Heartfelt Cardiac Projects: Update With Holly Morrell

In February 2010 we published a feature interview with Holly Morrell, founder and executive director of Heartfelt Cardiac Projects, a nonprofit organization that offers comprehensive cardiac screenings to prevent sudden cardiac death. The mission behind Heartfelt Cardiac Projects is a personal one: out of 11 family members, nine had hypertrophic cardiomyopathy (HCM), and out of the nine, six have passed away and three are living with interventional methods. In this article we get an update on Holly, who on July 16, 2012, underwent a laser lead extraction procedure that ended up requiring emergency open-heart surgery.  

How are you feeling these days?

I actually just got home from a physical therapy session, and it felt great! There was a lot of manual manipulation of my arms and shoulder joints, and some ultrasound therapy, and measurements of my range of motion were taken. 

Give us some background on what led to this recent surgery. 

In late May or early June, I started experiencing what I thought was my heart racing. I felt it a few times but knowing that I had my defibrillator, I wasn’t all that concerned about it. However, it seemed to be getting progressively worse, and began to wake me up in the middle of the night. I contacted my EP, Dr. Suzanne A. Feigofsky, and she asked me to remotely transmit my ICD data; she had expressed to me that she was worried that I may have been in atrial fibrillation. Shortly afterward I received a call from her, and she told me it seemed as though there was some sort of impedance and perhaps I had fractured my atrial lead. Unfortunately, since I had also already fractured one of my ventricular leads that had since been recalled by the manufacturer, I knew this was really bad news. 

From there, I talked with a couple of doctors about my options. The thing is, it’s sort of a double-edged sword being involved in this industry and knowing a lot of cardiologists and electrophysiologists, because although I immediately got tremendous support and advice, it was also overwhelming to have such a plethora of information. I immediately went into research mode and tried to prepare myself for what I knew was in store for me. One spectacular doctor, Dr. John Rogers from Scripps Green Hospital in San Diego, reached out to me and suggested I visit a surgeon named Dr. Raymond Schaerf at Providence Saint Joseph Medical Center in Burbank. He told me that if it were him or his family that needed this surgery, that is where he would go to or send them, and that meant a lot to me. It seemed as though the other EPs that are considered “gurus” or otherwise very skilled at lead extraction were all located out of state, which I still considered, but I felt that logistically it made more sense for me to visit Dr. Schaerf since he was far more local. 

Was the plan to go in for the lead extraction or for a device replacement?

I was hoping and assuming that it would all be done at the same time. I knew I had some battery left for my device, but I’ve had so many surgeries that I was hoping it could all be done at once. When I first went to meet Dr. Schaerf, I was very frightened, but the first thing that struck me was that the feel of his office was so family friendly — everyone was so welcoming and warm. When I met Dr. Schaerf, he was soft spoken and calm, but he was also very candid with me, almost to the point that when I shared my conversation with family or friends, they would ask “why would he scare you like that?” However, I was so appreciative, because as both a patient and a patient advocate doing the work that I do, I was tired of doctors who had sugarcoated the information to me before previous surgeries, and then I would wake up from a surgery with a horrible outcome and it would be a total shock. So although Dr. Schaerf’s candor was a bit scary, I appreciated it and it made me very confident and comfortable with him as both a person and a potential surgeon. Then I asked him one very crucial question, which I believe in hindsight saved my life: I asked him what would happen if I was with another EP doctor and something went terribly wrong. He explained to me that they would have to call in an emergency backup team if you’re not already in the OR, or you have to be rushed to the OR, and that takes valuable time. So I knew right then and there that he was going to be the doctor that I was going to have do my lead extraction. 

I asked Dr. Schaerf if he felt comfortable giving me a little bit of time to prepare emotionally and physically for surgery, as well as to complete some screenings already on the calendar for Heartfelt Cardiac Projects. Honestly, I think that lead extraction is the greatest fear that an ICD patient has. Also, considering that almost everything that I had experienced up to that point had had a negative outcome — including the first device implantation with the device being improperly placed as well as the manufacturer recalls — I had no level of confidence that this was going to be smooth sailing for me. I just felt like I needed to get my screenings done and prepare. I scheduled my surgery out six weeks, and that date was July 16. 

