When things are out of your control...

Some of you may have been following what has been going on this week through Twitter and Flickr. I still can't understand what has happened so I have decided to write about it here in hopes that someone who reads my blog has experienced something similar.

It started early last Sunday morning, I woke up to a sharp pain in my upper arm. So intense that it made me jump up in tears. It felt like someone had stabbed me in the arm or what my brain thought it would feel like if someone stabbed me. I got up and shook my arm out a bit in hopes that it would go away. Max was sleeping in the bed with me and I didn't want to wake him. I layed down and tried to sleep but was unsuccessful. The day started and we got up to meet with family for morning play and lunch. I ignored the pain in hopes that it would go away. It did not. I endured the pain until the afternoon and I think sometime upon returning to my sister's apartment I passed out because of fatigue and pain. I woke up to the most intense pain I've ever felt. My arm was pretty much incapacitated and we decided to go to the ER. 

After waiting nearly 4 hours to be seen due to other cases that were more serious, I was finally sent for a sonogram of my upper extremity and there they found that I had two clots. One in my internal jugular and another in a secondary artery. Both that run from my heart through to my arm. After that diagnosis, I was wisked away into a room and give medication and told to lay down. I suddenly became a priority patient.  With in minutes, I was seen by a barrage of doctors and specialists and told that I was going to be admitted.  All the while, I only knew they found a clot and that I needed medical attention asap. 

Once I was admitted I was given a drug called Lovenox. Apparent this is THE DRUG to combat against blood clots. And the best one to take when you are pregnant. It does not affect the baby because the drug can't pass through the placenta. I was administered a shot in my belly and later learned that I would have to administer this shot myself twice a day until the end of the pregnancy and 6 week postpartum. And I learned that because of the proximity of the clot to my heart (it is located in my chest on the upper left side) they can not operate to remove it. The only thing that can be done is to take Lovenox to prevent the development of other clots and hope that the existing ones do not break off and go where they are not supposed to. Like to my lungs. 

The OB/GYN specialist who followed me explained that it's highly rare for there to be a DVT (Deep Vein Thrombosis) in the upper extremity like the one I have unless I've had an IV port recently or a blood transfusion.  Both of which I haven't had. The last time I had an IV was two years ago for the birth of Maximilien. I have blood drawn once a month to monitor for toxoplasmosis but that is usually in the other arm and the doctor doesn't believe that it came from that. And to my knowledge I know of no other member of my family that has had blood clots so the only other explanation is that pregnant women are higher risk for clotting due to the pregnancy itself. But the doctor didn't seem to really buy into that either because I would have mostly like developed a clot in my leg and not in my upper body. 

All this scares the shit out of me.

So, this is what I know now....

- BB is just fine. She is active and growing and the blood flow through my placenta to her is exactly as it should be. 

- I have to take two shots of Lovenox for the next 4 months and 6 weeks after birth. A shot that I have to administer myself in MY BELLY. I was scared of needles but not anymore... 

- I will probably have to take some sort of anti-coagulant every time I fly now. The reason being that once your body clots like this it has a tendency to keep doing it. Sounds weird but the doctor explained it to me as like Girls Gone Wild, once one clot shows up and decides to hang around others follow suit.  

- I am now considered a high risk pregnancy and probably won't have too much control on how BB will be born. But this is to be confirmed with my own OB/GYN in Paris. The American doctor told me that I would need to C-Section to birth this baby to make sure everything went alright. 

- And the thing that scares me the most is that this clot probably won't go away. And it's in my chest and near my heart. The doctor reassured me that it's much more dangerous to have one in your leg then your chest. Because the risk of pulmonary embolism is much higher but still. It freaks me out that it's right there in my chest. 

I did some quick research of giving birth while on Lovenox especially VBAC and found a thread on Baby Center that was interesting.  I have a lot of researching to do on my part and am anxious to get home and see my own doctor which will entail getting on an international flight again. I am scared. 

So, there you have it. Our vacation so far. Whoopee. 

Anyone who has an experience on DVTs, giving birth on anti-coagulants or any word of support is very welcome. The power of Twitter is amazing. Someone sent me this tweet the day I was released.  But for now I don't even know how to get my mind around all that has happened.  

