Women and ICDs: EP Lab Digest Talks with the Defibril-ladies

Interview by Jodie Elrod

Interview by Jodie Elrod

In this feature interview we speak with members of the ICD patient support group known as “The Defibril-ladies” from North Shore Medical Center (NSMC) at Salem Hospital in Salem, Massachusetts. Debra M. Halligan, RN, BSN, CCDS is the Clinical Leader of the Pacemaker/ICD Clinic at Northshore Medical Center, and Eileen Morris is the originator of the group.

Debra Halligan, RN, BSN, CCDS

When and how often do the Defibril-ladies meet?

Last year at HRS, Dr. Lauren Vasquez did an abstract on women and defibrillators, and that energized Eileen Morris to go and talk with her about this. Eileen came back from HRS and reached out to a couple of women she thought would benefit from such a group. So they started the group last fall, with about six local women aged 30-something to 60 years old, and right away the women were discussing topics such as what type of underarm razor was best for them. As they got to know each other, they talked a little more in depth about family members, husbands, boyfriends, and how they dealt with that as well as their body image. Now they meet about every three to four months, and have started to evolve into wanting to work within the hospital as a contact base for other women getting ICDs. I envision them as a group of women that could be heard on a national level — their stories are so profound. There are two women that have had defibrillators since the 1980s, so they had to have cardiac arrests twice before they even got one. I have other women that are in it for primary prevention.

Eileen and I both feel like we are just the facilitators for this group, and we are here for them to get to know each other and to guide them when it comes to medical questions. The group is really for them to help each other grow and become something that is bigger than just the one person.

What is your long-term goal for the Defibril-ladies? Also, what has been the hospital’s response?

So far we’ve kept it pretty quiet — we feel like we’re still in a pilot program. I’ve reached out to my nursing director and told her about the women. The first step for the hospital will be to have them create a panel to have these women serve as contacts for patient teaching, to have them help patients go over discharge instructions and other written instructions, etc. The second level will be whether we want to do fundraisers or reach out to bigger organizations such as the Heart Rhythm Society or the American Heart Association to help us become a larger group. So these are still questions we are asking the group — what it is they want to do, how they see themselves evolving, and whether their goal is to stay local and help people with their diagnosis or to help reform laws in Washington to help get AEDs in every school in Boston. Whatever their goals are, we fully support.

Why do you think being a part of an ICD support group is so crucial for women?

I think women heal a lot through sharing and knowing they are not alone in this journey. We want to know there are others out there that care.

How as a support group are you able to help women adjust to issues dealing with their ICDs?

The meetings are primarily discussion based; we do suggest other helpful coping methods such as yoga, acupuncture, and anti-anxiety meds. One of the women in the group is also working on an emotional timeline, in which she is writing out how her healing is taking place at the three-month and six-month markers. The idea is to gather enough information so that at some point we can have Dr. Samuel Sears from East Carolina University help us formalize it in a way that we could eventually share with others how our patients felt in their healing process, psychologically and physically, at the three-month and six-month markers. Ideally we’d like to take the emotional timeline chart out to a year and then extend that to not only the first year, but to a lifetime. 

Tell us about some of the unique issues that women with ICDs face.

I think when women are faced with having an ICD implanted, they have to confront many difficult decisions all at once. Unfortunately there is also often not enough time up front for women to make a decision on where the device is going to be implanted. Dr. Vasquez had a great poster this year at HRS on the mammary implant technique, which is placement underneath the arm and behind the breast, and when we told the women about that in our group, they thought that was fantastic. Although we’re not involved in the pre-implant, I don’t think a lot of women are given a choice on where the device is going to go, which one they’re going to get, and what it’s going to look like. So I think it would be helpful for the Defibril-ladies to move into advocacy, to let other women know they have choices.

You’ll really benefit from hearing their stories, because each of them is unique.

Interviews with the Defibril-ladies:

Donna Michaud

Tell us a little about yourself and your medical background.

I am a 52-year-old mother of three wonderful sons. My first issue with my heart began in 1997, six days after the birth of my third child. Experiencing severe chest pains, I was rushed to Beth Israel Hospital for an emergency cardiac catheterization, which, much to the surprise of the doctors, showed no blockage. Instead, it showed my heart damage was caused by a rare condition called “postpartum cardiomyopathy.” With hard work and determination, I regained most of my heart function over the next seven years.