Tell us about July 16, 2012, and the surgery that led to your emergency open-heart surgery. What can you tell us about that day? 

I had completed all my pre-op preparations the week before, and then the night before the surgery I stayed at a hotel closer to the hospital, knowing that I had to arrive so early in the morning. That morning was such a whirlwind, and everything went by so quickly. The first thing I remember after surgery was Dr. Schaerf kissing my forehead and whispering in my ear “Remember when we were talking about backup? There was no time for backup. I’m glad you’re here.” Then he told me in technical terms that they had to cut my sternum; my friends said that I got a little teary and then went back to sleep. After waking up another time and knowing what had taken place, I was surrounded by my friends and family, even though I was in the ICU. The hospital, including the ICU, nurses and doctors at St. Joseph — were amazing, and I couldn’t have asked for anything more. 

It was really hard for me, and I wasn’t ready for a long time to hear what happened during the surgery. However, I did spend about an hour with Dr. Schaerf about a month ago. A film crew was working on a documentary film about my life and work; they spent time with Dr. Schaerf talking on camera about the whole experience. Now that I am in a much better place and more advanced in my recovery — feeling good both physically and emotionally — I listened to him tell me in graphic detail everything that happened. According to my layman’s interpretation, Dr. Schaerf said that during the lead extraction, he saw my blood pressure begin to plummet, and the monitors revealed a lot of fluid in my chest cavity. He then inserted a chest tube and blood came gushing out, so he knew I was bleeding out, and had to make a split decision to open me up. What happened was apparently as he was trying to extract one of the leads, it began to coil up and actually ruptured my vein, located deep underneath my left collarbone. He later told me that he felt only 90 seconds separated me from life and death. I don’t think 90 seconds would have allowed for a backup team or any other decision, so now in hindsight, I think everything fell into place the way it needed to. After Dr. Schaerf got all the leads out, he said there was a lot of damage on my left side as well as scar tissue, so he chose to remove my defibrillator from the left side and implant the new device on the right side. Thus, I was not only cut up the middle, but on the left and right sides as well. So now my device is on the right side, and I have a new generator and two new leads. 

How long were you in the hospital for? What was your recovery like? 

Actually, I was only in the hospital for a total of seven days. The recovery was treacherous. The first thing was that the pain was unbelievable, which kind of caught me off guard. I had what felt like nerve pain and pain in the incisions, as well as all the emotional stuff along with it, including the adjustment to looking at it. It was hard. Fortunately, for seven and a half weeks, my amazing friends and family did not leave me alone for even an hour — they were with me nonstop. 

I just talked with Dr. Feigofsky about this — I don’t know how many were really aware of how challenging my recovery was, because in general it was indicated to me that after six weeks, your bones have fused, and you’re supposed to be off your pain medications and move on. I know my EP was very concerned about the possibility of depression, and from what I hear, it’s a concern for open-heart surgery patients to experience some sort of a depression. However, I can tell you now that I am on the other side of it, that it was not depression — it was 100% pain! After my surgery, I had to see a pain specialist right away. Unfortunately the first pain specialist wasn’t a good match — they weren’t very available and I found myself trying to self medicate. I was on pain patches and oral narcotics, but the pain patches were very expensive and I didn’t think they were working. Since I couldn’t get in to see the doctor and he wasn’t returning phone calls, I ended up taking off the patch, which was a huge mistake. So I went through withdrawals, the pain came back, and it was a big setback. It was awful — the pain was unmerciful. With the help of some other friends and doctors, I was able to see another pain specialist, who immediately took over my care and got me back on track, and I’m forever grateful. I started going to physical therapy and am getting back the use of my arms, but for probably five and a half months, I didn’t have any tremendous quality of life in my opinion. The suffering was really bad, and I think it was difficult for a lot of people to understand, even my fellow heart patients and other open heart patients that I know. I still stand by the fact that you have to be your own best advocate and it’s really important for the doctors to hear you. What I was trying to tell everybody was that compared to my first ICD surgery and how bad that pain was, I have also had four surgeries in between the first and most recent surgeries, and I had the normal six-week recovery time after those. 

