cardiomyopathy and pace maker

Hello o you all!
I am 64, female and lived all my (very active) life in five different countries. Diagnosed with idiopathic Dilated Cardiomyopathy 12 years ago, life quality was okay, albeit somewhat breathless and decreased exercise capacity. In recent years episodes of AF started and required added amiodarone and ever more frequent DCR's which returned sinus rhythm each time. When in AF I was almost incapacitated regarding walking inclines or with slight excertion. Lowering HR did not make it better, only reverting to sinus rhythm did and I felt as new. It was a case of Rate versus Rhythm. My last DCR did not revert me. We (doctors and me) decided on a pacemaker (Biventricular 3 lead /Defibrilator) and all went well. To my horror, not being in sinus, but a paced rhythm, left me still more breathless as before and with every, slightly more intense activity, like stuffing laundry into wash machine, feels like i am doing everything with bated or stalled breath. I have been told i will most likely never go back to sinus rhythm, but refuse to accept that my quality of life will be this suffocating existence, just with the added burden of wearing a pacemaker. My options are running out, having slumped from a phase II to a phase IV in just over two months. Whether i could be a candidate for ablation is still in the open, but then i will be totally pacemaker dependant, while it is questionable if that would bring back sinus rhythm.
I am desperate for any suggestions, since it seems I cannot keep my promise to defy my prognosis and live to be eighty. For the first time since diagnosis, I am very, very afraid.
Thank you for your help
Ulrike

4 Comments

cabg patch

by dottodot - 2009-07-29 07:07:39

I wasn't really very clear. I did mean the atrial kick which is responsible for assisting with cardiac output. Sorry I should have been more explicit. My fingers were working before my mind. Thanks for clarifying that issue. That's what makes this such a great place to communicate. dottodot

ulrike

by dottodot - 2009-07-29 11:07:30

I don't know what country you're living in but I'm sure you're aware that usually 15-20% of your cardiac output comes from the atria and not being in sinus rhythm could be enough to throw you over the edge. I'm sure your physicians have discussed all this with you but when you say with an ablation you would be pacemaker dependent makes me wonder if they would be talking about ablation of the av node-that's the most common and then you still wouldn't be in sinus rhythm. There are some medical centers in the US that are doing a lot of things and you may want to look at the Cleveland Clinic and Mayo Clinics for further information. Also there are many of the pm companies and other medical centers that are involved in clinical trials so gather your information and take your list when you see your physician so you can make the best decisions and plans for you. Good luck. Dottodot

Hi Ulrike

by pete - 2009-07-30 02:07:58

I am aged 62 , have/had the same as you . Cardiomyopathy, AF, Terrible breathlessness. You should have been given a cardiac resynchronisation biventricular pacemaker followed by a AV node ablation 6 weeks (approx) later. My heart remodelled itself. I am now pacemaker dependant and I am really happy about it. I can jump through hoops now. Almost a spring chicken. Without the AV node ablation your AF will be keeping your ventricles under strain and are most likely causing or making worse the cardiomyopathy as well. This is dangerous as I found out. If its an AV node ablation they are talking about then go for it. Cheers Peter

Hi again

by ulrike - 2009-08-03 10:08:14

Hello again
Thank you so much to all of you who replied so promptly and my apology for my not so prompt reply.
To Dottodot, - i am living in Melbourne/Australia and grew up in Germany, France, Austria and Holland. My family lives all over Europe and the entire mixed bunch has heart conditions of sorts, even though our environment and diets in which we were raised were all very different and none of them has the dilated cardiomyopathy kind. I was 42 when I emigrated to this continent after having backpacked through China, Korea and the rest of Asia on my way down under. That's why it was previously thought I might have had acquired a virsus.
Dottodot, I contacted the Cleveland Clinic following your advice and am waiting for an answer, - maybe.
To cabg patch, - Yes, I know it is heart failure, my EF was never higher than 30% and the fluid retention is concentrated around the waist. Never in the ankles. My atria have dilated too over the past five years and that initiated the occurance of many a Fibrillation. Funny enough, I worked in a hospital at that time and ironically in the Cardiothorassic Ward.
This being rather a disadvantage, because you see and her and read too much about all these trials and those who are unluckier than oneself. Again, my type of condition is mostly met with a vage and ackward shrug and you know that there is not much that can be done.
Therefore, Peter, as my last Jump start failed to revert me, I was put on the list for the pacemaker, in spite of two months earlier, I was told that, for an implant to be considered, I was not 'sick enougjh'.
As mentioned earlier, i felt pretty good after every Cardiovertion and now, that I have that expensive thing in my heart, I still stop halfway up two flight of stairs whereas before on a good day I managed a 45 Kilometer bycicle trip. So turkey one day, spring chicken the next.
I will have a checkup soon and will discuss that dreaded AV node ablation, - perhaps I should take all your answers with me./ Meanwhile, if I may, I will cry on your shoulders a little bit longer, especially when I just missed another train on the way home because my legs would not carry me the last meters uphill.
All of you, thank you, thank you, You surprised and humbled me with your kindhearted advice on my first day of joining this site.
Hope, I can be of help to you sometimes.
Cheers
Ulrike

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