Pam - DVT while pregnant - Have Lupus Anticoagulant

Hi! Unfortunately, I am now a new member of this group!!!! I am 41 and my name is Pam and I discovered I tested positive for Lupus Anticoagulant while 34 weeks pregnant. The good news is I don't have Lupus but just a factor in my blood that makes it clot more easily and pregnancy brought it on. It is interesting that I was pregnant at 38 years old too and was fine.

Anyway, the week before July 4th I was about 33 weeks pregnant and my husband and I were house hunting with our very active 3 1/2 year old. I was have trouble climbing up stairs and I noticed I was having trouble walking. Since I never heard of DVT's and have always been healthy I just assumed it was a pregnancy symptom and I pulled a muscle. Previous, to this I was walking about 2 miles a day. I called the doctor and I didn't want to be an alarmist and run to the emergency room. I made an appt. and was told the baby was pressing on a nerve and maybe I was developing sciatica!!!!! I went home and it just didn't sound right. I was having trouble lifting up my left leg and it just felt heavy. I got out my "what to expect while expecting" book and read about DVT's. I realized how serious it was and went to the emergency room.

It was a nightmare. Previous to this I was a stay at home mom and did not even have a babysitter for my son!!! My husband works full time and needed to go to work... We had to have our friends watch our Son for a week and then enroll him in school while I was in the hospital. I had to give myself shots of Lovenox while pregnant and then had to be induced at 37 weeks for my second son. I was scared at first because I thought I could not have an epidural! I eventually got one and delivered a beautiful , healthy baby and was switched to Coumadin.

I am now on 5 mg of Coumadin and visiting weekly with the hematologist to get it adjusted. My life has changed dramatically. Before, I did not even like to take vitamins and was perfectly healthy and athletic!!!! I am lucky though as my leg had swelled so bad that I was not even sure at first if I can walk again!!! I now can walk and my legs are both the same size. I am taking Coumadin but I feel lucky to have survived. I dislike have a medical condition though. I also feel very vulnerable taking a powerful drug like coumadin.

I feel scared though. I did not get a PE though sometimes I feel like my chest is tight. Not sure if it is anxiety or not. I also worry about bleeding and Coumadin. I am doing good though and can still go walking and my life is pretty much back to normal. However, it feels strange being on a "older person's" medicine.

Pam

Hi Pamela

So lovely to "meet" you and to hear your story. Wow, it must have been so scary for you to find out that you have a DVT whilst being pregnant! I cannot imagine how scary that must have been. Then to have the added worry of your son having to start school and live with friends while you were in hospital! Shame, quite an ordeal you went through. How long ago did this happen?

Good for you for reading your pregnancy book and discovering DVT and recognizing the symptoms. Yet again proof that noone knows your body as well as you do. Just as well you checked and went to the ER!

Not having kids of my own yet, I must say I'm THRILLED to hear that you could have an epidural! Whoot, lol...I've heard from a friend that you cannot if you are on Lovenox and that just scares the living daylights out of me. I am rather allergic to pain! So this is very good news to me!

I can fully understand your fears, its all normal to have. I have also always been so healthy. Also when we grew up I cannot remember having lots of medicines etc in our house or having to run to the doctor every so often. Only if we were really sick. So I'm not into taking medicines etc unnecessarily. Needless to say, having to take Warfarin (Coumadin) for the rest of my life to prevent a life-threatening condition shocked me, scared me and had me in a bit of a depression for a while.

The good news is that you soon get used to it and soon it becomes part of your life. I don't think about it so often anymore and know that if I take care of myself and listen to my body, take my meds as prescribed then I am in good hands. More than that we cannot do. I also found that reading about it and understanding it better, helped me deal with it a lot better.

Look after yourself and do stay in touch and let us know how you are.

PS: Congrats on the birth of your son! I'm so glad that all went well with the delivery

Keep well,

Regards
Madeline

Hi Pam,

What a story!!!
Welcome to the ranks of survivor, to you and your son, because that is what we ALL are, survivors to this condition.We walk and can talk about it.
Welcome to Life After DVT, and we are all proof of it that there is life after DVT, altered but still...
Like you have noticed and commented on it, we don't want to be here, but this is a place where people do understand your ups and downs we all go through as DVT survivors, many from the membership can help with advices they have received from their doctors and things that we have learned from our day to day life with DVT.
I have to make you understand that NONE OF US are from the medical community, all the information you will see here are simply advices given as advices that you can bring to your doctor and querry about, from country to country, you will notice that the treatments and even the diagnostics methods are different(since we have an international membership)and also from various walk of life.
So if you have questions, don't be shy, PLEASE ASK.
As you make yourself more comfortable within the membership you may want to bring to the forum some of the things you have learned .

Once again, welcome to Life AFTER DVT.

It is interesting to see how "international" our board is! I know this board consists of "regular" people and I should not turn to it for medical advice but it is interesting to learn about different treatments and different countries.

I am in Florida in the United States and originally from Queens, NY. I have been here ten years. I am very happy with my hematologist and the medical care I am receiving. When I went to my doctor and voiced my concerns about Coumadin (like I have a choice) he told me not to worry because eventually it will be replaced with a new drug that does not require all this monitoring.