Then, in 2003, shortly after a stressful divorce, life took me by surprise when I started suffering from an ache-like feeling of chest pains. After several visits to the hospital over a two-week period, and several cardiac catheterizations, they found no evidence of blocked arteries. During the ‘process of elimination’ testing and two hours post removal of a balloon pump test, I suffered a cardiac v-fib arrest. This resulted in emergency open-heart surgery. My main artery had erupted. No known cause was determined, but assumed a ‘complication’ from numerous cardiac catheterizations. It was said that my chest pain was stress related because they had no other explanation for my heart troubles. My previous “postpartum cardiomyopathy” was said not to be a contributing factor, according to doctors.

When did you receive your ICD? What was your initial experience like?

I received my first ICD in 2004. It was scary at first, but I knew they were putting it in because I absolutely needed it. I felt it was an insurance policy and after what I had already been through, it seemed easy. I did have an unfortunate recall on the device and had to have a second one put in, but it was a small sacrifice with a great result, since it did fire less than a year later.

What have been some of the unique physical, emotional, psychological challenges you’ve had to face since having your device implanted?

Having three young boys at the time, ages 13, 11 and 7, it was scary. They were afraid for me all the time. I felt very restricted at first. I’ve always been a healthy eater, exercised daily, and been heavily involved with the kids’ school activities and PTO. I had to quit a lot of my extra activities to relieve stress. My defibrillator did fire once about a year after I got it, but after changing my meds, it has been fine. I know it works and if I didn’t have it, I would not be here today. The hardest thing I’ve had to face is the fact that I’m not the strong, healthy mom I used to be. I just can’t ‘do it all’ anymore. I still, to this day, have a hard time asking for ‘help’.

What are some of the ways your life has changed since the ICD implant?

I’m aware that it can fire at any time. I am aware that my heart is not strong anymore, and it needs help. I don’t think my life has ‘changed’ since the ICD, it’s just guarded. I do not regret having it and it does not define me. It’s just a part of me!

What was your first Defibril-lady meeting like?

It was enlightening to know that ‘younger’ women have the same concerns as me. I was always the youngest heart patient wherever I went. These ladies understand and can relate to each other. I’m still getting to know them. Sometimes it’s hard to tell your story, because in some cases, it’s still painful to talk about.

Had you previously tried other ICD-related support groups? How are the Defibril-ladies special? What aspects of this group do you find most helpful or beneficial?

I have been to other ICD-related support groups that were uncomfortable because the people were much older than me and they would look at me like I didn’t belong. We had different issues, so it was hard to talk to get advice. I didn’t have spousal support either, which is important. The Defibril-ladies have a positive attitude, and we give each other ideas and hints on how to cope. And of course, the nurses are wonderful and always understanding.

What advice can you offer other female ICD patients?

Having a defibrillator is life changing, but can be in a positive way. We have no control over our past heart health issues, but we can control how we deal with it in the future, and how we can make our lives as normal as possible.

Is there anything else you’d like to add?

I’m happy to have found such a supportive group of women who believe life is not over because of an ICD implant. Life is continuing because of it! We can help support each other, help others that need one, and help women who have just received one realize it’s not a bad thing. It’s a necessity to live a normal life!

Marie J. Emond

Tell us a little about yourself and your medical background.

I am a retired 62 year old, married, and have two boys ages 39 and 35. My 35-year-old divorced son and his 15-year-old daughter live with us. My husband (also retired) and I are pretty much raising our granddaughter. 

When did you receive your ICD? What was your initial experience like?

I developed cardiomyopathy from a severe infection I received after getting my teeth cleaned when I was 42. It went undetected for 10 years. I was having symptoms and went from doctor to doctor. No one seemed to know what was wrong. I finally got a referral to a cardiologist when I was 52. At 55, after two catheterizations, I was told I had about six months to live and would need a pacemaker. I sought out Dr. Michael Katcher at Salem Hospital (NSMC) for the implantation. I was told he was the best; they weren’t wrong. He’s wonderful, as is the whole ICD team. He inserted an ICD (pacemaker/defib), which took eight hours.

What have been some of the unique physical, emotional, psychological challenges you’ve had to face since having your device implanted?

