the lack of mental and emotional support for cardiac patients from a cardiac patient

Heart Surgery by nature is traumatic, having your heart stopped, chest ripped opened and parts moved, removed and replaced is not normal or something you ever really think is going to happen. 

Now before we go any further let me say, I loved my medical team, from my cardiologist who, though blunt in the delivery, finally gave me the answers many tests and doctor appointments had not, to my surgeon who seemed to know exactly what to say and what to tell my mother on the quiet to be relayed to me at a later date, so as to not freak me out any further than I was already freaked, to my anaesthesiologist who was determined to make sure I was as comfortable as possible. They were an amazing team and one who I would not hesitate to go back to in the future. 

Despite the advancements in the medical aspect of treating cardiac patients and the life saving surgeries that are being preformed, the mental and emotional side of cardiac patient care is still considerably lacking. The lack of support in my case was evident from the minute I was discharged, there was no information relating to possible complications, let alone any mental health support. As I said earlier, I loved my medical team and they were fabulous, it is the system as a whole that is lacking in the fundamental support that patients need. When I was released I was given my bag of medication and wished well, that was it. 

The weeks immediately following my surgery were rough, sure I was in pain and the medications were reading havoc on my body but the real struggle was with my own brain. I felt like I was in a constant state of fear and dread and suddenly every little tweak or twinge in my body was the only thing I could think about and every single one felt like it was going to be the thing that was going to damage what felt like my now exteremly fragile heart. I wasn't sleeping, I had no appetite, I was anxious and I felt completely alone, not without support, but without anyone who truly understood what it felt like to experience what I had just gone through, I'm not sure I even understood at the time and to some extent even now I'm not sure my brain fully comprehends it. I look at my scar and it almost feels surreal. And yet even with all these physical and prominent feelings, emotions and symptoms, I felt like I was going crazy. I saw a therapist who through no fault of her own, had no concept of the depth of what I was dealing with. It reiterated my thoughts that it wasn't normal and set me on a path of ignoring it and trying to pretend it wasn't happening and only made me feel more isolated. More on that later.

Fast forward a few weeks and I was referred to a cardiac rehab program that is designed to help cardiac patients with their physical recovery. Now the unusual thing about my surgery is that my condition is normally picked up in small children or older people so to have that diagnosed and treated as a young adult is quite abnormal. Secondary to that, the cardiac rehab I was refered to was full of older individuals who had a heart event such as a heart attack, and being for the older patients, the exercises really only catered for limited exercise and mobility capability, they only went as far as walking a couple of hundred metres (at most) and climbing three steps, I needed to be working towards a goal far beyond that point. For a young otherwise healthy woman I was not getting the benefits from it that was I needed nor that wee required and once again I was left with the feeling of being the odd on out. When I mentioned to the nurse about how I was feeling I was brushed off with the "oh you sound like you have what's called Cardiac Blues, its normal and will go away on its own". While cardiac blues is something that many patients do suffer from and it does cause feelings of fear, anxiety, sadness and confusion, I knew deep down this was something more and there was no where that was able to help me and more to the point, there was no on that seemed willing to help or offer me any answers. 

There was no information any where, this is where the system seriously lacks, a patient who is struggling should not have to search and be left short handed when trying to access answers and support for what is a vital part of the recovery process after open heart surgery. The physical recovery is so at the forefront that the mental and emotional/ mental side is something that is so easily overlooked and is something that simply cannot afford to be ignored. 

Not one person I spoke to seemed to understand nor have any sense of what exactly it was that I trying and failing, to understand and cope with. I was actually told that it was within the parameters of what is considered appropriate after a 'procedure' such as mine. There was no consideration or adjustment to meet my needs or to even try and understand let alone help me access the correct services I needed. This meant I had to source my own help, my own answers as to what was happening to me. The lack of support led to me to the albeit misguided belief that my feelings were somehow wrong or not allowed and so, I shoved them down, painted a smile on my face and told everyone I was fine, because after all, that is what people wanted me to tell them right?

I can without a doubt, 100% tell you, this was the worst thing I could have possibly done. My mental health took a dive and I was not at all the happy outgoing person I once was, despite appearances on the outside. I was suffering from crippling anxiety in all aspects of my life and at times, had my family worried if I may be slipping into a depressive like state. I would wake up in the morning and think, 'again, really, I have to do this again?'. I was having panic attacks at work, at home, sometimes there would be a trigger, sometimes they were completely random. Even now five years later, I am still battling my mind and honestly, some days it wins. 

It wasn't until I stumbled across a support group on Facebook almost a year after my surgery, run by Heart Foundation called "Supporting Young Hearts" that I finally realised that I wasn't the only one who felt like this, it was a revelation to find out that even though I felt isolated in my struggles there were other people who shared the same struggles and that, was the most comforting feeling. It was through that community I realised that what I was going through wasn't normal. 

Five years later and I have only recently had/found access to a psychologist who specialises in treating people who have a heart related health issues. I found this on my own, after I was told that I was "anxious because I wasn't getting enough sleep", a complete and utter blow off of my concerns after I had actively gone out to seek help for my mental health.

Even if you are lucky enough to find somewhere, the chances are you have to meet certain criteria before they will see you, which in some ways I completely understand. Why, though are some deemed more important than others? What can we do to make these supports readily available and accessible to all who require them? Why should patients have to go searching and advocating as to why they need help instead of just having the choice to access the help they need? These are my questions that I hope moving forward can be answered and hopefully met with action. 

I am slowly starting to bring into focus what it is I need to heal. I am learning to be kind and gentle with my self, accepting what happened in the past and looking forward to the future where my mind can be as healed as my heart. A long journey that, for me is far from complete. If you are struggling, I see you, I hear you and I hope you too can find the support you need to heal.

Jess xx