I am going to have a procedure in the next few weeks CRT-D (cardiac re-synchronisation therapy - defibrillator fitted.
Cardiologist is going to put me on Amiodarone tablets along side the device then after some time will stop the pacemaker part to see if the tablets do the same job. Then depending on results will do an ablation to the left lower ventricle to get rid of the part of the heart that isn’t working. If this all works he says I will not need the device and will remove it.
it is so much to take in as he says I haven’t got a choice it’s my only way forward and he says this drug has lots of serious side effects.
As these things happen things might change to another route depending on whether it works for me.
Has any one had similar experience they can share with me to help me come to terms wit it please? I’m scared of the ablation part as well if anyone can let me know what to expect and after it’s done. Thank you, JOY.
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honeybubs
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Hi in my case I had a CRT-D implant and was put on Entresto what some call a wonder drug, my Cardiologist wanted to do an ablation but sent me to an expert in the field who said looking at the results since the implant an ablation was not required, I feel fantastic and still have my implant,but don’t ever notice it.
I’m already on Entresto 3 a day and other drugs like Bisoprolol and Dapagliflozen. The tablets haven’t increased my ejection fraction it’s stayed at 35% which is great it hasn’t deteriorated st least. I have very low blood pressure so can’t have high doses. They don’t know the cause of my heart failure you see as I have clear veins, arteries it’s just my heart muscle that’s gone big. He said he’s going to organise a genes test so at least my grown up children will know one way or the other. Joy
Hello joy - please don’t fear the ablation. I had one earlier this year and it was a quick and easy procedure with hardly any recovery time. I asked to be put under general anaesthetic for the procedure as I was uneasy about having it under sedation. make your fears clear so that the anaesthetist can sedate you appropriately.
I also had an ICD (similar device to CRT/D) fitted in 2021. I found this procedure to be more painful than the ablation and had to have 2 weeks off work to recover. I had the device placed under the muscle which is a more painful option than under the skin. It does look better though - you can hardly see my device. Once the device is in for a few months you forget it is there, and you will hopefully feel like you have more energy as the device helps your heart to beat effectively and your EF should improve.
Re amioderone - this is a very powerful drug that is excellent as an anti-arrhythmic, but as your doctor has warned you, it can have many serious side effects. I would ask how long they expect you to be on it for (I wouldn’t want to be on it for more than a couple of months) and how you will be monitored. I would want my thyroid levels, lungs and eyes regularly tested if I was on this drug. Please read up on the drug, and with this knowledge, speak to your doctor and see if there is a less problematic drug they could use instead.
It sounds as though they think the amioderone will do the job of the ablation (stop your arrhythmia in your ventricle). I would rather get to the root of the problem and have an ablation to kill the part of the heart that is causing the arrythmia, rather than be on a drug that never fixes the problem and has so many known side effects.
I have a genetic heart condition inherited from my mother - have any of your family suffered heart problems or sudden death?
Thank you for replying and your advice it is very much appreciated. I’ve got to have these procedures done he said I’ve got no choice it’s just that I go into panic mode until I can accept what’s going to happen. I feel a lot better about it now. My dad died at 54 with cancer so we don’t know whether if he’d lived longer he may have had heart problems? We think his mother had heart problems but still not sure as it was in the 70’s when I was 10. So I’m having a genes test done in the near future so that my son and daughter will know for their future. If I have any other concerns I will contact you again if that is ok. Thanks once again. Joy
I went through ablations multiple times already and I’ve got a CRT-D implanted too.
Please don’t fear the ablation, as hopefully will better your quality of life, the thing that I admit not to understand, is your reason for the ablation. Normally ablation is done to get rid of arrythmias…anyway..the surgery will be done under GA as it can last 3-5 hours. When you wake up be ready to spend quite a few hours lying on your back without moving your legs as the access to your heart will be through the veins of both sides of your groin. Pressure dressing will be applied on them in order to stop bleeding and you will be monitored constantly. Once it is safe for you to move around, you will be slowly propped up so you can sit up and have something to drink/eat. You will be given pain killers of course.
Depending on what part of your heart and how intrusive the ablation will have to be, you may be feeling back to normal after a day or so or it might take a few weeks to feel normal again (in one of them I felt very breathless for a couple of weeks afterwards).
CRT-D has helped me but to be fair, not a great deal. I think it depends and changes from patient to patient. For sure it will help your heart pumping more efficiently as the pumping chambers will be in synch and hopefully struggling less.
