over kill: hi I have paf copd... - Atrial Fibrillati...

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over kill

squady profile image
30 Replies

hi I have paf copd bronchiectasis and a lung reduction the hospital want to perform an ablation.

I feel so ill with what I have and think would be better off having the ablation but have a pacemaker fitted and nock out the heart problem in one hit my doctor is trying to get my ablation meeting pulled forward from sept as even with increased drug dosage I'm having a rough time of things I know this is drastic advice most welcome

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squady profile image
squady
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30 Replies
gwyn53 profile image
gwyn53

Oh. Bless.

Sorry its so bad for you.

Hope the drs can sort it out for you.

September such a way off.

squady profile image
squady in reply to gwyn53

thanks gwyn 53 I'm short of breath without paf ,I think ive got an answer for it but will the hospital wear it

gwyn53 profile image
gwyn53 in reply to squady

Hope so.

Let us know how you get on.

Good wishes winging your way.

Rellim296 profile image
Rellim296

So sorry, Squady, that things are not so good. I'm sure you'll hear from people who have taken this step. My feeling is that it's better when your doctors feel they can do something for you soon than when they want to put it off and try other remedies instead. All the best!

squady profile image
squady

they talked about the ablation one month after trying a drug then changed the dosage and its taken a year to convince them drugs don't work three out of four blood pressure test show the problem thanks for the reply

Rellim296 profile image
Rellim296 in reply to squady

Well, perhaps they have seen the light now!

CDreamer profile image
CDreamer

Hi Squady - COPD is a horrible disease and AF on top .........

The complications of both together make it difficult to give you an informed opinion. Ablation is no guarantee of ridding yourself of PAF, the chances of success will vary from person to person and the expertise and experience of the EP. It will always be a a risk:benefit judgement call.

I assume you will be seeing a pulmonologist? If so, in your position, I would want to know that both your pulmonologist and EP were talking to each other and considering the risks v benefits from both positions. I would be asking a lot of questions but what questions to ask?

My first ablation seemed to work but within weeks I was in a much worse position than before so I needed a second, very rapidly. The second worked but several things went wrong and I didn't recover too well. Turned out it was nothing to do with the PAF (????) but an underlying condition which was exacerbated by the drugs and possibly the ablation procedure.

I am still very glad I had the ablation as 2 years on I am still AF free although I am struggling with a chronic neuro muscular condition.

I would want to know from both my doctors the affect of sedation/anaesthesia on the COPD? The type of drugs used for the ablation and the possible side effects on the COPD? The chances of a successful ablation for you? How many successful ablations EP has and their experience? Question any and everything you can think of and only then make a decision.

For me ablation is about QOL - quality of life. For me it was getting to be unbearable as it progressed, because AF tends to be progressive and it was getting to the stage when I was having 2-3 episodes a week so not much quality time in between! Ablation for PAF has a slightly higher success rate than leaving until it becomes persistent or permanent so that is also a consideration,

The procedure itself is nothing to worry about as there is no major wound to recover from, but recovery does vary and it does take at least 3 months and most ablatees find that, looking back - it is really 6-12 months to fully appreciate the improvement in QOL.

Balance that with doing nothing or increased drug regime.......... I didn't want to pump toxic drugs into my body so I chose ablations but many others are happy on drugs.

It's a difficult but very personal choice.

If you have any specific questions please post and someone will try to assist you, in the meantime, if you haven't already, go to the AFA website and Publications tag and download and read all you can about ablation. There are also many threads on the forum - from both pro and anti supporters which may help to make your mind up.

Best wishes CD

squady profile image
squady in reply to CDreamer

thanks cdreamer very sound advice I'm 74 now and I don't want much more hassle time for a nap after a rough night

squady profile image
squady

my doctor spoke to the hospital and they said pull it forward they might wake up

Buffafly profile image
Buffafly

Hi, can't give advice but I had an ablation for PAF in December although I have lung problems which I discovered later were much worse than I was aware of at the time. I had been given a choice of pacemaker or ablation because I had tachybrady syndrome on the meds but was strongly advised to try an ablation first. The ablation seems to have been very successful.

