Marfan Syndrome and pacemaker

Does anyone have Marfan Syndrome and a pacemaker?  If so, how is your heart doing since the implant?  Since our hearts are delicate, I'm wondering if it can take the presence of hardware inside it, and for how long.

I have asked my doctor, but the condition is rare enough that there doesn't seem to be any literature on the two combined.

3 Comments

Marfan syndrome and a pacemaker

by Gemita - 2024-11-06 09:31:38

Susan, I have Ehlers Danlos Syndrome with considerable overlap symptoms according to my consultant, resembling those of Marfan Syndrome.  There is one member I know here with Marfan Syndrome:  Member simonsimon.  You could private message him but I haven't seen him on this site for some time.

Please try not to worry about whether your heart can take the hardware with your condition, because if you need a pacemaker it is more important that you have one.  A pacemaker may make all the difference to your wellbeing and quality of life.  I have had a pacemaker since 2018 and it has been a wonderful device and has helped with so many of my symptoms.

I see you have a Medtronic pacemaker.   Many members here have had pacemakers for years and continue to live well

Hi there

by Lavender - 2024-11-06 14:28:08

Here is a link to an article from the journal of the American college of cardiology in which an 87 year old's EF improved to normal with a pacemaker upgrade:

The headline (from 2023) NORMALIZATION OF EJECTION FRACTION IN AN 87-YEAR-OLD WITH MARFAN SYNDROME AND DILATED CARDIOMYOPATHY AFTER BIVENTRICULAR PACEMAKER/ICD IMPLANTATION

https://www.jacc.org/doi/10.1016/S0735-1097%2823%2903049-8

There is positive news out there. You're doing all you can. 

Thanks

by SusanB - 2024-11-06 15:03:25

Thanks for your responses, and for the positive feedback.  You are right, I should probably just try not to worry about it.  I had a-fib, so they wanted to give me a pacemaker so I could live a more comfortable life, as I had run out of other options.  It is working well, I feel better than I did for years with the a-fib making my heart rate so high.  I should just be happy and try not to worry about the future.

Thanks for the article - if I understand right, they do say the person got Dilated Cardiomyopathy, likely caused by the pacemaker.  But then again, other things are normalizing for the person, and they made it to 87!  So, you are right, I should look on the bright side.  I'm better off with it than without it.

 

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