please help me ladies, i don't know what to do :'(

hi ladies,

I'm sorry to be a serial poster bu  i honestly don't know what to do and am so angry and confused right now i feel i cannot make a decision....

i have a blood disorder which means my blood clots abnormally and is too thick, when you're pregnant your blood thickens again meaning you're at risk of blood clots anyway but with the added blood disorder my chances go up ten fold. after having a section with my last daughter i got a clot on my lung which again increases my risk of getting another clot greatly. as the clot was in my lung it was life threatening and i had injections of clexane twice daily and warfarin everyday for six months (ended in november) to disperse the clot. 

i have three children and have had seven misscarriages, out of eleven pregnancies (this one included) only three of those babies survived to term those three surviving children were the only three i refused to take the blood thinner clexane, all seven of the misscarriages the babies died within two weeks of starting the drug. a consultant at the recurrent misscarriages unit told me the clexane causes misscarriage but "we don't care about the baby as we have to make sure YOU'RE safe" as I'd never had a clot at that point i just agreed to take an aspirin a day and my three girls survived. now, i HAVE had a clot i  if i were to take that chance again i would be taking my life in my hands as another clot could very likely prove fatal. 

basically, i said no WAY am i agreeing to take that evil drug KNOWING it will kill my baby, they said if you don't it will kill YOU!!!  so they said "ok, what if we let you get to twelve weeks and then start you on it?" i said I'd think about it, I'm ten weeks today so basically i have two weeks to choose between my life or my baby's, i KNOW my baby will die once i start these injections and i just feel so trapped, angry and confused. I've already been through so much this pregnancy and my little bean has hung on and fought and defeated all odds so far and now they want me to just say "ok whatever, take the risk with his or her life" i just don't know what to do, my motherly instinct has kicked in BIG time and i will protect my baby with all i have but what if i lose the battle this time and leave my three girls with no mother??? I'm torn, please help, anything you can offer will help, anything at all. please i just need your opinions, what would you do??? xxxxx

Posts

  • hi huni

    What does your other half think about it all?? 

    Im really not sure what to say to you huni, i wish there was a magic wand i could wave and make it all better image

    Cant they let you go to 20wks first instead of 12 wks?? 

  • he said losing me isn't an option he cries at the thought or mention of it so i tend to avoid putting on him too much . when he found out it looks like i don't have an option about having the injections he said "well we're going to lose this one then aren't we, it's going to die" tbh it doesn't help, i already frikkin KNOW that but that's all i get. i don't know if it's because he doesnt wanna be the one to have to choos  but i just feel like this is all on my toes and it's a decision i don't want to make either. i have been thinking about telling them I'll wait till twenty weeks and tbh that's wher  I'm at right now, not decided but it's the best of a bad bunch of scenarios in my head right now. i can't lose another baby, i just cant ESPECIALLY after how hard this baby has already fought to live but i don't wan  to die either. iveweven considered telling them I'm taking it and not, basically lying which is something i don't do, i HATE lies but if it means my baby will live surely it's for the greater good? xxxx

  • What an awful position to be in , my heart really goes out to you hun , is it a possibility to wait til 20 weeks ? is there anything else you could try ? I can see it from both sides , your dh doesn't want to lose you n obviously you don't want to risk leaving your children without their lovely mummy , but the overwhelming need to protect your unborn baby is such a strong feeling , I would talk it over with your consultant n see if there are any other options apart from the injections , wishing you all the best n sending you a big hug , good luck with whatever you decide x x 

  • Hi, sorry that they arent being flexible xx



    Research anticoagulants in pregnancy. Heparins are generally considered safe. Could you not learn about some other options so when u have the next discussion you can persuade them to rethink the drug they are forcing u to chose? I googled anticoagulants safe in pregnancy and it looks like there are options. Xx
  • Huni i can see it from your other half side but i am also with you on this one, there must be some else they can offer if they know this drug kills your unborn baby why on earth would you want to take it! they have no right to force it onto you, and i can understnad why you would want to lie and tel them you will take it but wont.....its so hard huni and a lot for you to deal with on your own!

    xx

  • thankyou ladies, i think i have come to a decision. it may be a stupid one but only time will tell...

