A Patient's Perspective: Living with a Pacemaker

Briefly describe your medical condition. When did you begin having symptoms? What was your diagnosis? When did you receive your pacemaker?

I have third-degree heart block with syncope. I have had symptoms since birth, and spent my entire childhood enduring unexplainable fainting spells, and feeling "not right." My diagnosis was made at age 26; my pacemaker implant surgery was October 10, 1991. I had a second implant in January 2004.

After being diagnosed, how did you react? Was it a scary time for you?

After the initial diagnosis, I was quite scared; I had never stayed overnight in a hospital, and was unsure what was happening or why. However, I had an excellent cardiac staff who explained things clearly and every step of the way. I have been fortunate enough after 15 years to still have the same pacemaker nurse!

How did you find out more about your condition? Was there much information available at that time? Did your doctor provide help?

I did my own research, as there was not a lot of (easily understandable) information available at that time. I spent time in the library, pouring over medical journals, trying to understand what third-degree heart block really was. I learned that syncope means fainting, and it was good to finally know what was wrong with me. My own cardiac team was not a good source of information; to say that they explained things yes, they did but it was not in a language that I could really understand. I call that "doctor talk."

When did you decide to start a website? What were your reasons?

I didn't start WIRED4LIFE until 2004, because I simply didn't have the time or inclination prior to that year. When I did get WIRED4LIFE off the ground, it was at a very slow pace. What did I know about web design or starting a support group? I knew nothing, but I knew I had good people and writing skills, and no matter how long it took, I felt it was important to start this group. The main reason was that I recently had my second pacemaker implant, as well as a surgery to repair a hole in my heart, and I wondered if other pacemaker people had had these same experiences.  Right away I determined that WIRED4LIFE would be for women only. What did I know of men's issues? Nothing. However, I knew plenty about women's issues, being one myself. I also felt it would secure a safe harbor if all of our members were women. I started WIRED4LIFE as a local support group. I submitted listings in various newspaper calendars in the Twin Cities, but after just a few meetings, it was clear that I wasn't going to accomplish my goals on a local level. I needed to reach out to more people, in more places, but how?  With help from Yahoo, I created a very simple and basic website. The dot.com wasn't available, so I chose dot.net, and this has worked out well, as I am starting to get name recognition. In mid October, I felt that WIRED4LIFE (or W4L as we refer to it) could afford to take the website to the next level, so the current website is up-to-date in a very modern sense. Yahoo provides a "Toolbuilder" to assist in creating a professional-looking website. It has been easy to learn, and I have received many positive responses from members regarding the new changes.

What are some of the topics of discussion on WIRED4LIFE? How many members do you currently have?

WIRED4LIFE currently has 81 members. These are women who have joined the Yahoo member page. Through their member page, ladies can post messages, which oftentimes involve questions about procedures, worries, etc. The ladies can post their own photos as well. We have several photo albums, including pictures of members, pets, memorials, and a recently added "gallery of horrors" where pacemaker scars, bulges, pacemaker x-rays, etc., are posted. We also post polls, relating to what type of heart disease you have, to what your favorite color is. I regularly post heart- and pacemaker-related stories and articles. We also have scheduled chats; every Saturday morning from 9 - 10 a.m. CST we have our coffee klatsch, visiting with one another, drinking our coffee, and sharing a funny joke or story.

Why are patient support groups like this so important? What is some of the positive feedback you've received from other pacemaker patients?

Patient support groups are very important to our mental well-being. We can all agree having someone to relate to is critical when dealing with physical ailments.  As I note on the first page of the website, we all appreciate our partners and loved ones for their support, but unless they have a pacemaker, they can't understand our concerns and worries. Since revamping the website, I've received two new inquiries for membership, and most of the ladies have sent a warm fuzzy email my way to compliment the changes and the modern look of the pages.

Does your local hospital provide support groups for pacemaker patients? In addition, do you belong to any other support groups? If so, which ones?

Some of the local hospitals offer heart support groups, but these are not limited to a specific disease. I am not aware of any pacemaker-specific groups. I also do not belong to any other support group.

Are there any other educational resources currently available that you've found to be helpful?

There is plenty of support for women with heart disease on the Internet; however, again not specifically for women with pacemakers. The website www.pacemakerclub.com is good for all people with pacemakers, but posting messages is all that they can offer for the most part.

What are some of the common misperceptions and/or complaints that you've heard about pacemakers?

Misconceptions are aplenty! I'm still hearing the fear women have being around microwaves or electric blankets. Some are afraid to travel because they don't know how their pacemaker will react, or have some fear of setting off the security and having to be wand-searched. Some women wonder if this will affect a possible pregnancy or breastfeeding. In addition, we all know we can't have an MRI, but many question the safety of a mammogram or x-ray.

What advice do you think all doctors should have when caring for their pacemaker patients?

Advice a doctor can give is: REST, REST, REST! So many of these women were super-women in life prior to the pacemaker, and they think they should be back in the saddle immediately after surgery. However, it takes time for your body to heal, and rest is what produces a strong healing. Also, doctors should encourage their patients to find a support group, or something like W4L.

Is there anything else you'd like to add?

I would like to close by saying that life with a pacemaker is not a death sentence. If anything, it has completely changed my life. I doubt very seriously I would be here today were it not for my pacemaker implant. I was having up to 10 fainting spells a day, I was not able to drive, and I was becoming hermit-like staying inside for fear of a spell rather than live my life. It's like having a computer: I know how to work it, and I know how to teach people how to use it, but I don't know how specifically it works. Having a pacemaker is similar: I can't tell you exactly what makes it work, but I know that it does. I also know that pacemakers save thousands if not millions of lives.