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.
bwaarp, please just forward this thread to her if you can. It could make a difference
+1 for legolam need to have more discussion with your consultant about your options, I always thought people were able to exercise on pacemakers. Good luck.
I really can't. We have both sworn to each other we'd have the other arrested if we talked. (We ended in a way where one side had to have the last word)
The advice that I can give based on what happened to her is to see another consultant in a different hospital...... as she worked for the NHS she somehow managed to end up being given two consultants or something in two different hospitals (one at home, one at uni)...she played them off against each other to get the best opinion. Apparently their opinion varied quite a bit. One gave her a cocktail of drugs that the other thought was idiotic etc etc.
That's all the disease related helpful advice I can give, I'm really really sorry but I can't forward this to her. I can't remember many more details as I'd blocked her out of my mind until today and have forgotten what truly happened, I'd forgotten she existed.
I'll try to tell you how she dealt with it though, she was a kayaker. As you can imagine blacking out when kayaking is not good but being the mental case she was she would get in dual kayaks with her mates. Last time I heard she had sorted most of the heart problems and was back kayaking in single boats again but there was about two years when she thought she wouldn't be able to kayak again. If she had a pacemaker fitted I'm sure she could have carried on with the kayaking though, if her heart problems were controlled as it's requires more strength as opposed to fitness imo.
So maybe the OP could try taking up another sport if he get's a pacemaker. Kayaking is brilliant.
is it worth seeing another consultant, maybe privately if need be? I have no specific experience though..
Stay positive..
Can't really add anything but stay positive ton. After my (quite serious) health issues last year I always thought along the lines that life can often deal you a really shity stick somtimes but its how you clean it that counts. 😉
Ton, you don't know me but I've been doing some reading up and found this;
What if I have a PACEMAKER?Post Implant:
Hopefully your pacemaker has been sited near to your non-dominant and least used arm. Do not worry if this is not so. The doctor probably had a good reason for not doing this.You must limit weight-bearing arm movements on the side you had the pacemaker implanted so that the pacemaker wires have a good chance to become well embedded into the heart muscle.
The pacemaker implant site may take a few weeks to completely heal and for the bruising to go away. While there is bruising you may feel some muscular pain in your chest or shoulder. For this reason you might like to avoid heavy lifting until this has completely gone.
Follow-up:
Keep on you at all times your Pacemaker Identification Card which you should have been given soon after the pacemaker was implanted.If you do not yet have one of these ask if you can have it. If you have not received your next follow-up pacemaker check appointment do not assume it will eventually come in the post. Telephone the hospital department that does the checks and ask them to confirm your next pacemaker check appointment date and time and write this on your calender or in your diary. It is very important to turn up for these pacemaker checks. As a cardiac athlete who indulges in frequent episodes of high-rate pacing, you may need to have slightly more frequent follow-up checks in order to more closely monitor battery depletion. If you can not make your appointment for some reason or other please notify the hospital as soon as you can so that your appointment slot can be offered to someone else who needs it. Be sure to ask for a new appointment for yourself.
If you experience any worsening of symptoms report it immediately to your doctor / physician without delay and get it checked out. You should report any dizziness, increase in breathlessness or fatigue, persistent chest muscle twitch or hiccups, bruising, redness, swelling, increase in palpitations, a pulse below the lower pacing rate, itching, tenderness, inflammation, or discharge around the pacemaker wound site or any of the symptoms you experienced before you had the pacemaker inserted and of course any angina.
Pre Exercise:
Ideally you should have a post-operative exercise ECG test prior to starting a supervised hospital-based cardiac rehabilitation programme six to seven weeks after the procedure and to complete this before commencing training on your own.Type of Exercise:
A suitable exercise training programme depends very much on your underlying heart conduction abnormality, what type of pacemaker system was implanted and your other cardiac history.The exercise programme that is generally recommended for pacemaker patients is similar to that of all ischaemic cardiac conditions ( stable angina, angioplasty, stent, MI and CABG patients ) so please refer to the recommendations for Angina patients above.
Initially you should just concentrate on doing low to moderate intensity and duration aerobic type exercises and build up your fitness and stamina.Eventually you should be able to do most activities and sports but not 'contact sports' as they could potentially damage your pacemaker.
Care must be taken with activities / exercises that involve excessive Range of Movement ( ROM ) in the shoulders as this increases the likelihood of crushing the pacemaker wire between the first rib and collar bone. This is sometimes refered to as a 'clavicular pinch'. A few examples of excessive shoulder motion can be seen in certain yoga postures, seated overhead presses, swimming butterfly and two-handed racket or golf swings.
Self-Regulation:
You can calculate safe and effective exercise training heart rates by use of the standard Karvonen equation explained on the web pages above. The maximal training heart rate of 80% of HRR ( or 85% of MHR ) can be programmed into the pacemaker as the maximal pacing rate.As a cardiac athlete with a pacemaker it is adviseable to occasionally record your exercising, peak exercise and recovery blood pressures alongside your pulse rates.
Rate Responsiveness:
Some pacemakers have activity sensors which detect body activity and adjust the pacing rate accordingly. Some of these pacemakers are 'semi-automatic' and self-adjusting. Others need to be fine-tuned by the doctor or technician at your pacemaker follow-up checks.There are many pacemaker parameters which are useful to the cardiac athlete and these can all be adjusted. The ADL ( Activities of Daily Living ) rate should be programmed to provide adequate cardiac output during your typical daily activity. The Activity Acceleration slope determines how quickly you get up to your exercise training heart rate. A Rate-Adaptive AV feature mimics normal physiological responses to vigorous exercise. The Upper Sensor Rate and Upper Tracking Rate should be programmed to provide a cardiac output that meets your metabolic demand during exercise without provoking symptoms such as angina, etc. The Activity Deceleration slope determines your recovery rate after exercise.
Diagnostics:
In order to monitor how successful any programming changes are the appropriate diagnostic functions should be set to 'on'. This is like having your very own internal 24 hour ECG recorder and will help to fine-tune the pacemaker to you and your sporting lifestyle.
Source; [url= http://www.cardiacathletes.org.uk ]Cardiac athletes[/url] I think it goes to show you should never give up on something you love; there's lots of options open to you.
There is also a [url= http://www.ncbi.nlm.nih.gov/m/pubmed/11144040/ ]paper[/url] published thats proves the value of exercise for people with AF, it's far from a life time exercise ban than it was once thought.
Good luck and all the best. Hope to meet you soon.
Edit; woa, sorry for the war n peace quote; didn't seem that long when I read it! S'all relevant tho; really interesting
Ton, no advice to offer but Thanks for guiding me on the best urban mtb ride round Leeds a few years back
Hi Ton,
I've emailed you a message from a friend. He had some serious heart problems and a bleak prognosis. He is now doing really well.
Hope it helps.
Kudos, got the email cheers, i will have a read in a while.
Tony,
That sucks, big time.
As many have said, Its been both a pleasure and an honour to ride with you fella, The Black Hambleton ride, stands out as one of those.
Riding great trails with dear freinds has to be one of the best things in the world.
I'd glady bring the dogs over, and walk across the tops of Sutton Bank with you fella. Granted, its not ( quite) the same as riding it, but we could still walk and talk bollocks the same as if we where riding.
I'll be back over soon, so will pop in and catch up.
Nick