I think it is good that your doctors are fully aware of your lung condition and really only they can help you make an informed decision. I hope you get an appointment soon.

squady profile image
squady in reply to Buffafly

thanks buffafly glad the ablation seems to have worked I think if I get the choice I would go for the pacemaker as I can just about cope with copd which is progressing the appointment cant come soon enough

CDreamer profile image
CDreamer in reply to squady

Hi Squady - just wanted to check - you do mean a PV ablation don't you and not a pace and ablate!

squady profile image
squady in reply to CDreamer

h cdreamer, as I see it a pace and ablate should sort me out and would only have bronchiectasis and copd to cope with, they are talking of radiofrequency ablation whatever that is I know I cant cope with this shortness of breath with sats of 98 I cant have o2what do you think

CDreamer profile image
CDreamer in reply to squady

I got ya, Pace & Ablate would make much more sense. It has only just dawned on me that you didn't mean a PV ablation which I was talking about!

squady profile image
squady in reply to CDreamer

cheers cdreamer just what does pv ablation mean

CDreamer profile image
CDreamer in reply to squady

Pulmonary vein ablation, irregular electrical pathways are known to originate in these 4 (or sometimes 3) veins which bring blood from the lungs. By ablating (eliminating by burning) the areas from which these rogue signal originate scar tissue forms which provides a wall, preventing the rogue signals causing the chaotic arrythmias that are AF.

Pace and Ablate is entirely different - the SV node (which is the body's natural pacemaker) is ablated and a pacemaker inserted to do the job that the SV node used to do - meaning you are then dependent upon the pacemaker to keep your heart beating. This doesn't eliminate the AF but it does mean your heart becomes much more efficient at pumping oxygen around the body.

I am no expert but if you google York Cardiology there is a cardiologist who posts a lot of videos on YouTube - very helpful, informed explanations of all things AF. If you do a search on HU type in Pace & Ablate you will find other threads on here which will give you much more informed explanations than I can.

Best wishes, hope you get your appointment soon,

squady profile image
squady in reply to CDreamer

cheers mate that has sorted it for me, i will google it .I cant get to that meeting fast enough

JonathanPittsCrick profile image
JonathanPittsCrick in reply to CDreamer

There's also a factsheet from the AFA at atrialfibrillation.org.uk/f...

squady profile image
squady in reply to JonathanPittsCrick

thanks for the link it s well explained

AnneTS profile image
AnneTS

Dear Squady. You have my heartfelt sympathy. I have had 3 ablations with a 4th possible. Since February, however, when I had a chest infection my AF started off again with avengeance and with ever more powerful medication. I wrote a post some months ago asking why I shouldn't just go for the pace and ablate and Bob, quite sensibly, said that an ablation might lead to success and would save having more serious effects on the heart from a pace and ablate. My EP said that he didn't want to take "a sledgehammer to crack a nut" if he didn't have to; especially as I have a good strong disease-free heart. However the last few months have been an enormous struggle and even with all the potent medecine I am back in AF. I think there comes a time in your AF journey when both you and your EP face the obvious conclusion that a pace and ablate is the only option. If you can suffer for a bit longer and your EP advises this then I would travel that path in the hope that science comes up with a healthy cure. Just as I am now sorting out a solution to a problem that has beset me for years it seems that my younger daughter now has AF. She is under the care of an excellent team and I live in hope that science has progressed from the start of my journey in the 1990s to today. When you have AF you need to have trust in your EP and GP that they are all on your side- then it is up to hope and science. All the best Squady. Anne

squady profile image
squady in reply to AnneTS

thanks for the reply ann I'm at that stage of going into stage 4 final copd sats are still at 98/99 but I cant walk 15 feet without my pulse doing 125 and

puffing like a steam train my doctor said my lungs are shot from to many infections I have had bronchiectasis since 1962 when I was in the army. you deserve a medal going through all those ablations may your god go with you and things go your way