My recuperation went smoothly. My husband was a huge help and still is. I returned to work about two weeks later. Since I was working 70 hours a week before the ICD, I cut to 40 for about four months. I attended ICD meetings at the hospital almost right away. They were very helpful since I was pretty scared to live my life with this thing that could go off at any time. I don’t think it would have been as bad if it had only been a pacemaker, but I wasn’t expecting the defibrillator. I was afraid to climb stairs, make love, or play jump rope with my granddaughter, who was then seven years old. The groups were composed of mainly middle-aged to elderly people, and most were retired and male. I really needed a women’s group — including women who were still raising kids and working, etc. — but we didn’t have one available at the time.

I did eventually make “friends” (came to terms) with my ICD. Because I am fully paced, which means my ICD does all the work the heart should be doing, I needed to have a replacement after four and a half years. This ICD works so smoothly that I really forget it’s there. However, I am reminded when I do housework, because it sometimes gets in the way when I need to reach to my right. Having any kind of surgery makes me apprehensive, because they sometimes need to deactivate the ICD if they need to cauterize, and that uses an electrical charge. I don’t trust them (any hospital that isn’t Salem Hospital) to turn my settings back to normal. So when I can, for reassurance, I call Eileen Morris or Deb Halligan at the ICD clinic to have it interrogated to make sure everything is back to normal for me. Those girls are wonderful. They never make me feel like I’m a bother, and they are always there to help put my mind at ease. I really don’t think I could have gotten through any of this without them. We are so lucky here on the north shore to have such dedicated and knowledgeable people.

What are some of the ways your life has changed since the ICD implant?

One very profound way that my ICD changed my life is that now I have trouble driving. Other than the seat belt issue (I’m short and it hits me right on top of the ICD and really hurts when I have to brake hard), I have an unusual sense of speed. When driving, I think I’m going 70 mph, when in reality, it’s only 50 on the highway. It also happens when I walk or use the treadmill. I can’t seem to shake this feeling. It started right away when my husband took me home from the hospital — I kept telling him to slow down, and he thought I was nuts.

What was your first Defibril-lady meeting like?

I attended my first Defibril-ladies group in March of this year, and there were only three women in attendance along with Eileen. It was a small group, but I learned a lot. They talked about their lives and how they have coped with having been shocked. One woman has been shocked many times, and she spoke as if it was a normal part of living — I guess for her, it is. It gave me a sense of comfort to know that you can live a pretty normal life after being shocked, even after several times. I was looking at it as being the worst thing that could happen, but now I see it as a real lifesaver and know I should be very grateful that I have this ICD to save my life if need be. Death is the worst thing, not the shock. These women are very courageous, and I was proud to be a part of their group. I also attended the April meeting, but due to family issues, I am not able to attend meetings for now.

Is there anything else you’d like to add?

I hope we can make this group into a kind of advocacy program. When someone is told they need an ICD, they could be put in contact with one of us “Defibril-ladies” and we could help them put some of their fears to rest. I know this would have helped me; I was so sick and scared before. The doctor and the team were great, but it would have been nice to talk to someone who had gone through it. I didn’t know anyone who had and what it entailed. We could have someone there with the person on the day of their implantation to help ease the fear and take some of the burden away from the nurses who are already overworked. Some training would need to be done, but I think this could work to everyone’s advantage. I am interested in being a part of that.

Francine Rinfret-Cronin

Tell us a little about yourself and your medical background.

I am a 56 year old, married 34 years mother of four from Marblehead, Massachusetts. I work as a high school nurse in Winthrop, and am expecting my second grandson this summer. 

When did you receive your ICD? What was your initial experience like?

I am the recipient of the first AICD at Brigham and Women’s Hospital in 1987 after a cardiac arrest. It was a challenging time in my life with four young children, but with the support of family and friends, we managed.

What have been some of the unique physical, emotional, psychological challenges you’ve had to face since having your device implanted?

The frequent battery changes were initially quite disruptive due to post-op restrictions (i.e., lugging kids around, carrying laundry, etc.). With the technological improvements in battery life as well as changes in implantation placement and device size, the disruption has lessened considerably.

What are some of the ways your life has changed since the ICD implant?

I only drive on local roads, not on interstate highways, and I can’t go through the metal detectors at the airport. I am limited in the amount of weight I can pick up (no moving air conditioners or large wood logs!).

