Denial, remorse & anger all in 48 hours. Bereavement? No, just a diagnosis...

[Tractorman]

for WPW Syndrome. One of the lesser forms of AF as far as I can see quite frankly. There are people in this Community who are severely incapacitated by their far worse ailments. I know as I've read your stories and I really feel for you. I am very lucky in comparison!

Why do I say that? Well, apart from a single isolated incident six months ago, I have no symptoms, unlike most of the people who post on this site. I am fit, feeling great and generally in a good place - or at least I was until two days ago. I might have actually not even bothered to do anything about my "turn" but because I am a now a school bus driver, I thought I should get it checked out. That was last October and since then my life has completely changed - and not necessarily for the worse either.

Because I had an episode where I felt faint and dizzy, I had my driving license revoked while it was being investigated. Quite right as well. I have been on sick leave ever since - but I have invested in the time given to me.

I decided for the first time to seriously change my life style. I've lost over two and a half stone, cut back drastically on the booze, started running and exercise every day. It's been hard, very hard at times but it's paid dividends. I did the C25K programme (another Community on HealthUnlocked) I now walk and/or run between 10 to 12 kilometers every day. The last time I felt this fit was in my twenties (I'm 62 now) and was pretty pleased with myself. In fact, I'm the healthiest person I know at the moment! Or I was.

On Wednesday, I got told I wasn't healthy. I actually have a condition which could be life-threatening. I have been told I need to have an invasive procedure (ablation) to make me better - and until then - and perhaps afterwards as well, I'm going to have to take beta-blockers that some people in this Community describe as a living death. All to sort out something that I didn't know I had for 62 years and doesn't affect me on a day to day basis at all.

On Wednesday afternoon when I was diagnosed, I was in denial. Quite frankly I think that they could have told me I had anything, I just wanted to get out of the hospital. I even felt quite emboldened that I'd gone through a procedure that had been worrying me for over four months.

The next day I felt miserable, tired and confused. I decided to try and make the experience something positive and posted what had happened to me on this site as I hadn't been able to find out much about the testing procedure anywhere else. It did some good but it wasn't a great day.

Today? Today I feel angry. I feel angry that I'm going to have to start taking drugs that could well undo all that hard work I've put in over the last the six months (lethargy & breathlessness sound familiar?) . I feel angry that I'm going to be asked to undergo a medical procedure (which quite frankly I'm terrified of) to fix a problem that I wasn't even aware I had. And last but not least, I feel angry that I feel like this when most of you have much worse problems to sort out.

Before I semi-retired I was a professional IT consultant. I respected the other professionals I associated with and took their advice and vice versa. I have always applied and lived my life through logic. I deeply respect the doctors and cardiologists I have met and have always taken their advice. I am "Mr Logic" but today I want to tell them to stick their drugs where the sun doesn't shine and postpone any medical procedures indefinitely. Mr Emotion is in firm control.

Sorry, rant over and thanks for reading it. Perhaps I need a Psychiatrist not a Cardiologist?

[BobD Volunteer]

Not at all TM quite normal. I would be more worried if you didn't care! I had a couple of days like that when I was diagnosed with prostate cancer some six years ago but after those two days I too decided it wasn't gonna beat me. Nor has it.

Sometimes it is difficult not to see the light at the end of the tunnel as a train coming the other way but it probably isn't! Ablation isn't that bad. As a devout coward I would not have had three if it was---- trust me on that.

Remember " Illegitames non carborundum" or for the non latin students here "don't let the bastards grind you down".

[Tractorman in reply to BobD]

You're always there for us aren't you Bob? I only went for a cycle to get it out of my system and you're back with a supportive post.

Good for you on taking on the Big C and as for three ablations, you're just greedy. You can have mine if you want!

[Vony]

Hi TM. I think going through these emotions is part of the journey... Sorry to sound cheesy. But you have pointed out so many positives in your post.. And how great that you have been diagnosed with a condition that is much much less threatening than it would have been had it not been diagnosed. I too have had an ablation before and am waiting for another. It is definitely not that bad. Just the anticipation is. And as for beta blockers.. I have totally got used to them. I was on a high dose of 12.5mg Bisoprolol in the past and was very tired but now on 5mg and completely normal. Wouldn't notice a difference I don't think. Beta blockers have never stopped me exercising. Just my arrhythmias have but as you are asymptomatic if your doctor says exercise is fine then your life will probably not change that much. Thanks for sharing your feelings so honestly. It helps us all to see we have solidarity on this forum. Sending you positive thoughts xx

[Tractorman in reply to Vony]

Oops! See below (doh!)