I read about the drug Dabigatran that one of you is enrolled in a clinical trial. Did you find out whether you are receiving a placebo or not? I am curious to hear about people's experiences with the medication.

New drugs make me nervous because sometimes a drug will be out for a while and then you will see a commercial on TV about a lawfirm wanting to represent victims of certain drugs... I was reassured slightly when my father told me about an 87 year old relative that has been on Coumadin for decades.

Do any of you have any lingering side effects from your DVT's? How are you doing on Coumadin?

Question for the females - How are your periods on Coumadin? I have heard they can be bad??? I am doing okay so far with postpartum bleeding and just stopped today so that is encouraging.

Pam

Pam,

Welcome to the forum.

To answer you question about coumadin, I've been on it since 2001. My first DVT took place in 1992 where I additionally suffered a Pulmonary Embolism. In 1995 I suffered my second DVT. I was on Coumadin from 1995 to about 1999, when my physician decided to take me off of it. In 2001, my doctor recruited for a new trial taking place which looked into the feasibility of placing patients on a low-dose of coumadin with a lower target INR range (1.5 to 2.0). This trial became what is known as the PREVENT Trial. Since then I have been on coumadin and will remain so for life.

In regards to Dabigatran and the other new oral anticoagulants on the market, it will be a few years before they are available to patients. They are still in the Phase III trials and like you mention, the patients who are part of this trial are not aware if they are on the actual medication or the placebo. Rivaroxaban which is a produced by Bayer and Ortho-McNeill is closer to seeking FDA approval here in the U.S. then Dabigatran (Boehringer-Ingelheim) . Apixaban by Pfizer and Bristol-Meyer Squibb is a little further behind but also doing well. It should be noted that Dabigatran is approved in Europe and Canada for use for hip replacement and knee replacement surgery.

Even once all these new oral anticoagulants are approved, it will be years before we find out as patients what the true side affects of long-term usage is. Until then, Coumadin will still be the leading anticoagulant used for us "lifers". A key note, Exanta was touted back in 2003-2004 as the new oral anticoalgulant to take over Coumadin place. This medication was approved for use in Europe. Longer testing here in the U.S. found that patients on Exanta experienced increased liver enzymes and some even died. Exanta was pulled from U.S. Trials and subsequently pulled from the European Market.

Like everyone else I dislike Coumadin, not because of side affects, just because I hate taking any meds. But reality is, without being on Coumadin I will develop another blood clot so in turn, it is my lifeline.

As far as resource, there is some great information on the fvleiden.org website where Dr. Stephan Moll of North Carolina has contributed some information under the "Ask the Doctor" section. Deb Smith runs the fvleiden.org website and is a good friend of mine. The website started in 1998 and has collected a lot of good resource information over the years.

Another site I recommend belongs to the National Alliance for Thrombosis and Thrombophilia (NATT). NATT is an all volunteer Patient Advocacy Organization created by patients. The home office is located in Tarrytown, NY, though members are scattered throughout the country. Their website is located at www.stoptheclot.org .

And of course, for support, I highly recommend the Lifeafterdvt website

Regards,
Tom

Hi Pamela,

Yes, I am the lab rat in the membership...
I'm presently taking part of two different studies, one is called Sox, it's purpose is to prove that compression socks do help DVT outpatients and I'm a firm believer of comp. socks/hose(aka as FUFLIES), they do work on relieving the pain and the swelling.
The second one is called REMEDY, it's purpose is to find out if Dabigatan can be a possible replacement for warfarin/coumadin as an anticoagulant.
I have been on this study since Feb 08 and two weeks after I started it I could tell you that I was NOT doing warfarin, all of the side effects I had with Warfarin(since aug 07) dissapeared one, by one. So short term effects for Dabigatran are non-existant. As for long term side effects, only time will tell, like Tom said. Tom, thank you for the recommendation for LifeAfterDVT, it does mean a lot to me!!!

Just a side note: I have to be monitored as if I was doing Warfarin, INR and the minor diet adjustment (VitaminK intake)
But, if Dabi is accepted by the FDA it should be on the market as soon as 2010, no more INR and vitamin K will not affect it.

Re Socks and Diet

I wear my compression socks around the house and was told by my doctor I did not really have to do that anymore. I am still doing it to ward off any potential circulation problems. I wish I could wear them outside when I walk around but am not. Since I am home with a baby it is working out well!

I asked my doctor if I needed to watch my Vitamin K intake and he told me I did not have to. I forgot his reasoning. However, I am just being moderate. I want to still eat vegetables to be healthy. Now, I am just eating salads and greens but just not too much. Maybe, half a portion.

It is funny how much you crave spinach and collard greens once you know you can't have it! It is the new chocolate cake and icecream for us!
Pam

Hmmmmm, about the wear of FUGLY for me it's the reverse from what you just said... When I'm at home doing nothing I can take a break from wearing it, and when I'm doing walking, working, whatever, it is recommended that I wear it.

I was never told to NOT have greens, we need veggies in our diet, iron deffiency is one thing that comes to mind from NOT eating greens.
All I was told was to be consistant with my portions, not even to change my diet...

Maybe this all different for pregnant mothers and new mothers.