What was your first Defibril-lady meeting like? Had you previously tried other ICD-related support groups? How are the Defibril-ladies special? What aspects of this group do you find most helpful or beneficial?

Attending support groups of retirees is significantly different than meeting with active, working women. Although some of the participants have some significant medical issues, they are on the whole upbeat and positive — not the ‘woe is me’ cardiac patient. They are cognizant of what lucky buggers we are!

What I remember the most from our initial gathering was how excited some of the participants were when I shared with them the best type of razor to purchase — only a women’s group would ever broach such a subject!

What advice can you offer other female ICD patients?

Make sure to begin massaging your incision line with vitamin E cream as soon as the Steri-strips come off. Also, don’t baby yourself — think of the alternative: the dirt shower is forever!

Is there anything else you’d like to add?

I have been so blessed to be able to see my sons and daughters grow and graduate from college, marry off my eldest daughter, and experience the birth of a grandchild. Had I not received an AICD, none of this would have been possible.

Theresa Stablewski

Tell us a little about yourself and your medical background.

I was a healthy, active 60 year old who played tennis, biked, golfed, kayaked, walked, and went to the gym. I had no known heart condition. I am married with one son and daughter-in-law.

When did you receive your ICD? What was your initial experience like?

In October 2009, I went into sudden cardiac arrest due to ventricular fibrillation; 911 was called and coworkers performed CPR until the medical technicians defibrillated me twice. After arriving at the emergency room at North Shore Medical Center and many days of cardiac testing, my cardiologist recommended an ICD. The surgery went well and my scar is minor. North Shore Medical Center has a wonderful support system for people with ICDs (quarterly meetings and an annual dinner).  

What have been some of the unique physical, emotional, psychological challenges you’ve had to face since having your device implanted?

I was a candidate for an ICD because of my cardiac arrest even though the doctors could not find anything wrong with my heart. Physically, it took a month or two to be comfortable with the ICD. Emotionally, it was difficult in the beginning, as you don’t want to do anything to cause your ICD to go off. I had lots of questions as to when I could resume normal physical activity. The regular support group did help answer some of my questions.

What are some of the ways your life has changed since the ICD implant?

I live life to the fullest and am grateful for each day. I vocalize my feelings to my family more. I cram a lot of activities into every day. I don’t waste a moment.

What was your first Defibril-lady meeting like?

It was very comfortable. The group talked about issues common to women with an ICD that you wouldn’t bring up in a traditional ICD support group. The ladies in the group are close to my age and they are active. Each wants to live their life to the fullest.

Had you previously tried other ICD-related support groups? How are the Defibril-ladies special? What aspects of this group do you find most helpful or beneficial?

I still continue to attend the regular ICD meetings to offer support to the new patients, because I want to give back. However, you never know who will come to the regular meetings. When I go to the Defibril-ladies meetings, I know the ladies. We are all becoming friends. It generally is a smaller group, and the conversation is where we decide to take it.

It will be most beneficial to me to meet with the Defibril-ladies when an issue comes up. Right now I go to learn from their experiences and see how everyone is doing. 

What advice can you offer other female ICD patients?

If your doctor suggests getting an ICD, you should do it. The device has become a part of me and I feel totally protected. I go to sleep not worrying if I will wake up. There is no downside, except when you go to the airport.

Is there anything else you’d like to add?

The North Shore Medical Center at Salem Hospital has great doctors and support staff in place who are always available to answer your questions. I believe it is not necessary to go to a Boston hospital for quality care.

Julie Costa

Tell us about yourself and your medical background. When did you receive your ICD?

When I was 31 years old, out of the blue, I had a cardiac arrest sitting at my kitchen table. It was July 13, 1994. Luckily for me, I happened to be with my sister, an emergency room nurse, and her husband, a paramedic, so they leaped into action and began CPR and saved my life. My distraught husband of six years and my dad called 911 and were on hand to take care of my daughter, who was just over two years old at the time.

