Paced 100% of the time?

[Eileen2345]

Hi Everyone

I went to the new cardiologist yesterday and he was better than the last 2 I have seen. (I think, I hope this doctor knows what he is doing.)

The new doctor, Dr. Maki said that I should not take Cardizem, that it dilates the blood vessels too much and is not good for this condition. Is he right? (The last cardiologist gave me Cardizem.)

He gave me a prescription for Verapamil 120mg. I will take this. I need to now.

He said that he wants to have my heart paced 100% of the time with my ICD. I told him I was not sure I wanted to do that.
I think I remember reading here that it is not always a good thing.
I would like to know what you here think and know about that first, before I agree to that.

I gave him a copy of my last echo report and he did an EKG. He said that the EKG was very abnormal (I'm sure that's common with HCM). He listened to my heart and all the usual stuff.

He said I have diastolic heart failure and that I should have no problem getting disability. That is good news because then after 2 years I can get on Medicare (because I have no insurance, no one will insure me).

He does not want me to take a diuretic yet, he said that since my lungs are clear, he does not want me to get dehydrated at all.
He said that deydration causes more obstruction because it shrinks the ventricle (?)

I still have to watch my salt, he said that I do need salt though in order to maintain fluid balance. I can have about 3,000 mg a day.

But anyway, back to the question... again, what does anyone here think about being paced 100% of the time?

Thank you so much for any replies and information.

Hugs to All

Eileen

[Laoshur]

Hi, Eileen,

I am paced 100% for the same reason and have many of the same problems as you, but I am on diuretics and at the moment still have fluid in my lungs. So, what do I think about 100% pacing??? If you can wait a week or two I should have more info. I will fly back to the US tomorrow and get the first readings on the results of 100% pacing in a week or two. My take on it at the moment is that I can walk a little faster without chest pain and sob, but not much. However, I think the chf is worse. Is that a result of the pacing? I don't know. So, for me, I would currently give it a 50-50, but maybe I'll know more in the future.

For others out there who really object to the pacing, I would personally really like specifics about how it harmed people you know. I know that the studies were falsified, so the data in favor of it is null and void, but I am more interested right now in knowing what the objective and subjective negatives are. Eileen needs to know whether to try this and I need to know whether to ask the doctor to turn this thing off.

Thanks, all,
Rhoda

[Burton Borrok]

Hi Eileen,
I think Rhoda is on the right track with the 100% pacing, and in your shoes I would hold off on it until I had more information to base my decision on. I would also ask the doctor to explain any other alternatives that might be available – and the possible consequences of each. How he responds to this, (pushing one way or the other – scare tactics – giving a clear and reasonable explanation of the alternatives - or whatever) should also give you a better feel for his abilities.

In regard to all the other things you covered, I think the doctor is on firm ground, and you might see some positive results from the drug changes.

Wish I could be more clear in my answer, but I do want to wish you better control of your condition.
Burt

[Pam Alexson]

Eileen , there are various controversies regarding 100% pacing and there are all variations to the pacing exercises. It would be a good idea for you EP cardiologist to go over the pro's and cons with you. I am very lucky that my ep was around me and familiar with HCM when i was first diagnosed and treated in Boston . She relocated to RI which is also very near me and she has followed closely with all directions from my HCM specialists. There is a lot of theory that certain pacing can help the HCM heart , but there is also data that shows that some HCM hearts have been negativly effected by this pacing. I was 100% paced for about a year before my myectomy. It is hard or impossible to tell if I was made worse by it. I was told from the beginning that it was relatively experimental and warranting a try as my condition was already deteriorating. I actually felt like I was improving for awhile after, but there is that very strong placebo effect in which for a period of time many things appear to help especially if we are of the mind set to believe that it will. Eventually the placebo effect wears off and the actual evaluation can be made. I was not on long enough to determine it and actually I started to not feel so well near the end of the trial, so it was terminated.

Back aways when the initial evaluater did his testing , some of his facts were reportedly fudged so the whole trial had to be thrown out. I do not believe there has been another completed study since that one. It has left the EP's to speculate and do their own experiments and even to speculate that they believe the data or not that this individual gathered in his supposed "fudged trial".

As far as the disability /medicare. If you can get your cardiologist to review your records and to specifically date the time of your diagnosis and to state that you have not been able to work since that specific date and you have proof that you have not worked since that specific time , then your date of diagnosis/ separation from work, will start the clock . The first 6 months will be minused out, then you will recieve retroactive disability from that 6month date. Two years from the initial date of diagnosis will move your medicare to start at that time. ( 2 years from initiation of disability benefits).

Hope this helps.

Pam

[Reenie]

Cardizem and Verapamil are in the same class of drugs, both are calcium channel blockers, but the verapamil might work better for you. As far as dehydrating and the ventricle "shrinking" - well that isnt' how it works. What happens is that the blood volume decreases, then the ventricle can't fill as well. Please talk to Lisa on Tuesday about the pacing. She will have insight on it.

Reenie