 

Comments

[kate]

Oh my god! I'm so sorry! I was wondering what was going on because I only saw one tweet but it said something about injections. My thoughts are with you. My mom had a DVT in her leg. Because of her age and a ton of other problems she had health-wise, it caused some problems that became a really big deal for about a year. I don't think she takes anti coagulants to fly though, at least I've never heard about it. And now she's totally fine. She does wear flight socks though to avoid clots. Take care of yourself. xoxo

[gleek]

aimee, i almost just passed out reading your description. you are handling this so well! just keep doing what the doctors tell you to do and get to your OB as soon as you get to paris! hugs to you!

[Veronique]

Wow, that is crazy! I'm sure it makes you want to take a boat from NY to France (I've always wanted to do that :)
It sounds like you're handling the shots like a pro already. Take care!!

[Mary Anne]

I love you...so sorry this is so scary...the good news is that you get to go home, and BB is ok...everything else will be ok...I know it...lots of Omaha peeps of mine are praying for you...
hugs,
Mary Anne

[La Rêveuse]

I know nothing of clots but I know my own heart feels like it's in a vise right now. Oh, honey. I'm holding you and BB in the light. Keep us posted, please. ((((Aimee))))

[Forest Green]

WOW! Please know that you are in our thoughts and prayers.

[Alison]

Ditto what everyone else said. Take care of yourself, Aimee.

[Elizabeth]

This is quite the shock! You'll be in my thoughts and I hope all will be well soon.

[Lisa]

I have tears in my eyes right now. You are in my thoughts as well. Take care Aimee.

[Margaret]

Oh, Aimee, I am so sorry. :( This must be such a scary thing to go through.

After my miscarriage, I had a blood panel done and it showed that I have mutations on my MTHFR gene, which means that my body doesn't process folic acid like it should. And one of the effects of that is blood clots, and so while the exact cause of the baby's death is unconfirmed, the dr. thinks that a blood clot in the placenta or cord caused the miscarriage. What I have is not a true clotting disorder, so my only medications right now are megadoses of B-vitamins and methylfolate (folic acid which is already broken down, bypassing my inability). But depending on complications which may arise, I could be put on aspirin or Lovenox in the future.

No one in my family has had difficulty with pregnancy or clots before me. I inherited one mutation from my mother and one from my father, so they work together to affect me. But MTHFR mutations have been related to other cardiac events and to Alzheimer's, which have occurred in my family.

So my only thought for you would be to ask your doc in France about having a blood panel done to see if you do have a clotting disorder or other genetic component that contributed to your blood clots. It might be relevant to your treatment, and you could still have a genetic predisposition to clots even if others in your family have not.

You are definitely in my thoughts and prayers, that your pregnancy and birth will go safely from here on out.

[Alison]

I'm praying for you.

[mamie]

i think i said it on twitter, but i am so glad you received attention when you did. it sounds like there are a lot of factors in play, but the most important thing is that you are listening to your doctors and looking for accurate information and support. you have my thoughts and prayers in this time.

[Penny]

What a scary thing to happen - I'm glad you got good medical attention fast!

Like your friend Margaret above, I had many blood panels done trying to find the cause of two 2nd trimester fetal demises I had before having my two children. Although I didn't test positive for any of the blood disorders, I managed to find a new OB after my second loss who felt that reduced blood flow to the babies from the placenta had caused their deaths and was prepared to put me on clexane shots once a day for the whole pregnancy. It all seems so long ago now but I think clexane is the australian name for lovenox (could be wrong though!) - in any event its a form of heparin.

As for the births, due to my losses I chose a C/sec for Lily's birth. I was so scared I would lose her otherwise and my OB would not let me go past 39 weeks due to possible degradation of the placenta. We stopped the clexane about 10 days before the scheduled date and all was fine.

Jasper was another story. My pregnancy was the same - clexane shots from week 7 on, lots of bed rest due to bleeding and a huge blood clot next to the placenta, but I went into labour at 35 weeks while still on clexane. We stopped the clexane shots, gave him steroids and held off for a day or two until he was also delivered by c/sec at 35 weeks. All went well although he needed 2 weeks in special care nursery as he was early.

