Just terrified😢

[Sarahals]

Hi everyone I am 16 weeks pregnant I was just recently diagnosed with aps...I have a healthy 7 year old son and lost my twins at 26 weeks in 2011 and lost another baby at 8 weeks in 2015 with no reasons why....I became pregnant again November 2016 my 12 week ultrasound went great baby was perfect this is before I was tested but my dr put me on aspirin also and with just my history my dr decided to test for aps which came back positive just a few days ago...I am now on daily lovanox injections and aspirin. I go to my specialist on the 22nd and don't know what to expect. Ps I don't have any underlying disease as I know of...I'm just so scared about it all.

[Wittycjt]

Welcome, breathe. You will be getting many responses soon. Where are you from?

[Sarahals in reply to Wittycjt]

Missouri

[KellyInTexas Administrator in reply to Sarahals]

Sarah,

I'm Kelly, from Texas! I had a few early trimester losses- before we know why. Many years ago. ( I'm now almost 48 with 2 children

I am now quite ill with all the other issues Hughes syndrome brings.

I'm hoping you have specialists in place now- your world must be a medical whirlwind.

I believe dr Wallace in Los Angeles could be a resource for you and your doctors where you live if need be. In Dr Hughes Jan blog he mentioned he had just been there working with him and his team and labs / etc. I know Dr Wallace is one of two ? That I know of?) specialists in the US. I would not recommend New York City HSS, from personal experience. My non APS specialized medical team ( doesn't really exist) in San Antonio Texas suggested getting APS expertise help on board in my management and tossed around words such as Mayo and Cleveland clinics, they were just wondering if they even specialized in APS. From my understanding, they have very good rheum departments, no doubt. But as far as actual specializing in APS and evaluating criteria for diagnostic inclusion , they are not always congruent with the Hughes "gold standard".

From reading Professor Hughes January Blog, you might look at Professor Wallace in LA if you need additional expertise. I made a decision between NYC and LA, it was uninformed. I chose NYC simply because our daughter studies in Princeton and we have a house there- 45 min by train to NYC. Easy. No hotels. This was about 2 months ago. I wish I would have known then what I know now.

I'm hoping you don't need this info because you have everything all worked out by now! It's amazing what the proper diagnosis can do to smooth things out, and provide beautiful outcomes!

All the best to you,

Kelly

[Sarahals in reply to Wittycjt]

Thank you.

[Oliversmum]

Hi, I too am in a similar position as you. My first pregnancy was fine and resulted in my lovely little boy. I then went onto have two first trimester losses. I pushed for tests and found to have aps.

I am currently 17 weeks and 5 days pregnant. On aspirin only as like you I have no other symptoms (clots etc), but being closely monitored; which is very reassuring to say the least.

The fact that your dr has put you on injections is fantastic! And your outlook is great. There are soooo many sucess stories - which I'm sure will soon come flooding in.

I know the anxiety that you are feeling at the moment, but what has calmed me is the care that I am receiving. I live in London and the NHS have been great since being diagnosed. I only have to mention the slightest concern and my midwife is more then happy to see me to listen to heartbeat to reassure me. Growth scans have been ordered and a special scan to measure the blood flow form me to baby.

Voice your concerns no matter how slight and I'm sure you will be heard given your diagnosis, and makes sure ALL medical staff you deal with know you have APS. Once you start to feel baby that will help no end.

I wish you the very best of luck for an uneventful and very successful pregnancy. It does happen all the time with the right treatment - so there's no reason that can't happen for you.

Chin up! Much love xx

[Marta37]

Hi all, I am in a similar situation. I have the antibodies positive but have never had a cloth or suffered a muscarrige. For this reasons doctors say that I might not have the syndrome but only the positive antibodies. I am not that convinced as the reason why I did not have miscarriages is that I could not get pregnant (o had to go through 3 cycles of ivf to get to this point). I was on both aspirin and fragmin injections but my doctor in the U.K. Wants me to stop the injections as they say there is no reasons to keep taking it and that they could increase the risk of miscarriage. I am from Italy and my doctors there disagree and would want me to continue at least till I am 24 weeks. I have Lupus reynaud syndrome too. I would follow my Italian doctors' advice but feel uncomfortable taking medicine without the approval of my doctors in the uk.

I think it is a really good thing that you are both on aspirin and injections. I wish you both and healthy pregnancy

[Oliversmum in reply to Marta37]

Hi Marta, I am under a haematologist at guys. They are very reluctant to give me the injections and believe me i have pushed for them.

However on seeing a very compassionate registrar on my last visit at 13 weeks he pointed out to me that it is a very thin line we are walking and the injections could cause me to bleed and lose the baby that way. For me personally at this I HAD to listen I have had a bleeding episode in the past. My platelet count is on he low side to 147 and I bruise easily.

Having said this I am being closely monitored and if growth should slow or other complications arise they will add the injections.

