I write this blog on the day that marks one year since I had my first major surgery. 1 year since my life was turned upside down and I couldn't see a light at the end of the tunnel. Before that day though I need to take you back to when I found out about my diagnosis. I mentioned it in my first blog but wanted to go back and talk about it further.
Before I was diagnosed I had gone back and forth to my GP for months before being referred to the hypertension clinic. I had to wait 3-4 months because of the COVID backlog, which I understood. In my mind my case wasn't a high priority so I was happy for people to be seen before me.
In my first appointment I had blood pressure checks, blood tests and was fitted with a 24 hour blood pressure monitor. At first I thought I wouldn't sleep that night, but surprisingly i wasn't woken up at all by the cuff.
The next day I returned the monitor, got more blood tests done and found out the results of the monitoring. My systolic blood pressure (top number) was sitting at 150 during the day and 140 overnight. I knew that wasn't good, especially for someone of my age. Further testing and scans revealed critical renal artery stenosis, which occurs in 1% of people with NF1.
Within 2 weeks of the diagnosis I had my pre-operative assessment and my surgery date was booked. On February 10th 2021 I woke up ridiculously early to be at the hospital for the morning admissions list. I was beyond nervous as I'd never had a major surgery before, let alone a surgery whilst wide awake! Waiting for the surgery felt like an eternity, and when it was finally my time to go back my nerves went through the roof once again.
Thankfully all the staff were absolutely incredible at explaining everything to me and calming my nerves. When everything had been prepped and they were ready to start the surgery my nerves and fears started going crazy again so I gratefully accepted the sedation and painkillers they offered me.
I didn't really feel much during the procedure apart from the local anaesthetic and a few strange sensations when my artery was being opened up. The most surprising thing was turning to look at my arm after the local anaesthetic thinking I could watch them put the tube in to find the tube was already in. This is a sight I will always remember. The rest of the surgery went well and there were no complications. Pulling the tube out was and still is the most painful thing I have ever experienced (the bruise that lasted for a month proves that!).
Post op, my arm was very stiff and sore for a few weeks and going back to placement was difficult. I was paranoid that if I knocked it in any way it would open up the wound and it would start bleeding again. Thankfully nothing happened and I was fully healed and back to normal within the month.
Fast forward to now- my blood pressure has been normal ever since the surgery, I'm keeping an eye on my blood pressure weekly, and my team are now seeing me every 6 months to ensure my artery isn't regressing back to its closed state. The risk of that will always be there, but instead of dwelling on that thought I'm doing my best to move forward with my life and not take any day for granted.