I have had APS for 10 years and was diagnosed after I had a DVT in my first pregnancy. I am now on Pregnancy number 4 and 8 weeks along. I have not had any miscarriages and the last two pregnancies I was started on heparin and aspirin as soon as I found out. I have since moved areas and feel that doctors and midwives are not treating me as 'high risk' and just wondered if I need to demand to see a consultant. I have been given a booking in appointment for 2 weeks time, with the midwife and that's all.
I'm wondering how soon into pregnancy... - Hughes Syndrome -...
Hughes Syndrome - APS Support
Hello, I would collate all paperwork from previous areas, if necessary ring up the secretary of old consultants and let them know, and see if they can release any letters to you... the secretaries will sometimes let you write to them by email, which they then pass on for you to relevant consultant. Then write to the new ones, (secretary trick again), copying everything in including to secretary of your GP. - new one. Also copy out anything useful on the Hughes Foundation Website.
It is very important that you start.. and follow your instincts. I did for all of mine... when a particular GP did not do it for me once, mine was away, and I was newly pregnant and actually going on holiday...I collated all evidence and went and sat at the hospital until they dealt with it. I have a history of blood clots, (multiple) in legs from first pregnancy... and am seronegative hughes.. never even knew back then in 1996 that I had Hughes...however I felt that I needed my fragmin injections started sooner rather than later. I went from the hospital straight to the airport! Armed with months worth of jabs, all then linked back into my original care. They can't ignore multiple paperwork!
Be polite, firm, and consistent and be armed with the evidence, you often have to train up new areas. Keep us posted. Mary x.
Do be careful and get yourself seen by a consultant, gathering paperwork etc as Mary says. Its time to get organised and put yourself and your baby as the top priority. Just because you moved areas doesnt mean your health should go un noticed.
Hope you get seen very soon and get things sorted out.
You will have to insist to be seen.
id start on baby aspirin (you can get from chemist over the counter) asap, and demand consultant apt,or heamotology appt asap for the heparin. Maybe even your GP could give you injections on prescriptions given your history? The first 8wks is when the placenta is developing i think so you should be on them from day 1 - i laways was as soon as i find out. Also ask for 5mg higher dose folic acid, anyone who is at risk of placenta prblems shold be on it good luck x
Wow, I agree, challenge them, take in info on APS and the risks during pregnancy etc and good luck and be well
Hi, thanks everyone for the advice. I'm going to see if I can get any info from my previous consultant as he was a specialist in APS pregnancies. I think you are probably right.....a lot of GP's and midwives have never heard of APS.
Welcome to the site, i would also say look at the Hughes Syndrome Foundation website and contact them they have a number of leaflets and they do have one specifically on pregnancy which you can show any midwife, nurse GP you are seeing hughes-syndrome.org
I too am 8 weeks pregnant but i am a warfarin user to have to be on clexane at the latest 6weeks in. I can only suggest the same as everyone above. I have my 1st scan on Friday to check my pregnancy is viable (this is my 8th pregnancy and I only have 1 child). Dreading it as my latest m/c was 9 week a but fingers crossed this is the pregnancy that will finish our family. Good luck with getting the support you need and fingers crossed for a happy and healthy pregnancy xxx hugs Kate xxx
I went on both heparin and aspirin from the moment I knew I was pregnant (after 3 miscarriages). Good luck to both of you, it's a nerve wracking time.
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