AnneTS profile image
AnneTS

I forgot to say that I am extremely lucky that I have also been a patient at the Royal Brompton for lung problems and asthma. It makes a big difference when you are able to be treated by such a specialist hospital Trust. Does your lung team converse with your cardiac team? It does make life more straightforward. Anne

squady profile image
squady

ive got my doctor the lung team the heart team and rehab team all conversing now I got to get them going into action ive heard nothing but good about the Brompton thanks again for the reply

I think you have a good point – the pace-and-ablate option is more likely to work first go (95%+). It sounds like you need to see the EP specialist ASAP and discuss this with him/her – and make it clear what YOU want.

The usual procedure (what I do anyway) is to put in the pacemaker, then wait a month to make sure it's working properly before going ahead with the "knock-out" AV-node ablation. This is almost always a simple op. with no need for heavy sedation and you should be back in action in 2-3 days. But sometimes people feel so much better after having the pacemaker that they don't need to go on to the ablation (about 1 in 5 people).

squady profile image
squady in reply to JonathanPittsCrick

thanks JonathanPittsCrick glad you agree with my idea my , med team is trying to get my ablation meeting brought forward as soon as possible I'm booked in September but that s a long time away. keep walking as much as possible but m getting very puffy just getting out of my chair bp was 135/50 when I sat back down ,I'm 74 now and don't want radical treatment when I'm much older you say some people don't go for the atrial ablation what about the atrial fibrulation that wakes me up

what rattles my play pen s although m very puffy my sats are 96/63

squady profile image
squady in reply to JonathanPittsCrick

ive been sitting here cogitating your words of wisdom,

I thought that later down the line when the bronchiectasis or copd really progresses that I could be refused the ablation on the grounds of it being to dangerous or my being to unfit . if they went straight in after four weeks I would have a chance of getting over it.

your straight honest view would be welcome as I already said my on doctor stated they don't do pacemaker/ablation for what suffer with but she is new to the job

PeterWh profile image
PeterWh in reply to squady

Maybe it's just the way that you wrote your reply but there are at least four distinct and separate issues / questions.

1) Is it that you are unsuitable for it? If so explain why and on what basis?

2) Is it that the particular hospital / CCG don't do it at all or only against specific criteria? If so explain why and on what basis?

3) Is it that she doesn't do them? If so who does at that hospital / CCG?

4) Has she discussed your case with the senior consultant? What were the conclusions and why? Alternatively why not?

squady profile image
squady in reply to PeterWh

hi PeterWh the hospital do all the ablations its the lster hosp herts, but the stumbling block will be have acute bronchiectasis and stage three severe copd on top of the heart problem

as I have said I have a meeting n sept about an ablation I don't want to go through the repeat ablation rubbish as the copd is progressive

I have looked at this situation and feel the pacemaker/ablation would suite me better and with a little luck would see the end of my cardio problems.

my med team and I have tried to get the meeting pulled forward as suggested by the hospital cardio unit ,ive stopped responding to the medication and the af is knocking the hell out of me.

I know this is a sledge hammer to crack a nut way of seeing it but life with my three problems is rubbish .my doctor is a newbie but at least she chased the hospital not just sat to hear from the hospital

JonathanPittsCrick profile image
JonathanPittsCrick in reply to squady

"what about the atrial fibrilation that wakes me up" → If it still happens after the pacemaker then go ahead with the "knock-out" ablation and then it definitely won't trouble you.

"I could be refused the ablation on the grounds of it being too dangerous..." → The "knock-out" ablation is so simple that you would never be refused that – so you can take your time to think about whether you want it, and maybe try meds like flecainide which work well in combination with a pacemaker.

"my sats are 96/63" → I don't understand: is that 96% resting and 63% with exercise? Or what?

squady profile image
squady in reply to JonathanPittsCrick

thanks for the good reply it makes good sense as far as my sats that is resting now 98% o2 92 pulse .

if I go walk about blood pressure can go to 123 sys 65 dia pulse 85

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