I hope I was able to help and please ask more questions if you have any, if I can answer I’ll be happy to do so.
Thank you for replying and your advice it is very much appreciated and very informative which is what I like as I need to know everything to get my head around it. I’ve got to have these procedures done as he said I’ve got no choice it’s just that I go into panic mode until I can accept what’s going to happen. I have Bigeminy arithmia and very low heart rate. My dad died at 54 with cancer so we don’t know whether if he’d lived longer he may have had heart problems? We think his mother my Nan had heart problems but still not sure as it was in the 70’s when I was 10. So I’m having a genes test done in the near future so that my son and daughter will know for their future. If I have any other concerns I will contact you again if that is ok? Thanks once again. Joy
Hi honeybubs I have dilated cardiomyopathy and I had a CRT-P fitted 11 yrs ago because of atrial tachycardia coming out of my AVnode, and they saw it was stopping my heart from pumping, so I had an AVnode ablation.
5 yrs ago a CRT-D was fitted because my EF went to 10% after taking a prescribed medication. I take 1 entresto twice a day because I couldn’t tolerate more, dapagliflozin, bisoprolol because after my implant my heart rate was too high, and they said I have persistent Atrial fibrillation, and Bumetanide to reduce fluid. Since taking dapa my EF as risen to 23%.
I’m now getting a lot of ventricular tachycardias so I’m going to see my EP in November.
I had several ablations before I had my first device. My first ablation was 20 yrs ago and my last was before my AVnode ablation. I sometimes forget I have a device in. I think mine is under my skin because it does travel around. Sometimes when I lay down I can feel it and even the leeds but it doesn’t hurt.
My struggle is mainly with heart failure. My dad died at 53 from a heart attack caused by a blood clot travelling to his heart and a few family members have heart issues and cardiomyopathy so it’s in my family. My children and grandchildren so far are ok.
I do wish you all the best and let us know how you get on.
Thank you Deejay, hope things get better for you. It’s good to hear from people who have been through these things. I think this forum is great as we don’t have anyone to talk to most of the time and have to wait for appointments. Thank you once again, Joy.
Have you had any genetic testing done in your family? The DCM/heart failure/electrical issues in my family is caused by a faulty gene called LMNA. All of our family has been tested now and 4 of us have it, all with differing symptoms at different ages.
About 15 yrs ago it was mentioned but not since. They’ve been more focused on me.
My kids aren’t interested because they have breast cancer in their family, my mother in law who’s died, and 3 sister in laws one as died so being females they’re more focused on that.
You could ask your cardiologist to test you to see if they find anything. If nothing comes up then there’s no need to test the kids as they cannot inherit it if you don’t have it.
At the beginning one of the cardiologist did ask me if I was interested in genetic testing and I said yes but I don’t know what happened. I did sign some stuff and they’ve done a few studies on me for world wide they said they’re usually anonymous. At the beginning I was talked into doing a lot of studies around my condition. I don’t even know if I’m still a part of those studies.
I’ve got HF which worsened last year resulting in me suffering VT arrhythmias. I was put on Amiodarone to regulate the arrhythmias
I had a CRTD fitted Aug 2022 which synced my heart but neither the crtd or Amiodarone stopped my arrhythmias.
In May 2023 I had an Ablation. The op took nearly 8 hrs as there were a few areas that were causing the arrhythmias.
I have now started feeling the benefits and am feeling a lot better.
I started getting side effects from the Amiodarone, I’ve got an Underactive Thyroid and flecks in my eyes. My Amiodarone has been halved with the view to stop it in the next 6 months.
My Consultant only wanted me on the drug for no longer than a year as he said it’s a dirty drug but I’ll have been on it 18months when I come off it but started having side effects after 6months.
It’s so good to know all this so when I go in November to see my EP I will have all my questions ready and when he suggests what he plans to do about my VTs I will already have gained knowledge from you and others. I’m sure he’s going to suggest Amiodarone. 😊. All the best
Thank you for telling me about the drug. He said he would put the CRTD in first then start me on this horrible drug on a low dose. After some time he will have me back to turn off the device from the machine to see if the tablets are doing the work and keeping my arrhythmia in order. Depending on what happens he will then do the ablation. I may have got some of it wrong as there was a lot to take in and he speaks fast but he basically wants to try everything he can to get me the treatment that best suits me and will make me feel better hopefully. Thank you so much for replying I may ask you other things as they crop up if that’s ok. Joy x
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