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Heparin

Feb 05, 2013 - 39 comments

So after I lost Ruby I was told for my next pregnancy I would have a lot of intervention and be under the high risk clinic at the hospital.

The plan was low dose asprin, progesterone the entire pregnancy, stitch in my cervix at 12 weeks and heparin shots.  Well I'm pregnant and so far they have been fobbing me off regarding the heparin.
I am under the impression from a few of my friends on here, that I should have started it the minute I had a positive hpt.  The doc at my clinic is taking her sweet time in finding out from the immunologist at the high risk clinic at the hospital as to when I should start it.

Well she emailed me today to say she hadn't heard back from the immunologist and would ring her on Friday.  She also asked if I could do my second beta tomorrow (Thursday) instead of Friday so she could see the hcg is rising because if it isn't I would need to bother with the heparin (so sensitive -  NOT!).

So yeah, second beta planned for tomorrow morning and I'm really nervous. I hope it's rising appropriately and then they give me the damn heparin!

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by butterflybabies, Feb 05, 2013
wow I hope they get back to you on it. and that is very insensitive what she said about your beta and whether you'd need it anyway. Praying for you hun!

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by retta483, Feb 05, 2013
ugh ! some people im so sorry they are so hard hearted . hello dr's people have feelings ! well i hope that your beta comes back higher and they give you the heparin .

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by Sherri90049, Feb 05, 2013
Wow! That is about the rudest most insensitive thing I think I have ever heard! I'm sure your beta will be just fine. And after that, they d a m n well better get you your heparin by the end of the week!

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by Sherri90049, Feb 05, 2013
P.S. Why the heck does she have to wait until Fri??? It's Wednesday! There may be lag time to it prescribed. She should start calling now and at least have the script ready to go pending the results if the beta.

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by nichumangel, Feb 06, 2013
First of all Huge congratulations my dear! Very happy for you! Second, DO NOT LET anyone tell you about what you should or should not take during your pregnancy, that resulted in my miscarriage 2 years ago, and I have never forgiven her since! They are not God, they do not know anything, Heprin will only help your pregnancy there is no risk to the baby (if my nursing education is still correct, been a while lol) so demand she give you the damn heprin and anything else you know your body needs! THat is my rant for the day! lol hugs

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by mandaszoo, Feb 06, 2013
My God , You need to email her back and tell her you want heparin now and take any small risks that come with that. Tell her that if lack of medication causes the loss of your baby you will hold her responsible and at very least complain about her insensitive comments. I am sure her senior would want to know about her terrible attitude. In the meantime I would take baby asprin if I was you as it has been proven to help with clotting issues. Good luck and stay strong I know how hard that is after losing a child but I am proof you have every chance to have a healthy baby next time . xxx

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by laureninlove, Feb 06, 2013
Best of luck as I know it's probably now today for you to get the beta :) hope you come out with a supply of heparin! :-)

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by dscoqn, Feb 06, 2013
Thanks so much for all your comments!  Hcg came back at 1369.20 - so that's a doubling time of 41 hours.
Looks like I am going to my clinic tomorrow to pick up the Heparin.  They are going to call me with a time I can go in.

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by Hopeful4aBlessing, Feb 07, 2013
CONGRATS! I agree! Heprin is the ONLY thing that saved my pregnancy I believe and now i have a healthy 3mos old lil' boy! Do not stop until you get the treatment you deserve!


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by dscoqn, Feb 07, 2013
Immunologist at the hospital told my clinic today that they don't want me taking the Heparin.  I don't know what to do now :(

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by butterflybabies, Feb 07, 2013
Did they say why??

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by Dolphin05, Feb 07, 2013
I'm so sorry your going through this. I've never had to use heparin and not sure how it helps but fight for what you feel you need!

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by dscoqn, Feb 07, 2013
The immunologist basically told my clinic all the studies show that heparin doesn't help with recurrent pregnancy loss.  But this isn't about recurrent pregnancy loss this is about one pregnancy that was pretty much proven that I lost due to a massive blood clot detaching the placenta.  I have also found out that I have a blood clotting disorder - coincedence?  I think not!  I pretty much know I lost all my other pregnancy due to ectopics so I am not even relating those to what happened with Ruby.  I am so pissed off.  Is the immunologist going to take responsibility if I lose this pregnancy due to another blood clot????

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by butterflybabies, Feb 07, 2013
Can you go get a second opinion from another immunologist? Sorry you have to go thru this.

