Pace and ablate update

[donna_1965]

An update after my meeting with consultant. As my pace and ablate hasnt relieved any symptons i am being told that only option is a second pacemaker. Implant .rwplacing tbis one with one that has two leads going to my heart.

He was very honest with me . And said there is no guarante that tbis will work eitber. As not everyone resoonds to pace and ablate in rhe same way. And for some the af has been going to long for anything to make a difference. ....although i wasnt told this when first survery was done. I now have a few weeks to think hard if i can go through all the surgery again. Ive always been positive about life. But dont tbink ive e er felt so low at moment. Im hoping that the deision i come to is the right one. Just seems to be endless... .

[CDreamer]

I am so sorry you are still feeling so low. As Pace & Ablate is my next option I am very interested in your experiences.

I think we are all so hopeful when chronic illness strikes that we will be the ones who will recover and respond and be able to get our lives back and when we don't adjusting to our new reality can be very, very difficult.

Managing expectations is tough and acceptance comes very slowly, especially when you have had a productive and active life. I say this as the last 4-5 years have been very difficult for me with AF being only one of a number of long term conditions I am managing, sometimes better than others.

I truly hope the new pacemaker does make a difference to your QOL.

Best wishes CD

[jennydog]

Such an interesting post and really I cannot add much to what CDreamer has written. There are a good many of us on this forum who face the possibility of pace and ablate so we will always be interested in your experience. Meantime we really do sympathise with your current situation and wish you better times ahead.

Very best wishes

[donna_1965 in reply to jennydog]

Thankyou for yr kind words. It means alot at this difficult time

[dedeottie]

I really feel for you. As this procedure is meant for if all else fails, we really do need to feel the benefit dont we. I am sure everyone on this forum will be hoping that it all works out for you. Thinking of you. X

[donna_1965]

Thankyou. Glad of the suppirt this group brings. At yr lowest and people are so kind

[dedeottie]

Just had another thought. Could you ask for a second opinion? Do you completely trust your consultant? I did completely trust mine but more recently have been getting mixed messages and am now not quite so confident so in your situation I would hope for anothet opinion. X

[donna_1965 in reply to dedeottie]

Ive just had a conversation with gp. And she is going to do exactly that. I have every admiration and appreciate the amount of people they see. I just wish someone could have explained all apects of pace and ablate. I cannot recall once being told of the ercentage of it not benefiting me. After years of af. Every drug. Carxioversion. Abulations 3. This was my last hope.

Yes definately a second opion tbis time. At least then im fully prepared.

Thankyou

[Hidden]

Hi Donna,

I am in the process of having a Cardiac Synchronisation Therapy (CRT) device implanted. This is a type of pacemaker that runs one wire to each Ventricle. This allows the pacemaker to synchronise the Ventricles to ensure they are beating correctly.

My CRT plan involves a pacemaker and drugs and I'm hoping for a significant improvement to my current position. There have been some studies that suggest that sychronising the heart can bring significant short term and long term improvements.

If you check out my timeline you will see the 'joy' I have had so far on this journey we all share.

Wishing you all the best whatever you decide.

Regards

Ogilvie

[cassie46]

Hi - I have have recently been told that I should have a pace and ablate. I have permanent AF, never had an ablation or cardioversion. I have had AF for nearly 4 years now and had tried to be referred to an EP three times over that period but always told to carry on with meds, even though I have problems with them and they are now not working as well. I eventually paid to see a EP at Papworth. So I also have a lot of thinking to do over this, have a few more tests to have done, then I must make a decision. As of yet I am still very unclear if it is what I want. Best of luck with your decision.

Cassie

[teach2learn in reply to cassie46]

It seems to me you have been sorely neglected! By now you should not only have seen an EP, but probably had at least one ablation. From all I've read, the longer AF goes untreated, the harder it is to correct it's odd to me they would go straight to pace and abate before trying ablation, unless there's more going on in your heart than typical AF. Good you finally saw the EP on tour own. Progress!