[Tractorman]

Thanks Vony, Mr Emotion is calming down a bit now so those positive waves must be getting through. Outstanding! I'm a member of four of HealthUnlocked Communities and I have to say they are all populated by very supportive and helpful people.

Just one thing; I know I'm new here but there seems to be a lot of people who need multiple ablations. I thought it had a 95% success rate? Is it because you can degenerate further as you get older and therefore need repeat procedures?

[CDreamer in reply to Tractorman]

So many variables - type of ablation - cryo or RF, the physiological structure of the heart, the experience and expertise of the EP, the variability of the rogue electrical routes and the time AF has been present and therefor established. Think of it as a course of treatments as very often you will need a top up.

I was AF free for nearly 3 years until recently and although I have complications which no longer make a procedure straightforward, am thinking about third as my EP believes the sooner treated the better the chance of success.

Mine were both done under sedation and although quite a long procedure -7 hours - I was discharged the following morning. It is a fascinating process and I am just blown away by the technology which enables a surgeon to conduct a procedure on the inside of your heart with a tiny incision in your groin,

[Vony in reply to Tractorman]

I think a simple ablation has more success rate than a pulmonary vein isolation... But don't quote me on that. I think it is more complex to get rid of AF than some other arrhythmias. But again I am recalling info and stats that were given to me 4 years ago and I can't really remember. Maybe someone else can answer this??

[BobD Volunteer in reply to Vony]

Vony a simple ablation IS a PVI. That is what they do with cryo ablation. Isolate the four pulmonary veins using a freezing balloon. If that doesn't do the trick then a more complex job may have to be done using RF and often drawing lines across the atrium as well as re-doing any areas which may have re attached.

I haven't spoken to my EP for a couple of years but will seeing him Monday after next for a chat and will ask him about success rates these days. Back when I had mine it was 60% on first and maybe 80% on repeat.

[Vony in reply to BobD]

Aah.. Thank you for clarifying that. I had an ablation before but it wasn't as invasive as the PVI I am about to have so I wonder what that was?? So I am having cryoablation.. So this is less complex than the other?? I have no idea what I had before!!! Lol it lasted 5 hours though whereas this one will be approximately 70mins I am told! And success rate of 70% within first year

[BobD Volunteer in reply to Vony]

Possibly for flutter Vony? That is done in the right atrium so no need to puncture the septum between atria. Cryo is faster as it is easier when the four PVs are the only places firing. Look up the Ablation booklet in AF Association website for a more full explanation.

[Vony in reply to BobD]

Ahh right... My EP said my atrial flutter was atypical because it was in the left side not the right. But he did say he ablated a bit to try and control the atrial tachycardia so that must have been what I had done!! Didn't work!!! lol

[Vony in reply to BobD]

I don't like the sound of something being punctured in my heart??? Is this as risky and scary as it sounds!??

[CDreamer in reply to Vony]

No. I already had a hole in my septum, about 20% of people have and are not aware of it. Any puncture will heal but it has been linked to migraines and may well be the reason why some people suffer headaches after ablation.

[BobD Volunteer in reply to CDreamer]

And it is only a tiny hole! The septum is the wall between right and left atria. Because catheter access to the heart is via a vein they arrive in the right atrium which is the side which pumps blood to the lungs for re-oxygenation. In order to get across to the left they have to push through that wall. Since you have already had this you know it isn't a problem.

[Vony in reply to BobD]

Thanks I have purposely not looked up about cryoablation as I will focus on the risks and scare myself. So I am staying blissfully ignorant

[Vony in reply to CDreamer]

Thanks CD reamer. That is mad that some people already have a hole!!

[CDreamer in reply to Vony]

I have a PFO

heart.org/HEARTORG/Conditio...

[rosyG]

Hi,

I'm very cautious about ablation but have a consultant paediatrican friend whose son had this done in his 20s and it was very successful and I think it is a small defined area that is ablated- if I'm right ( not a doctor myself) I think this is why you have been given such a high success rate probability- AF is different in that there can be areas away from the pulmonary veins which have changed so the errant signals are carried there- your syndrome is not the same as AF unless you have AF as well???

If I'm on the right lines it may not be helpful to be looking at the success rates of those on this forum- do check all this out with you doctor- and let us know!!

[Tractorman in reply to rosyG]

Rosy, thanks for your interest and no, as far as I know I don't have AF. I'm thinking that I'm perhaps posting in the wrong Community as this is specifically for people who have an AF condition. I thought that WPW was a form of AF but sounds like it's not. Even so, there is a lot of common ground, useful info and very knowledgeable & supportive people here and I'm glad I found my way here. I'm waiting to see my Cardiologist and I'll be asking him these questions. I will either update this post or more likely start a new thread.

