Thank you all for your support and advice. I regret I wasn't strong enough to take it. I am outraged at my Hemo but maybe I am just looking for someone to blame.
After I found out I was pregnant I was given an early appointment to see a hematologist. I was about 6 or 7 weeks pregnant. I was shocked to hear his verdict. He felt that the blood clots in my lungs in my early 20's were provoked and the APS positive blood work results were coincidental. None of my other symptoms are related blah blah blah I think its all in your head. He said I don't need to be on Heparin and told me to stop taking it. He took blood so he could run the tests again in his lab. I only had a couple injections left and when I ran out of heparin all 3 of my Dr's overseeing my pregnancy stood together. Both my GP and OB said the Hemo was knowledgeable and trusted his advice. I told them how I felt and what I thought. I said I hope he is right.
I went for my first ultrasound, only to find out that I am not 10 weeks pregnant. I had a missed miscarriage. The baby had no heartbeat and had stopped developing during the 7th week of pregnancy. That's right after I discontinued my heparin. The OB that gave me the news felt it may have been preventable, in the future I should probably be on Heparin. Today I saw my own OB, she said that there is nothing that could have been done to prevent this. Since it happened in the first trimester it falls under the "Normal Miscarriage" category and it is the outcome of about 20 % of all pregnancies. She felt taking heparin would not have prevented this. I want to know what my GP and Hemo will think about this if it will change his opinion in any way. Will he say this is just another coincidence? My blood has tested positive twice for APS, I am waiting for the results of the 3rd test.
I am crushed and in a lot of pain, both physically and emotionally but I'm not sure what hurts more. I am stuck in this pregnancy purgatory until tomorrow when I have a D&C.
She told me APS causes late pregnancy loss. If it was at 16 weeks or 20 something it would be considered possible that it was an APS related MC.
Unfortunately many of you have been through this. There is nothing that can be said or done to make it better. Only time will heal.
How much more do I have to go through to be treated for Hughes Syndrome? Will they do my autopsy and suddenly discover I have APS?
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SassyOne
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As far as im aware APS can cause miscarriage in any stage, its just that unless you have 3 early ones consecutively, or one late miscarriage only then are they prompted to find a reason why. As awful at it is if you lose one later on then APS is found and it ensures you are treated and could well prevent another miscarriage, for the poor souls who lose early on then they have to endure it three times before a test is done to find the reason why. In this day and age it is disgusting - and surely shouldnt be down to funding - a APS test costs as little as 35 quid. I would demand an appt with a consultant - not just a normal pregnancy doctor and ensure you will be consultant led and take aspirin as a precaution until a pregnancy is confirmed. Even if you have had positive tests only once in your lif then you should be taking heparin through each pregnancy as some peoples antibodies are only triggered in pregnancy and absent other times - im so sorry for your loss, and i am so angry for you that chances are still being taken with something so precious to us - i have faced the same negative treatment even at a specialist hospital - i wish youhe best of luck - and ill think of you tomorrow xx
I am sorry your doc's are so uneducated in APS... my wife lost 4 children also being treated with heparin... and full asprin dose... her OBGYN did state that this could happen and that even under taking heparin and asprin during pregnancy... but most misscarrages will happen during the first 10 months... At least we were given the heads up on this... pray that you can get through this - My wife has been diagnosed with APS since she was 16... my wife Jenni now deals with most advanced APS that is called CAPS... Still love her, no matter what happens!
Lynn13 suggests going to see Dr Khamashta at St Thomas'. This seems to be quite a frequent response on this site for anyone in the UK who has suffered with APS-ignorant doctors. I'd like to say that there are other doctors elsewhere who are knowledgeable about APS and pregnancy! We need to spread the word about these other locations.
