Hi all. I am newly diagnosed with Hughes Syndrome and am so confused about so many things. I will write properly very soon when I'm on the laptop but in a nutshell here's a bit about what's gone on....
I'm 31 and have just had my second stillborn daughter, Ella Rose, who was born on December 21st 2012. I was just over 24 weeks, I can not describe our heartbreak. We also lost another daughter to stillbirth early last year, Lilly-Mae.
The night before I had Ella, I developed a clot in my femoral artery. I had numerous infusions from then until mid January this year after a lengthy stay in hospital.
I had a check up yesterday, and the clots still there. They say they need to-do surgery, either.a.bypass or an operation to cut the nerves (I don't understand that opposite fully)
Has anyone any knowledge of these ops? They are only doing it as a last resort as I'm suffering terribly with lack of oxygen and blood to my leg, so painful.
I was only diagnosed after Ella, despite having a serious stroke at 27, my firstborn Chloe was born 10 weeks early due to my placenta being full of pls, filled by losing my girls.
I'm terrified to have surgery when I know Italian likely to make me clot more, and would just appreciate any general advice on the condition.
Thankyou for reading, I'm sorry this is rushed. Typing on my phone take forever!
Emma x
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Emmyloulaa
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Hi Emma I am so sorry you have had such an awful time, losing your Girls is really sad no one deserves that .I don't know anything about the operation, but I can understand the bypass I think must be like having a heart bypass I should think, improving blood supply etc, will improve the pain. Someone else on here will know, anyway just to say I am thinking of you and hope your leg gets better soon.
Hello, I am sorry you have had such a truly awful time, I hope the medical team around you have a full understanding of the condition and help this be prevented in the future. From what I have seen looking on the net, it would appear to be a straight forward surgical procedure, let me know if you need any further information. Please stay on here and draw some some support from other members, many like yourself have been through similar experiences, unfortunately. Best wishes to you. Mary F x
Nothing informative to add save my heart goes out to you on your loss and I hope you beat this latest hurdle, ( which seems to be a literal, as well as a figurative one.). Let us know how it goes.
And your phone typing skills certainly exceed mine!
no medical advice, just empathy. I lost my first two children at 32 and 30 weeks nearly 30 years ago. You carry them with you for the rest of your life, but it does get easier.. I now have two healthy boys in their 20s. Wishing you and your partner courage for the future. Stella
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