frequently, played rugby etc. The autopsy discovered he had a hole in his heart, that had been there since birth, it was only because he was so healthy he had lived so long otherwise he'd have probably died in his 20's!
The only advice I can give is don't dwell on past glories, it may be upsetting to think you can't do some of the things you used to do ever again, but find new interests to keep you going... I used to be a very good fast bowler at Cricket, then I broke my hand when I was 19 and have never been able to release a cricket ball properly since (it either goes over the batsmans head, or nearly crushes my toes). I spent a year or so dwelling on it, then took a break from cricket for a few years. I started playing cricket again about 8 years later, then just worked on my batting instead. Within a season or two, I'd actually got pretty good at batting and gone from a tail ender to regularly opening the batting for my local club on a Sunday... It's not the same I know, but you see what I'm trying to say?
My sympathies are with you anyway.
That's really tough big man.
Shity news Ton but you're still here and alive mate and that's the main thing! You can still talk crap on here even if you ride bikes or not mate. Bikes are crap anyways!
Dude, different situation to you I know but I'm diabetic and used to take 4-6 injections per day and would have done for the rest of my life. 3 years ago I switched over to an insulin pump which I'm hooked up to 24/7... I'd rather not have it and sometimes it's a pita but it makes my quality of life so much better. Guess what I'm saying is sometimes bionic devices seem daunting but you learn to live with them and see the upsides to their benefit...like I say different scenario but hope you can relate?...good luck.
Aw Ton, I'm really sorry to hear that 🙁 . Please take care and pimp that electric bike to high heaven. Big hugs! xxx
ton - I am so sorry to hear that, life really can be crap sometimes. 🙁
Have you been given any suggestions of what exercise is OK to do? They don't expect you to become a couch potato surely?
Please don't dwell, you have to keep looking forward and believe that your life will be better, whatever form it takes. Your life needs to take a different turn, on a different path and you mustn't think it will be worse.
Hugs.
xx
Absolutely rubbish that Ton, however.....
it could be much worse, so get on with it.
And
You can still talk crap on here even if you ride bikes or not mate.
After all, that's what most of us do on here anyways.
Keep yer chin up.
Ahhhh bollocks mate, sorry to hear that.
Crappy things happen to good people, sadly.
At least you can still use the leccy bike, possibilities for some decent touring holidays there, with a bit of luck.
You might need a longer lead though.
Have you thought about motorbikes? They can be really expensive, pointless and dangerous, so lots of possibilities there.
Really sorry to hear that. Like others have said, you are going to need to try and get over the loss and not dwell on what you used to be able to do. Easier said than done, I know from experience (though nothing like what you've been diagnosed with). There will be other things in life you don't know about yet that can inspire you - it just won't be the same as biking.
But if you ever fancy doing an uplift day with a fellow hefty sick-boy - let me know.
All the best Ton .
Tony, you've provided me with a lasting memory I'll take to the grave. That Hebden ride a few years ago, you falling off and ripping your shirt and doing the rest of the ride with your nipple on show. A great day...
Thinking of you fella!
people like you ton will always find a way to live a fulfilling life.
look around you fella and you will see endless people with good health that never do anything with it, you are either part of that club or not.
it's shit now mate but it will evolve into something else. good luck mate.
Sorry to hear that...
Sometimes one door closes and another opens, after I smashed my leg up I could still ride motorbikes but the joy had gone... Left me pretty bereft, it was all I knew- all my mates rode, all my time and money had gone into bikes for years. Bad times. But that was what led me to pushbikes- and on a good day I could say I'm glad it did. So I hope you find something like that happens for you.
Crap news, like others have wisely said there is more to life than cycling and who knows what's round the corner. For a start it wont be long until there are good electric mtbs so you can still beat you mates to the top.
My Afib is only paroxysmal at the moment but I know how it effects me during an episode, but it only restricts certain things leaving plenty else one can do.
sorry to hear that Ton - hope you find something great to do instead of biking (or as well as restricted biking)
I hope all this stuff is inspiring and helpful Ton, but it is also inspiring and helpful in general, good work STW.
That really is crap news - sorry to hear it. Best of British if you decide to go for the robocop bits - truly hope it works out for you.
Why can't you carry on riding?
Crap news to have to take in, can be overwhelming. But what Northwind says makes allot of sense. Really important to focus on whats possible than what you can't do. There will be stuff out there, just likely to be hard to see for a wee while. Loads of support on here for you.