When the ambulance arrived, I was shocked with paddles on the kitchen floor and slowly came to, but I was still quite out of it and very confused. I was taken by ambulance to Salem Hospital’s emergency room and admitted. The next day, cardiologists did a cardiac catheterization to look for structural damage to my heart. Unfortunately, though, I went into ventricular fibrillation during the procedure and they had to shock me again in order for me to regain sinus rhythm. Given my condition, at that time, in 1994, Salem Hospital could not handle my case, so I was transferred to Beth Israel, which is also where my sister worked. There, I met with electrophysiologists — one of them being Dr. Mark Josephson — and was told that I would have to have an ICD implanted, and that ablation and/or medication were not options. At the same time, it was discovered that I was in the very early stages of pregnancy when I had the original cardiac arrest, so that became a whole other issue in managing my care and implanting the device, and lengthened my hospital stay. In the end, the device was implanted, and when I left the hospital, I was told that tests indicated it was likely that I would miscarry. About a week after leaving the hospital and going home, I did have a miscarriage and had to return to the hospital during that time. It was very frightening going through that so shortly after having had such a life-altering experience. The entire experience, on all fronts, was very emotional and certainly required me and my whole family to work through many changes and adjustments, and this was quite challenging.   

Tell us more about your initial experience.

One of the really difficult things in the beginning was not only feeling concern for myself and my situation, but also for my family members who were having such a hard time worrying about me. My sister, the nurse, cried when they said I had to have the defibrillator. My husband had felt so helpless witnessing the event and was now trying to deal with our daughter day to day while I was in the hospital, and was seeking help so he could be with me but still take care of her. My mother had been in the hospital having some tests when I had the arrest, and when they told her, she fell apart and took herself out of the hospital to help me. In my condition, I couldn’t do what I would normally do to help my family, so that was tough.

I found the EP studies to be the worst, as you are awake and your heart is stimulated to find out how much energy is needed to shock you out of arrhythmia. This was not only terrifying from a physical standpoint, but from an emotional one as well, especially after my arrest at home and then again on the table during the cardiac cath.

My first device was placed in my abdominal area with three leads to my heart. In the days following implantation, I experienced extreme pain, evidently more than the typical patient, and this required me to be seen by a team of specialists who helped to get my pain under control. This first device was part of a study, so there was a specific protocol with testing at one-month and one-year intervals. I also found these tests to be very difficult, as they simulated the EP studies and checked the functioning of the device. Therefore, it was very hard to gear up to undergo these procedures again and again. 

Another challenge was driving. When I got home, there were recuperation issues and figuring out when I would be ready to go back to work and how much to push myself versus how much to take it easy. I am a special education teacher, so I had to consider what would be the impact to my ability to perform my job. What did administrators, other teachers, parents, and students know, and what would they be thinking? Then there was the issue of getting to work and back, as I lived too far away to drive, considering my new circumstances, and how to get my daughter to and from daycare. 

In the months that followed, there were issues of dealing with not only my first shock (which occurred when I was speaking at a public meeting at the school), but also the additional shocks that followed over the next few years. These shocks were real and not the ones induced with testing, which meant that I really did have this condition and it was not just a one-time incident. These events made me feel damaged and that I could not be cured, and that was hard to wrap my brain around, because as a young person, you always feel you can be cured. Even though I had the protection of the device and was happy it worked, each shock made me face my mortality, at such a young age, and I experienced the mixed feelings of being both cursed and blessed all at once. With my first device, which I had for four and a half years, I must have had about 15 or more shocks, each time bringing new traumas and challenges. With such a history, it would take me pages and pages to highlight all the challenges and psychological hurdles I worked to get over, but there were many. However, my family, particularly my husband, was a great help to me.   

What have been some of the unique challenges you’ve had to face since having your device implanted?

One of the biggest challenges that I faced during this time was related to choosing or not choosing to expand my family. My husband and I had one child who was almost two and half years old at the time of my original arrest, and we had always wanted to have at least one more child. Then, finding out that I was pregnant when I had that first arrest, and that it was also twins, and then miscarrying, was certainly something to deal with. Luckily, it was very early when it happened, as I didn’t even know it, and that helped me to say that it was probably for the best, given everything I was dealing with having the arrest and then having the ICD implanted.

