The Roller Coaster of Congenital Heart Disease (or Pushing a Boulder Up a Hill)

I'm still alive. Barely. This has been a shitty year.

I'll get you caught up since we last spoke in February 2017. I ended up getting (what seemed on paper) an awesome job at a prestigious organisation. It wasn't in reality: neither awesome or prestigious; and I never got the chance to truly do the job I was hired for. A more accurate description is chaotic, a lost cause. I was there for approximately 16 months. Why did I stay there that long, after I had gauged the level of chaos within four weeks of having arrived? I don't give in that easily. I'm a dog with a bone. If you have a problem, I'll work my ass off to try and fix it because that's who I am. Maybe I shouldn't get that emotionally involved or have such high expectations of organisational structures or people? But that's not who I am, I don't put up with half-arsed and I care about the quality of work I produce and the impact I have on others. I want to contribute, make life better for others around me and leave my corner of the world that little bit of a better place than what it was before. 

It was weird, that place was so seductive, its people with such compelling stories and promises, with a decent job description, pay and benefits package and the promise of things getting better. I was lulled into a false sense of security that preyed on my loyalty, hard work ethic, commitment and natural inclination towards problem solving. It was like an abusive relationship: I kept on going back because I was promised things would be different next time, but they weren't. In fact they kept getting worse.

Something I haven't experienced before is the chronic stress element. It differs from standard stress, where you get pushed for a short period and then the valve is opened to release pressure and you get back to an even playing field again. Instead, chronic stress builds up over an extended period of time, constantly rising until something massive, like Chernobyl happens. There's warning signs, but you're so used to the stress and long hours (because that's your standard level of operation now) that you ignore or try to poorly manage the warning signs...and then BANG!

16 months of chronic stress and three heart incidents later, I accepted my reality: either that place was going to kill me, or I quit. I did the latter and I've been off work and recovering from my last incident for five and a half months already. I'm still angry though. I'm angry at myself for putting up with bullshit and not being kind to myself. I'm angry at the organisation and its people that didn't perform their duty of care. 

I sometimes forget that I have limits, that my heart and energy levels aren't as strong as someone who was born without heart issues. I forget because I can't sit idle waiting for my condition to claim me. I want to live my precious life and enjoy it just as much as anyone else, I want to challenge my mind and offer value to others without constantly thinking about illness or death.

But now I'm giving myself time to decompress and reflect. I'm learning my lessons and implementing strategies to better manage myself and my health. That's the beauty and often frustration of life: the power of retrospect and growth as an individual. Its a gradual, cumulative and an imperfect process.

I was incident free for over 3 years post having my defibrillator inserted. Then the job with the chronic stress happened and so did these incidents during extreme and prolonged periods of stress and exhaustion:

• Cardiac arrest, one appropriate and successful defibrillator shock to revert ventricular tachycardia  - six months into the job
  
• Atrial fibrillation, hospitalisation with transoesophageal echocardiogram (TOE) and cardioversion - nine months into the job
• Cardiac arrest, six consecutive and appropriate defibrillator shocks, with sixth successful in reverting ventricular tachycardia; cardiothoracic surgery for defibrillator replacement, medication change, rehab - 16 months into the job

There can never be definitive reasoning as to why these incidents happen, but doctors have a good idea. Stress and depression don't help, studies link these clearly to arrhythmias, particularly atrial fibrillation. Having congenital heart disease doesn't help - fucked heart from the get go, which puts patients into a higher risk category of having more complications or issues throughout their life. And finally scar tissue from open heart surgery can also cause arrhythmias. Or maybe it was a virus that weakened and affected my heart? Take a pick, I've had it all. And the severe stress and exhaustion made it so much worse.

People particularly in this modern day and age want a quick fix, a one pill solution, a reason they can grasp onto and fix. The best unsolicited advice I got from a family member recently was to fix my diet. I guess I shouldn't eat that donut or worry about all the other factors that come into play? Fuck it, I'm eating the donut.

One of the hardest things in this life is to live with uncertainty. People try to help, to simplify, to process.

There's limitations and doctors aren't gods. We're also all different constitutions that have our own way of ticking and working with genetic and environmental factors coming into play. The way modern health has advanced and information is disseminated makes us have a collective cultural mindset of being invincible and immortal. We're not and we don't have all the answers. Nature and life are both a beautiful and ugly miraculous mystery.  

I've been here before. I've been through this. I've got this. This wasn't my first cardiac arrest and it's probably not going to be my last.

