Anyone have a Prothrombin Gene Mutation??

[Erin83]

I was diagnosed with a Prothrombin Gene Mutation in January of 2005. All of my doctors have cleared me to have a baby, now I'm just waiting for it to happen. If anyone out there has this mutation and has been pg in the past, please share your experiences with me. I'm so curious to see what effects come from being pg and having the mutation. Thanks so much! Erin

[Aubie]

Hmm, I can't find the other posting on this-the pg thread but here is one from the immune IF board... http://www3.fertilethoughts.com/foru...d.php?t=523890

there are 2 of us here that are currently pg . We both have the prothrombin factor 2 gene mutation. The other girl has 2 copies & I only have 1. we are both 19 1/2wks pg currently. I know the other girl has an older shild which they had her on either heparin or levenox plus baby aspirin for the entire pg & they are doing pretty much the same this time.

I'm actually being seen by a peri who speciality is clotting disorder & recurrent m/c & he is supposed to be one of the leading drs for it in the US. With my IVF I was on the baby aspirin only but then due to losing 2 of the babies my mat-fet took me off the aspirin. He has discussed starting heparin/lovenox but has decided against me doing that while pg but will do it for just 6wks post-partum. I think I'd be happier on the heparin/lovenox but since I had 6wks of bleeding with this pg he is being cautious.

After some research on my own I did find out pg spotting/bleeding is common with this disorder. As to previous pg, I have had 8 m/c -which is common with this risk factor but I also had another issue -bilateral hydrosalpinx that had to be fixed.

As for this pg, I am monitored very closely: 1st tri was weekly level 2 u/s, 2nd tri has been level 2 & bloodflow u/s every 3wks, 3rd tri the dr said I'd be back to every 2wks to begin with then weekly. I will be induced early since this clotting factor is the riskiest in the 2nd & 3rd tri and can be fatal closer you get to term as most commonly what happens is a blood clot develops in the umbilical cord & the baby dies in utero. With this clotting disorder your flying & driving will be limited
Good luck

[jennl]

Hi Aubie and Erin,
I'm not officially here yet but always lurking in hopes that it might bring me back here faster! I had no idea about the limited flying and driving. YIKES! Nobody ever mentioned that to me and I was doing a lot of driving especially in my second trimester with DS after I was dx with Factor II. Do you know much about the placenta breaking down with factor II? They told me that was a concern with factor II and I think it was happening to me. My fluid ended up getting lower and lower until they finally just took the baby at 37 weeks. (My OB said there was hardly any fluid left when they took him out).

I had a similar experience to Aubies. I was going to a peri once a month for ultrasounds in the beginning and then at 28 weeks my fluid levels started to drop. That's when I started twice weekly non-stress tests and weekly u/s to check and see if everything was okay. My fluid never fully recovered -- it was down to 5.8 the night before they took the baby (I think it was supposed to be between 12 and 20 at that point). Other than the closer monitoring it was a pretty uneventful pg. Best of luck to you, Erin. Are you cycling now?

[Aubie]

Jenn- they haven't mentioned the possibility of the placenta breaking down or low amniotic fluid (I will ask about that at my next appt). The peri just told me that 2nd & 3rd tri were actually the riskiest with factor 2 in regards to blood clots. As to the driving & flying -the peri said driving long distances during 1st & 2nd tri were ok as long as you stop & walk around for 10min every hour - no driving except for very short distances (~15 car ride) after 35wks; flying he is a little more cautious about since the high altitude actually increases your risk for a blood clot & he prefers no flying at all during the entire pg but since both DH's family & mine live over 1000 miles one way & they wanted to do a baby shower he said he would do some extra blood flow u/s (those are really neat) the weeks leading up when I'd be flying (27wks along) & as long as those came back fine & we plan our flight to not be in the air more than 2hrs at a time (I have to walk the aisles for 10min every hour) then he would let me go.
Right now the peri has the induction scheduled for 39wks but said it may be earlier depending on the growth u/s (I have one every 6wk) & the blood flow u/s

[Erin83]