I for one had great treatment at the Queen's Medical Centre in Nottingham throughout both my pregnancies, they had a specialist clinic and every appointment (I was seen monthly for the first trimester, then fortnightly for the rest and weekly for the last month) I was able to see both haematologists and obstetricians. This built up a great relationship. If I had a worry (for example, there was a day that I didn't feel the baby move) all I had to do was ring them and they would tell me to come straight down to the hospital for a scan. I was never made to feel like I was being difficult or awkward by any of the medical team. They were knowledgeable about APS, worked together, and fully supported me.
The Queens Medical Centre is a teaching hospital, and during one of my appointments I had a gang of trainee doctors around my bed being told about APS and pregnancy. If we all run off to London, these opportunities are going to be missed...
Its is widely known that APS can have devastating consequences in late pregnancy but i have had 6 first trimester and 1 second trimester loss all put down to APS. My only living child was low birth weight thanks to APS too... Good luck for the future run xx
Emma.... When were u at QMC last?? I had my daughter at QMC but the haematologist I saw left during my daughters pregnancy and the one they replaced her with only worked every other week so for the last trimester I didn't get to see her at all infact the only time I met her was once I had been discharged and returned for a follow up apt. I made the mistake of going to Derby for the most recent pregnancy which was a huge mistake but that was only because the Dr who had been soooo wonderful with my daughters pregnancy had left so i was unsure about where to go.. I have however had 8 pregnancy and only 1 positive outcomes so i'm heading down to London, but not St Thoms.. I'm going to St Mary's to the recurrent miscarriage clinic there xxx
My heart goes out to you! Only time will help to heal you. I feel that when we are pregnant our senses are so much more aware. I kept a journal during my first pregnancy, and repeatedly told my doctor that there was something wrong, and he kept telling me that everything was fine. Our son passed away at 7 months in utero. He had a cleft palate, cleft lip and only one kidney, but the doctors are saying that they doubt his death was APS related, which I was diagnosed after the loss. They weren't able to get a viable blood test, due to the long labor and delivery. I have had many 1st trimester miscarriages-again, "not related to APS". Unfortunately, a lot of doctors are so unaware of APS, and it really is hit or miss. Even now, I suffer from severe migraines, only on the left side of my head, and even have had two episodes where I had stroke-like symptoms (loss of words, etc), and again, "not related to APS". My husband and I both know it is all APS related, but the doctors won't firmly diagnose or treat until I've had a DVT or something similar. Like you, I wonder if they'll finally diagnose me during my autopsy.
Continue to push for what you think is correct; change doctors if you need to. We need to be advocates for our own health! Hopefully soon APS will be more well known and doctors will become more aware of it.
I am devastated on your behalf. All four of my MC's were 10-12 weeks apart. I was told repeatedly that it was coincidence, natural or that I should pray. (!?) After I found a progressive doctor here in Vancouver, (she was a hematologist doing a study on APS and recurrent miscarriages and I literally found her by fluke in the emergency room) I was on Heparin and aspirin. Got pregnant. Had my daughter.
I also had the dreaded 'missed miscarriage' and had to wait two full weeks before a D and C. It was the most emotionally painful 14 days of my life. Heal, cry, shriek and then come back and we'll find you a way to get to London. Enough is enough. XXX
Very sorry to hear this :(, very very sad....it's rubbish that they have treated you so badly, i have had 3 consecutive miscarriages in the first trimester, then a diagnosis of APS, I wish you all the best for the future, your not alone keep strong xx
Thank you again for all of your support. It breaks my heart to know so many of you have been through this so many times. I have been told that I need to have 3 consecutive miscarriages to "Qualify" and that my PE was provoked. I have been back to my GP he reassures me that the Hemo is one of the best in his field but agreed to try and arrange a second opinion with another hematologist. My GP feels that the PE was extensive (several clots) considering I was only in the hospital for 6 hours when I had the surgery & they didn't find any clots in my legs. Evidence is piling up I hope to have it
All resolved before we try to get pregnant again. The day my GP gave me the results of my second set of blood work I felt like I had finally been diagnosed and had some answers it made perfect sense and explained things all the way back to my childhood. The Hemo really derailed me now I have to get back on track.
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keep strong xx
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