Megan’s bucket list

Hello My name is Megan, I’m 26 years old and live in North Lincolnshire with my husband James, our puppy Otis and two cats Rudy and Buddy. In October 2020 I was diagnosed with a life threatening blood clotting condition called Antiphospholipid syndrome (APS) which has led to me having four strokes, a heart attack, a pulmonary embolism and has meant I needed my first open heart surgery in Jan 2021 to fix my leaking valve, remove a mass from the right atrium of my heart and to close a hole in there too as well as a pulmonary endarterectomy procedure to remove the mass from my pulmonary artery. A second open heart surgery was then needed as my valve repair failed and needed a more complex repair just nine months after the first one. All of the above has happened in the space of two years.On the 22nd May 2023 I got the devastating news that my tricuspid valve has deteriorated a third time but now instead for a severe leak I have severe narrowing which means my heart isn’t supplying blood as well as it needs to. The consensus decision between many experts is to manage my symptoms with medication but not to fix the valve itself with further surgery as the risk of dying during the operation is far too high. This is a life limiting condition and no one knows how long I have left, there simply isn’t enough research because of how rare the condition is. Other valves within the heart can also experience stenosis (narrowing) and if left untreated the average survival rate is less than two years. I have been told to enjoy every day like it’s my last by my consultants.On the 11th December 2023 I seeked a second opinion from another hospital as to whether they’d be willing to operate on my heart in order to save my life after I was deemed inoperable by my current hospital due to the high mortality risk. Unfortunately the other hospital agreed that I am inoperable for many reasons, mainly being my Antiphospholipid syndrome massively increasing the risk of me not making it through another surgery. Without this surgery I will die as a result of the severe tricuspid stenosis I have. I have to live my life to the fullest and enjoy every day. Hearing those words again have truly broken me and I don’t know how to process it. I need to take time to ensure I spend the rest of my time doing things I love with people I love even more.I have a bucket list typed up on my phone that I’m determined to achieve as much as I can whilst I am still well enough to and would massively appreciate any help I can get along the way.