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by pb95, Feb 07, 2013
Is there anyone at the clinic that understands or has some ounce of sympathy that can advocate on your behalf?  Even if this immunologist doesn't think it helps, can they also confirm it doesn't hurt and therefore would put your mind at ease with no risk?  I'm sorry you have to deal with this!

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by dscoqn, Feb 07, 2013
My clinic has set up an appointment with this immunologist so I can talk with them about their decision.  Not sure when the appointment will be but I hope it's soon.  This immunologist works at the hospital where I will be under the high risk clinic.  I'm not sure if they are part of the high risk clinic or not.  I will probably move over to the high risk clinic from my current clinic at about 8 weeks.  My Mum wants me to go and see a private clinic and get a second opinion and wants to pay for it - but I hate taking money from her.

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by tones99, Feb 07, 2013
I think this is one of those times that you have to accept help wherever it comes from .. take the money and get into that private clinic asap!!  My parents don't have money to give but when they saw we were struggling to keep going with IVF they sneakily left cash behind after a visit that we tried to give back but it ended up helping us greatly .. they were just so happy to have played a part in getting us to that finish line!!

think of it from your Mum's perspective, she gets a grandchild out of this so it's in her best interests to help!

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by Sherri90049, Feb 07, 2013
Toni's right. You've got to do whatever it takes now. The Heparin might be the thing that allows you to go full-term! The thought of you enduring another loss because of some idiot dr makes me ill. If they don't start treating you with the one thing that you so obviously need, I will call my hematologist and order a refill and ship it to you! If I can get the generic, it might be only $10.00. We can wait a few more days and see if you can convince them. Maybe you can bring in some studies when you go see the immunologist? I can also post on the Yahoo immunology group board for an RE clinic in Auckland that is "immune-friendly". (that's term we use) And then take your mum up on her offer and go somewhere where you will get what you need without having to argue about it. I'm so sorry you're having so much trouble. :( Sending hugs!!!

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by rmmoye, Feb 08, 2013
If u have a clotting disorder then u need the meds.  Dr rhink they know everything. Best of luck.

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by pb95, Feb 08, 2013
I think from what you have already told us, they aren't going to be in a rush for you to talk to this immunologist.  It won't be in their best interests to admit they are wrong either so that may be a dead end.    I agree with everyone to start moving over to plan b!  Good luck and hugs!!

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by dscoqn, Feb 10, 2013
Well ladies, I decided to write my clinic an email about the heparin.  Here's what I wrote:

Hi Shelley & Kitty,

After sitting on my feelings for a few days I have decided to write this email.  

I am very unhappy about the immunologists decision not to let me have heparin and am also baffled by her reason for not giving it to me.  This is not about a person with recurrent miscarriages wanting to try something new in the hopes that her luck may change.  This is about a person with antiphospholipid syndrome who lost a baby due to a massive blood clot - it is not a coincidence that these two things went hand in hand.  I have cut the following from an article on the web:

"Antiphospholipid syndrome is diagnosed with blood tests. It often requires treatment with anticoagulant medication such as heparin to reduce the risk of further episodes of thrombosis and improve the prognosis of pregnancy"

To put it simply, I am worried I will have another blood clot in this pregnancy - this is not unfounded as I have a blood clotting disorder. I want to take heparin to stop any blood clots that form from getting bigger and detaching my placenta like in my last pregnancy.

I am not prepared to wait weeks for an appointment with the immunologist to plead my case.  Time is of the essence and according to articles I've read and talking to medical people, I should have been on this medication from the moment I had a positive pregnancy test.

I was promised by the public system when I lost Ruby that I would be taken seriously in my next pregnancy and that I would have the best of care. I do not want to be let down again.

I guess what I'm saying is, I want a second opinion - I am not prepared to take the word of one person who has clearly not looked at the facts and my history.  Please advise me of what my options are.

Regards

Kahli Summers



So they have already come back to me and said they are going to get a second opinion from the head of obstetrics at a different hospital.  I hope she says yes but if she doesn't I am going to go private - somehow I will get this medication!

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by Risa615, Feb 10, 2013
Good for you, excellent letter and to the point! Sending you hugs and prayers that this will all be taken care of soon.
Risa

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by DaylightDancer, Feb 10, 2013
Way to go, Kahli! You are one really strong woman!  That was a powerful message and I'm glad they had the good sense to listen to you. I know first hand what it is like to fight for proper care in a system of socialized medicine (with my history of recurrent loss and hospitalization for pre-term labor). I have high hopes the head of obstetrics will understand that you need the heparin and approve it asap! But like you said, if for some very odd reason she says no, you will for sure get the heparin from a private clinic.