[Buffafly in reply to Tractorman]

The Arrhythmia Alliance covers all sorts but we have members here with a mix of heart conditions.

[BobD Volunteer in reply to Tractorman]

TM, CDreamer just posted a video about it . It is not the same as AF but often linked to it added to which if you have both that is when it becomes dangerous. Go watch the video.

Bob

[Tractorman in reply to BobD]

Thanks Bob, I'll take a look....

[Buffafly]

I'm wondering if ablation for WPW is the same as ablation for AF? I looked up WPW arrhythmia and as I understand it it is a kind of bypass allowing impulses from the atria to move direct to the ventricles so does the ablation just block the pathway or do you still need a PVI or Flutter ablation as well? Maybe you can't answer that Tractorman, but I'd be interested to know the answer if anyone knows.

[Buffafly in reply to Buffafly]

Google says medlineplus.gov/ency/articl... which seems to say only the pathway (s) need to be ablated unless you also have AF.

[Tractorman in reply to Buffafly]

Thanks Buffafly, I've not been diagnosed with AF but it's possible I do have it I guess. I replied to RosyG saying that I don't have AF - I've been through so many testing procedures though, surely they'd have picked up something by now. WPW is really difficult to detect because it hardly shows up on an ECG. My Cardiologist showed me the readings that made him suspicious and I needed a magnifying glass to see the blip!

[Tractorman]

Thanks for that - I've got two weeks supply of 2.5 mg Bisodol and a medication review with my GP on the 16th May so I was going to delay starting to take them until Tuesday which means I run out on the day I see him. So, my fears about the effects are actually not based on personal experience, purely from what I've read of others but as some wise person wrote {and I suspect it was Bob) we are all different and those who are unaffected by the medication aren't driven to post about it so you get a disproportionate amount of complaining posts. I will bear in mind what you said about Diltiazem though as it sounds like it could be what I'm looking for. Ta lots.

[Hidden]

I don't blame you for feeling all the emotions you are going through, but you also sound like the sort of person who will come out the far side very determined to beat it. I haven't had an ablation but I've seen lots of people posting about them, and generally the experiences seem to be really positive. Regarding bisoprolol, I'm on it and I barely notice it, apart from having quite a low resting heartbeat. It doesn't affect everyone the same. There is plenty to hope for - including continuing your lifestyle.

[Tractorman in reply to Hidden]

Thanks Eatsalottie, much appreciated! What dose Bisoprolol are you on?

[Hidden in reply to Tractorman]

6.5mg, or is that 6.25mg - so not a small dose... They would probably start off low - I started at, can't remember the exact tablet strength, but around 2mg and only moved up because my AF was breaking through. My resting heartbeat is about 54 - I have a Fitbit and that tracks it. Can't wait to say what it says when I go into AF, that will be a chuckle!

[Tractorman in reply to Hidden]

Ah, another Fitbiter! I have to say that I love mine. Currently showing 55 resting and that's before I've started taking any Bisoprolol. Do I really have to take this stuff? My prescribed dose will be 2.5 mg which seems to be the default dose they chuck you out of hospital with when you get a positive WPW result.

[Hidden in reply to Tractorman]

I don't think 2.5mg did anything much to my resting HR - you're obviously a lot fitter than me if yours is down there anyway! I love my Fitbit too, just got it last week and it has me jumping about the place

If you have concerns about Bisoprolol just bring them up with your EP, particularly as your resting HR is low to start with. Some people do have issues with it but honestly, I don't notice it. And there are alternatives if it doesn't work for you, you may have to insist a bit but it's always worth doing to get things sorted...

[Hidden]

I have had episodes of SVT all my life , undiagnosed until I was in my 60's, it was one of my Junior Doctors who thought i was having a heart attck in my office, didn't help that one of my admin ladies said I looked like her husband did when he had his heart attack. i was quickly ushered around to A & E to be diagnosed SVT, first time it had been picked up, until then I always thought it happened when i got stressed or over exerted myself...even when i had my daughter I had an episode, it was possed over by the midwives and the obstetrician, I just got on with life as I had when this happened as a child.

No medical examination had ever picked this, even passed my Army medicals. I had the best consultants on tap where I worked, so I listened to them, asked questions and made my decision not have an ablation (I had been cardio-averted with Adensonine). I took medication for about three months but quality of life was not the same, so decided no more medication. I retired from work, and started living a less stressful life. I have had three episodes in ten years, each controlled with carotid massage and ice water and back into rhythm.

