Faces of Arrhythmia:  How congestive heart failure and an implanted cardiac defibrillator didn’t stop this thirty-something woman from having a baby and living a normal life.

When you hear the words “congestive heart failure” and “implanted cardiac defibrillator” tied to someone’s personal heart history, your mind begins to assemble a picture of what that person might be like.  She’s probably old with white curly hair.  She probably has grandchildren.  Maybe great grandchildren.

What you probably don’t picture is Shelby.  In early 2002 at age 28, newlywed of three months, she experienced shortness of breath, chest pain and fatigue, and decided to go to her local urgent care clinic.  Not feeling like the doctor was taking her complaints seriously enough, she insisted on having a chest x-ray.  Based on her symptoms, she thought she had pneumonia and wanted to get started on antibiotics right away.  Instead, the urgent care doctor realized from reviewing the x-ray that Shelby’s problem was not pneumonia; Shelby had an enlarged heart.

Within 24 hours Shelby’s life would careen around a 180 degree turn.  The morning after her visit to the urgent care clinic, she was seen by a cardiologist who performed an echocardiogram.  By the end of the day, based on the results of that echo, Shelby found herself at Stanford Medical Center in the Cardiac Critical Care Unit.  She was in severe congestive heart failure (CHF) from dilated cardiomyopathy.  Her ejection fraction was 16%.  (A normal ejection fraction is in the range of 50-70%.)  Shelby explained her state of mind when she received the diagnosis - “I can’t describe the level of shock and disbelief we felt. I was 28 years old, had no history of heart problems of any kind, and had just been married for 3 months.”

In the weeks that followed she would learn that her cardiomyopathy was the result of no identifiable cause, but was most likely caused by a virus a couple years before, and her heart had been slowly deteriorating since then.  Though she had likely been in congestive heart failure for some time prior to her formal diagnosis, early on she’d attributed the way she felt to being out of shape, gaining weight (which turned out to be edema caused by the CHF), and just getting older, and that if she just exercised more, she’d feel right again.

Her doctors immediately started her on several medications, including a beta blocker (which lowers blood pressure, making it easier for the heart to pump), an ACE inhibitor (an antihypertensive drug that relaxes the arteries and promotes the excretion of water and sodium (sodium promotes water retention, which can increase blood pressure)), digoxin (which slows electrical conduction in the heart but increases the force of each contraction), lasix (a diuretic) and aspirin.  But despite all of these medications, her cardiomyopathy was not improving.

She was also experiencing PVCs daily, and when she was hospitalized, she experienced several episodes of non-sustained ventricular tachycardia (NSVT).  While both of these arrhythmias can occur in structurally normal hearts and be completely benign in nature, the changes in Shelby’s heart structure (remodeling) were likely to blame for her PVCs and NSVT.

Though Shelby’s NSVT never once turned into VT, after consulting with her doctors she decided to have an ICD implanted anyway, just for the added security.  Shelby knows that some day, just like everyone else that lives and breathes on this planet, one day she too will die.  But in having the ICD implanted, arrhythmia won’t be the reason she leaves this earth.  Shelby explains “Above all, my ICD gives me complete peace of mind.”

In July of 2002 Shelby collapsed in her home.  When the EMTs arrived, they were unable to find a diastolic blood pressure, so they rushed her to the hospital.  Though her ICD had yet to discharge and she was swallowing a small handful of pills every day to help her heart, Shelby’s cardiomyopathy remained serious enough that her doctors thought she should start looking into getting a heart transplant.  At 29.  Being young and otherwise healthy, she was considered a good candidate, so they began the involved process of testing and preparation for a heart transplant.  But during the weeks of testing and preparation just to be included on the transplant list, Shelby got a welcome surprise: her doctors discovered that Shelby’s ejection fraction was improving.

Fast forward to 2005 and Shelby’s heart continued to make improvements.  Her ejection fraction was 50% and her heart’s left ventricle had remodeled itself to be within normal parameters for mass and wall thickness.   In time Shelby and her husband would start thinking about having a family.  “In late 2007, my husband and I started discussing the possibility of becoming pregnant. I found a specialist nearby who was board certified in both ob/gyn and cardiology. She felt my chances for a positive pregnancy and recovery were very good, so we decided to try to conceive.”

On Christmas Eve, 2008, Shelby gave birth to Theodore, a beautiful, healthy baby boy.  Though she had no cardiac problems during the pregnancy, she needed adjustments to medications postpartum to address a return of congestive heart failure.

Shelby has had her ICD for over seven years and it has yet to discharge or pace her even once.  When asked why she wouldn’t just have the lead wires clipped and be rid of it, she said “Even though I’ve never needed it (the ICD), I haven’t for one second regretted having it put in. It can be a pain in the butt in airports or  when I needed an MRI after a knee injury and couldn’t have one.  But overall, the peace of mind it has given me has been worth every hassle.  My ICD battery is just now running out and when my it’s depleted, I plan to replace it with another ICD, hopefully one that includes all of the amazing technological breakthroughs they’ve developed in the 7 years since my first one was implanted. For anyone given the option of having an ICD implanted, I would unequivocally encourage them to get one.”

