No ICD yet, but probably soon.

Hi, I am probably going to be a new member here. I was just told yesterday that I probably have ARVD (or Arrhythmogenic Right Ventricular Dysplasia), and that once it is confirmed I will need a pacemaker. I am very scared and confused. I hope to find information, advice and support from this community. Thank you for letting me be part of it.

Stephanie.B

7 Comments

New Pacemaker/ICD

by SMITTY - 2009-06-06 04:06:03

Hi Stephanie.B,

I wish it wasn't necessary for you to have a pacemaker but since it appears one is in your future, welcome to the Pacemaker Club. Here you will find a few experts that can provide you with an enormous amount of information and advice. Then there are the rest of us that can tell you our experiences with our pacemakers and either answer some of your questions or help you find the answers.

I think you will find that many pacemaker wearers are in their own little world. They go through life with a little piece of scrap metal, that has some very sophisticated electronic internals, in their body that will keep them going and going and going, just like the Energizer Bunny.

Getting a pacemaker is serious business, but it does not have to be a totally life changing event. A PM is on of the most reliable and durable devices made by man. It will sit there doing its job day after day with no help from any human. I've had mine 9 years and there are many days I never even think about the fact that I have a PM. Of course I would be remiss if I didn't say that when you get your PM you may be sore for a few days, but the surgery is not bad. Many of us have had oral surgery that was many times worse. Then, while not everyone has to go through a break in period, you may have to get your new PM adjusted a time or two at the beginning so that it can provide you with the maximum benefit. But these checkups and adjustments to the PM settings take very little time and are totally painless. All in all you will be getting something that can improve your health and/or quality of life while interfering with your daily activities less than you can imagine right now.

As time goes by and you have questions or comments, Pacemaker Club members will be here ready to provide answers and offer support so don't be shy about visiting.

I wish you the best,

Smitty

Thank you

by Stephanie.B - 2009-06-06 06:06:05

Thank you for commenting and the kind words and information Smitty.

Being 28, and a mom of a 2 month old and 18 month old, it is comforting to know that a PM can help in so many ways and doesn't have to get in the way of my everyday life.

I am so glad that I found this group, because even with well meaning friends and family's support I haven't ever felt more alone. I think this community will be what I need to know that I'm not alone and to know other people going through something similar.

Thank you again.

To Frank

by Stephanie.B - 2009-06-07 03:06:21

The enlargement or dilation of my right ventricle was discovered with CT scan (they were looking for a blood clot). I have had an MRI, EKG and an echo done and I am currently wearing a monitor for 21 days.I haven't had genetic testing, biopsy or right ventricular angiography.

I am trying not to get worked up over the possible ARVD diagnosis. I have read that it is rare and like you said, it's hard to diagnose.

I am warming up to the idea of having to have a pacemaker. Since I know that I do have something wrong with my heart, I would feel better knowing that I had something on place that could save my life if I need it.

Hi Stephanie

by Hot Heart - 2009-06-07 03:06:23

Welcome to our very exclusive club, we dont just let anyone join you know! lol. Dont be scared of getting your pm it really is ok. I was terrified, actually hysterical, boy did I feel such an idiot half an hour later when i was tooking into dinner pudding a cuppa and looking at stuff with the nurse on the internet.

I'm not saying that its the most amazing half an hour of my life, but it wasnt painful, wasnt scary. Much worse trips to the dentist. I've got a toothache and am scared stiff of going to the dentist, pm was nothing honest hun!

If you look back at some of my previous comments somewhere i did an indepth account of what happened, just have a read. Keep in touch and let me know how you get on. HHx

Diagnosis

by ElectricFrank - 2009-06-07 12:06:06

I found this on one medical site:

"In order to make the diagnosis of ARVD, a number of clinical tests are employed, including the electrocardiogram (EKG), echocardiography, right ventricular angiography, cardiac MRI, and genetic testing."

Has the doctor done any of the more definitive tests. Since ARVD has to do with changes in the heart wall it would seem the only way to know for sure would be a right ventricular angiography with a biopsy or genetic testing.

There are a number of other conditions that can present the same EKG or echocardiography changes. From a practical standpoint though, they all would be treated by a pacemaker. Just don't let the impressive sounding diagnosis scare you especially if the extensive testing hasn't been done.

As for a pacemaker that is no big deal. It is an easy surgery to implant one and in many cases life returns to normal with little or no limitation.

best,

frank


Pacers

by ElectricFrank - 2009-06-08 12:06:13

The nice thing about a pacemaker is that for many conditions it isn't just a life saver. It also restores quality of life. I'm back to all my normal activities with mine.

frank

to probely soon...

by Battery operated - 2009-06-16 12:06:12

No worries my new friend, I was 20 when I got my pacemaker, 3 years ago. no it wasnt all cake and cookies, but it didnt realy change my life alot. Just the way I looked at it. my doc accualy cut me so my scar is vertical and can be covered by a tank top and after the swelling went down I think the only person who can see the raise where it is, is me. Plus I got a cute guy nurse to sneek me in subway so no bad hospital food for me! :) any questions I can help with, let me know. I know it's weird to think of getting something like this so young.

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