Over the next three and a half years after the implantation, my husband and I (and our families too) struggled with the idea of whether or not we could or should try to have another baby, something which I really wanted but my husband was against, as he did not want to lose me in the process. So I worked on accepting the idea that we were done having more children and that this was for the best for the sake of my marriage and my health, but then I became pregnant unexpectedly. This led to a whole new set of discussions over proceeding with the pregnancy, which was really something I could not consider, based on my faith and values, but given my situation, and my husband’s feelings, it was something I was forced to consider or reconsider. We were tested in new ways; emotionally, spiritually, and medically. There was very little literature or case studies at all of women who had had a pregnancy with an ICD. Even with the support of my new doctor, Dr. Laurence Epstein, and a high-risk OB/GYN, the lack of similar previous cases in this area was a concern, and there was really no one I could talk to who could fully comprehend the emotional and psychological struggles I was going through. I did not tell others outside my family that I was pregnant until I was 5–6 months along and was showing. I was managing a lot internally without many outlets or supports, so it was not an easy time.

During the pregnancy, I endured three ICD shocks. In my now 18-year history of having an ICD, it was one of these incidents that was then and still remains the most significant shock episode I have ever had. I had a two-shock episode in which I passed out on the street in Boston while walking by myself while five months pregnant. The stressors that came from this episode were multiple, including the “I told you so” feelings, worries that I could have done something to have prevented it from happening, and feelings of worry over what would be the impact to the baby developing inside me. Toward the last couple of months came the worries of how to manage the childbirth with the defibrillator. What medications should I have? How would I handle the stress, heart rate changes, and pain? What type of monitoring did I need? What if I had a shock during the birth, etc.? Because of this, my experience was much more monitored and the medical community took a big interest in this unique situation. But the best news was that, after being induced and having an epidural, while things progressed slowly, they went extremely well, and went off without a hitch, really. The end result was that we welcomed a little baby boy into the world! I considered him my miracle baby and was so happy.

Despite all I had gone through, with the support of my doctors, I was able to add one small statistic to the case studies of women who had a pregnancy with a defibrillator implanted. Coming through this pregnancy positively, as a woman with a defibrillator, meant that I was still living my life and not letting this thing get the best of me and dictate my life — that was a great feeling! Living with an ICD, and especially getting one as a younger person, it is always the goal to get back to normal and not let this circumstance limit you or debilitate you further.

Not too long after the birth of my son, I faced a new challenge: my ICD battery was depleted and I had to have my device replaced. I had my second device implanted when my new son was only five months old, and I was still nursing him. The second device was somewhat complicated because they were moving it to my chest area, and this required leads to be removed and more to be replaced and reconfigured. It was scary, but I powered on with the support of Dr. Epstein. I got through it, but once I returned home to the baby I needed help to care for him because I couldn’t lift him during the recuperation period. I was lucky to have great family and friends to help, but I did not have anyone who had a defibrillator to talk to through any of it, so I did feel a bit like an island at times.

I have had my current (third) device for about five and half years. I still have shocks, but they are few and far between, so it’s much easier to manage. As much as things have been difficult, I have managed to not let it define me and prevent me from living my life, and I intend to continue with that. While it hasn’t always been easy, I am thankful for the many times the device has saved my life with a lifesaving shock when needed, so that is a blessing that I have had these past 18 years of living.

What are some of the ways your life has changed since the ICD implant?

Driving is the biggest one — I do drive, but mostly only on local roads, as I was advised that with my condition, driving long distances and on highways was not recommended. This means I am dependent on others for driving to a variety of things including: doctor appointments (or support group meetings) in Boston or other farther locations, some family/friend gatherings, events for my kids, including sports, concerts, college visits to see my daughter, some funerals that may be further away, going to the airport, etc. So that requires some planning…or means sometimes I cannot do the things I want to. It is a constant thought in the back of my mind that I must work around because I have an ICD and VF.

Beyond the issue of driving, I am probably a little hypervigilant in self-checking my condition if I’m dizzy, nauseous, etc. I do have a shock plan written out that I have given to the school nurse at my job. In addition, I always struggle with whom, if anyone, I should tell about my condition and when. It is a very private thing on the one hand, but you do need people in a support network around you who are aware of your situation, so that has been something I try to balance.   

What was your first Defibril-lady meeting like?