I was impressed with how Shelby tried to approach the diagnosis and her treatment options so rationally, and seems to have such a good attitude about all of it even now, as she goes in for regular ICD and cardiac checkups.  I asked her if she was some kind of superwoman, or if she had some secret to being able to roll with these punches.  “It’s easy to get depressed after being diagnosed with any kind of cardiac condition and/or arrhythmia. More than anything else, a problem with your heart is terrifying because your heart is your life. Unlike any other organ besides the brain, if something really goes wrong with your heart, you literally have less than a handful of minutes between you and death. We rely on our hearts to just sit in the background doing the busy work of keeping us alive and well without ever thinking about it. Suddenly feeling that your heart is not as reliable as it should be is a very scary thing. It’s totally normal to feel anxious and depressed about it.”

When asked how she coped with the diagnosis and difficult decisions she had to make, Shelby told me “You still have to live your life. I really am a big fan of therapy. When we got my heart diagnosis we were newlyweds. It came out of the blue and was very serious and stressful. If I hadn’t been able to talk about those feelings honestly with a therapist, I don’t know how I could have made it through. We often don’t want to worry our loved ones by talking about our fears regarding our hearts, but we still do have these fears and our loved ones still worry. Talking to a therapist really helped me deal with my depression and anxiety without feeling like I was worrying or burdening my family. I also am a big fan of medication when appropriate. Sometimes people need anti-anxiety medication to help them deal with the acute issues while they are working on adjusting to this new lifestyle. I certainly did. Anxiety medication doesn’t have to be a lifelong commitment. I consider it yet another tool in the overall toolbox of recovering from and living with a heart condition. Many people need help sleeping, and that’s okay too. My philosophy is that you should do whatever you need to do to be a whole person. If that includes professional help for the emotional aspects of cardiac problems, then so be it.”

The virus that doctors think cause Shelby’s cardiomyopathy did permanent damage.  Instead of a heart full of healthy muscle tissue, portions of the tissue in her heart died and scarred over, leaving the rest of the functioning heart muscle to work that much harder to do it’s job.   As you might expect, during the period when Shelby was doing all she could to improve her health and nothing was working, there were some dark moments.  “The whole thing was very overwhelming and traumatic. But like anything else, the only way to get past it is through it. Those were the times when I thought my life would never be normal again. That my heart condition would always dominate every aspect of my life and continue to define me. But really through time, healing (both my heart and my emotions), and therapy, I did come out on the other end. I do think the important thing to know is that you can and will be a regular, normal person on the other side. That was what kept me going.”

And now, more than seven years after she had an ICD implanted, after she was preparing for a place on the heart transplant list, her heart condition is rarely given a thought.  “Seven years ago it was ALL I ever thought about, and I thought I would never be able to live a normal life like other people do, just seemingly carefree. But the reality is that now, it’s just not an issue for me. For years I saw myself as a ‘heart patient,’ but now I just see myself as a regular person who happens to have a heart condition and happens to have an ICD. I also happen to wear glasses and have lousy knees. And I have bad hair. I would kill to have great hair.”

I’d say that’s pretty normal.

by Jeff

Shelby is happy to talk to anyone about her experiences with cardiomyopathy, CHF, and ICDs. You can contact her at shelbyscout [at] gmail [dot] com.

Skipping Hearts? Meet Irene.

I met Irene through online postings we both made on a medical website related to arrhythmia. I’ve had ten years’ worth of learning how to handle PVCs, but back in December of last year I was having something more than PVCs. I wasn’t sure what it was, but I knew it scared the hell out of me. I made online posts, asking about what I might have, if it could kill me – you know, the usual. Irene replied to many of my posts as a voice of reassurance and knowledge. I always ended up feeling better after reading the things Irene had written in response to questions, and I thought you might feel better if I introduced her to you, too.

Irene is 56 and lives in Oregon. She’s semi retired, spending the occasional few days helping colleagues with wildlife rehabilitation, her former full-time occupation. As you might imagine, wrestling a beaver or a large owl can be pretty tricky, though she seems to make it look easy.

Irene has been living with arrhythmia since she was in first grade. She recalls “I was leaning against my desk concentrating on carefully writing the alphabet when my heart started to pound and race. My body was rocking with the rhythm and I quickly sat back. The sudden rhythm change didn’t bother me as much as the thought that someone may have seen me.”

As she grew up, so did her arrhythmia episodes and symptoms. “There were times that I went to bed with a bad arrhythmia episode. Not because I was afraid and trying to hide away. They were times when the tachycardia was pretty bad/fast and it wouldn’t convert on its own. After a half hour of that my chest would hurt. It seemed the only way to stop the arrhythmia was to lie down, sometimes with my feet elevated. It was years before a doctor explained the valsalva maneuver to me so I could stop the tachycardia on my own.”

