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Thread: Baby Lost - Heart Broken (Factor V Leiden responsible)

  1. #19

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    Dear KAB,



    I am very glad that you are finding some solace at this website, and have been able to talk about your experience with us. I have been reading your discussions with Tootie and the others, but not always posting because having not been through the experience of miscarriage let alone one so late in the course, it is difficult to offer you much more than a kind word.

    I am very glad that you have some answers from your doctors, even though they aren't the definitive answers you seek. I agress with Tootie that seeing a specialist will be the best way forwards. As I said to you in my earlier post seeing a haematologist (for the FV Leiden deficiency) and an obstetrician (to help you plan your pregnancy) is a very good idea. You will get to hear the opinion of both and hopefully this will help you decide which road to take.

    On behalf of my profession, I am really sorry that you aren't getting a straight answer about which treatment to take. As per my earlier post, because the increase in risk of miscarriage is 'only' (and I am sorry to use this word) 2 - 3% if you are a FV Leiden carrier, it is generally not 'pushed' onto women to have heparin, because there is no guarantee that you will suffer another miscarriage. You may have a completely normal next pregnancy, and aspirin alone may suffice. The role of heparin in pregnancy is not fully 'researched', that it the evidence is not out there that says every woman who has had a miscarriage and has FVL should have heparin and thus we don't recommend it straight away. If however, a woman has repeated miscarriages and particularly if she has tried aspirin, then heparin is the next, stronger option.

    Having heparin is not without risks, particularly in the form of bleeding and also the development of allergy which destroys your platelets. The main issue of course is during the birth as it does increase risk of peripartum or postpartum bleed which may require transfusion.

    I guess in todays litigatious society we are taught from med school that we cannot force our opinions onto patients, we can recommend what the options are and the risks/benefits of each, however the final choice is up to the patient.

    I know the above may not help you in making your decision, and I too would find that the 2-3% increase in risk unacceptable (I finally understand all this now that I am trying to conceive my own child) and so if I were your doctor I would not disway you from having heparin.

    Administration is not very difficult - it is given via a very fine needle under the skin of your tummy, like a diabetic would take their insulin and can be done once or twice per day.

    I am happy to help in whatever way I can.

    To change topics, I love the beatiful ways you have rememberd your daughter, it was very touching to read.

    Love
    Gabby

  2. #20

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    Hi Gabby,

    Thanks for your message.

    My doc is not saying that he doesnt think that i shouldnt take the heparin. I asked him if it was him and his wife knowing what i have been through what would he do. He said that he would try the Aspirin first. Im so confused. I just dont want to make the wrong choice.

    Like i said before i am in two minds. I guess i am worried that if i take the asprin only that i will lose another baby. I cant deal with that. But i am also aware that there is no 100% guarantee in any pregnancy and that my doc says that i could take the heparin and i may still miscarry for other reasons.

    He also says that if i took asprin this would reduce the increased chance of miscarriage back to the risk of any normal woman? Do you agree with this?

    I am just not sure if i should trust Aspirin with something so delicate (and stay sane for 40 weeks). This is my life not just a try and see thing. That bit of a vent is not directed at you just the way that my doc delivered the info.

    Sorry one more question. I asked my doc what was the difference between Aspirin and Heparin. He says that they attempt to stop clotting in two different ways. Aspirin is proven to increase the chances of a positive outcome in clotting disorders in pregnancy. Heparin is proven to be more effective than asprin in normal clotting scenario's (not to do with pregnancy) and that there is currently no research to suggest that Heparin will give me a better outcome than Asprin. Then on the other hand he says that if they managed to pick up a clot via ultrasound (while i am only on aspirin) that they would treat it with the Heparin. So why not be on the treatment to start with??? ](*,)

    Sorry so many questions Thanks again so much for your input

    Kab

  3. #21

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    Hi KAB,

    Aargh I hate it that some doctors don't take you seriously until you have had 3 losses!! They don't seem to realise the stress and trauma you have to go thru, wondering if you will m/c again.

    I don't know much about heparin, but I hope that you can get some answers from the specialist. It is so wrong that they have left the entire decision up to you. If you do decide to go with the heparin, from what I've read on the net by people who use it, it isn't that difficult for their DHs or even themselves to inject it. If you Google it you'll find lots of handy hints on how to do it.

    The things that you have done to remember Katelyn by sound lovely. I am in the process of making a little sign for our angels as well. We've made a bit of a memorial for them in our garden and I'm going to use a wood burning tool to write their names on a little sign to put out there.

