permenent a fib

I am looking for info on my condition.
I am in a-fib 24/7 -365
I have been like this for 25 years
I was diagnosed when I was 11years old
Very rear I know
lookinf for more options
rob

Contact Dr. Andrea Natale at Cleveland Clinic Foundation in Cleveland,OH.

Robert,

Do you have any mitral valve problems? Is you heart structurally normal? These are things you need to find out and a good cardiologist should be able to help you, though I would head to the nearest large, well known medical center for any tests.

Good luck, it is no fun living with AF.

Jeanne

YES my heart is sound and in very good shape
valves are all fine
I don't jump in and out like most afibbers
and I don't have any typical sympyoms ie: weakness or dizzyness
I don't have episodes but I worry abuot the long term effects.
25 years of constant afib is not normal and I don't physicly feel challanged.
I don't know what a normal rythem is like.
I have a lot of energy and endurance.
Most people with normal rythems have a hard time keeping up with me.
I have never had any good explanation or view of my future.
we never thought I would be 37 and still in perm afib.

thanks carol I will try to contact Dr. Andrea Natale at Cleveland Clinic Foundation in Cleveland,OH.

rob

Hi, Rob.

How high / low is your HR at rest and during the day while undertaking different activities?

Larry

Rob - Cleveland Clinic is 1 - 800 - 223 - 2273

Jackie

JACKIE: thanks for the number. much appreciated


LARRY: My resting heart rate is 80. as far as I know I can go up to 150-160
during exercise. I have been as high as 200 before but they are special cases.

Glad to hear of your history Robert. I too am in permanent a-fib. It started with no warning in 2001. I'm 68, male, and seem otherwise healthy.

My heart rate varies from 60 to 80 while resting, 85 to 105 while up and working, and I typically hold it under 125 when exercising though I can generate 150 to 160 if I choose.

My heart seems to be adapting well to the new mode of operation. After 2.5 years of a-fib I certainly don't observe any loss of physical capability, though some is likely.

I would strongly resist the opinions of the locals and the medicos regarding medical intervention, with its considerable risks and lack of long term data. Your 25 years of data is worth far more, especially to you, than the few years of data on expensive, irreversible, experimental, and risky procedures.

Probably because Hans doesn't have permanent a-fib there has been little emphasis in his surveys regarding the long term data from those in permanent a-fib. Perhaps he would be willing to devote a survey to those in permanent a-fib to obtain what data is available from participants regarding the long term prognosis of permanent a-fib.

You sound like a very level headed unemotional fellow and I would appreciate it if you would expand some on your experience with a-fib as it pertains to any long term effects you have experienced.

Wil Schuemann

G'day from Australia.

Crikey, didn't realise there are so many others in the same condition as myself.

I've had permanent AF since Apr/02 (40th brithday). Second anniversary coming up. My cardiologist had me go through an echocardiogram and holter monitor last week. The holter gave him a worry that the heartbeat is too slow occasionally,2.5secs between beats, and was concerned about the possibility of clots forming in the lower chamber and flowing to hte head, so I had a CAT scan which fortunately was clear. There is no heart damage and all other checks are fine. Have another appointment with him coming up and I want to grill him on my circumstances. So any thoughts would be appreciated.

I'm very fit physically and still playing rugby against the docs advice and running regukarly and at the gym. Recently though I've felt tired, have impaired vision and lack concentration, maybe its just old age creeping up.

I'm interested in corresponding with others with this condition.

One question - Is an ablation an option for permanent AF sufferers.? My cardio thinks not..

HI GARY
welcome to perm afib
hows things down under?
so far I am the youngest with perm afib and I also have hade it the longest.
by the way there are only 3 others who have gotten back to me on this
please contact me on my personal e-mail
rpmtns@optonline.net
I would like to ask you a few questions
robert

Robert,

You can get me at gary.osborne@ato.gov.au.

I have a further appointment with the doc in April and want to be well informed this time. Would like to hear your thoughts.

From your email dated 03-09-04 I believe we are in a similar position, being fit and healthy other than this condition and needing to know more from the cardio about the long term effects.

Good On Ya

Gary