The lesson to be learned here is that pain manifests itself very differently in people. For example, my cousin had an LVAD, she was transplanted, yet she told me she never had a day of pain. My dad had a heart transplant years back and I saw him afterwards — he did not go through what I did. I don’t know if it was because it was an emergency situation or all the scar tissue, but I really feel compelled to communicate how important it is for doctors to really assess each situation by the individual and their lifestyle that they’re accustomed to, as well as their surgical and recovery history. 

Tell us more about your physical rehabilitation. 

It was hard. I think I walked around with a pillow for a long time, you’re scared to cough or sneeze, and arm movement or any upper body movement was difficult. I believe I walked the second day in the hospital, and I walked at home in Laguna. My lower body was fine — my legs were strong and I could walk these steep hills and I was walking a mile within about two weeks. However, my upper body was not cooperating, and I couldn’t shower or wash my own hair or even get dressed by myself. Sleeping was also a huge problem — I had to lay flat on my back, not being able to move from side to side or on my stomach, for about four or five months. 

Describe your use of acupuncture. 

Actually, my pain specialist demanded it. I think that it was difficult to measure outcomes whether it was from acupuncture, drug therapy, physical therapy, time, or healing, because there was so much going on at the time and I was so desperate to get out of pain that I was trying anything and everything. So it was really hard to measure what was working for me. However, the acupuncture was a relaxing and pleasant experience. I was afraid of it at first, especially because of the nerve pain I was experiencing, but I am a big fan of my acupuncturist.  

What lifestyle changes have you had to make? 

I think that has probably been the biggest thing I’m dealing with now as I get better. Believe me, I’m so appreciative and grateful that I’m now on the other side of this. However, there was always a question about whether I’d be able to return to playing tennis, a passion of mine. When I went in for my post-op appointment, I was told that I should never do anything with repetitive arm movement again, so that basically meant no more tennis. Since I’m a self-proclaimed tennis addict, it’s been really difficult to adjust. After my difficult first ICD surgery in 2002, suffering for months and losing the use of my left arm, when the device was finally moved into a more proper place and the pain was relieved, I walked past some tennis courts near where I lived, and I thought to myself “I’ve never played tennis — if I am ever able to be active again, I’m going to play.” That is when I started playing tennis, so it’s almost a cruel irony because I got through that disastrous ICD-related event and found a new love, and have played tennis practically every day since. To go through another ICD nightmare and have it taken away is a cruel twist of fate. Right now I wouldn’t be able to play tennis because I’m still getting stronger — I’m just getting back into my yoga practice and starting to work out with a personal trainer, and I’ve been biking. But as I keep getting better, it’s going to be more difficult not to play. It’s not just tennis, but what it represents to me — it’s something that I took up after I made it through a really rough physical challenge. There were a lot of things linked to it — heart related, being a patient advocate, being able to show people that you can live a happy and active life with heart disease and even a defibrillator. I know there is a lot of controversy surrounding hypertrophic cardiomyopathy patients and ICD patients on whether they should remain active in sports or activities; however, I made a personal choice that I was going to live the lifestyle that I wanted. But now the potential consequence seems to be more surgery, and I can’t do it. 

What has it been like having the ICD this time? Have you had any complications?

I haven’t. I got it checked last week by Dr. Feigofsky and everything is fine — she said that Dr. Schaerf did a magnificent job with the lead placement. The difference now is that my ICD sticks out a little more, and I’ve never dealt with that before, so that’s an adjustment. Other than that, it’s fine, although dealing with the scars is also challenging. 