I am now 73, very active, still carrying a bit of excess weight, not on any medication for anything, I do not drink and do not eat any processed foods.

My GP still going on about a cardiac ablation..for what??? He was one my VTS trainees back when the SVT diagnosed.

All I am saying is, I made my decision for lifestyle change, not to have medical or surgical intervention and can control an episode of SVT if it occurs, until it can't be controlled my way, then I will rethink my options.

[Tractorman in reply to Hidden]

Inspirational Fitbitsmum, thanks. I will keep an open mind and weigh up the pro's and cons with my Cardiologist but it's refreshing to hear from someone who's made a decision not to go down the ablation road. One consequence of "do nothing" is that I might not get my driving licence back. As it's critical to my job, my social life and my hobby (I'm one of those nasty biker types) I'd jump through hoops to get it back, but as they say, never say never to anything!

[Mazza23]

When I was admitted to emergency unable to breath I was told I had congestive heart failur then I was told I had long QT syndrome Prognosis not good most of the docs were doom and gloom then a new cardio came to see me he said he was sure the enlarged heart could be resolved with treatment and I just had to be carefu not to take any drugs without looking them up on the lqts list was put on 10mg bisoprolo various other drugs felt wonderful for six months then had episode of AF had to be cardioverted as I can't take antiarythmic drugs over the next 18 months I had 7 cvs but enlarged heart improved I learned to Handel the lqts then I had cryoblation I still have bouts of AF but they resolve with no intervention I am on the wait list for a touch up still on all drugs but do feel better and best of all still here to annoy people this site has been a wonderful support to me I have learned not o believe all I hear and to stand up for myself with some of the medical profession so pardon the pun take heart and live your life to the full you will get there xx

[Tractorman in reply to Mazza23]

Well said that man - thanks Mazza!

[Mazza23 in reply to Tractorman]

Forgot to add I still see that cardiologist on a regular basis

[MtLSteven]

Thank you Tractorman for your post. I too went into the stages of grief and bereavement you clearly expressed. I used to think of myself as a superman and Masterr of the Universe. I've now had to retire those images. You have lots of changes and if you do have to give up your license a lot to lose.

You don't need to see a Psychiatrist. Trust me that is a good thing. A friend is one and her case load is overwhelming with some horrific stories. Some form of counselling, psychotherapy or cognitive behaviour therapy may be of help. Asking your GP may lead to a referral but then how long to get the initial appointment? Is there a local charity offering counselling? I have one or two numbers for individuals who do telephone counselling. I encourage people to go into a spare room with a racket and beat the hell out of a bed shouting "I won't take this, i won't have this in my life". Works for me on so many levels.

[Tractorman in reply to MtLSteven]

Thanks for that MtLSteven, "I encourage people to go into a spare room with a racket and beat the hell out of a bed shouting "I won't take this, i won't have this in my life".

I tried it. The bed knocked the cr*p out of me so on my way to A&E again!

[Sharara]

I am sorry but new to this site and am bad on abbreviations. What does WPW stand for?

[Tractorman in reply to Sharara]

Hi Sharara, I'm newish here as well. WPW stands for Wolff-Parkinson-White (Syndrome). You can find out more about it here:-

nhs.uk/Conditions/wolff-par...

and here:-

en.wikipedia.org/wiki/Wolff...

[Sharara in reply to Tractorman]

Thank you . I will look this up. I find the messages a bit alarming when I do not understand what is being discussed. I have learnt quite a lot since reading these posts.

[Tractorman in reply to Sharara]

Well, if it's any consolation, I DO know what is being discussed and I still find it alarming!

[Sharara in reply to Tractorman]

I don't have this syndrome but have intermittent AF which I am not aware of mostly. Have had heart monitor on to check and also heart tests in Cardiology but am told my heart perfusion is normal for which I am thankful. Don't know whether to agree with the docs about taking tablets for AF as I feel that the tablet taking may make things worse in the long run by affecting liver and kidneys after time. I cannot take warfarin or anticoagulants or beta blockers so am on a low dosage of Diltiazem daily. Am quite alarmed at what people are going through by way of treatment.

[Tractorman in reply to Sharara]

Ah, interesting. I thought Diltiazem was a beta-blocker. I'll have to do a bit more research... I'm still looking at the Bisoprolol pack lying on the table. I should start taking them today!

[Sharara in reply to Tractorman]

I shall have to report back to my GP and possibly see the cardiologist again soon and will try to find our more. Wishing you all the best with your treatment. I hope you get good progress soon.