I continue to be seen in Boston and not in Salem. Given my history, I am comfortable with my care and want to stay there for now. However, it is not always easy to get to the support group meetings offered in Boston. I had always wanted a group that was closer to home and that dealt with younger people; a focus on women would have been a bonus. It had been discussed with my nurses at times over the years, but nothing ever materialized. Through my support groups in Boston, I discovered Dr. Sam Sears and found him to be very beneficial and so specialized to ICD patients. I had received a pamphlet in the mail from NSMC with a feature article on a defibrillator patient from Salem, and it mentioned that they had a support group. My nurse, Julie Shea, had also told me that there was a group in Salem, so I went on their website and requested more information. I later received a postcard about an event in which Sam Sears was speaking in Salem. When I went, Eileen Morris came over to me and asked if I would like to stay afterward to be part of a new group that was forming of younger women with ICDs, and I was thrilled. I agreed to stay, and after Sam’s talk, he stayed and spoke with us too. At this meeting, I met about six women and got a brief overview of their stories. I was struck this first night by a woman who was very new to having an ICD, and was taken back to those difficult early days I experienced, and wanted to help her. I felt like I could give something to this group and I could also get something in return, so I knew I wanted to be a part of it. Emails were exchanged, and about nine months later, another meeting was held — it was there that I began to get to know the women better. I discovered someone even more veteran than me, and I reconnected with an old friend who I had met years ago doing cardiac rehab, who also now had an ICD. I felt that I really belonged in this group, especially because of our shared experiences being women and the perspective that it gives us. I look forward to more meetings and where the group will lead. 

Had you previously tried other ICD-related support groups? How are the Defibril-ladies special? What aspects of this group do you find most helpful or beneficial?

Yes, I have been a part of the Longwood Medical Area ICD Support Group for many years. They are also a nice group that does great work, but they are a general group, and the members in that group are often older and have a higher percentage of males.

The Defibril-ladies are more specialized and can help me with issues that are more geared to women as well as to younger patients. This group is also local, so I can be independent in getting myself there, given my driving limitations.

Currently this ladies group is small and in its beginning stages, so we will see how it develops, but it is has a great background in the nurses that support the group, Deb Halligan and Eileen Morris, and they have some great ideas of where to take it. The best benefits for me are just talking to other women in a similar age bracket who have both similar and different experiences. Being able to lend an empathetic ear to others or to have someone to share these unique issues with is tremendous — giving and receiving support are helpful to your ongoing coping skills. Another great thing is that we have folks in all stages of the experience of having an ICD — newbies, mid range, and veterans like me, so that adds to the richness of our group. For me, I would like to be able to use our group to help other women, especially those who are very new to ICDs, as that is the most difficult time and the time when I wished I had more support, both in general, but especially from other women. 

What advice can you offer other female ICD patients?

  • Seek advice from doctors, nurses, and other ICD patients, especially female patients;
  • Join the Defibril-ladies support group, or any support group available to you; 
  • If you are not near a Defibril-ladies group, then see if you can start your own; 
  • Seek out the work of Samuel F. Sears, PhD, Professor, East Carolina University, Departments of Psychology and Cardiovascular Sciences, Director of Health Psychology. If he is ever speaking near where you are, definitely go and see him speak in person. He is a great resource in dealing with the unique issues surrounding having an ICD, including psychological and emotional coping and having a positive focus to achieve a wonderful quality of life. 
  • Nurture your own wellness with whatever works for you: yoga, meditation, exercise, good nutrition, massage, family, friends, a cause, etc. 
  • Live your life as much as possible as the way you would pre-defibrillator.

Lisa B. Cammarata

Tell us a little about yourself and your medical background.

I am a 50-year-old woman from Salem, Massachusetts who, for the most part, had not had any medical issues for most of my life. My road to having an ICD started in April 2009 when I fainted at 6:00AM in my kitchen after making coffee. Once I felt better, I went to work and tried to forget that I nearly hit the floor earlier that day.  The next day I reluctantly went to my doctor, who ran some tests on me and referred me to a cardiologist. A cardiologist? I thought to myself at the time, My heart is fine, there is nothing wrong with me. I don’t need to see a cardiologist! One test led to more, and after an EKG, a cardiac ultrasound, a Holter monitor, a stress test, a three-week monitor, and a cardiac MRI, my two amazingly dedicated cardiologists, Dr. David Kahn and Dr. Michael Katcher, determined I had arrythmogenic right ventricular dysplasia (ARVD). When I heard that, I cried. I was in complete denial. Sometimes I think I still am. 

When did you receive your ICD? What was your initial experience like?

I received my ICD on November 23, 2009. I was terrified — I thought I was never going to wake up. Even though Dr. Katcher told me he would have me hooked up to external defibrillators, I was sure that when they tested the ICD, it would not work.

