My name is Amy, I’m 32 and I had my surgery just over 2 months ago. I am happy to say that I am now pretty much back to normal and looking forward to going on holiday for a week soon!
My brother had the same surgery a few years ago and his was also a great success. In my case, I elected to have the surgery early as I had researched that in order to have a safe pregnancy, the trigger point measurement of the aortic valve is lowered to 4cm. As I was already at 4.1cm, it seemed sensible to just go for it.
The whole process took about a year and the staff at the Brompton were really accommodating in trying to schedule the operation at a time that suited me. When the day finally came, I felt like I was in safe hands!
I can remember going down to the operating theatre and feeling quite calm – possibly due to the 2 little tablets they gave me! I went in at 2pm and woke up at about 8pm that evening in the ICU ward. The nurses there were fantastic, every time I opened my eyes they were there with some water and making me feel at ease. The next few days were a bit of a blur but I didn’t feel too much pain due to the morphine clicker – my new best friend!
After 2 days I was moved back up to the ward and started to recover fairly quickly. I was able to get up and walk around a little bit and have showers. The wound itself didn’t hurt and I’d say the most pain seemed to come from my neck as I wasn’t used to sleeping on my back.
Three days later, I was ready to go home. The nurses were great and made sure that I had all my medication and they gave me a ‘patient passport’ to take to any appointments which made everything run really smoothly. I had a visit from Tal on my last day in hospital and it was great to hear about my operation and to find out that I was number 42!
Since then, I have just been taking it easy. I wasn’t able to lift or push anything for about 4 weeks, but now it’s not a problem although I’m still careful. My neck continued to be quite stiff and it took about 4 weeks before I could comfortably sleep on my side. I got myself a V shaped pillow which I still use now as it made sleeping so much easier!
The scar has healed well and I actually feel quite proud of it – it’s certainly a talking point! I recently went to a wedding and there was a girl at our table with the same scar and so we bonded over our heart surgery stories and then danced the night away until 2am!
I am eternally grateful that this option exists. I am on no medication other than one tablet to lower blood pressure and I only have to have check-ups once a year. I have joined a forum where other people with Marfans Syndrome can discuss things and it has made me realise how lucky my brother and I have been.
I have no plans to have children just yet, but I feel like it is one more obstacle out of the way. People seem to be amazed when I tell them I’ve just had heart surgery, but for me it’s been a really positive experience and I’m so glad I have had it done.