I am sharing this as it may help someone who is going through a difficult time. I have been reading Brad Stulberg’s book, ‘the practice of groundedness’. It talks about sharing vulnerability as a way to connect and build trust. This has inspired me to talk about my journey.
In 2017 I was diagnosed with pulmonary vein stenosis (PVS). I have artrial fibrillation (AF) and to help address this I ended up having four ablations. The average number is two but I was still experiencing AF symptoms which meant that the medical team were keen to continue with ablations until I was symptom free. The number of ablations led to the onset of PVS.
I woke one morning, experiencing significant pain in my chest. It felt like I was having a heart attack. Whilst we waited for an ambulance, my wife and I spoke about our finances and children. I was struggling to breath and in pain, my heart beat was irregular. In my head I kept saying to myself ‘Just be here when the ambulance arrives’. I was really scared and genuinely thought I was at risk of dying.
The next day I was diagnosed with PVS. I was in heart failure and my left lung was filled with fluid. I was told that I might need a heart and lung transplant but the team wanted to see if the situation could be addressed by a cardiologist. I required emergency treatment.
Whilst I waited for treatment I started to read research around the condition. The reading was not good and this did not help my mental state. The condition is quite rare in adults and the rates of successful recovery were not high.
During this period of time I became very withdrawn and isolated myself from my family. Looking back at this time I can see that this was a self protection strategy. I felt if I was to die then by putting some distance between myself and my family would serve as a protective barrier.
There was a doctor in London who felt he could help me. He was a very experienced cardiologists and had treated a few PVS patients previously.
My first conversation with the doctor, just before the operation, was a difficult one. He asked me why was I there to see him? I responded positively, ‘I am here so you can fix my heart and lung’. His response shocked me. ‘You’re not understanding the situation you are in. I am here today to save your lung. If today’s treatment does not work then I will need to remove your lung’. I was shocked. This was not an option which I had discussed with my family. Due to distances and travelling, my family were not with me I was not sure how to explain this news to them via a phone call. How could I explain this situation to them? In the end I did not because I couldn’t. The operation was due to start within an hour and I needed to get my mind in a good place.
The operation had shown that both left pulmonary veins had been completely closed at the entry into the lung. The doctor was able to get the veins open but unable to put in place any longer term solution. I have had two further treatments during which the medical team were able to put a mega stent into my upper left pulmonary vein. They were unable to carry out a longer term solution with the lower left pulmonary vein. I remember coming round after the third operation and being told that they were unable to stent the lower vein in a similar way. My first emotion was devastation. I was hoping for a longer term fix.
The doctors final words to me were ‘it is not a question of if you will need this procedure again but when’. This has left me with the feeling of a ticking time bomb and uncertainty about the future.
Since the operations in 2017 I have struggled with PTSD. I was shocked to be diagnosed with PTSD. I thought that this was only something that soldiers experienced. I was having terrible nightmares. My sensitivity to risk was heightened to the point were I could not even take my children to a playground. My mind was constantly tell me that I was vulnerable, unwell and in need of further treatment. I had some very dark periods.
In 2019 things became almost too much. The PTSD, dark periods and feeling inadequate and vulnerable came to a point. I could not see my value or worth. I felt like a hindrance to my family, they would be better off without me. I made a plan. I was going to end my life. Dying would be easier than living. My family, friends and work would be better off without me.
In my work I have witnessed the impact that the loss of a parent can have on a young person. It was this knowledge that stopped my from carrying out my plans. My plan to end my life would involve a series of steps. This, I hoped, would give me time for the rational side of my mind to kick in and protect me.
To date, I still struggle and have very dark periods. I have learnt that in these times I have to be careful with myself and be more aware to control my dark thoughts. I feel that these could still potentially have the power to take me to a difficult place. I still get times when I see ending my life as the best option out of the situation.
I had always thought that I had a strong mind. I saw mental health as a weakness and something which only weak people suffered with. My beliefs on this have completely changed. Mental health problems can affected anyone. It is not about how strong you are. If you are struggling, reach out and seek help. If you think someone might be having difficulties then speak with them. If someone has a broken arm it is easy to see the problem. Mental health challenges are not visible in the same way. Be kind to each other, you never know what someone is dealing with.
Currently my physical situation is fairly stable. A recent test has shown my left lung usage is half that of the right one. The medical team are not too worried about this at the moment. They will monitor it to see when further treatment is needed.
My mental health is a daily, sometimes hourly battle. I am going to seek further professional help with this.
I have not shared this for sympathy. I know that there are many people who have far more serious issues to deal with. I hope that this helps someone to reach out for support or for someone to offer help to another person. I hope that is also shows that it is okay not to be okay.
Stay safe and be kind.