16 December Update

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I meant to update much sooner but the headaches made this difficult. Thanks to everyone who has sent me messages over the last month or so, sorry if I have not replied, I do appreciate all the supportive comments 🙂

Following my last update I had a CT and MRI of my head which showed that there wasn’t something else causing my headaches. I was discharged from emergency with pain relief and a plan to continue Warfarin (blood thinner) for 3 months.

I also found out that there was a clotting disorder in the family, and I was tested for these, and it turns out I have a Factor V Leiden mutation (5% of people have this). This means I am 8 times more likely than normal to have a clot. In combination with the pill (which increases the chance of a clot by 3-4 times) this means I am 35 times more likely to have a clot. I have now stopped the pill as the risk is too high, especially with things like picc lines or port tubing in my veins.

I have now been on blood thinners for 7 weeks and I think the headaches are about the same. There are good days and bad days so it is hard to say exactly but I still need panadeine forte daily. Some days I need endone when the headaches are particularly bad. The other neurological symptoms have improved (difficulty thinking/focussing, difficulty with short term memory) but I still notice these daily. I still feel a very strong pressure/discomfort with bending over, this has not improved if anything I think it is worse now.

Overall this means I have basically been lying in bed or sitting in bed most of the day, with brief activity but I have not been able to do anything useful like uni work.

It was hoped that I would have improved more by now (just over 1/2 way through the 3 months of planned Warfarin), so I am having balloon dilatation of my superior vena cava tomorrow. It is thought that there may be a clot in a stenotic/narrowed area of my SVC. The balloon dilatation will hopefully widen this so blood can flow through again to my heart. Several of these procedures may be needed and I may still need blood thinners. I am currently in hospital waiting for the procedure tomorrow so I will try harder to update sooner than last time!

I have added some photos below showing my puffy face since April:

July      September

The swelling varies a little, sometimes it has been mostly my eyes, sometimes my whole face, sometimes my neck.

January

This is what I normally look like, taken January this year.

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