Celebrating the day I nearly died

Before we get into this blog, I need to put out a little disclaimer: I have been going through a difficult time recently. Especially from a mental health perspective. I have some time booked in with my psychologist. This blog is a little raw, and was written on a day where I was not feeling my best. Keep that in mind when reading this.

I have seen a lot of rebirthday posts in support groups on the anniversary of a person's cardiac event. Especially cardiac arrest survivors. I get it. Cardiac arrest survivors actually died.

At this point I don't feel like this anniversary is a day that I want to celebrate with a party and a cake with candles. At the moment it reminds me of a hard path over the last two years.

Finding my own support

I often think of my own first event, and especially in May when it's my anniversary of my first VT. I found it really traumatising.

I struggled to find adequate support after I was released from hospital. From support groups to mental health to cardiac rehab - I had to figure it all out alone. I still don't have it all together.

And I get it, to some extent. When I was discharged from hospital I had no diagnosis. Everything was still in limbo. I didn't fit into a specific cardiology box with a plan and advice ready to go.

I have found and built my own support network over time. I joined Facebook groups for cardiac sarcoidosis, for ladies with heart disease, for congestive heart failure and for cardiac arrest survivors. I have found other ladies in New Zealand with cardiac sarcoidosis and we have formed a small informal support group for each other - it has been invaluable to have a one-to-one connection with someone going through the exact same thing as me. I have also gone for counselling with a lovely psychologist, which I can't recommend enough.

Feeling like an imposter

One of the groups I have found the most in common with is a cardiac arrest survivor support group. Cardiac arrest survivors have had a life altering event where their hearts went into ventricular fibrillation (VFib) and just stopped. They died. They woke up. They got an ICD. They might have a lot of challenges to overcome when they wake up. They tried to learn to live again, knowing what they know. Knowing they might not have been here.

I have had VFib 5 times since that first night in May. If it wasn't for my ICD, I would be dead. I would have had a cardiac arrest. I have lost consciousness and woken up alive 5 times, when I could have died. That is life altering in so many ways.

So do I consider myself as having had a cardiac arrest? No. And yes. I feel like if I had, some parts of my treatment would have been smoother and I would have been placed in a proper cardiac care plan for more than just my inflammation. And I also know if I had had a cardiac arrest, my life and recovery would be much harder. I feel like I am both part of that group, and an imposter. I have not suffered enough in some ways.

Don't get me wrong - the cardiac sarcoidosis support group is invaluable. I would be completely lost without it. But I sometimes feel that not everyone feels mortality in the same way, unless you have almost died.

Making my life count

I have struggled to continue living my life in the same way as before. I have struggled to find meaning in my life. I still don't think I have.

Before, I was a huge career girl. Work was my number one priority. It was how I defined myself. I have continued working. It has been hard to stay motivated. I have thought about whether my job is meaningful enough. About whether I would be doing it if I had a limited time left in this life. I sometimes wish I could do something more creative or more involved with children. Or to be able to do something in healthcare to really have an impact on people's lives. Paramedics have made such an impact on my life that I have seriously considered retraining as a paramedic.

I have tried to really make my family my number one priority now. I have found I can be a better mother and wife now that my energy levels are improved with my treatment. I want to spend as much time with my son as possible. I want to create as many memories as possible. But he is still young and pushing the boundaries sometimes. Sometimes I scold him, and I now feel so guilty as a parent when I do.

I have struggled with planning big trips overseas, and getting started with building our holiday home that we were planning to do before. The past few months have been better with this. It's hard to live life to the fullest, while worrying about the future.

This has turned into a bit of a morbid post. I don't feel that everyone with cardiac sarcoidosis will have this same journey, unless they have ongoing arrhythmias. Or maybe they do and we just all hide it really well from each other.