When the miracle doesn't come

Tuesday, April 22nd, was a significant day as it marked the anniversary of my open-heart surgery 31 years ago, and it was also the day I was scheduled to have a MitraClip inserted into my heart valve.

For nearly two years, I had been waiting for the cardiology team to determine the best way to alleviate the symptoms. I underwent a TOE (Transoesophageal echocardiogram) so the cardiologist could measure my heart valve and assess if the procedure could proceed.

Everything seemed promising, and all that remained was to wait for funding and an appointment from the Bristol Heart Institute.

The day finally arrived. I was invited to stay overnight before the procedure and had my own room. I felt both nervous and excited, with a lingering worry about what would happen if the procedure couldn't be completed. Morning came, and I prepared myself. The hospital provided me with special socks with grips on the bottom and a gown. The anaesthesia experience was terrible; I felt my eyes rolling back and a rush of heat moving up my back to my head. It reminded me of a panic attack I had a few years ago. I focused on taking deep breaths to calm myself, and within seconds, I was unconscious.

After several hours under general anaesthesia, I awoke feeling sick and nauseous. Being neurodiverse, the smell of the oxygen mask was overwhelming. Still very drowsy, I asked if my mum had been called to the hospital, and I overheard the nurses saying she hadn't because there was a complication. They were waiting for the doctor to explain what had happened. As I waited, my throat was painfully sore, and I sipped water to ease the discomfort. Then the cardiologist came in to speak with me.

While I lay there, he explained that they couldn't attach the MitraClip to my heart valve. Since it wasn't attaching properly, there was a risk of it dislodging and moving into my lung. I wasn't sure how to feel, knowing there was always a risk it might not work. My next thought was that this marked the end of this chapter of waiting to be 'fixed,' even though it would have only slightly reduced the symptoms. I feel disappointed, but also this has brought clarity to start living within the capacity that I have.

Being chronically ill has been really hard as I am constantly balancing how much energy to spend, and maintaining friendships has been really hard as you are unable to do certain activities, and I don't think people really know how to handle illness.

I am not sure what the next steps are now, as the cardiologists will have to discuss my case and see if there was a reason why, and see if they can solve that issue.

At least they have images of my heart to see what is going on. The hope I have is that God has something better and He can use my story. Also, another thought that I had was whether the scars from this procedure feel wasted and the pain I went through, and I wonder if this is how Jesus feels. The nails, the whip marks are wasted when people choose to reject Him. I know it's nowhere near the pain, but I wonder if Jesus feels this.

I will forever advocate for people that need to be seen in church spaces, whether that is creating environments that are neurodiverse-friendly and accessible for people to feel welcomed and not a burden. We deserve to be understood and valued.