Real sorry to hear that Tony. Life, as they say, can be a bitch.
Mate, as the only person on here who can compete/compare themselves to you in the variety and quantity of bikes owned, I send out manly nods across the bar! I'm also a Yorkshireman with Irish & French granparwnts who is currently in a drunken confused state with a woman's clutch bag down me pants (..!?!!?..) following the rugby (don't ask... I have a very dizzy work mate). I hope yer chin comes up soon & if you need to talk to anybody my email is in me profile (I'm actually shit at this type of thing but yer know...)
I love you mildred!
Everyone, thanks for the kind and very inspiring words.
i am gonna take note of what you have all said, and try and not let this thing get on top of me.
thanks.
Feel for you ton - big time, but as others have said, you've got to keep on keeping on. There will be a way - you might not know which way right now, but you'll work it out in time. Just keep your chin up for now and keep looking forwards.
As someone said to me on my diagnosis - you've got a bridge in front of you to cross. Get across that, and there might be another one. Deal with that one when you get to it, and so on. It was one of the best bits of advice I've had in my life.
Ton sorry to hear it's been unsuccessful and had an impact on your life. It's the exertion that your heart can't take and not good for it, I'm sure you know this though. Although a big part in your life rugby and bikes aren't everything, you can still enjoy the social aspect of it all by watching matches and coming along to bike events. Helping out being a pit bunny for an endurance event or offering to be a dogs body can be hard work but good fun.
You have your family and they have you that's the important thing.
If you come along to Uk/Europe 24hr next month at Newcastleton then I'll get you a beer, not too many mind don't want to get into trouble from your Dr.
Sorry to hear that Tony.
I can't say anything that's not been said before really. Chin up, worse things happen at sea and all that. But anyone here can appreciate how guttng it must feel.
You know that book about riding home from Siberia? I have a better one about a guy walking across that area. Walking out of and escaping a much shittier situation than any of us could imagine. It's inspiring. (PM me if you got reading time)
Sometimes bikes are just crap anyway- expensive, faffy, over the top and take your focus off the basic pleasures of feeling free outdoors. Load up a rucksac and go for a stroll? Some of the best times of my life have been on foot. 24hrs out and you come back anew. It's wonderful the kind of thinking space you have and what you see when your're not knackered and staring at the ground 15ft in front of you.
Ton, really sorry to hear this.
I can understand how gutted you must feel, and I know bikes and rugby were a huge part of your life, but sometime we just need to move on, and rearrange our lives.
Northwind's said it well, sometimes one door closes and another opens..
Thankfully you've still got your family, and as Drac says, that's the most important thing.
Not going to be able to add anymore than what has already been written above. Sorry to hear that your health is preventing you from doing the sports you love but you can still participate and give something back to these sports. I hope you find something to bridge the gap.
Gutted for you mate, but echo other comments
Coaching not an option?
Keep yer pecker up, big lad.
Next bridge coming up.
Not the news that you hoped for as others have said... I'm sure there is a way you can keep in touch with the sports you love, get a solid plan "B" and get that sinto gear... The coaching suggestion might open some doors...
As Druidh said, would be good to see you at Inners on the leccy bike...
he explained that there is 1 more thing that might work, the removal of my av nodes, which are kind of like the hearts spark plugs.
i would be totally reliant on a pacemaker then to keep my heart beating.
he said he thought i was too young for this treatment.
Why not investigate this further.
Would it be a bad thing, having a pacemaker fitted- or is it just a risky operation?
Why does your age matter?
sorry for the naive questions..
Rubbish news Ton. 🙁
Your Afib story has been eerily similar to my mum's over the past couple of years, except that she is 14 years older -terrible to happen to someone who actually [i]wants[/i] to give their heart a good workout.
However, reading Northwind's post on the first page, I think you should think about doing the opposite of what he did. Thus begins a new dawn of tinkering with and behaving badly on expensive motorbikes. 😀
Reading this whilst feeling really sorry for myself suffering with a severe bout of manflu..... suddenly I don't feel so bad. Sorry to hear the news Tony, we must get together some time for a natter.
Chin up, big fella.
Gutted for you Ton, but it's not over yet. New techniques come along all the time and something may come up in a couple of years that will help.
