Post thrombotic syndrome treatment

£399 of £65,000 goal

Raised by 26 people in 6 months
I have factor v Leiden mutation, and have suffered with several DVT’s 
In January of this year I had my top rib removed to try and help, unfortunately I’ve since developed a large blood clot in my jugular (neck) and subclavian (chest) veins 

Treatment here in the uk was unsuccessful and the blood clots are now too dangerous to remove, as it would be fatal 

These clots have caused swelling on my chest, mass veins showing on my chest, severe arm pain, hand and finger pain, neck pain, chest pain and much more, there is a huge risk with blood clots reaching the brain, heart and lungs, this would be life ending for anyone

I’ve been speaking to a specialist in Arizona who exclusively looks at post thrombotic syndrome, she is willing to take on my case and look to try and remove the clots safely

I’ve also been put in contact with a specialist in London who can hopefully take on my case as well, between them both there is a possibility I could have a much better prognosis

The jugular vein can hopefully be completly  eliminated as there are enough veins to bypass the blood flow, the subclavian vein is more problematic and some alternative treatments are being looked at

Initially I would like to go and meet with the doctor to go through my options and survival rates, if it’s possible, and i can raise the funds I can then look to start treatment 

In the event of raising more money than is needed, I would like to donate to the Thrombosis charity in the uk, who can hopefully one day help to advance the treatment options available and create more awareness of blood clotting disorders

Thank you for reading my story, any help is so greatly appreciated xx
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I’ve been very quiet in here ,as I was very ill over Christmas, I had some scans which show a small veneous thrombosis in my head, so I’ve been taking it easy. I’m also transitioning to a different blood thinner, as my twice daily injections are still enabling me to clot!
The money I’ve raised so far is going towards seeing the surgeon in London who can hopefully help me. I’ve been referred to see him on the NHS but the waiting list is very long, and as I’m getting sicker by the day, I’m seeing him privately
I can’t thank you all enough for your help on my journey so far, daily/weekly/fortnightly hospital visit provide a huge financial strain, so your support is really appreciated
Marie x
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£399 of £65,000 goal

Raised by 26 people in 6 months
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DC
£10
Dee Clarke
4 months ago
BM
£10
Bev Moody
4 months ago
£20
Anonymous
4 months ago
FH
£50
Fiona Hodder
5 months ago
£10
Anonymous
5 months ago
SV
£60
Samantha Vear
6 months ago
£10
Lyn Mcgauley
6 months ago
DC
£10
Denise Clarke
6 months ago
CS
£10
Cassie Stone
6 months ago
£10
Anonymous
6 months ago
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