WOW, thanks you guys very much for your feedback. You have no idea how awesome it is to hear that other people out there have the same genetic disorder that I do. I was at the Hemotologist today and she told me that I also have the factor 2, but that it is common to have the factor 2 and the prothrombin mutation. Oh well, whatever. So I am not pg yet, but trying. My perinatologist told me I would see her every month for an u/s. She told me I would have restrictions at work as to how many hours in a day I can work and what kinds of cases I can do, I am a surgical tech in the OR, so I will have some limitations at work. I am currently taking Lovenox twice a day and it is leaving horrible bruises on only one side of me. She told me to give it in my love handles. I haven't heard much about driving and flying. They just said if we go long distances I would have to stop every couple of hours and get up and walk or if we are flying to get up and walk the aisles every coulple of hours. No problem, I can do that. The hemotologist told me she will keep me on the Lovenox until 4-6 weeks after delivery. I haven't heard anything about being induced early or having a csection or anything like that. I did ask her one time if she would recommend that I have a c-section and she told me no that they would want me to have a vaginal delivery just like any other person. I think this whole process is very interesting. Its cool what you find out when you talk to people and ask questions. I am not at all worried about me or the baby when I'm pg. I have complete trust and faith in my doctors and God that I will be seen through any pregnancy. Thanks for you comments. Keep them coming and I will keep you posted!! Erin

[jennl]

One other thing, Erin-- they switched me from lovenox to heparin around 35 weeks. It's the same type of injection (and also twice a day) but from what I understand heparin goes out of your system more quickly than lovenox, so if you have to have an emergency c/s you won't have a problem with clotting when you are supposed to be clotting! I actually had a scheduled c/s since I ended up with an emergency c/s with my DD. The only thing I would have liked to know beforehand was about the bleeding once I went back on lovenox post partum. I had a lot of bleeding from my incision that was pretty scary, but I guess very normal when you are dealing with lovenox/heparin. It was one of those "I wish someone had told me that" kind of experiences! Just thought I'd give you the "heads up" in case you end up in a similar situation.

Jenn

[Aubie]

Erin- the peri told me no C-sect (not that I want one anyways) unless medical emergency since it is harder to control clotting (if not already on one of the blood thinners) or bleeding (if on one of the blood thinners.

[carriecares]

I am on lovenox, 50ml twice a day. I started on 1/2 that after IVF transfer beacause they found the blood disorder after a miscarriage. Anyway because of high estrogen levels I got a bloot clot in my upper neck, shoulder area at 8 weeks. They said they never saw this since I was on lovenox already. Anyway , not enough. I was in the hospital for 3 days with a heprin drip to monitor levels. You cant with lovenox. I went home with double the lovenox dosage and I am know 20 weeks. Things have been going good. I did get a special blood test to test my lovenox level, but it took over a week to get back. It looked fine. Keep up with your hemotologist working together with your ob. I might have to have a c-section, so I am not sure about switching to heprin. But when i had my cerclage put in with a spinal, they switch to heprin before an after, so I assume it would be the same.

[Aubie]

Carrie- you must be JustJoe's wife. Nice to meet you. I lurk on the Jan board but don't post there. Good luck in your pg. You have struggled so much already. FYI you have a great DH

[Erin83]

You guys are all so wonderful! It is so encouraging to hear things from people going through the same things that I'm going through and struggling with. I know I keep saying that, but its true, I couldn't be happier!! Jenn, you asked me a few days ago if I was cycling now and I forgot to answer you last night. I really don't know when I'm cycling since I'm not ovulating, my periods come at weird times. In July when I was on Femara to make me ovulate I was regulated and that only for a month. I have missed my cycle this month and so far I'm past due 3 days now. Yesterday I had an HCG drawn and the doctor said that I had an elevated negative count. So it was not low enough to be completely negative and it wasn't high enough to be considered positive so the doctor told me to wait a few days to see if I get my cycle and if I don't then to go have another test drawn like Monday or somtime next week. So thats my news. I'm trying very hard not to get too excited about it because I've had several tests drawn in the past and they've all come back negative. This is the first one I've had drawn that has come back some what positive. That was a suprise to me.
As for your comments about changing to the Heparin injections from the Lovenox, I haven't heard anything about that. Nothing has been said. I figured when I get pg and I'm going to the doctor every few weeks then I'll start asking questions. I haven't even seen my perinatologist since the Spring on 2005. At that point my ob just wanted to make sure that the perinatologists were ok with me getting pg. So I have nothing more to add just that I will keep you posted on whats going on with my tests. I'm hoping for the best!! Erin