[Tractorman in reply to Sharara]

And good luck to you my friend. May your God go with you....

[Tracyrdh in reply to Sharara]

WPW is Wolff-Parkinson-White Syndrome

[Sharara in reply to Tracyrdh]

Many thanks. Will look this up now on website.

[nettecologne]

I was successfully ablated for WPW in 2008. Not pleasant, as then it was done while conscious. But it worked. The problem was, that I had AF during the attacks also and was not told before that they would only ablate for WPW! So I went into the operating theatre and was only then told by a nurse that my problems would not be over. That was fun

Anyway, WPW is gone, you can see that on any EKG written since. And WPW plus AF means any attack MIGHT be going to your heart chambers, not the atrium, which is usual in AF, but really the chambers. And that MIGHT be dangerous. Still I survived for 5 years after a chance diagnosis of WPW without any attacks, no AF at that time either. And it only became a problem after my thyroid acted up. Even then I waited 10 more yrs with AF plus WPW until ablation. I took the risk. Only when the attacks got frequent and we always had to go to hospital did I consent.

After WPW -Ablation attacks stopped for some months, then when they began became more frequent but less unpleasant (AF without WPW). Frequency only up to 150-160, before that I went up to 200. And I could even sleep while on betablocker and in AF, that was impossible before. Also less dangerous of course.

So it is important whether you have "just" WPW or WPW plus AF.

By the way, my ablation for AF last year was not successful.

[Tractorman in reply to nettecologne]

Thanks NetteCologne, that's very interesting but I'm sorry your latest ablation didn't work. Sounds like you were aware you had AF before you were diagnosed with WPW?

[nettecologne in reply to Tractorman]

No, my WPW was diagnosed by chance at an ECG control. 33 yrs old at the time, never had any AF.

At 38 my thyroid acted up and then AF showed with the hyperthyroidism.

[Coco51]

Poor you. I think many of us recognise those reactions. It's really hard to accept all these restrictions on our freedom. I feel angry too at times, sorry for myself, anxious, and envious of other people who seem healthy and insouciant (even though I know that everyone has problems if you scratch the surface). But it doesn't sound as if WPW is a lesser form of AF at all. Am I right in thinking Tony Blair had this problem when he was PM?

The prospect of an ablation is scary (I know from experience) but I am glad I had one, and am waiting for a second touch up as I have healed too well which means the AF is back increasingly often. But it's not persistent, ie all the time, as it was before the ablation, thank goodness, so that's an improvement. Luckily Flecainide seems to stop it if I take enough! The beta blockers are a drain on the energy at first, but every time the dose goes up I seem to feel better after a month of getting used to it.

You sound like the kind of energetic person who'll get through this with flying colours so good luck!

[Tractorman in reply to Coco51]

Thanks JanetMayne. I'll know a lot more very soon! Again, you've had to had more than one ablation - respect, and commiserations...

You lot make me feel very humble!

[OldSarge]

Hey TM, yup, it's hard to admit you are not in control. I have had to face that fact myself. I also get angry at times about having Afib. I have been on Flecanide for over two years and it does make me tired but what a blessing not to be in constant Afib. I have episodes, and they really depress me. Unlike you I am looking forward to the Ablation. I want to feel normal as much as I can. I am 60 and plan on retiring this summer. I do not want this monkey on my back. About 6 years ago I was diagnosed with cancer. That was a kick in the gut. But my attitude was the same : I want to get better. Been in remission for about six years. Now a new challenge to face and hopefully overcome. I am a believer and I pray daily that God will take this monster away. But if He does not, then I will fight through it like I have so many other bad times in life. I wish you the best sir, and I encourage you to heed the advice of your providers, and if suggested, get the ablation. Life is to short, and for you and I shorter than it used to be. If there is a shot at normalcy take it!

[Tractorman in reply to OldSarge]

Thanks for that! Yup, you're absolutely right. It would make it an easier decision had I been having regular adverse effects mind you. Having said that, ever since they stuck three doses of adenosine into me, I've not been feeling too great although now the Bisprolol is starting to kick in as well. Still waiting for a Cardiologist appointment but it will end up in ablation its pretty much a certainty. Good luck with your problems - You're facing a lot worse than me!

[OldSarge in reply to Tractorman]

No, I am not. I am facing the same thing as you: keeping a good attitude, trying to enjoy life, and hoping (in my case praying) that this thing is taken away from me. I wish you well. I do not know you but I have asked God to be with you through it all.

[Tractorman in reply to OldSarge]

Sorry OldSarge, just seen your last reply. That's really appreciated, thanks!