I get moments of emotional weakness and complacency too. After my first out of hospital sudden cardiac arrest in 2014, I satiated my uncertainty by convincing myself that it was most likely a one off random event and the defibrillator was my insurance policy. I know better now. It's my survival mechanism. Until other heart complications; or other health issues or old age get me, just like any of us.

The last year and half has been at times a horrible nightmare; and at others a beautiful ethereal dream. 

In their book 'A Beginner's Guide to the End', Miller and Berger briefly talk about major chronic diseases and their patterns. They describe heart disease as having the pattern profile of a roller coaster. That's right, with the constant ups and downs, with good periods and bad ones. Where you're in hospital feeling rubbish and terrified for our life one day and the next you're recovered (for now), elated and discharged to go home to resume your normal life.

That's been my year. And here I am again, picking up the pieces and getting on with it. But it's alright, I've got this. I told you: I've been here before. 

It's familiar, but I wouldn't say that it gets easier. The darkness in my mind is real, with the insomnia and the sheer terror of going to sleep because I think I might die during the night. And the anxiety is taken up a notch or five now. Not only from the panic of dying, but I'm also emotionally paralysed from entering the work place again because I'm traumatised from my last job. 

There's a Greek myth that stuck with me recently: the story of the great Corinthian King Sisyphus. He was so cunning that he captured and escaped death. For this, he was eternally punished in Hades to push a boulder up a hill, which would then roll down upon reaching the hill's summit. Push, roll, repeat. For eternity. A fruitless and laborious task. A lesson in how we are unable to avoid the inevitable. Death and taxes come for us all.

So here I am, call me Sisyphus. Whether I'm riding a roller coaster or pushing a boulder up a hill, I'm stuck in this perpetual loop with no control, but I keep going. Welcome to life.

Helping Someone with PTSD

The content for this post is from Helpguide.org

Helping a Loved One or Family Member with Post-Traumatic Stress Disorder

Image courtesy Before It's News

When someone you care about suffers from post-traumatic stress disorder (PTSD), it affects you too. The symptoms of PTSD aren’t easy to live with, and the changes in your loved one can be downright terrifying. You worry that things won’t ever go back to the way they were before. At the same time, you may feel angry about what’s happening to your family, and hurt by your loved one’s distance and moodiness. It’s a stressful situation all around—one that can leave you feeling overwhelmed, even as you try your best to stay strong. The most important thing to know is that you aren’t helpless. Your support can make a huge difference in your partner, friend, or family member’s recovery. But as you do your best to care for someone with PTSD, you also need to take care of yourself.

Understanding the impact of PTSD on family & relationships

PTSD can take a heavy toll on friends and family members, and relationship difficulties are common. It can be hard to understand your loved one’s behavior—why he or she is less affectionate and more volatile. You may feel like you’re walking on eggshells or living with a stranger. You may even be afraid of the person. The symptoms of PTSD can also result in job loss, substance abuse, and other stressful problems that affect the whole family.

It’s hard not to take the symptoms of PTSD personally. When someone you love is distant, anxious, or angry all the time, your relationship suffers. But it’s important to remember that the person may not always have control over his or her behavior. Anger, irritability, depression, apathy, mistrust, and negativity are common PTSD symptoms that your loved one can’t simply choose to turn off. With time and treatment, they will get better, but it’s a gradual process.

Tips for coping with PTSD in the family

• Be patient. Getting better takes time, even when a person is committed to treatment for PTSD. Be patient with the pace of recovery. It’s a process that takes time and often involves setbacks. The important thing is to stay positive and keep at it.
• Educate yourself about PTSD. The more you know about the symptoms, effects, and treatment options, the better equipped you'll be to help your loved one, understand what he or she is going through, and keep things in perspective.
• Don’t pressure your loved one into talking. It can be very difficult for people with PTSD to talk about their traumatic experiences. For some, it can even make things worse. Instead of trying to force it, just let them know you’re willing to listen when they’re ready.
• Take care of your emotional and physical health. As the saying goes, put on your own oxygen mask first. You won’t be any good to your loved one if you are burned out, sick, or exhausted.
• Accept (and expect) mixed feelings. As you go through the emotional wringer, be prepared for a complicated mix of feelings—some of which you’ll never want to admit. Just remember, having negative feelings toward your family member doesn’t mean you don’t love them.

PTSD & the family: Social support is vital to recovery

It’s common for people with PTSD to withdraw from their friends and family. While it’s important to respect your loved one’s boundaries, too much isolation is unhealthy. Your comfort and support can help a person with PTSD overcome feelings of helplessness, grief, and despair. In fact, trauma experts claim that receiving love from others is the most important factor in PTSD recovery.
Knowing how to best demonstrate your love and support, however, isn’t always easy. You can’t be your family member’s therapist, and you can’t force him or her to get better. But you can play a major role in the healing process by spending time together and listening carefully.