    All the best!

  4. #22

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    Hi Angel,

    The wood burning tool sounds lovely. It is so important to do these things as our little ones are miracles in their own right.

    I cant believe it about the whole 3 loss thing either. My doc actually said to me the other day again that they usually dont investigate until after 3. I was like i know that but you have and we found something!!!! It was my ob that ordered the tests because i asked him. Its not that my doc isnt understanding or caring its just that mindset of 3. I guess that i probably expect a bit much from him sometimes. I must remember that medicine is still a science and they dont know everything yet.

    Sarah

  5. #23

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    Hi Guys

    Me again

    I just wanted to say that i didnt use my name in the start because i really didnt expect to receive so much support.

    So anyway my name is Sarah.
    [/url]

  6. #24

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    Hey Sarah

    We were lucky that our OB wanted to do some tests after the 2nd m/c (mainly because he thought that it was odd that we got to see the heartbeat twice before things went wrong). There was no way that I wanted to wait for another m/c to do something about it!

    I think attitudes are starting to change about the whole 'no testing until after 3 losses' thing, or at least they are over in the U.S anyway, so hopefully things won't take too long in Australia as well. They used to say that even after 2 losses the chances of finding something wrong were still really low. I'm not sure about after one loss, but recent studies are finding that there isn't much difference between 2 and 3 losses as far as finding something wrong with tests IYKWIM.

  7. #25

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    Dear Sarah (KAB),

    It really is hard to know which way to go isn't it?

    I will try and answer your questions:

    Your Dr is absolutely right in saying that aspirin and heparin work by blocking different parts of the clotting system. An easy way of thinking about it is that aspirin stops platelets from sticking to each other and the only way to reverse that is to make new platelets (takes 7 days), that is why anyone having an operation is asked to stop taking aspirin a week before.

    Heparin on the other hand works against clotting factors in your blood, these are things that accentuate the formation of a clot and let it get out of control.

    The big difference between aspirin and heparin is that heparin can 'dissolve' a clot whereas aspirin cannot. This is why if you still developed a clot despite being on aspirin, heparin would be added to dissolve and stabilise it.

    Aspirin in making your blood less likely to form a clot because the platelets aren't as sticky to each other is the mainstay of treatment for anyone with clotting disorders, not just pregnant women. I would agree that taking aspirin alone will reduce your chance of miscarriage because of a clot to that of a normal woman. But as you yourself have said it does not remove the risk completely.

    Taking both aspirin and heparin is like taking 2 drugs that do the same thing just by different mechanism with the additional benefit of disolving any clot that may form despite the aspirin.

    I am sorry if this explanation is a bit repetitive or a bit simple, but it is just the way that I would think about it. Your doctor is probably also considering the issue of safety in pregnancy, not from the directly taking the drug but the potential risks of bleeding and that includes bleeding into the placenta...

    Your obstetrician and haematologist will be the best people to talk to rather than your GP (no disrespect intended) mainly because they deal with these diseases more commonly than your GP and undoubtedly will be able to tell you about the kind of successes / complications they have seen with these treatments. Rest assured though that healthy pregnancies do happen and will happen for you too.

    Let me know if this doesn't make sense.

    Love
    Gabby

  8. #26

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    Angel,

    Have you had the results from any of your tests? If so i hope that the results were all good.


    Gabby,

    Thank you so much. It is great to know that i am on the right track with understanding the disorder. I think the more that i can understand the better i can make decisions and deal with it.

    My doc hasnt really said that there are any negative side effects of taking the heparin besides that my blood would have to be monitored to make sure it is not getting too thin (so that i dont bleed internally). You scare me a bit when you say bleed into the placenta.....Am i right to think that if my blood was monitored that would reduce the risks?

    I think that i will also try to see the OB who delivered Katelyn who originally recommended the Aspirin. Just to get his thoughts and maybe i can get into see him a bit quicker.

    Does Heparin work as well as Aspirin to stop the clot forming in the first place?

    Thank you again, your answers are putting my mind to rest a bit more.

    Love Sarah

  9. #27

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    Hi Sarah,

    I don't mean to scare you, I am sorry.

    You are right though in saying that if you have your blood monitored to ensure it is not 'too' thin this will lower the risk. Bleeding into the placenta is just like bleeding internally. I am sorry to have not worded it better.

    Its hard to compare the 'effectiveness' at stopping clotting btwn heparin and aspirin because they work in such different ways. Aspirin just makes the platelets less sticky whereas the heparin makes the environment less favourable for clot formation. So in this way both are as effective as the other however in combination they are very effective. Does this kind of answer your question??

