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teaforthree
My Handsome Boy!
Member since 12/10 2549 total posts
Name:
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Had Ultra Screen Today - I have thrombophilia... SCARED :-(
So, I'm 12 weeks and the doc I saw today at the Peri-Natalogist (who will not be my regular Peri-Natalogist... he's on vacation) kind of scared the crap out of me.
He told me that I tested positive for a gene mutation (MTHFR Gene Polymorphism) that shows I have thrombophilia, which is news to me. Also, he pointed out a lesion on my placenta, which he said is not good. I was in such a good mood until then - watching my baby dance around for the first time, seeing the real shape of my baby for the first time... and then he dropped this bombshell and was even making it sound like the pregnancy was in jeopardy. I had to pull a silver lining out of him with lots of questions. Finally, it came out that this just means he wants me to come every two weeks to the Peri-Natalogist to keep an eye on things. He said the only way the lesions would be dangerous is if I didn't keep track of them and found out too late that the baby was not getting the nutrition it needs. So, now I have to go back every 2 weeks, which I'm FINE with - but I'm not fine with being scared to DEATH that this could be serious trouble.
Part of me cynically thinks - and I guess hopes, in a way - that he only put it like that so I would keep going back (to either get more $$ from insurance - or to make sure I don't take it lightly and not return as often as they suggest). Either way, it worked because I'm so worried and scared now. He said that I am now considered high risk.
The good news is that he straight out said that from looking at the baby, the baby is "normal" - even before the blood tests were taken. He said that will just confirm it.
I'm impatiently waiting for a call back from my OB so he can make me feel better.
Do you have any experience with this that will make me less worried? TIA...
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Posted 2/7/11 8:27 PM  |
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Long Island Weddings
Long Island's Largest Bridal Resource |
keepingsecrets
ridiculously blessed!!
Member since 7/09 1912 total posts
Name:
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Re: Had Ultra Screen Today - I have thrombophilia... SCARED :-(
hi.....totally totally crashing here...i'm not preggo  but....
did the dr put you on a blood thinner such as baby aspirin or lovenox? i have a copy of MTHFR and my RE just put me on baby aspirin. there are MANY other girls on these boards who i'm sure will respond who are on lovenox.
also....i want to tell you that in 09 we lost a baby (totally unrelated to this post) but we saw Dr. Kofinas at that time for a second opinion and he's AMAZING. he's heaven sent. smart and straight forward but so caring! hang in there, i bet next time you have an appt with Kofinas you'll feel so much better. 
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| Posted 2/7/11 8:54 PM |
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teaforthree
My Handsome Boy!
Member since 12/10 2549 total posts
Name:
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Re: Had Ultra Screen Today - I have thrombophilia... SCARED :-(
Posted by keepingsecrets
hi.....totally totally crashing here...i'm not preggo but....
did the dr put you on a blood thinner such as baby aspirin or lovenox? i have a copy of MTHFR and my RE just put me on baby aspirin. there are MANY other girls on these boards who i'm sure will respond who are on lovenox.
also....i want to tell you that in 09 we lost a baby (totally unrelated to this post) but we saw Dr. Kofinas at that time for a second opinion and he's AMAZING. he's heaven sent. smart and straight forward but so caring! hang in there, i bet next time you have an appt with Kofinas you'll feel so much better.
Thank you. I'm in tears over here so worried. I had Nguyen today and I wasn't happy with how he "broke" this news to me. Scared the crap out of me. I really wish I only dealt with Kofinas, but he's away for two weeks.
My OB has had me on Baby Asprin since about Week 5 - thank God, right? Plus I'm on Metanx - also since the same week.
They just, today, had me start Calcium and Vitamin D supplements, too.
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| Posted 2/7/11 9:01 PM |
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TiffanyM
Love my little man!