Why someone with PTSD might be reluctant to seek support

• Being afraid of losing control
• Feeling weak or ashamed
• Not wanting to burden others
• Believing that others won’t understand
• Wanting to avoid thinking about what happened
• Fear that others will judge or pity them

How to be a good listener

While you shouldn’t push a person with PTSD to talk, you can let them know you’re available for them. If they do choose to share, try to listen without expectations or judgments. Make it clear that you’re interested and that you care, but don’t worry about giving advice. Leave that to the professionals. Instead, do your best to simply take in what they’re saying. Never underestimate how much the act of empathetic listening can help.

A person with PTSD may need to talk about the traumatic event over and over again. This is part of the healing process, so avoid the temptation to tell your loved one to stop rehashing the past and move on. Instead, offer to talk as many times as needed. And remember, it’s okay to dislike what you hear. Some of the things your loved one tells you might be very hard to listen to. But it’s important to respect their feelings and reactions. If you come across as disapproving, horrified, or judgmental, they are unlikely to open up to you again.

Communication Pitfalls to Avoid

• Giving easy answers or blithely telling the person everything is going to be okay
• Stopping the person from talking about their feelings or fears
• Offering unsolicited advice or telling the person what he or she “should” do
• Blaming all of your relationship or family problems on the person’s PTSD
• Invalidating, minimizing, or denying the person’s experience
• Telling the person to “get over it” or “snap out of it”
• Giving ultimatums or making threats or demands
• Making the person feel weak because they aren’t coping as well as others
• Telling the person they were lucky it wasn’t worse
• Taking over with your own personal experiences or feelings

PTSD & the family: Tips for rebuilding trust and safety

Trauma alters the way a person sees the world, making it seem like a perpetually dangerous and frightening place. It also damages people’s ability to trust others and themselves. Anything you can do to rebuild your loved one’s sense of security will contribute to recovery. This means cultivating a safe environment, acting in a dependable and reassuring way, and stepping in to help when needed. But it also means finding ways to empower the person. Smothering someone with PTSD or doing things for them that they’re capable of doing for themselves is counterproductive. Better to build their confidence and self-trust by giving them more choices and control.

Fight or Flight

Following a major life event, there are good and bad things about life moving on as per normal. Normality can offer a good distraction; a reason to keep going; or a good escape from the seriousness of recent events. Alternatively, it can be such a good distraction, that you never get a chance to deal with your emotions to then be able to move on and live a new kind of normal. It's so easy to get caught up in existing and functioning, that we don't permit ourselves the mental or physical space needed to deal with our emotions.

Another factor that can impact this, is time. Often it's a necessity to simply keep functioning because anything more than that is not possible, so with time, other things come out in the wash.

I was so caught up in functioning and dealing with one issue at a time, that it took me a good eight months post cardiac arrest, to realise that since the cardiac arrest I've been having nightmares every night.

I couldn't tell you specifics about the nightmares because they have always been so muddled, but the constants have been the vivid emotions I've been experiencing in them. It's always the same: violence, fearfulness, loss of control, confrontation, anger, anxiety, hatred, cruelty, hopelessness, desperation, chaos, being judged, frightfulness, frustration...amongst others. In my nightmares, I'm always pushed into situations I don't want to be in or deal with, with no choice but to haphazardly confront them.

Image courtesy of Think Inc.

To say that I've been exhausted after the cardiac arrest, is an understatement. I was constantly so tired and looking for reasons for this exhaustion, that I completely missed the obvious one: good quality sleep. It wasn't that I wasn't sleeping enough; or didn't have the ability to fall asleep. We even bought a new mattress! It was that I was having nightmares: an inescapable loop of the same, stagnant emotions in similar scenarios every single night. As a result I would wake up exhausted, in a haze and blur of confusion. I'd be cranky, impatient, unclear, unable to focus on any given task for too long, and would get worn out really easily and quickly.

So I focused on the tiredness as perhaps being caused by hypothyroidism. The (slight) hypothyroidism I've been experiencing most probably being a result of the heart medication amiodarone that I am on. There was no other logical explanation because the only thing my blood work showed were the TSH levels to indicate the hypothyroidism; and a spit test that I did showed low levels of progesterone. Essentially both tests showing that my hormones are fucked*. My cardiologist, GP and the head endocrinologist at RPAH were not concerned with my thyroid results and advised to simply keep a close eye on it.