In the 1970’s while living in Colorado, the arrhythmia finally got bad enough that Irene started taking Inderal, a beta blocker. The family moved to Oregon and life continued on it’s merry way. Irene’s palpitations and tachycardia made regular appearances all along the way, when one year a cardiologist suggested she consider a catheter ablation. But because she’d been living with her skipping and racing heart so long, and hadn’t felt constrained by it’s sometimes unpredictable behavior, she was hesitant.

But the doctor told her he thought he could make her life better than it was, so she signed on for what was to be the first of three ablation procedures. “The first ablation procedure wasn’t bad. The most difficult part for me was having the IV put in. The rest was pretty much a blur thanks to the medications they used. There was one point during the first ablation that I was feeling some pretty severe chest pressure, like a phone pole being pushed through my chest and out my back. I wasn’t able to speak up but they seemed to notice my discomfort and more meds were given. That’s the last thing I remember. The second and third ablations were even easier because I knew what to expect and they were a little more generous with the meds.”

While an ablation procedure is not risk-free, there is a very low incidence of complications with the procedure, which makes it a popular first-line option for some types of arrhythmia. Even so, ablations aren’t always successful. “After the first ablation I did have high hopes that my tachycardia would be gone. The cardiologist felt it was a success as well. But within the year I was having some tachycardia symptoms again. Eventually I went in for the second ablation. The cardiologist was very disappointed after number 2; he was unable to ablate the problem. I finally went in for a 3rd time. The notes mention that tachycardia was still inducible but was of short duration. That pretty well describes what I feel now. Still, it’s a major improvement.”

It’s the nearly lifelong experience with arrhythmia, holter monitors, event monitors and her three ablations that give her lots of credibility when answering other people’s arrhythmia questions. Her experience has also provided her with a sizeable knowledge base of the topic as well as empathy for those suffering from similar conditions. “Mostly what I see on the boards are people with PVCs or PACs that gradually are overcome with fear, that they may die or they allow the ‘heart hiccups’, as I call them, to disrupt their lives. I understand their concerns. Something strange is going on in their heart, the major organ of their body that keeps them alive. Once they have been thoroughly checked by their doctors and told there is no danger, I wish they could adjust more easily to this new rhythm. I admit, this is easy for me because it’s been a life-long experience. But many can’t seem to get over that hurdle. Then it becomes an anxiety issue and that needs to be handled differently.”

When asked what she would like to teach those who are fearful of these new sensations they’re having in their chests, Irene says “I wish I had the magic answer to ease their fears. It takes time. Some people have had their PVCs/PACs for a few years and yet still live in fear. I like to point out that they’re still alive and doing well. I’ve had mine for at least 50 years, probably more, and I’m still alive and doing well. Perhaps the doctors do know what they’re talking about when they tell us the ectopics are harmless. Then again, I’m one of the lucky ones since I’ve never had to adjust to this problem – I’ve always had it.”

One of the things that struck a chord with me when corresponding with Irene was how she seemed to just move through her day and her activities, pausing if need be to wait out an unusual rhythm episode, but then picking up right where she left off as soon as it’s done. Like waiting for an opening in a revolving door to get to the next place you’re headed. And with the same amount of emotion.

“Why do I live with my arrhythmias without fear? I do think part of it is the fact that I’ve never known anything else. Whether it’s living in a certain country, living a certain lifestyle (rich or poor) or living with a jumpy heart, you just become accustomed to it. That is a big plus for me. I also tend to be analytical and look at things as separate from me. Helpful at times but perhaps it’s a bit of denial too.

As I said, I understand the initial fear: your heart has been beating quietly for years and suddenly starts to skip or pause or surge into your throat. There’s that fear of the unknown. We all know about that. That’s when a trip or two to their doctor can bring answers and hopefully some peace of mind.
Then there are the folks that see doctor after doctor about their PVCs or PACs and still can’t seem to accept their heart’s rhythm. What I’ve noticed most often is they comment that they already suffer from panic attacks or anxiety. I have no answers for that because I’ve never had to walk that road. Getting nervous now and then is not the same as having an anxiety disorder. But to my non-medical way of thinking, the anxiety is the primary concern, not the PVCs. The PVCs are simply a trigger for the anxiety attacks. There’s no permanent fix for PVCs and a doctor shouldn’t be forced into that corner. That’s like having every mole/freckle on your body removed because some day one of them might become malignant. Well, maybe that’s true but it’s not practical to take such extreme measures for something that’s basically benign. So to me what the focus should be is treating the anxiety. But I’m not going to say that to someone. It comes across as insensitive and like telling them ‘it’s all in your head.’ It is a matter of perception but the results are real and just as painful to live with. I sympathize with their fears but pills and ablations are not the answer.”

Maybe it’s because Irene’s heart is so filled with family, friends and the grateful souls of the arrhythmia sufferers and wildlife she’s helped that it’s just too stuffed to beat normally.

by Jeff