Surgery and Devices
Most of the women that we spoke to had experienced surgeries to repair damaged hearts and to implant devices into their hearts to support heart function. Special devices, such as pacemakers, implantable cardioverter defibrillators (ICDs), ventricle assist device (VAD), and stents, can be implanted into the heart to help it pump and function better when medications, diet and activity changes alone are not able to maintain proper heart function. Heart transplant was considered for some participants when the devices and medications could no longer maintain adequate heart function [see our Heart Transplant page].
Surgeries
Many of the women that we spoke to described experiencing frequent surgeries. Some were sudden and unexpected as a result of an emergency blockage, heart attack or cardiac arrest. Bypass surgery, for instance, is a major procedure where a blood vessel (often taken from the patient’s leg) is used to create blood flow around a blocked artery in an emergency. Events requiring this type of surgery often happen so quickly that women may not understand what has happened to them or the implications.
Ginette underwent an emergency triple bypass surgery in the US and woke up confused, needing answers.
Transcript
As of 11 o’clock the night before – that was the last of my memory. I woke up on Wednesday afternoon and I had tubes popping out of everywhere. I was hurting, I was – my chest was out to here. I had a big scar that was all swollen […]
Some surgical procedures are considered minimally invasive such as those to insert stents into heart vessels to keep blood flowing. They can often be completed quickly, sometimes without an overnight hospital admission or general anesthetic. At the other end of the spectrum, some open-heart surgeries to repair, stabilize or even transplant a damaged heart, may mean lengthy hospital stays and prolonged rehabilitation times but are usually anticipated and planned for, long in advance.
Lori was born with heart defects and lived with HF for 9 years before her first open heart surgery. She went on to have 3 open heart surgeries and had 8 defibrillators implanted by the time she was 50 years old.
Lori describes her surgical journey.
Transcript
Well, my LV [left ventricular] function ended up becoming a grade four and they thought that they were going to have to put me directly on the transplant list. When I felt a little better, they did cardiovert me and it got me out of the heart failure and then […]
Stents and Valves
Living with heart failure may also mean living with simple and/or more technologically complex devices to keep the heart pumping and blood flowing. Many women may have stents (small tubes made of various materials such as mesh, silicone or metal) implanted to help keep their arteries open. This can be done using a process called angioplasty, a less invasive surgical procedure using a catheter to guide and insert the stent. Anne1 talks about recovering from a heart attack in the ICU, discovering: “I had had two bare metal stents inserted into two of my coronary arteries – they hooked me up to a device which forced air at pressure into my lungs to drive out the accumulated fluid.”
This process helped her make a good recovery with no fluid retention by the time she was discharged. Implanting mitral valve clips also uses minimally invasive techniques to clip together 2 parts of the heart valve to improve its ability to pump blood.
Sharon2 has noticed a significant improvement in her wellbeing after having her mitral valve repaired.
Transcript
My mitral valve was leaking 50% of the oxygenated blood from the upper chamber. And so I was referred for a mitral clip process. Two mitral valve clips were successfully inserted. A month later, tested – only a trace leakage. I feel like a dodged a bullet and I’m extraordinary […]
While some heart valve issues can be corrected with minimally invasive techniques, other require more invasive procedures such as open-heart surgery. Lori and Jenny both had their mitral valves replaced.
Lori eventually needed a valve replacement after two repairs.
Transcript
They were giving me my treatments and they found out at that point in time, my mitral valve needed now to be replaced because my other – my other two surgeries, they were only repaired. So in 2003, at 30 I went in and had my third open heart surgery.
Jenny's mitral valve replacement worked so well she no longer needed a transplant.
Transcript
So I had open heart surgery on March 1st of this year to replace my mitral valve. It was either mitral valve or heart lung transplant. So I was like ‘I’m good with trying the valve first’. It did so well, that it was supposed to go ‘valve replacement, recover […]
Implanting Pacemakers, ICDs, and Other Devices
Women interviewed with heart failure commonly spoke about having devices implanted to help their heart function. Some women were offered devices while still recovering from other procedures and did not seem fully aware of the type of device they had implanted. There are several types of devices that can be implanted. Pacemakers can pace the heart into a more normal rhythm if the patient’s heart beats too slowly or too quickly. Implantable cardioverter defibrillators (ICD’s, also called defibrillators) monitor a patient’s heart rhythm and can give a shock to help restore a normal heart rhythm if needed. Cardiac resynchronization therapy devices (CRTs) also help restore heart rhythm and help ventricles pump effectively.
Sharon1 explains how defibrillators work.
Transcript
They had this discussion over my bed when I was in the hospital about which – there are several different kinds of gadgets you can put in to make your heart – what they explained to me is that sometimes my heart may not be – both parts of it […]
Louise shares her story about being unsure about what device she had implanted.
Written testimony
I was flown to Calgary again after a second STEMI heart attack in March 2017. I had fallen unconscious before the heart attack, so more than just my heart was in recovery. My head, face and body were battered and my eyes swollen and injured. Cardiac intervention was delayed until I stabilized. After I got out of the cardiac ICU, I was in cardiac recovery again. Then the ICD Clinic people and doctors came to see me a few times. I had been told I had an electrical problem with my heart three months earlier, but I hadn’t looked into it yet. They said ‘we know you have an appointment to meet with us in May, but we would like to give you an implanted device now, while you’re in Calgary and in the hospital’.