    I think its an excellent idea that you see the obstetrician who delivered Katelyn for you and ensured you had some tests done in the first place. I have no doubt that he will see you quickly. (The hardest thing in making any appointment with a doctor is getting through our secretaries, and my advice if they give you any grief is to ask to speak to him/her directly or leave your name and number to be called back).

    I am happy to answer any question, any time so don't worry, and please let us know how you go at the doctors.

    Love
    Gabby O

  10. #28

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    Hey Sarah,

    We have an OB appt next week, so we will find out the results then. I am in two minds as to whether or not I want something to come back on the tests. If they are clear then that is good, but if there is something wrong then maybe they can fix it and prevent another m/c. What other tests did you have done after your m/c?

    I hope the time flies by for your specialist appt. I've always hated the waiting time to get into see doctors! LOL.

  11. #29

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    Hi again Gabby,

    You didnt make me panic just a little frightened and i am used to that now days so please dont appologise. I just appreciate your help.

    I will let you know how i go with making an appointment. Do you think that FVL is a big deal? My GP seems to think that it doesnt warrant too much concern now that it has been identified. That doesnt mean that he doesnt understand my concern more that he is thrilled that we can find something to work with rather than leaving it unexplained. He also says that next time i will be considered borderline high risk, because with medication my chances of a healthy full term pregnancy are very good. I will have shared care between him and the OB. He says that i can see him anytime - if he is booked out and i am stressed he wants me to talk to the nurse and she will fit me in so i am very pleased that he gave me permission to do that and i wont abuse it well i will try not to. The next preg is going to be full of anxiety and i am a very (overly) anxious person normally so it is not good.

    Sorry i am picking your brains its just that you are making me feel much more positive about FVL and our chances in the future. Katelyn's death was the worst thing that has ever happened to me. As i was 18 weeks when she was delivered my whole town new i was preg and if they didnt they certaintly know now that i lost her. I miss her so much. I guess this is why i want to have another baby so desperately because i feel lonely in my own body. Even though there was so much pain involved in her death i still think it is a miracle that she was here at all and i do feel blessed that i had her even if our time together was too short. At least with being 18 weeks i had the chance to form some happy memories of ultrasounds etc. Things didnt gradually decline all my pregnancy results were very positive until the day we were told that she had passed away.

    Hope things are going well for you.

    Love Sarah

  12. #30

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    Hey Angel,

    I dont really know about the other tests that we had. I was kind of in the frame of mind - just take the blood and tell me all about it if there is something there. I think at the time i was still in too much shock to think about what it all might mean. All i could think about was Katelyn and that nothing could bring her back. Even when they told me about the FVL i was so angry that she may have been saved by taking Aspirin. You can buy it in the supermarket. :smt013 This is nobody's fault of course but it hurt alot.

    I had 12 viles of blood taken in one go and i can give you the names off the pathology form if you like but i dont know what they mean.

    Good luck next week i will be thinking of you and crossing my fingers that whatever the result you will be happy with it. Please keep in touch in the meantime.

    Sarah

  13. #31

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    Hi Sarah,

    Not to worry, I don't mind you 'picking' my brains, at all.

    FVLeiden is 'not a big deal' in terms of your long term health. It will not stop you from living life to fullest with your family or anything else you may choose to do. It is however a big deal in terms of what has happened.

    Through all that has happened though, it is good that it has been identified in you, because it does place you at an increased risk of having clots even when not pregnant. That is you should think about precautions when you go on long flights, long car trips etc, as well as probably not being suitable for the oral contraceptive pill in the future. As you probably know a clot in the leg (which is the commonest consequence) can 'move' and cause problems elsewhere. All the above things (and there are others) put anyone at a risk of getting a clot but with the additive effect of FVL you are 3-4x more likely than the average to get one. So no, it won't 'change' your life, rather make you more aware and careful about some situations in the future.

    The set of blood test with the 12 vials would have been a thrombophilia screen which tests for 12 different things in your blood that can lead to clotting disorders. Some of the tests need a whole tube of blood to be carried out so that is why so much.

    Angel, I would imagine that with 2 m/c already, your Dr would want to do this series of blood tests. It also tests for antiphospholipid etc. disorders.

    Hope this helps.