So what next, what's the problem? No one could give me an answer. My cardiologist advised that perhaps the severe tiredness was due to sleep apnea, which is a common symptom for heart patients. So I went to my go-to guy for all things advice: my shrink. I figured he'd have a good colleague or know of a clinic he could refer me to do a sleep study. At this point I began observing my sleep looking for sleep apnea signs, but what I found instead were the constant nightmares. I told my psychiatrist about these and he was not surprised: they are a common symptom of PTSD. So we trialled a blood pressure medication which has been proven to assist PTSD patients with their nightmares. It switches off the fight or flight response experienced during sleep, giving you a chance to process and therefore wake up more refreshed and have better day-time function.

Hey presto, as expected, the medication worked overnight. The first nice dream I had in approximately eight months: and it was about my sisters. I was a little girl and they were all fussing over me and looking after me, loving me and nurturing me. The complete opposite scenario and set of emotions from my nightmares. It was exactly what I needed.

Following this I visited completely new places in my dreams. Not all my dreams were pleasant, but I no longer felt the need to escape them. In my dreams I could now control my emotions and I had choices. I could choose what I did and how I responded, and could even walk away from them or change them. This was a complete turnaround from being forced to continuously and haphazardly deal with unpleasant situations.

I took the pills for about a week and then stopped. I wanted to see what would happen when I came off them. It's been over a month now and I am happy to report that I am still visiting new places in my dreams, interacting with people and feeling more and more empowered in them. With the option of taking the medication again should I need it. I feel that even just that one week of quality sleep (minus the fight or flight hormones) was enough to kick my brain over into a new state of mind and function. I feel like a new person and enjoy each day at home with my daughter so much more now (as I'm sure she does also because I am no longer cranky). I have the ability to focus on tasks and feel much more energetic and capable of doing the things I like to do, including exercising regularly, socialising and preparing nutritious meals.

And the road to recovery continues...

What I've realised from it so far, is that the road is rocky with bumps, ditches, holes and smooth parts in between. Everyone has their own path and set of circumstances. But what I do urge all heart patients (particularly after a major cardiac event) is to not neglect their mental health and state of mind. Emotions play a major part in our healing process and capability with dealing with whatever gets thrown our way.

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*I've been doing some research on hormones and PTSD, so more on this stuff later, in another post.

One Month Check

On Thursday I had a check-up with my cardiologist and the defibrillator clinic at RPAH, which is about a month after being discharged from hospital.

I got good news, really good news. There were no changes to my heart post the cardiac arrest and no incidents recorded on the defibrillator.

I've mentioned this news to a few close friends and my automatic declaration after sharing the news, is to let them know how relieved I am.

I was lying. I'm not relieved. I'm even more confused because "I'm (almost) back to normal" with nothing really wrong; with no solid reason as to why this incident happened; and still, with no certain answers. The reality is that I will never have any (certain) answers. It's the uncertainty that I have to come to terms and live with.

I'm scared that any moment I could have another cardiac arrest.

What if I'm walking and crossing the road with Zoe, when it happens?
What if I fall and hit my head?
What if....who knows?

In the waiting room at RPAH to see the defibrillator doctors, my husband got chatting to a gentleman who was also there for his check-up. He's in his early 60's and up to his third model of defibrillator. He's had 38 zaps.

I asked what happens when he gets zapped. He said he sees a white flash before his eyes then blacks out for some time, before coming to. He advised me if this happens, to sit down and remain seated in case there is an additional zap after several minutes. He told me that one time he was on the escalators at a shopping center when he got zapped and he collapsed. People walked past him without helping, without checking if he's OK. Until a bit later, when two tradies figured out what happened and called an ambulance. My heart broke when he told me the story. I was surprised I didn't cry when he was talking to me. He's really sick. He can no longer work, he can hardly do anything and he should have a constant carer, but he can't afford one. He could have died 38 times but the defibrillator saved him.

Chris asked me if I felt better speaking to him, if I was convinced the defibrillator works? Sure, technically yes, I felt a little more convinced that it does work. But I felt more sad that that man has had such a tough time, that he's so sick. That, in no way makes me feel better that in comparison, I'm not as sick. Everyone experiences their own level of suffering. I'm just sad that for whatever reason, there's so many people out there that are unwell.

Over six weeks after the cardiac arrest, I am still finding out slivers of new information about the event. The day of the arrest I was touch and go. A hospital counselor spoke to Chris when I was admitted into hospital in the ICU. My condition was uncertain. She advised him to ring our immediate family/friends to let them know what happened. They didn't know whether I would make it or not.