KEEP POSITIVE.
We're all here for you and we _will_ help if we can. Remember, it's not over yet.
Hi Tony. I'm really sorry to hear that fella. I've mentioned it on here a couple of time before, but my sister is now living fulltime with a pacemaker after discovering she had a life threatening heart condition in her mid thirties. It was either have a pacemaker fitted or, well....the alternative. Three years later she has learnt that all things considered, it hasn't really impacted on her quality of life at all, and she really misses out on very little. For example, she used to row, but obviously hard upper body stress type sport is a no go, but she can still do swimming. Point is, as others have said, you may find that even though you may not be able to do the things you used to, you may find that there are plenty of other things that are still open to you. I think you'd make a brilliant coach, for example.
I sincerely hope it all works out for you, but chin up, it may yet not be as bad as you might think. Please mail me if you want, and I'll tell you more about it, if you're interested.
Sorry to hear the news Ton, when the dust has settled hopefully you'll be able to find out more info on your options.
Good luck with it all mate.
So, you want the outdoors, some hills, and presumably reasons to pore over kit for hours.
[url= http://singletrackworld.com/forum/topic/sick-as-a-dog-so-show-me-you-bivi-bikepacking-adventure-racing-gear ]http://singletrackworld.com/forum/topic/sick-as-a-dog-so-show-me-you-bivi-bikepacking-adventure-racing-gear[/url]
All that, at a far more civilised pace as well!
There's plenty out there for you ton, biking or otherwise, chin up.
Sorry to hear that, really shit news. Keep on bringing the sweary northerners videos though 🙂
really bad news, gutted for you. I always find your posts and stories interesting and hope you can find some form of compromise to keep your interests up. I had been feeling sorry for myself as off bike from a foot op, and loaded with the cold......puts things into perspective a bit 😳
*tongue firmly in cheek*
Oh shut up you big moaning ****er, you;ve had a more interesting life than 90% of people on here, you played rugby with wally lewis for ****'s sake, you should be proud of what you've done and sit quietly in a corner and pay your taxes till you die like a good lad
*tongue removed from cheek*
shit news. thought about a tandem? You'd need someone of a similar size to you to pilot it, and you might need to think about re-inforcing it in that case...
Ton dont know much about afib but my dads on both the drugs you mention after a stent and bypass op following 4 heart attacks between age 33 and 42
He rides his bike with me - he cant give it beans and gets out of breath on hills but using his gears we can do 15 or 20 miles without knackering him for days.
It has taken time to stabilize his medication though innitially doses he was told tomtake were bringing his hr down dangerously low and all he wanted to do was sleep. Or would just lapse into unconciousness.
Fwiw he is probably fitter now than ever - no longer smokes - works less - less stress - regular exercise and better diet now my mums been educated to stop frying stuff
Dont lose faith !
Hey Ton
All we can ever do is make the most of the moments we have, best to focus all your attention on what mischief you can get upto.
Farewell!
Try and stay positive. Kasae spot on.
a big heartfelt thanks to everyone for the positive vibes... 😀
just showed my Mrs the thread, and it made her cry, all the kindness shown to a stranger.
thanks everyone.
I think you should take up swimming 🙄
[url= http://farm4.staticflickr.com/3417/4632520773_afbd1631a1_z.jp g" target="_blank">
[url= http://www.flickr.com/photos/23772898@N07/4632520773/ ]Grinton 23-5-2010[/url] by [url= http://www.flickr.com/people/23772898@N07/ ]Dee P Jay[/url], on Flickr
I'm confused. What stranger is this that you mention?ton - Member
just showed my Mrs the thread, and it made her cry, all the kindness shown to a stranger.
Obviously he means more strange, rather than unfamiliar.
druidh, she asked me if i had met everyone on the thread, i told her i had met a few, i think she meant kindness from people who i had not met.
and still on for the 31st and looking forward to it too.
Ton,
Being told that you have to change the way you live is never an easy thing. It can be difficult to accept what the specialists say when health is the issue; the fear, the worry, the unknown are all elements that influence your mental state. There is absolutely no dishonour in accepting that you won't be able to do the things you love any more because of a serious health problem.
But...
If you truly love your cycling, and you believe in yourself, and you aren't someone who tends to give up, then have some faith. Ask around - research those in the field that are regarded as unorthodox, and contact them; you'd be surprised how different a second or third opinion can be from your original practitioner. I know just how 'out there' that might sound, but it's worth a shot, right?