    Love
    Gabby

  14. #32
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    KAB,

    I am having the same delimma as you. I have only had first trimester losses, but I have had a few. I am only low positive for cardiolipin antibodies which cause clotting so he just wanted me to take aspirin. I am freaking out too, really scared, as everything I have read says aspirin and heparin together work much better than aspirin alone for antiphospholipid syndrome (APS). I have spoken to two women on the pregnancy and APS forum who have both has 2nd trimester losses while on aspirin, and they were only low positive. I do know that levels can fluctuate and mine was almost in the mod level, so I am afraid in might jump there in the next preg and I feel like it needs to be monitored. I don't know if I could cope with a second trimester loss after everything we have been through already. I just don't believe it is a trial and error process, ie. if I have a 2nd tri loss, then we try heparin, I really think I have had enough m/cs and I don't want to do trial and error. I think sometimes the huge gravity of the potential of another loss is not takenly seriously enough by the medical profession. I have just changed obs and this one is a gem and we have scheduled a chat tomorrow by phone, so hopefully he will allay my fears. I feel like I am being paranoid, but I also want to know I have done everything possible to ensure the best possible outcome, and I am willing to risk the possible negatives of heparin if I can have a healthy baby. I do know that in terms of APS, most of the research recommend heparin and aspirin after 3 m/cs or 1 2nd tri loss. I don't know what the research says on Factor V. Wishing you strength in your investigations and hoping that you find a place (and I do too) that we feel comfortable in, that we are getting to best care.

    Thankyou too for sharing what you have done for your little Katelyn. We also planted a tree, a native called a tiny tot for our moonbeam and I have collected other little things for our other ones. It is so important to honour our little ones, we all know here that they will never be forgotten, but it is also OK to move on. You gave Katelyn the journey that she needed/ choose in this lifetime and I am sure she would want you to have happiness in your lives and make space for another soul to come to you.

    Take care, Meg

  15. #33

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    Hi Sarah,

    It is definitely understandable why you were angry when they told you about the FVL. Had been able to find out it beforehand it would have been such a simple thing to take a baby aspirin a day to prevent such an awful tragedy, and I guess that is probably something you dwell on. Like you said, it's no one's fault, but I bet it'd help sometimes if you could have someone/something to blame that you could take all your frustrations out on!

    Wow, 12 vials of blood taken in one go! Sounds like they practically drained you dry! LOL.

    Gabby, yeah, I think my OB has requested about 4 tests to start with, mainly auto-immune ones I think (um... AFN, lupus a/c, anticardiolipin antibodies, & TSH).

  16. #34

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    Hi Ladies,

    I am not having a very good day today. Its 10 weeks since we found out that Katelyn had passed away. I had a bit of a phobia about wearing the same work clothes that i wore on the day that we found out. I decided i have to over come that they are just clothes so i am wearing them today and it is a bit funny. (By the way they are not maternity i was using a belly belt) Obviously they fit a lot different to when i was wearing them 18 weeks pregnant. There is nothing else to say but i miss her so much it hurts.

    I had a much better than normal day yesterday after talking to Gabby because she helped me to know that i am understanding the disorder correctly and am going down the best path possible at this point in time. To Gabby - I cant thank you enough for that reassurance. I know that things may not go my way (everything crossed that they do) but at least i have given everything the best shot.

    Meg, Thanks so much for your kind thoughts about Katelyn wanting me to be happy and welcome another soul. I hope that this is true because i am sure that she knows how much we love her and that she would want us to have another baby to give some more love to. Having another baby wont make me love her or miss her any less and i think that she understands this, i feel that the bond that we had when she was alive has continued. It is a hard decision isnt it - what course of treatment should we take. At this point in time (without speaking directly to the OB and Specialist in Pregnancy Complications) that i need to do the most possible so i will be taking the heparin. I figure i have to get through 40 weeks in the best possible frame of mind and once the medication decision has been made then i can feel comfortable that i have done all i can and move on - i am sure there are going to be hundreds of other things to worry me on a daily basis. Let me know how you go with your phone appointment.

    Angel - Yeah my arm was pretty sore after the blood tests - but it is all for a very good cause. I guess that is why i am not too concerned with injecting the heparin because if i get a healthly baby then i would cut both my legs off if you know what i mean.

    Well wishing you all a happy day today.

    Love Sarah

  17. #35

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    Hi Sarah

    Hope you are feeling a little better today.
    Not sure what to say really as never been through that before. But am sending you lots of :hugs:


    Love
    M

  18. #36

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    Thanks M

    Hope you are having a better day than yesterday too.

    Love Sarah

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