Anyone have a Prothrombin Gene Mutation??

[Erin83]

Yep they had me on Coumadin when I got my blood clots too. But then they had to switch me to Jantoven, which is the same thing just a different name and pill, because my hair was falling out. It sucked. Yep, you're right, I've been on this Lovenox twice a day since last June. It sucks, you're right, but well worth it. Good luck with all your decision making, I know they are hard decisions to make. I was scared to death to start those injections, but you get used to it. Keep me posted!! Thanks,
Erin

[Ligaz]

Hello Everyone
I was told about this thread from another chatboard that I am on.
I have Factor 5 Leiden. I have had 3 DVT's (Deep Vein Thrombosis) The first in 2005 being life threatening and in my right lung damaging 80% of it. Was put on Warfarin for 6 months then was checked and taken off it. Fell pregnant in 2006 and was put on Heparin injections everyday of my pregnancy even though being on the Heparin I developed another DVT behind my right knee when I was 8mths pregnant. That wasn't as large. Pregnancy went better than expected was not allowed an epidural. Also had a risk of clotting and bleeding at birth but had hardly any bleeding. Then 6 weeks post pregnancy was taken off medication cos everything seemed alright. 4 months later developed a very painful DVT in my groin area was then treated again and this time they decided to put me on Warfarin for life now. So take these tablets daily that last clot was 6 months ago and it worked its way down my left leg and the last scan I had it was still sitting behind my left knee. My left foot swells all the time to twice the size of my right one and has purple/blue discolouration all over my foot. Have blood tests every week to check my INR levels but nothing else is being investigated. Just wanted to see if anyone else is in similar situation and it seems they are. I'm in NZ so some of the names of drugs on here I have not heard of. Has anyone found out anymore information on other drugs or better treatments during pregnancy as I am thinking about having a second child.

[Erin83]

WOW, Ligaz, you've been through quite a bit!! All those DVTs wow, I couldn't even imagine. I think the two CVAs I had were enough for a life time! Coumadin and Jantoven are the same as Warafrin. So they put you on Heparin and not on Lovenox? I've heard that the Lovenox works better then Heparin. I think I would ask your hemotologist when you get pg again if you can be on the Lovenox instead. Its injections just like the heparin. Keep us posted.

Erin

[Aubie]

Erin- hi, I hardly ever have anytime to get on the boards any more- sorry. Naomi is now 4 1/2mos old & doing well as am I. That is awful to hear about your DH- even military ins would fix the varicoles since they'll treat the underlying cause of IF (just not any type of ART).

Marlene- my MFM said 39wk cutoff for induction with prothrombin factor 2 but with the more serious clotting disorders he likes 37-38 wks -good luck in getting pg

Ligaz- wow, hat is an awful story. I'm so sorry to hear about all you've gone through & pray it all works out for you

It'll probably be months again before I can get online
Erin- I'll pm you the new info on Naomi's site later today so you can see how pretty she is

[Erin83]

Thats ok Aubie, I understand, thats ok. You get on here when you have time. I can be happy with that!! I can't remember when the last time I posted was!! Well, now that I look, its only been about a month. So in the last month, I've had an u/s, done an IUI and been very upset because it didn't work. Better luck next time I guess. I think the deal was my ovulation timing was off. I did the OPKs, but I wasn't responding to them so they did aan u/s and decided I was going to O within the next couple of days, so they decided to do the IUI the next day. I think I'm going to be more aggressive the next time. Maybe talk to RE about larger dose of O drugs, maybe a progesterone draw to see when I O or other suggestions if he has any. I don't know what I'm going to do. We'll see. I hope sometime I get to be pg and experience pregnancy. I really want to know what it feels like. DH was just telling me that he is most afraid of my becoming pg and then m/c. I told him we've already had one m/c and we've now had a failed tx cycle also. I told him we can't do anything about me m/c. They told me that I'm already on all the drugs they would put me on for multiple m/c. I don't think they can do anything different.
Oh, and about his varicocele surgery, we're not going to do it now. The RE told us that he only has mild male factor and that we should still be able to get pg. When we did the IUI last month, his count was almost 19 million!!! We were so happy because last summer when they did the initial SA, his count was only 4 million. So we are thinking there is still hope. If only they could get me ovulating. Well, I'll reply later when I have something else to say!!!

[Erin83]

Ok ladies, the latest on me is that I'm awaiting results of my beta that was drawn on Thursday of last week, just two days ago after doing IUI#2. I'll update again as soon as I have results.


Erin

[marlenect]

HI Erin,
I hope your results go well! I'm stupid when it comes to these blogs, I don't know all of the abbreviations, but I'm assuming that IUI#2 is invitro fertilization? Not sure, please enlighten me. But I hope things go well for you. I can totally understand wanting to experience pregnancy. I feel very blessed that I was able to successfully have my daughter. I didn't know I had the prothrombin gene mutation at the time, so looking back, the fact that the pregnancy was relatively normal and that she and I were both healthy and fine afterwards, I feel extremely grateful. And now I believe it is one of the factors why I miscarried in Sept. 07. I'm still nervous thinking about trying again, now knowing my condition, and knowing I'll have to be on the annoying Lovenox injections, I'm not looking forward to that. But on the other hand, it's great that it's an option. I have made a decision, and even with my age (nearing 39) and with having Factor 2, I have decided to try to get pregnant! So in about two weeks, as soon as my period is over, we are going to start trying like bunnies.