Member since 9/10 1394 total posts
Name:
Tiffany
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Re: Had Ultra Screen Today - I have thrombophilia... SCARED :-(
i dont have any experience with this....just wanted to offer some
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| Posted 2/7/11 9:04 PM |
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MayAngels
LIF Toddler
Member since 7/10 406 total posts
Name:
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Re: Had Ultra Screen Today - I have thrombophilia... SCARED :-(
I see Kofinas for my twins too and I have MTHFR two copies of it and DH has one copy. I also have a bunch of other acquired and immunological issues. Kofinas and Nguyen are great, BUT they are very straightforward. They don't sugar cot anything at all. They tell it how it is and if they say they can get you through it believe that they can. I lost a set of twins MOthers Day w/e of 2010 and at the time we were NOT seeing Kofinas. When I saw him for this pregnancy at 8 1/2 weeks due to hemorrhage like bleeding and being told by 4 other Drs that there was nothing they could do and I would probably lose my babies...both of my babies placentas were half dead and I had a huge subchorionic clot above baby B that was bigger them the whole pregnancy itself! I was hysterical and Kofinas was very blunt about just how bad things were but told me he could help and I had to be dedicated or else we are just wasting each others time. I put all my trust in him and am 26 wks and my babies are doing GREAT so far. They are about 3lbs each already and growing way above average and everything with them so far is going wonderfully. I have my ownissues such as cervix shortening all of a sudden now and pubic bone issues, and tonite my legs, ankles and feet are so swollen they look like they are going to explode but thats a separate issue altogether. 
Sorry this is so long I just wanted to share my experiences so you know you are in good hands! I wish you the best of luck!!! feel free to FM me if you need anything or have any other questions.
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| Posted 2/7/11 9:41 PM |
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JenMarie
One day at a time
Member since 11/07 7397 total posts
Name:
Jennifer
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Re: Had Ultra Screen Today - I have thrombophilia... SCARED :-(
I see Dr. Pillitteri and go to Dr. El Kady's office. Dr. P just found out I have the MTHFR gene mutation as well, but mine is a slight case. He had me on Metanx already since my first visit and put me on baby aspirin when the thrombophilia b/w showed the MTHFR mutation. He didn't seem worried so I'm not worried. The baby aspirin you're on will help. I know it's hard, but try to relax and know you're in good hands with Kofinas.
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| Posted 2/7/11 9:59 PM |
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babyonboard2010
our little monkey butt
Member since 6/10 1086 total posts
Name:
Kristi
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Re: Had Ultra Screen Today - I have thrombophilia... SCARED :-(
being seen in that office every 2 weeks is normal...they like to keep close tabs on all of us...i've actually gone every week since october
you're in good hands with dr kofinas....trust me
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| Posted 2/7/11 10:17 PM |
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Phoebee
LIF Adult
Member since 11/06 1623 total posts
Name:
Michelle
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Re: Had Ultra Screen Today - I have thrombophilia... SCARED :-(
I'm so sorry you got some disappointing news. There is nothing wrong w/ the baby... so that is GREAT news!
I saw Dr. Kofinas & Dr. P. I felt like I was in the Dr.'s office at least once a week. It wasn't that bad, but it's what it felt like. I'd do it all again, as long as  was the end result.
I'm on lovenox & BA.
I don't think Dr. Kofinas' office would tell you anything just for insurance $$. (Although, nothing in this day and age would really surprise me). I'm sorry Dr. N didn't deliver the news in a delicate manner, but Dr. Kofinas' doesn't sugar coat either.
If you have any questions, feel free to FM.
Good luck to you and your LO.
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| Posted 2/8/11 9:30 AM |
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JBaby
LIF Adolescent
Member since 9/10 762 total posts
Name:
Julia
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Re: Had Ultra Screen Today - I have thrombophilia... SCARED :-(
I have factor 5 Thrombophilia, which from my understanding is a very risky one to have and I see Dr. Kofines and Dr. Nguyen every two weeks. I can honestly tell you they've been a god send I love going to that office and I feel in such good hands every time I’m there! When I go to the OB I feel like he doesn't even recognize me sometimes because he has so many patients and it's not a single dr practice so I hardly see him at all and that's the person who's actually going to bring my baby into this world! I honestly prefer seeing Dr. N to Kofines that man scares me a little but it's true neither of them will sugar coat anything. They are both very straightforward, sarcastic and have a weird sense of humor. But you have to remember they are exceptional at what they do!!!! Best of luck with the remainder of the pregnancy, I’m sure your baby will thrive!!!!