This piece of information came out when we were having lunch with some friends on Saturday. I was shocked to say the least. I knew the situation was severe, but I had somehow managed to downplay it in my mind so I could process it. I buried the severity deep down inside me so I wouldn't be terrified, but instead could function. And now, that terror is surfacing. I really don't want to have another cardiac arrest.

Chris' view has been interesting. He said I experienced the worse possible thing I could, and survived it. That may be the case but at this stage, it still doesn't mean that I'm not terrified it could happen again.

The Only Way is Up

Before the cardiac arrest we had booked three trips: two interstate and one abroad. We like to travel and having family and friends spread all over the world makes it more of a priority. One of the first things I did after coming out of hospital was start organising our upcoming trips.

At the time I had an overwhelming urge to go ahead and lock in the trip details as soon as possible. On the surface I thought the reason was to make the most out of getting a second chance in life. I didn't want to miss the opportunities to see our family and friends. Underneath all that was the overwhelming desire to resume life as normal. You see, I'm the trip organiser in our family, so the trip logistics and destination selections are my domain. So I took the reigns and went full pelt into organisational mode.

In my chat with Dr Jaime O (my holistic therapist) this week we discussed fear and not letting it be the motivating factor behind my actions. Instantly I felt guilty (there is that pesky guilt creeping in again) that fear was my motivation behind continuing with the trips. On one hand I had my existential crisis around mortality and on the other, a bunch of emotions that were only just starting to surface. Evidently, guilt was the initial and predominant emotion, with fear a close second.

I thought maybe I was afraid not having done some things I wanted to do in this life? Afraid that I would leave this existence having missed out on something: a moment, an experience, an interaction. That's what my mind was telling me, that they should be the things I should be afraid of.

I caught up with my dear friend Krystal for a coffee recently. She asked me if what happened made me think about my bucket list. I thought about that question for a moment, lingered over it whilst holding my cup of hot chocolate. "No, not really. I think I do a pretty good job of living my life exactly how I want to live it, and doing all the things I want to", was my response. Perhaps the only things I haven't done from my list are learning Italian or to play the guitar.

Considering I live my life how I want, then logically, I shouldn't be afraid of missing out on anything. I realise now what I was really afraid of, is losing myself. I realise that sometimes we have to lose ourselves before we can find ourselves again.

I've been feeling that I need to redefine who I am. That these events (the cardiac arrest and the insertion of a defibrillator) somehow made me into someone else, that they define me, that once again I'm that sick person I spent the first 25 years of my life believing I was. I've worked really hard to shed that limiting belief. Similarly to life and death, my life and my condition are two very separate entities. So the challenge is to integrate and manage them. I'm like everyone else, with the same hopes and desires, just a little bit special, so I have to ensure to look after myself accordingly.

I no longer think I need to redefine myself. I'm simply Angie 2.0. The same as before but new and improved with the addition of some technological advancements, an insurance policy if you will, in the form of my defibrillator.

I'm writing this 37,000 feet in the air, cruising above the clouds. We're on our way to Perth to visit my long-time friend Jenny and her family. In my state of fear weeks ago I was thinking about all the things that could go wrong. I'd be stuck in a plane for five hours. What if I have an arrest during the flight? What if the defibrillator doesn't work? What if I die on the plane (and all the horrific logistics around that)? What if my defibrillator sets off the security machines at the airport? What if these fears become so overwhelming that I don't want to fly?

Traveling is up there on my value system, along with family, friends and new experiences. These values are closely intertwined. Once I realised that my true fear is losing who I am, and that travel is a big part of me, giving into the fear and not traveling became impossible. Who I am is not negotiable. I refuse to give in to a shitty, intangible emotion like fear. What a waste of time!

For the first time in a long time I finally feel like myself again. I put my headphones on and listened to my music full blast. I starred out the window and looked beyond the clouds into the misty horizon. I dreamt of faraway places. Then I cried. I cried for the fear and guilt I needlessly have been feeling. I cried for the people in my life whom I love. I cried for all the people in our world that feel pain and suffering. I cried for the gratitude I feel for my life and existence. I cried for the moment. I cried for finding myself again. I cried for the surrender that I finally felt.

 

Pharell Williams puts it well: "Clap along if you feel like happiness is the truth. Clap along if you know what happiness is for you. Clap along if you feel like that's what you want to do". I'm happy to feel like myself again and live my life how I want to live it. Beyond that there's nothing much I can do, just go along for the ride.

In my mind, I'm clapping all the way to Perth.