[Just a thought for anyone trying to get pregnant, you'd be amazed at the wacky things our bodies do and the odd times we might ovulate. When I got pregnant with my daughter, the doctors and I figured out that I must have gotten pregnant right after my period, like during the 1st week after my period....based on activity and when they first confirmed pregnancy they did a VERY early ultrasound on me and seeing the 5 weeks gestation. Back in August of last year, my period ended while we were on vacation and we started trying that first week afterwards and again, boom, I got pregnant. So it's not always mid-month...and those little suckers can live for awhile....anyways, just thought I'd throw that out there.]

The night we first try, I'll get my first Lovenox injection, I already have all the meds ready to go. In the meantime, I've been taking baby aspirin, daily prenatals and extra folic acid. By the way, how do you do the Lovenox, do you use ice? I recall reading on here about people freezing the skin area BEFORE injecting? When my husband (DH I believe) gave them to me after my DVT was first found, my mom recommended putting a warm cloth on my injection site as soon as he was done, and I really liked that, I found it soothing. I found that the medicine stung, so the warm cloth was nice. Do you have any tricks you recommend? Okay, well good luck and keep me posted. Also, is there a way to email besides just blogging?

Good luck,
Marlene
-----

Me (38) - Factor 2 Prothrombin Gene Mutation
Successful birth - Daughter Makenna, born November 2004
Miscarriage September 2007

[Erin83]

Well hello again Marlene. I have to say, you have some long posts!!! Don't worry, I love to read them, but I just had to say it.
My cycle this month was BFN. I started bleeding 17dpiui and then finally got the results of my b/w on Monday and the nurse told DH that I should be bleeding. Oh well, on to another cycle.
As far as you not knowing the abbreviations, if you just look up where it is blue, there are a lot of catergories there to choose from, towards the middle and on the bottom there is something called "acronyms". Click on that and it is a "cheat sheet" to all the abbreviations. I used that for along time especially in the chat room where everyone talked so fast. I just had to know what was going on!!! So that thing was practically glued to my face, it was quite the sight!!! So as for the IUI it stands for intra uterine insemination, which was decribed to me by the RE as the same thing as Artificial Insemination. Invitro is abbreviated IVF.
I'm sorry to hear you had a m/c just last Sept, funny as it is, I had one the same month last year! I work in surgery so I tend to ask a lot of questions and I was working with an OB/GYN a week or two ago and we got talking about Lovenox and I've been on it for 13 months now. He wanted to know why and I told him. Anyway, he studied a lot in Immunology and still does so he knew exactly what this Prothrombin Gene Mutation was. He asked me if I had factor 1 or 2 and I told him 2. The next question was whether or not I have had a m/c. I told him yes and then told him I was having IF problems and he told me he wasn't suprised. So my other docs had never mentioned to me that this Factor 2 Prothrombin Gene Mutation is a factor in our IF. He said it usually causes spontanious m/c. He said they usually have the patient have 3 and then they start testing. Now why they would make someone go through that many is beyond me. So I just though I'd pass along the info I found out. So since you have this factor 2 mutation thing I think you are very lucky for being able to have a child already. Does your DD have the mutation? Did you ever get her tested? I think we are going to test right away as soon as our baby is born.
I am glad that you are aware of this mutation and that you are being treated for it. The Lovenox is really not that bad. Some of the other girls have been on Heparin and its a good drug, just my hemo thought the Lovenox would be better for me. I am on the same drugs you are right now, the prenatals and extra Folate. My peri told me to start the BA when I have 4 wks left until they induce me. I'm pretty sure at that time she is going to have my stop the Lovenox.
I do not use ice or a warm pack for my injections, I just pinch the area that I am going to inject at, rub alcohol pad over the top, fan it dry and then stick. I only inject as fast as I can tolerate because sometimes it stings. Then I pull it out and put a band aid over the top of the injection site. I suppose you could use ice or a warm pack, I don't think it would hurt anything. If you're worried about it, may not hurt to give your doctor a call and ask them.
I think your last question was about emailing. Well, here you are just posting your reply to the thread. I think there is a separate place for blogging. As far as emailing, you can PM me (private message). All you have to do it click on my name, maybe right click and then click on send private message or something like that, type your message and then hit send. It will come right to the person you are sending it to.
Well, I hope you get pg easy when you start trying and I had to laugh at your trying like bunnies!!! LOL that was funny!!!! Also, good luck with your Lovenox. Keep me posted and stay in touch. PM me whenever you want. I'll always be here!!


Erin

[sarah03]

I have prothrombin gene mutation and MTHFR. just need someone to talk to.

[marlenect]

HI Sarah,
How are you? You doing okay, you seem like you need to connect to others. I completely understand and finding this site was very helpful for me last year. I also have Factor II Prothrombin Gene Mutation. I'm currently 18 weeks pregnant and on Lovenox and so far, everything is going alright. My doctor's (both regular OB as well as a Maternal Fetal Medicine OB) all seem to feel things are fine and aren't too concerned. I get monthly u/s right now which is really neat to see the little guy changing each time.

Anyways, share your story and hang in there. I was pretty devastated when I first found out my diagnosis, but I'm used to it now and it's livable for sure!!

Marlene