    i have another appointment in a fortnight and will be seeing mw for booking in etc tomorrow. i have had dealings with heparin and clexane (aka enoxaparin) for many years, the clexane they give you based on your weight, same as the heparin but the differences are on clexane you're just given the drug and expected to take it without monitoring for the entire pregnancy until baby is six weeks old (what they want me to do again this time) and with heparin (like with warfarin tablets which cannot be used in pregnancy)  you have an inr (international normalized ratio) done every four weeks to check how thin your blood is. even offering me heparin would be a better option as atleast I'd have the peace of mind that they were keeping an eye on me but that said, with my middle daughter i was on heparin (bullied into taking it from 25 weeks) and ws given 25,000 u its more than i actually needed and nobody noticed (total medical negligence) which led to my placenta completely detatching from my uterine wall (complete placental abruption) and a massive hemmorage which VERY nearly killed me so my faith in that has been shaken also. there is absolutely no way the mw, consultant or anybody will agree to it being ok not to have clexane or heparin until 20 weeks as everyday imnot taking it I'm at risk of developing a fatal clot and ten weeks (I'm ten weeks now) is just too long to wait.(this is what they will say) but I've decided I'm taking NOTHING until they have referred me to a hemotologist and I've spoken to somebody who can advise me based on first hand KNOWLEDGE of my blood condition (factor v leidin mutation/apc resistance) and not just base their advice, like the consultant has, on "what they usually do in these cases" I'm not just a number, niether is my baby and we are a very unique and individual case so i want an individual assesment. i know i sound like an arsey cow lol but i know if i don't make a stand, either way, this decision could potentially affect me for the rest of my life. clexane is designed to help prevent blood clots but it causes bleeding which is what's happened with my mc's and eventually the baby dies due to hemmorage in the placenta.at twelve weeks the placenta is only JUST beginning to fully support baby and is very immature, my plan is to TELL them I'll wait until twenty weeks when baby and placenta are well established and THEN I'll accept heparin, not clexane as a prophylactic measure. does any of that make sense,I'm scared of making irrational and deadly decisions and it not being right due to my frame of mind if that makes sensd so I'd REEEALLY appreciate your input ladies. thankyou soooo much for your kind words, it means so very much and has really helped, anything you could add would be GREATLY appreciated xxxxxxx

     

  • I definitely think you're making the right decision about wanting more expert advice... you should not have to accept a consultant's decision when he/ she is probably basing that on very little direct experience of your case.

    i know it's a long shot but have you thought about contacting a high profile expert to ask for their opinion / consultation or direct care? They may say sorry they cant help... But they may agree... Especially given your history... & these types of doctors do relish the 'challenge' of working on unusual cases. 

    Have you heard of a doctor called Professor Kypros Nicholaides? He now practices with the fetal medicine center in London. I watched programs of his work years ago and was amazed at his dedication, & skill in working with extremely high risk pregnancies (eg performing surgery 'in utero' & regimes for trying to help a lady who had had several miscarriages as a result of her bodys antibodies attacking the baby). What have you got to loose by contacting him & asking for at least him to gave a phone consultation with your consultant??

    here's the details:

    Address

    The Fetal Medicine Centre
    137 Harley Street
    London, W1G 6BG
    United Kingdom

    Tel: +44 (0)20 7486 0476

    Fax: +44 (0)20 7486 0294

    Email: [email protected]

     

     

    Wishing you the best... Be safe & keep us posted! X

  • thankyou sw2,  I'll try anything!!  i will be ringing the hospital tomorrow andd filming an official complaint. I'm also considering legal advice as i so very strongly believe if I'd have received appropriate care last time i wouldn't have got the P/E.  the referral to the hemotologist never came through so i never saw one, not once in my entire pregnancy and nobody chased it up xxxxxx

  • Good luck huni xxx
  • Good luck today hope all goes well with the midwife xx

  • thanks girls image midwife has been, she took bloods etc and the scan referral has been made image i spoke to her about yesterday an  she gave me a letter that has been sent from a hemotologist to my gp, it said I'd have to take aspirin(have been doing this from four weeks anyway) and i should CONSIDER clexane, more so in later pregnancy due to multiple fetal loss!!!! basically everything i kept telling them. well I'm relieved but also like a dog with a bone now as i now know for a FACT they had no right pushing clexane on me this early and i was right about them just trying to cover their own arses!!!! i feel relived as hell but seriously pissed off with the jumped up consultant from yesterday and told mw i only want to see my NAMED consultant from now on, not her little idiot understudies!! they are so going to get full force of my wrath at my next appointment in two weeks, how DARE they!!!!! i see midwife again on Tuesday too, so at long last I'm being monitored and making some headway. i have decided i WILL be telling them to shove the clexane until I'm atleast in my twenty fifth week, the midwife agreed with everything i said. let them try and bully me next visit, they will get it back big time!!!! xxxxx

  • Glad all went well and they are going to keep an eye on you now! about time!! its good she agrees with you and hopefully they will see that xx

  • wether they do or they don't i shall be TELLING them that's what's happening. there was no mention of my previous clot in the hemotologists letter only of "multiple fetal loss"  so I've asked to see him face to face, his opinion could change then but I'm happy for now and deffo wont be taking the injections yet, i will need both aspirin and clexane in later pregnancy and for six weeks post delivery but i can live with that!! i have something to back me up now for my next appointment, screw YOOOOU snotty consultant lol. how are you today hunni xxxxx