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by butterflybabies, Feb 10, 2013
The letter you wrote was great! Good job on it. I'm glad they are getting a second opinion for you!

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by gilkesy, Feb 10, 2013
fantastic letter!! they shouldn't need to be pushed at all. can't believe they are not trying everything in their power to help this pregnancy be a success! uf heparin doesn't hurt anything why not just give it? keep fighting for your rights and if all else fails I would accept the money and go private. good luck xx

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by dscoqn, Feb 12, 2013
Thanks so much guys - glad you liked the letter.  Well it worked, the head of obstetrics said I could have the heparin - phew!  They want me to have a scan on Thursday to check the "baby" is in the right place and that it's a viable pregnancy and then I get the heparin.  I am so nervous - I wasn't expecting a scan so soon and now the anxiety has cranked up a notch.  I just hope everything is ok in there.  I also have another blood test tomorrow so hopefully my hcg is still rising as it should.

Thanks to you all for your support and encouragement xx

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by laureninlove, Feb 12, 2013
I'm sure everything is going fine in there. I despise how we have to convince doctors we know a little more sometimes and plead with them to look in a bit more detail and with empathy. Time is of the essence with you, I hope you get some sort of apology! And this lil baby IS making it to full term just you wait ^.^ Yay the Helarin plea worked, but it shouldn't have taken that drama to start with!

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by Sherri90049, Feb 12, 2013
Thank goodness, sweetie! I shed a couple of tears of relief when I read this. It's still so early, so I am sure there is plenty of time to get it started. It's pretty rude that they still need to verify that it's a viable pregnancy. You already had a perfect beta! But whatever it takes at this point. Congratulations on standing up for yourself with that letter and for getting what you want and need! With this help I believe 100% that you are going to go full term. Big hugs!!! xx

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by Ellen038, Feb 12, 2013
Kahli
I'm so proud of you sticking up for what was promised to you after loosing Ruby. I know it was a lot of extra foot work and drama to have went thru but YOU DID IT!!  You got what was owed to you and your baby.  I'm SO PROUD OF YOU for fighting for what you were told was an important for this pregnancy! Way to go girl!! You and baby are in my prayers  always. I'm sorry that you've had to thru this but I'm greatful you and baby.
Hugs to you both my dear:)


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by Des_a_rae, Feb 12, 2013
Reading this journal and the responses gave me chills.  I to am soo proud of you for sticking up to them!!  Sometimes it's what has to be done(unfortuantely) but you did it and got it.  I pray for this lil baby, I pray you have a happy and healthy 9 months and we all get to watch this lil one grow. Best of luck with your scan tomorrow.  Sending you big hugs!! :D

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by rmmoye, Feb 12, 2013
I am sure all well be fine!!! i am glad u got your second opinion and your heprin. i would still take a ba per day just in case... that is what they had me on... it didnt work this cycle but hopefully the next.  I pray and hope that u have a good pregnancy and a healthy baby.

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by dscoqn, Feb 12, 2013
Wow guys, your responses have me in tears.  It's lovely how you all care so much.  I really appreciate your kindness and support xxx

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by pb95, Feb 12, 2013
I can picture you, years down the road, tearing apart anyone who messes with your little bub!   Such a necessary quality in a Mum!!  Way to go!!

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by mhv, Feb 12, 2013
Why to go girl!!!  I am so happy they listened!!! Fantastic news!!!!!!

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by tones99, Feb 12, 2013
I am so incredibly proud of you love ... that is a fantastic result!  this little one is so strong and nothing is going to shake it until you are full term!!

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by Sherri90049, Feb 15, 2013
How r u doing so far on the Heparin?

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by dscoqn, Feb 16, 2013
It's going fine thanks. The first night I didn't have any ice so I had to do it without and to be honest I didn't feel a thing.  I have quite a lot of fat around my tummy so that must be why.  I did forget about the no rubbing part and when I had a little blood spot I rubbed it with the alcohol wipe and sure enough massive bruise the next day.  The 2nd time I didn't rub it and no bruise.  It's all been way easier than I anticipated which is great :)

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by Sherri90049, Feb 16, 2013
Oh good! Yeah, sometimes things are learned the hard way but at least you'll never forget that part again! I'm so glad it's going ok. You'll get more and more used to it over time. As far as the bruised place, you can put some heat on it for 10-15 mins a couple of times a day. That will break up the bruise and make is dissolve faster.

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by dscoqn, Feb 16, 2013
Thanks Sherri!

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