Thursday, August 13, 2009

Anxiety and the ICD Recipient

I recently had a conversation with someone from a medical device company and during the discussion she mentioned that she was surprised that someone that has never been shocked experienced anxiety about having an ICD. I was surprised she didn’t know that we did.

Anxiety is a constant topic with us. We have all experienced it and we have all supported those around us going through it. It is not something that we go through once. Many of us have gone through several ups and downs since being implanted. And what is more, it is the first thing most people on the forum will ask about. It has led to some great discussions among us wired folks and I thought I would share some of the collective advice.

First and foremost, understand that anxiety is a normal and common reaction. Very often we are getting the diagnosis of a major heart issue AND a recommendation to receive some pretty amazing technology all in a short period of time. To most people, this ICD stuff sounds like something from Star Trek and we are trying to learn medical terms we have never heard before at the same time. It takes some getting used to. I think the best way to address the anxiety is to break it down into manageable pieces.

Don’t be afraid to talk to your doctor about anxiety. Doctors are beginning to understand that it is not a walk in the park for those of us with ICDs and heart disease. Heart disease of any kind is enough to cause depression. Add to that the fear that we are going to get a shock (even though we understand we need it) and it can be overwhelming. Doctors can help with medication if needed. But they can’t do a thing to help you if you don’t mention it to them.

Find out everything you can about your heart condition. There are many things that cause dangerous arrhythmias, find out what is causing yours. No matter how complicated it is, there is a name for it… even it is something obscure like Non-focal Reticulated Cardiomyopathy. Ok, I just made that up but trust me, there is a name for your condition. Ask your doctor to explain it and don’t be afraid to ask him/her to explain any words or terms you are unfamiliar with. Then you will be able to read about and understand what is happening to your heart and why all this is necessary. From there, you and your doctor and come up with a plan to treat you going forward.

Look for a support group. I guess you have already done that by finding this site. But see if your local clinic or hospital has a group that meets in person. We didn’t have anything like it in the Bay Area (CA) so we started our own. It really helps to be able to talk to someone face to face about those moments when you are afraid to walk up the stairs or to be alone. If you are in the Bay Area, join us. If you are not, check with your clinic or hospital to see if they offer this type of program.

Learn as much as you can about your device. Ask your doctor to explain how it works, what kind you have and why he/she choose that model. Ask for a copy of your interrogation report and learn the different program settings. Knowing how it works really helped me get to a comfortable place mentally. I have a Medtronic device and found that they have lots of support information available to recipients. I think all the companies do this. I know it seems silly, but having one to hold and touch makes this seem a little easier for me. Ask your doctor to show you a device if you haven’t seen one already.

Finally, understand that it takes a little time. You are dealing with diagnosis, devices and mortality here. That is a lot to deal with. But it does get better. It won’t happen over night. But little by little you will get back to your old self or at least something very close to it.

1 comment:

C said...

This was a terrifically helpful post. You're dead-on about anxiety regardless of whether the device has shocked yet. I wish device makers talked more often to ICD recipients and less to doctors. Thanks for writing.