Talj’s Blog

On Monday 9th March I was scheduled to finally receive the operation I have been waiting over 3 years for.

At my meeting before my operation with my surgeon I informed him of my diagnosis of Hughes Syndrome. Without hesitation he said there was a high risk, because of Hughes and because I have had a previous DVT, that I could die having surgery today. There would also be significant high risk of another DVT or worse a pulmonary embolisim for the 3 and a half months my leg would be imobolised.

My surgeon, Mr Ritchie, said he was unable to make the decision for me but that I needed to think whether or not the pain I have is worth risking my life for. I asked him what he would do and he said he would NOT have the surgery. Needless to say by this point, especially as I was on my own, I didn’t know what to do and was in a bit of a state.

Mr Ritchie said I had about an hour to make my decision.

I called my Mum who didnt know what to do. I called my Dad who was just concerned that I would be on disability benefit for the rest of my life if I didn’t have the surgery…I was getting no clearer about what to do.

Then I spoke to MBF and he said he wouldn’t go ahead with it, the first person to offer me a decent answer.

After speaking to MBF I called the Lupus clinic and spoke to Professor Hughes, the guy who Hughes Syndrome is named after, and he said he wouldn’t have surgery unless it was a matter of life/death.

I also had a wonderful call from the other side of the world….thank you R for talking to me and giving me your opinion x

I then spoke with the surgeon again and got my Mum to chat with him as well…not that that was much use as Mum still didn’t know what to do and my surgeon refused to sway my decision either way.

I asked what else could be done if I didn’t have surgery and the answer is nothing Not even physio. I will probably walk with 2 walking sticks/crutches for the rest of my life

So, we are going to look at a special brace which would come about half way up my lower leg and will support my foot like the aircast boot did. It’s made by the same people and has a puffer thing to inflate/deflate depending on how my legs feeling. But, unlike the boot, I can wear a shoe over it (one foot will always be bigger than the other LOL).

I am also going to consider going back on crutches instead of walking sticks as that makes things easier and makes me walk slightly quicker (still not as fast as normal peoples slow pace though lol). I am looking for foldable ones with nice handles…found some which I like for £90 but will keep looking incase I havent found the best yet!

So, to cheer everyone up, here are some photos I have taken over the last few weeks…

Liverpool Metropolitan Cathedral…

Flowers…