Story
Hi all, me again. This year, for obvious reasons, I feel that I should try and raise a bit of cash for the Marfan Trust again.
By now, I think you all know the background of why I am doing this, I.E. I have Marfan Syndrome (which has killed 4 members of my family in their 40’s and I was originally told that I would be dead by my mid 40’s). As a result of having Marfan, my Aorta was growing close to the point of rupture / dissection, so in March 2025, my Aortic Root was replaced (a 6 hour op with my heart stopped and taken out). I had all sorts of problems after the op (Pnemonia / 2 collapsed lungs, Atrial fibrillation, Atrial Flutter, Heart Block etc)……and as a result, I had to have a Pacemaker fitted pretty swiftly.
Since my Op, I’ve worked with two lots of Cardio Rehab Physio’s (1. CP+R and 2. NHS) and they (and especially Lily Glendinning } have worked really hard to get me up and running again (literally). Personally, I need to run for my own mental health, but my surgeon and other specialists have insisted that i should keep running too and fitness wise, I am ahead of schedule. Albeit running when you know you have got a dodgy ticker can mess your head up a bit.
However, i now want to try and increase the awareness of Marfan Syndrome again, whilst also raising some much needed money for the Marfan Trust. In addition, I also want to prove to myself that I can still do these things.
Therefore, I have entered Run Norwich 10k on Sunday 7th Sept. Now, this time it comes with caveats - 1. Only once since my op in March have I managed to run further than 5k (and that was only a 6k that completely emptied my tank). 2. I have very limiting Heart Rate zones that I am allowed to run within (on Sunday my max heart rate allowed will be 121). Now, whilst my Blood Pressure and Heart Rate will be kept down by being on the maximum doseage of Losartan and a decent doseage of Bisoprolol (plus other medication), it’s still gonna be impossible to keep my heart rate below 121. It is also the first race that this Aorta has entered. Therefore, I will be running downhills, walking uphills and just generally crawling after 6k. So this ain’t gonna be no straight forward 10k.
Now, whilst my fitness is improving, I do have a few other lingering issues, such as tiredness, flashing in my eyes, dizziness, sleeping etc…. However,, my key issue at the moment is that on my last Echo in July, they discovered that my Aortic Valve is now leaking. So, I have another Echo in October to see if I need to go through it all again to have my Aortic Valve replaced…..
But eh, that is a worry for October, this is only September, so time for me to payback to the Marfan Trust, so if you’d like to sponsor me, I would be very grateful. It is going to be weird (and a bit emotional) walking parts of a race after years of running them all, so please go easy on me when I’m walking up Rose Lane……and please keep reminding me that my time doesn’t matter!!!!!!!
For further info, If you don’t already know what has happened to our family until now, you can find a summary below of what Marfan is, a background of how the Sadlers were diagnosed with Marfan and how it has affected us, plus a summary of the ups and downs of the op.
Lastly, can I thank you for reading this, and thus helping me to raise awareness of Marfan Syndrome. Thank you also if you have donated. I really, really do appreciate your support…….
Donations -
https://www.justgiving.com/page/stuart-sadler-2
What is Marfan Syndrome - https://www.marfantrust.org/pages/15-marfan-syndrome
The story of my op - https://www.facebook.com/share/p/14GdG6VNMJQ/