  • So glad things seem a bit more clear / positive for you now! image

  • im doing ok huni

    woke up at 6am feeling so sick i couldnt move from my bed, fell back asleep and woke up at 9am to find little man next to me with the sky remote lol been feeling sick all day i ate beans on toast for dinner that didnt go down to well image xxx

  • Im glad u got a haematologist on yr side now and quite right to demand u not being out numbered again. U should be made to feel comfortable not for the to try to intimidate you xxx image I will be joining u on the aspirin in 2 weeks lol zxx
  • thankyou so much for all of your support ladies, i can't put into words how much your advice ha  helped me and really did make me feel stronger and able to stand up for myself.sw2 i will still be looking into the doctor you memtioned as as far as I'm concerned the more info i have the more ammo i have for when i am verbally bullied or stupified into the clexane again, which i know will happen. i clearly kno  more.about my conditions than the jokers at the hospital who are supposedly my "health care professionals" and i have confirmation of that now.  if they didn't kno  about the hemotologists letter then i wanna know why they didn't check ESPECIALLY when it mean  the difference between prescribing a drug that woul  induce a mc and if they did know.about the letter who thr hell are they one to not tell me.about it and two to try and over ride the recomendations of a blood specialist!?  these are some of the questions i will be asking them in a fortnights time xxxx

  • hey samantha  image i have an aspirin buddy lol. will you b  on it until birth hun or for six weeks postnatally too xxxxx

  • Hello, keepthefaith: just wanted to say hurrah at your news today! So glad your midwife understood where you're coming from.

    Hope you can sleep easier tonight!

  • thanks helen, i am feeling somewhat relieved to say the  least although i know we're "not out of the woods yet" i do feel much more optimistic. i have done a huge amount of research over the last ten years about clexane and enoxaparin and have decided recently to do more an  have found out that not only is this drug not licensed for use in pregnancy (though it's not unheard of  to find unlicensed drugs being used in pregnancy i still find it alarming none the less) also I've found literally hundreds of stories online of women stating they have suffered misscarriages within days of taking his drug they begin to bleed and the babies die. this has happened to me seven times and everytime i mentioned stopping the drug or not starting it at all I've been met with the same aggressive reaction from several different doctors and consultants that "id bestupid to stop taking it and MUST carry on, your losses are nothing to do with this drug" i have also heard and read so many stories of women who've suffered pregnancy loss on this drug have encountered the very same reaction from doctors and health care professionals when wanting answers and advice on it's side effects and when they've aske  if it is possible their losses were caused by it. i have also made a report to the "yellow card" scheme which monitors the safety of drugs and determines their safety and status and also wether or not or drug should be granted a licence. unfortunately it isn't the first time I've encountered this type of treatment from medical staff with regards to this drug and feel so strongly that something has to change. i was told by a top consultant arounf five years ago that "it was VERY likely the clexane HAD caused my mc's" but also added that "hadn't come from him if anyone asked"  i have decided to try mu best to try and get recognised that this drug IS a cause of pregnancy loss and isn't safe in pregnancy and the report lodged with the yellow card scheme is just the beginning of what i intend to do to stop these women having to  going through several misscarriages and to be bullied into taking it and being lied to that this drug is safe when we KNOW it isn't. i literally  too many similar stories to keep track but every single one is singing from the same song sheet so to speak when it comes to the agreement that their losses HAVE been caused by this drug and why it seems doctors are so guarded about it's side ffects. i find it shocking that after ten years of dealing with this drug personally I've never been told it isn't licensed for use in pregnancy as "studies into it's safety are still ongoing" why have i never been told this??? i feel like I've been used as a guinea pig and i know I'm not the only one! something has to be don  to help these poor women world wide who are suffering in this way. so sorry to ramble on but I've never felt this strongly about anything and cannot just stand by and do nothing. I'm now a woman on a mission and shall not be pushed around by these doctors anymore, even if it means just one woman doesn't have to go through this then i will be satisfied that I've helped SOMEONE! I'm currently looking   into starting my own website to gather information and also to share information with women in similar situations and to give advice, i only found out about the yellow card scheme yesterday so I'd like to "spread the word"  about the scheme so ladies know there IS a watchdog who monitors drugs and also where you can log negative side effects or experiences with drugs. 

    I'd like to thank you all again for your support, this site and the wonderful ladies on here have given me the strength to finally stand up for myself and to realise the doctor's have no right to treat me the way they have been and to do something to make it change. hope everyone is well, 

    c

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