Sticky Blood-Hughes Syndrome Support
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When will my leg get better?

I've had quite a traumatic time and my story could take a while so I'll do a shortened version- I have aps and was diagnosed due to miscarriages and stillbirths and only seems to affect me during pregnancy- I somehow managed to get to 36 weeks relatively easily and been in clexane and aspirin to thin blood throughout- I ended up at 36 weeks with pain in my left calf and was diagnosed with a dvt and put on a treatment dose of clexane. As I was due to be induced at 37 weeks they put a filter in my vena cava vein to avoid the clot travelling and ended up having an emergency section as my platelets were so low. I'll fast forward to me having a heart attack and cardiomyopathy a week or so after the section as they think a clot was blocking my heart and ended up 4 weeks in hospital from the day I was diagnosed with the dvt! I'm now 5 weeks down the line and still my left leg is so swollen and my foot and ankle are huge so much so I can't get normal shoes on and it's really upsetting as I have so many other problems froM all the other things that went wrong it would be lovely to dress normally and enjoy my new baby! Any idea when my leg should stop being so swollen? I'm no longer on clexane I'm on a different thinner due to my heart meds and I wondered if that wasn't helping? Thanks avril

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Hi,

First of all "Congratulations to your baby!"

I understand that you want to enjoy and care for your baby. I do not know where you live and if there is a Specialist who knows our illness from previous patients taking care of you.

You need to have such a Doctor around you now so you get the best treatment incl the best anticoagulation. You talk of "different thinner due to heart meds".

Best wishes from Kerstin in Stockholm

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Avy, first and foremost congrats on your new baby! You've fought hard to have him or her👶🏻. This is another bump in the very chaotic road you've been traveling. Chin up, breathe in and out . Keep those feet elevated and don't cross your legs. Try to keep legs and toes moving whilst you are in bed and keep yourself hydrated. I'm so sorry you've had to experience all of this. I hope for things to now be on the upswing for you. Was the baby a boy or girl? What was the actual date of birth? What name have you chosen? I'm assuming the baby is healthy, I pray so🙏🏻. Much peace and love is being sent to you from me with a very strong hug. I hope you are now home with your new little family. Godspeed💕

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Hi - Im so sorry to her about your losses, Im afraid your story has been repeated by many of us. Having the DVT so close to the birth of your baby (Congratulations by the way), has obviously been traumatic. I guess my overwhelming question for you is are you under the care of an APS specialist? Its so important in your situation to have the view of someone who treats people with this disease daily. They can at least work with your cardiologist to sort this all out.

You say you are now on another anticoagulant, is that warfarin? I hope so because none of the newer oral anticoagulant would be appropriate in your case. Also if you are on warfarin, what is your INR? Have they taken out the filter in your vein yet and if not are they going to do so?

Please let us know how these things are going. x

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Many congratulations to you. My recommendation would be to discuss your situation with a APS specialist, which could also be a haematologist. Perhaps your GP could help find you a local specialist?

With good wishes,

Ros

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Hello, a big welcome to you, and congratulations regarding your baby. Firstly, where are you located, and do you have a Hughes Syndrome/APS managing your care? Are you using Warfarin now, and are you self testing, or going to the clinic to do your INR or a mixture of both. I really hope you have a lot of support from friends and family at this time, and also with your medical team. We have a list of specialists, (recommended ones), under pinned posts, over on the right hand side of the forum. Please do feel free to use our forum, so many on here have been in a similar situation to yours. MaryF

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Avril, Please reply

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I can see from previous posts you are in Scotland and were previously under Lesley regan. I agree with others you need a good specialist to treat you now.

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Aloha from Hawaii. ..

Congratulations on your baby!

I wasn't so lucky..stillbirth at 81/2 mos.

I've been in the hospital for 3 weeks to resolve a hugh clot in my left thigh...on heparin I V, followed by life-long warfarin. Also, I got Greenfield filter inserted to protect the lungs from embolism.

Good luck....and get a good doctor!

Kerstin from Hawaii

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I too had a vein filter. It was scheduled to be removed BEFORE 6 months as it is difficult to remove thereafter. The docs had a very difficult time removing it. I was semi conscious on the table when I heard the surgeon say: "Aw, sh*t" I mumbled as I asked if everything was OK. He told me I wasn't suppose to be that alert and my lights went out.

Subsequent to that event I have heard there is a recall of SOME of these devices. They can shed some of the spines which can then travel to other areas and cause difficulties. (http://www.sciencedirect.com/science/article/pii/S074152149570115X).

Here in the good old litigious US of A the TV ads announcing class action suites are prevalent. Check with your Doc. All the best.

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I have read that filters are now not recommended at all.

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I thought I read that too. That they are breaking apart!

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