It's shit now, but it'll work out. I believe in your desire to make things happen - it might not be a quick fix, but you won't back down from the challenge.
It's not in your nature. Good luck fella!
Sorry to hear that Ton.
I'd echo Bullhearts idea about not giving up.
There is lots of advancements in AF management.
Eg cryoblation & PVAC.
Also the aorta has nothing to do with AF, perhaps Atria? If that is too big then he just needs equipment with greater reach.
The pacemaker option is ok but you are young. The battery will only last around 10 years so it'll be an operation to replace them each time.
AF is a real pain in the ass to have & to manage but there is always new treatments & drugs coming out, so chin up.
Iain.
Hi Ton,
I've never met you or communicated with you before but can really understand how the thought of not being able to do something that you love can seem overwhelming.
Try getting in touch with this guy in the forum post below, I realise you and him might have very different issues but nothing ventured Eh
http://maltonwheelers.17.forumer.com/viewtopic.php?t=1268
Rich
Iain, sorry i meant the atria. the ablation i had last week, the consultant used a longer and more manouverable probe. he told me that no matter how many times he tried he would not be able to reach.
Bullheart cheers mate, you more than most must know what i am going through.
i wont ever give up mate.
+1 vinneyh and 2wheels1guy regarding the pacemaker.
DOI: I'm a cardiology registrar but obviously don't know the specifics of your case.
It might be worth talking to your cardiologist again about the AV node ablation plus pacemaker ("ablate and pace") option. The pros: gets rid of your symptoms. The cons: doesn't get rid of the AF, so you still need warfarin (but not the beta blockers), risks of a pacemaker (1/100 risk of collapsed lung is the major one), pacemaker needs changed every 8-12 years (so potentially you would need 5 procedures during your lifetime).
You need a serious discussion with your cardiologist about these pros and cons, stressing the effect that the symptoms of AF are having on your life.
Ton - I remember you were thinking of moving up to Scotland. If this is still the case then you have something to look forward to and aim for a slightly different life in nice surroundings.
We all send you a big hug and with the electric bike (or think about the tandem option) we will get you back out on some trails. Just say when and the gang will be more than happy to come and pootle alongside.
Bunnyhop x
legolam, sorry for asking, but when you say 'gets rid of the symptoms' do you mean the breathlessness and dizziness ?
That's shan Ton. Stick in mate...
Sorry to hear that Ton. Hope something further can be achieved as suggested above. Keep your chin up and still keep involved with the two sports you obviously love as much as you can.
Crap news that Ton, thinkin bout ya though.
Jim. (Futtock)
Ton - theoretically, it should get rid of the symptoms caused by the AF driving the ventricles too fast. If the breathlessness is multifactorial eg smoking/weight/heart not pumping efficiently due to other factors, then it may not.
Like I said, it needs a full and frank discussion with the doctors who have all your facts and figures to hand. 45 is young for a pacemaker, but by no means the youngest I've done (and I've not been at this that long!).
legolam, thanks for your input mate.
Essel, cheers mate.
Ton, i'm gutted for you. Fully look into the options. I know (admittedly older) guy who has had a pacemaker fitted and is still banging in stupid road miles. I really hope you find an answer to this one
Ton that sucks big time.
I hope you find some suitable distractions.
Bloody hell buddy, that not the news I was hoping to hear. 🙁
Keep your pecker up, I know it's not going to be easy.
Sounds like some gentle DH/uplift stuff may still be doable.
Join us on a private mid week one if you want, you know you are always welcome.
Hope to see you soon
Dave
Dave, booked for inners for 1st of april.
let me know when you have a private one booked, i would love to make one in.
never done one, but i am determined not to let this get on top of me.
but i am determined not to let this get on top of me
The perfect answer 😀
don't know how many Rob has on this one
[url] http://singletrackworld.com/forum/topic/midweek-uplift-at-innerleith [/url]
but a few of us are hoping to go.
AV Nodal Tachycardia?
I knew someone who was very active and went through many problems with such treatment (for AVNRT), she was 20. Ablation can fail many times but I thought that's why they carry out multiple procedures until it works. Her cardio was all to eager to fit a pacemaker I believe.
I would get you in contact with her but these days we hate each other.
Hope things go well.