I was alone and in shock, and not totally understanding everything. I think it kind of progressed from the ICD people saying I needed a pacemaker, which later changed to an ICD, and then to a 2-lead ICD. I met one or two electrophysiologists, and someone brought me a sample device at one point, and I took a picture of it. I did agree to the procedure, and they implanted my device. Something that I knew almost nothing about for years, until there were problems. I later saw that it was a CRT in my photo, and in my compromised condition, I thought that’s what I had received. It wasn’t. I had a 2-lead ICD that was a combined defibrillator and pacemaker.
Barbara explains that her ICD helps with the electrical part of her heart function.
Transcript
A year after, they finally said, “You have heart – you have heart failure.” They thought it was left-sided, then they thought it was right-sided, they weren’t really sure, but because it happened a second time they insisted that I have an internal cardiac defibrillator implanted, called an ICD, in […]
This type of procedure was often led by a different team of health providers, called electrophysiologists (EP). Like all technology, devices can break down and need repair or replacement. Louise describes a lack of information, follow up and available help from her EP and ICD team after her “ICD started acting up”, resulting in the device giving the wrong information for a year.
Louise turns to Facebook for help with her ICD.
Written testimony
I got 2 letters in January 2021 that my ICD was on alert. From the manufacturer and from Alberta Health. They said that whoever had this particular ICD could have a problem with the battery. And I’m like ‘holy smokes. I never knew there was a battery in this thing!’ At my next interrogation of the device, the technician also told me that one of my leads hadn’t been giving information since September of 2019. So over a year, it wasn’t giving the right information? ‘Well that sounded kind of not good!’.
I didn’t have a lot of knowledge about my device, and I wasn’t getting information from my doctors. And so I went to Facebook and accidentally found a heart failure group and an ICD group last spring. I started learning more online from real people with ICDs. I read about fractured leads. I read about alarms that could go off. I read about people getting shocked by their ICD. I’m like ‘oh boy, I don’t know what you’re talking about’. And I learned that being shocked is not a happy event. And then I wondered ‘when might I get shocked?’
The ICD Clinic people had told me that they’d be checking my ICD every three months now because of the battery alert and the impedance. That’s when I really started to pay attention to my device. I started getting a copy of the written reports every single time they checked it, both in person and by remote transmission. I went on a steep learning curve, and my family doctor came along for the ride.
And I wondered, ‘do I ever meet my electrophysiologist? Like ever?’ Maybe I should be talking to the ICD doctor because I seem to have a few pretty major problems here’.
Louise experienced a similar lack of support when the alarm on her ICD started going:
“I hear this siren, and – I thought that doesn’t sound right. I look out the window and there’s no fire truck, no ambulance. And I’m like OK, what’s happening here? And I realize it’s the European Siren, and I realize it’s me. It’s my ICD. And I’m sitting here like OK, what am I supposed to do now? So I call the ICD clinic. Well of course they’re closed. Call the 24 hour line, well you can’t get anybody unless you know the secret pager number. Well I didn’t have a pager number and I’m like OK, please go off. Like stop you know? So it goes for just a minute or two, but it seemed like an hour of course. Because I was kind of you know just shocked. Not shocked, but surprised. I just wasn’t shocked. And then I remembered all the stuff I read on Facebook and I thought I was in a Medtronic ICD group. Which I have a Medtronic ICD. And also in another ICD group that’s more international. And I thought that somebody’s got to be awake. So I’m going to post that I have my alarm going off, what should I do?”
Pain
Most concerning, several women described the surgical procedures to implant them as painful, without sufficient attention to the women’s comfort. Having surgical procedures, even when they are considered minimally invasive, can cause people significant pain if not done with sufficient attention to pain control. Susan1 described the pain associated with having a Swanz Ganz heart monitor put in by a student at a teaching hospital, “oh my goodness, I had a resident put it in. And clearly did not have enough experience. I have never felt pain like that again.”
Debbie shares her experience of getting her pacemaker upgraded.
Transcript
And then so, that was scheduled and the surgeon called me on his cell and left me a message to call him so I did. And he talked about what would happen the next day and so I went in for the surgery and this time it wasn’t with a […]
VADs and Transplants
The women with heart failure who underwent transplant, explained how their heart function could not be maintained by the use of medications, devices, and lifestyle adjustments. In some cases, a patient’s heart is simply too weak while they wait for a donor heart to become available. In these cases, patients may be offered a VAD (Ventricle Assist Device) implant to bridge them until transplant. These devices take over the pumping action of the heart and enable the patient to survive while they wait for a new heart to be found.
Naomi describes her experiences with a VAD.
Transcript
Eighty five percent of the time when people have LVADS [they] it’s a bridge to transplant. They go from LVAD to transplant list to transplant but they were hoping that because I’m so young otherwise healthy I bounced back a little bit the first time like I had recovered from […]
For more information about this experience, see our page about Transplants.