The policy at guys seems to be try a pregnancy with aspirin and if that pregnancy fails then they will try both next time. Which I agree seems completely unfair and cold hearted - their not the one fighting for the baby. But it's not all that black and white - as I'm finding out. And there are exceptions to the rules.

Maybe ask your consultant to repeat he tests now that you are pregnant and see what your levels are and take things from there.

Your in a really hard situation and I wish you lots of luck. But listen to your body and instincts. only you know how you feel taking both.

[Marta37]

I have been seen at st Thomas hospital in the high risk clinic. They are familiar with ladies with lupus as guys also hosts the lupus unit. Do you think I am in good hands? I am worried as doctors in Italy feel that it would be important for me to keep taking the fragmin injections

[Marta37]

Hi Olivermum

Thank you very much for your kind message. I really appreciate it. I am also relieved to hear that you have spoken with someone who agreed on the risk of heparin. I am only happy to stop if there are risk. I used to have very low platelets too. How many weeks are you? Are you seen at at Thomas for your pregnancy or somewhere else?

[Oliversmum in reply to Marta37]

Your more then welcome. The whole thing is just horrible and it's hard for others that don't have APS to understand.

I am currently 17 weeks 5 days with an active little one in my tummy. The movement really helps keeps me calm to be honest. But there are reasons they do certain things at certain times. I'm starting to get that.

I have two consultants. My obstetric consultant is at my local hospital where I will give birth. And my haematologist is at guys. Guys and Thomas' are linked.

guysandstthomas.nhs.uk/our-...

That is a link about my consultant. As you can see she specialises in obstetric haematology and antiphospholipid pregnancy. And she is unwavering, I definitely think she's knows what she's talking about although she can be blunt and cutting at times. Especially when all you want to hear is take this and it will all be ok.

Are you unhappy with your consultant? Or just afraid to stop the injections? How far along are you now?

[Twadd]

May I also say how sorry I am for your losses and congratulations on your pregnancy.

I lost babies too but quite a few years ago and before APS was better understood. I am sure with the correct specialist treatment and the monitoring you are having, yours and baby's outcome will be so much better. I had a healthy baby boy at full term in the end even though all the way they were waiting and watching to deliver by emergency section the moment anything looked wrong. I has scans fortnightly and also stayed in hospital quite a lot during my pregnancy. ( 1980s mind you).

Please try to relax more, they know so much more about this now days and it sounds like they are watching you well. Good luck and keep us posted.

[a_schaider]

Sorry that you are having to go through all of this. I am 55 and have two boys 19 and 16. I also learned about my anti-phospholipid antibodies during my pregnancies back in 1996 - 2000. I had five miscarriages in total. Initially, I was put in contact with a Fertility Specialist when I was unable to maintain a pregnancy, and it was this doctor who put me on daily baby aspirin and two injections of heparin per day. We did this for the first four months of the pregnancy. And I delivered a 7 pound boy via C-section. Even to this day, an APS diagnosis has never been communicated to me. In fact, the OB who delivered my first son told me that my numbers were on the border and probably I didn't have to worry. So I stopped taking all medications and again I had miscarriages, so I put myself on baby aspirin and heparin injections (my husband is an Emergency Physician) and with this I stayed pregnant. But with this second pregnancy, I was not as disciplined with my anti-coagulants and I stopped them after only 3 months. Towards the end of my pregnancy I started having ocular migraines. I would lose part of my vision for 15 min. This happened every day towards the end of my pregnancy. When I went to have the baby's chord blood banked, they couldn't find any blood to bank. My second son was born via scheduled c-section full term weighing only 5 pounds. Three weeks after delivering, I developed an ileus and was rushed back to the hospital. They found that I had clotted off my pelvic vein and the clot had travelled to my inferior vena cava. The clot had become infected and I had Deep Vein Thrombophlebitis. After this incident, they did a full work up on me and they found I was positive for Anti-Phospholipid Antibody, Protein C deficiency, AntiCardiolipin, and Lupus anticoagulant. I recovered with home IV antibiotics and Coumadin. They took me off of Coumadin after 6 months. Needless to say, I was one tired mom with a 3 year old and a newborn baby. But I survived. Even with all of these things that happened to me, no doctor has ever told me that I need to be on Coumadin and aspirin for the rest of my life until this past year. I wish I had known earlier about my APS diagnosis. So try not to worry, it sounds like your doctor is pursuing the proper course. I know its not easy to give yourself those injections and to get all bruised, but the longer you can do it the better the outcome.

[Peecue]

It's ok to admit being scared, I used to be a Midwife and I can honestly say that going through any pregnancy without a worry is not normal. Having lost twins you both have a right to be very scared, but thank Heavens someone somewhere had the initiative to test and the result was treatment. I am so thankful we live in an age where tests are done and for some treatments are available. Let your Drs and midwives know that you are scared is a positive thing as they can support you if they know. Good luck for now and the future and may your new baby bring you renewed happiness amidst the years that you all grow together x