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| Posted 2/8/11 11:41 AM |
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cookie
LIF Infant
Member since 12/10 90 total posts
Name:
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Re: Had Ultra Screen Today - I have thrombophilia... SCARED :-(
I have same thing along with PCOS. I see Dr Kofinas, i go every 2 weeks. I am on Lovenox, baby asprin and mendonox (sp). Dont worry
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| Posted 2/8/11 11:43 AM |
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cookie
LIF Infant
Member since 12/10 90 total posts
Name:
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Re: Had Ultra Screen Today - I have thrombophilia... SCARED :-(
Posted by JBaby
I have factor 5 Thrombophilia, which from my understanding is a very risky one to have and I see Dr. Kofines and Dr. Nguyen every two weeks. I can honestly tell you they've been a god send I love going to that office and I feel in such good hands every time I’m there! When I go to the OB I feel like he doesn't even recognize me sometimes because he has so many patients and it's not a single dr practice so I hardly see him at all and that's the person who's actually going to bring my baby into this world! I honestly prefer seeing Dr. N to Kofines that man scares me a little but it's true neither of them will sugar coat anything. They are both very straightforward, sarcastic and have a weird sense of humor. But you have to remember they are exceptional at what they do!!!! Best of luck with the remainder of the pregnancy, I’m sure your baby will thrive!!!!
I see Dr P and i feel the same way. I dont know he seems all over the place, i want to look for another OB, i dont know what to do. I don't know why everyone loves him so much. Every time i go i leave there feeling rushed and ignored almost. So many interuptions all the time
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| Posted 2/8/11 11:48 AM |
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jax1
Love my baby girl!!!
Member since 3/09 3405 total posts
Name:
Jackie
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Re: Had Ultra Screen Today - I have thrombophilia... SCARED :-(
  Very scary. I'm sorry. What is the next step of action?
I have MTHFR (homozygous) and was on Baby Aspirin and will be on it for life. I am switching to Lovenox now (a blood thinner). Some girls on here are on it. I would ask about that or baby aspirin or extra folic acid.
As for the other stuff, I don't know. Just keep asking questions and get checked by the peri. It seems like they are doing everything they can to be proactive which is good. I know it';s scary, but glad the baby is looking normal! more hugs for you!!
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| Posted 2/8/11 1:56 PM |
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BabyLoveBug143
Alyssa Rose is here!!!
Member since 9/10 3288 total posts
Name:
Jessica
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Re: Had Ultra Screen Today - I have thrombophilia... SCARED :-(
hope everything works out!!
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| Posted 2/8/11 2:24 PM |
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Phoebee
LIF Adult
Member since 11/06 1623 total posts
Name:
Michelle
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Re: Had Ultra Screen Today - I have thrombophilia... SCARED :-(
Posted by cookie
Posted by JBaby
I have factor 5 Thrombophilia, which from my understanding is a very risky one to have and I see Dr. Kofines and Dr. Nguyen every two weeks. I can honestly tell you they've been a god send I love going to that office and I feel in such good hands every time I’m there! When I go to the OB I feel like he doesn't even recognize me sometimes because he has so many patients and it's not a single dr practice so I hardly see him at all and that's the person who's actually going to bring my baby into this world! I honestly prefer seeing Dr. N to Kofines that man scares me a little but it's true neither of them will sugar coat anything. They are both very straightforward, sarcastic and have a weird sense of humor. But you have to remember they are exceptional at what they do!!!! Best of luck with the remainder of the pregnancy, I’m sure your baby will thrive!!!!
I see Dr P and i feel the same way. I dont know he seems all over the place, i want to look for another OB, i dont know what to do. I don't know why everyone loves him so much. Every time i go i leave there feeling rushed and ignored almost. So many interuptions all the time
I actually got to see Dr. P on Saturday mornings. He does that for some of his patients. I was commuting from the city and it took me 3 hours to get to him. Maybe that's an option for you, doesn't hurt to ask?
The last few times I went, he received a call from Dr. Kofinas and picked it up right away. He knew exactly the patient and conditions. From what I understand, they speak about 5x's a day. I too, sometimes, felt rushed, or as if he didn't really know who I was or my case. That was not the case at all. I've called a few times now, post pardum, and he's picked up himself and asked me questions that are specific to ME. That's w/out having to look at the chart.
Just trying to give you some peace of mind as I know how frustrating it can be to feel rushed or as if a Dr. isn't paying attention to your "case" and in this case your pregnancy.
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| Posted 2/8/11 2:39 PM |
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