March 18th was your eight-month anniversary of the surgery. Any plans yet for your one-year anniversary?

You know, I’m not sure — I haven’t made it that far in my mind yet, but I think it will be a special day for me forever. Dr. Feigofsky has told me a couple of times that after extensively speaking with Dr. Schaerf, she’s never heard of any patient surviving this particular consequence that occurred with me. Lead extraction is serious business, and I think most ICD patients would tell you that it’s the most frightening thing to consider or anticipate. However, I’m so appreciative and eternally grateful to the nurses and staff and my personal doctors. I wish everyone could have the opportunity that I had, and it breaks my heart (no pun intended!) that they might not. 

Switching gears, what is new with Heartfelt Cardiac Projects?

That was another beautiful thing to come from this. I had anticipated a nine-week recovery with limited movement of my arms, and I was worried enough about that. But some amazing volunteers for Heartfelt Cardiac Projects stepped up to the plate and asked to help me continue screening during my recovery time. They learned the process and have gotten into a stronger role as screening coordinators, so when we found out my recovery was going to be a lot longer, they continued to screen without me, and that’s the first time that has happened in 14 years! It was a great confidence builder, but I had to learn two things: to surrender and give up some control. However, the benefit has been amazing, because these volunteers fell in love with the work and have decided to continue on with me, so we have a stronger, larger Heartfelt team now and we’re screening even more people. Another really beautiful moment for me happened on December 15th, 2012; it was the first screening that I attended all day, and four kids whose lives we saved came to that screening with their families to visit me. It was unbelievable and amazing. 

Do you have a goal number of screenings you’d like to do this year?

It’s already pretty much surpassed. We have so many screenings on the calendar as well as so many screenings inquiries. My biggest wish or goal is to be able to secure additional support and funding from the medical community — that would help us continue our work because I think we probably saved six or seven lives last year. They were found to have potentially life-threatening heart conditions, have gone through everything from ablation to open heart surgery, and are now back to playing sports. My hope is that people better understand the community service that we’re providing and can help us with support from the medical community, such as doctors that want to get involved. We also need funding for some much-needed equipment, so we can continue to screen and provide early detection to as many people as possible. 

How can people get involved with or donate to Heartfelt Cardiac Projects?

Everything can be done through our website (www.heartfeltcardiacprojects.org). This includes information on the equipment that we need, such as the cardiac ultrasound equipment, the echocardiograms, and EKGs. They can also email me at holly@heartfeltcardiacprojects.org or info@heartfeltcardiacprojects.org. Cardiologists or EPs that would be willing to support by reading and interpreting screening results, or if they’re interested in the data collection or research possibilities, can also contact me. 

Why do you continue to do the work that you do?

I probably shared this the last time, but I do believe that my life has been spared again to do the work. I know that there is a lot of controversy surrounding community-based cardiac screenings, but all the debate is almost moot in my eyes because we’re saving lives. No one can argue the fact that this work is needed and that it’s making an enormous difference and saving lives, so I have dedicated my life and I’m going to continue to screen as long as I believe in my heart that it’s the right thing to do. 

Is there anything else you’d like to add?

To be truthful, I don’t believe that my mind has really wrapped around this last ordeal. I do believe that the suffering is over, and I’m feeling immense gratitude and appreciation for as well as love and support from my amazing friends and family, the medical community, and my own personal doctors. So I think everything is just sinking in right now, and I’m in a transitional period and a state of adjustment, and my heart is just filled with so much gratitude. I really want to express how appreciative I am for my life, I’m appreciative to have been given the gift of finding my purpose in life, which is through my nonprofit Heartfelt Cardiac Projects. I also appreciate being able to share my story to help raise awareness in the medical community as well. Maybe a doctor that is thinking about doing a lead extraction on a patient and is not quite sure about it — they may be touched by my story and give it a little more thought and make sure that they’ve got all the potential bases covered if something goes wrong. Hopefully they will think about this from a more careful point of view. 

See previous interview with Holly Morrell in EP Lab Digest^®.