[Teresakelley in reply to teach2learn]

I have just had a pace and ablate and was informed that ablation don't work when you have permanent AF by consultant at the Heath in Cardiff

[groesclose in reply to Teresakelley]

What was the name of your Consultant at Cardiff. So good to get personal experience. Cardiff EP my nearest as I live in the valleys. Thanks in advance for any advice.

[cuore in reply to cassie46]

Since you are near Bordeaux, France, I would go there for a second opinion as they are tops in the world.

It is horrible that your general practitioner would not refer you to an EP and who is not qualified to prescribe rhythm control medication so you must be on rate.

[snoutington]

Hi Donna. Your post has a really given me food for thought. I had a pacemaker inserted in March this year and an AV node ablation in April. This was because I was told there was no other way to get me out of a 10 day episode of paroxysmal fast AF in which all medications and cardioversion were ineffective. I have leads in my right atrium and right ventricle. I have been highly symptomatic and my quality of life had been reduced to very limited activity within the home and very little social life prior to this. Subsequently there has been a wonderful increase in energy and almost complete disappearance of all the symptoms that I was aware of so unpleasantly previously. Unfortunately within the last few weeks, I have become aware of the re-emergence of these symptoms again and have been trying hard not to despair at what I thought was the "treatment of last resort" being eroded by continuing symptoms. I have read about the dual ventricle pacemakers which i think are the ones you mean? Due to AF, I keep finding myself in a situation that I didn't ever imagine I ever would be and needing treatments I had not thought as relevant to me. Now I am beginning to think perhaps this type of pacemaker could prove to be another possibility somewhere down the line. I think you are wise to seek a second opinion and I'm glad your GP is on board to help you with that. But I am very sorry to read that you have had this experience and I completely understand that you will feel despairing at times. You are a strong and resourceful person to have made it through all these experiences so far. Please don't allow this to crush your determination to live a life with good quality. It sounds to me as though you need to do your research, of which a second opinion will be one important aspect, and take a long term view, if that is possible, rather than trying to avoid short term issues such as another surgery. I say that with empathy and (hopefully) some understanding of way you feel about the decision you are making. I completely understand the desire to avoid more invasive treatment after ablation and pacemaker insertion. It is physically and mentally exhausting. For the long term, my own view is that a possible treatment has to be worth trying when there is no either way to have a manage a reasonable quality of life. I'm wishing you all possible help and support in your search for what is best for you. PS the lack of information and follow-up to patients after having a pacemaker can be startling in my experience!

Snoutington

[donna_1965 in reply to snoutington]

Thankyou for yr uplifying reply.

You are so very correct in the fact that there is very little reasearch or advice if this last option fails.

Im a strong oerson. And am lucjy ti have the suppirt of my grown up children. Altbough it takes the toll on them when they hear and see how im facing the pozsibilty of fuether surgery.

Im trying to fid out mire i to the second pacemaker im possibly going to have. And to the success rate. As the consultant said tbis time there is no 100 percent cure.

Yes my health is important. But ive been unable to wirk for 2 years now. As had hoped id be back in the work enviroment niw. Not still financialy crippled. There is no help Atall except statuary sick pay.

Next few weeks will hopefullt bring more pisitive news. And i will of course post gow things go. I was beginning to feel very isolated. But realise there are a few of ua who still suffer .

I wish yiu all the best. And hope you are just going through a ohase. And that you do not ha e to consider this option .

[zetagirl]

HI Donna: I just sent you a follow up to see how things went and then I saw this post. My Mum has the 2 leads FYI. Everyone says the PM is working fine. I totally agree with 2nd opinions. 3rd, 4th even. Never stop researching and never asking questions. If you don't feel right then there is something they haven't realised yet.....I'm about to get into Mum's meds to see if something could be happening there. Good luck with whatever you do and if I get any answers I'll be sure to post. All the best. Sharyne

[Alphakiwi]

so sorry to hear about your experience. im hoping the procedure can help me as i am finding af terrible