Once the ICD was implanted and tested (yes, it worked!), and I woke up, I was in awe of all of the monitors in the OR keeping an eye on me, along with all of the members of Dr. Katcher’s team. I could see images of me on the monitors; in one I could actually see the ICD with the lead screwed into my heart — I remember touching the screen saying, Wow, look, that’s me!  When I was wheeled out of the OR, I saw my sister-in-law and started to cry, saying, “It’s all over, right?” She assured me it was, and I knew I was going to be okay; it was all downhill from there.

What have been some of the unique physical, emotional, psychological challenges you’ve had to face since having your device implanted?

When I was first diagnosed with ARVD, I wanted to blame myself, of course — what did I do to cause this? Once I learned ARVD is a condition in which fat takes over the heart muscle, I was able to come to terms with it and even find some humor in it, saying to myself, I’ve dealt with my weight all my life, and now it’s in my heart?! Even diet and exercise will never get rid of it!

I am not sure I have specific challenges. I don’t view having an ICD negatively; I feel fortunate I have an ICD that is constantly protecting me from a life-threatening disease. However, I was concerned about how things might be if I was ever in a new relationship.  My marriage was ending as my medical ordeal was starting, so I was of course nervous to ever be in a situation to tell a man about my ICD. Interestingly enough, when I told the man I am now dating about my ICD, his reaction was one of compassion and kindness. One of the first things he asked me was why I was not wearing a medical alert bracelet! (I have one now.)

Finally, I was not prepared for the outpouring of kindness and care from my friends, family, and medical providers once I had the ICD put in. Still to this day, I hope I have sufficiently shown them the appreciation I have for them.

What are some of the ways your life has changed since the ICD implant?

I am much more aware of my health, especially my heart’s health, as the ICD is there, but I still have to keep an eye on the other risks, just like anyone else. I cannot control genetics, but I can control other risk factors such as cholesterol, diet, and exercise.

I do exercise regularly, and on the advice of my doctor, I have not eaten red meat since April 2009; overall, I do try to stay in shape and watch what I eat. Most importantly, I am aware of the absolute need to keep myself and my heart healthy.

I have also decided to not let my ICD rule me. I have it, and I never really think about it, only when I see the light on the monitor near my bed do I remember I have it. My scar is nearly invisible, and even if it wasn’t, I would not care a bit.

What was your first Defibril-lady meeting like?

Since it was kind of my idea to get a group together (along with Eileen) of younger active women with similar concerns about life with an ICD, I was not sure what to expect at our first meeting, and what others would expect from us.

We introduced ourselves, told abbreviated versions of our stories, compared underarm razors, and chatted about our lives with ICDs. There was some negativity, some indications that some allow the ICD and their conditions to rule their everyday lives.

I was happy we agreed to meet again! We continue to meet, and are looking at establishing goals, and really getting ourselves out there.

Had you previously tried other ICD-related support groups?

When I was first told I needed an ICD, I went to a support group at NSMC. It was a nice group; however, at the time I was still in my denial phase and swore I would not have an ICD put in, nor did I need it, and nor did I need a group! Now I have an ICD, I know I need my ICD, and I realize the benefits of a support group!

I also realized that there had to be other women like me who did not want their ICD to control them, and instead wanted to continue leading active lives.

In no way do I mean to criticize the other group — I just realized my concerns that second and third time were very different than some of those in attendance.

What advice can you offer other female ICD patients?

Ask questions over and over, not because they are not being answered, but because the ICD world and the whole heart functioning is so confusing. Just understanding the vocabulary is enough to make you crazy — afib, vtach, ejection fraction, the electrical system, plumbing, the ventricles, and even ARVD — all make it so hard to understand. I found that it was much easier for me to accept all of this once I fully understood what condition I had that warranted my having the ICD put in.

Is there anything else you’d like to add?

I am glad our group has grown. I thank Eileen and Deb for allowing me to voice my opinion when I did. I am also pleased to have met some very special women, and have gotten to know my providers in a better and stronger way.

I respect these women. We all have a story to tell, and we all have different concerns, but we all have something in common and can help each other along the way. It’s the day-to-day stuff after the device is implanted that you need the group for, and that is why the Defibril-ladies exist.

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