Sorry I cant help you in terms of VBAC while on blood thinners. My OB would have let me try a VBAC with Jasper as I was 5cm dilated and we'd stopped the clexane a day ago but with all my fears, I chose another c/sec. Am I right in thinking clexane/lovenox is out of your system pretty fast (maybe 12 hours or so)? As I said, I've put it all in the past now so the details escape me! I hope your doctor will be helpful/supportive when you get home. Hugs and please email me if you would like any further details

Penny

[Tutu]

Is it possible the Dr said you would need a c-section because they could control bleeding better? If you went into labor with not enough time to get off the meds a VBAC might be dangerous. The outcome you wanted is a healthy baby and safe delivery . . . no matter how it happens. If a c-section is safer for the baby and you then you can't take chances.

[Emma]

Oh Aimee, I'm sitting here in Paris reading this and I just want to send you lots of hugs. I'm glad you got it all checked out properly and that the baby is fine. Lots to take in at the moment - I know a friend who had a similar thing happen in her pregnancy. If she has anything relevant to share, I'll pass it sraight on to you.

[deb]

just wanted to send my healing vibes to you, aimee. . .heal, heal, heal.

[The Bold Soul]

Wow, I am FLOORED. Totally floored. I have no experience in my family with this kind of thing and wish I had more practical advice to give. But here's what I DO know: I believe, strongly, that you can do a lot to help yourself through this by visualizing yourself as perfectly healthy and whole already. Of course, you will continue to work with your doctors for treatment, but the more you can de-stress yourself and focus on perfect health and see the clots harmlessly dissolving into nothingness, the better you'll be. Seriously. And Georges and I are both sending you love right now, to all of you. All will be well, I know it.

[Caroline]

Hi Aimee,

I have no experience with all the stuff you are dealing with, but while I was pregnant I wanted to go back from the US to France to see my family. I ended up canceling my trip because of the risk of blood clots. The past trip while not pregnant, my legs had hurt a lot and the doc in the US said he really didn't want to see me on a 12-hour plane trip (west coast) even if it was direct while pregnant. You have more blood while pregnant so you are at higher risk of developing a blood clot since the blood can pool more, especially on long flights, but it is usually in the legs. You are on anticoagulants now, so this might not be necessary, but what I read for DVT (in legs at least) was:
1) make sure you have compression socks (they make these for pregnant women too, for example at Motherhood Maternity), [I got some Sigvaris travel socks at my neighborhood pharmacy in France and they are awesome, makes traveling completely different: http://www.sigvaris-export.com/prod_web/Export.nsf/vw_docnavi/A573349F878EB70BC12573A600501A55!opendocument. PS: if you have a good pharmacy in France, they can recommend the best size and type]
2) make sure you drink enough (it comes out to A LOT of fluid to drink enough on an airplane because of the "dry air"),
3) make sure you get up and moving at least once every two hours.

I don't know what still applies when you already have a clot and when it is not in the legs.

Although, don't sweat the birth. I did the fully natural birth, because it is how it happened, and it was nothing to write home about.

Best of luck to you and the baby,

[Antipodeesse]

The only good thing about all this is that you are obviously getting very good care. Chin up Darling, we are all thinking of you back in France!
xxx

[Dana]

Hi, I'm a MESSAGE member here in Paris, thought I'd chime in since I've been dealing with a blood clot (in my leg) for the last 10 years, and through two pregnancies and VBACs. I'll give you whatever info might be helpful, and you can feel free to call me at my office (drop me an email or PM through MESSAGE and I'll send you the number).

To make a long story short, the clot developed in my left leg a few weeks AFTER I gave birth to twins, via c-section. I was hospitalized at a French public university hospital (i.e. CHU), put on Lovenox, the whole bit.... As part of my treatment, they took lots and lots of blood to test for known genetic markers (and to keep for furture testing, in case new genetic markers are discovered). I found out I have a genetic predisposition to blood clots.

I had to take the Lovenox, in my stomach for three months. For a variety of reasons (genetic predisposition, fact that I developed the clot despite having been on heparin after the c-section) my doctor also wanted me to take the Lovenox FOREVER, but I begged and pleaded (I HATED THOSE SHOTS) and she presented my case to her committee and finally we agreed that if I ever was pregnant, had surgery, etc. I would go on the Lovenox, but until then I could go off.

So, during the pregnancies that followed (babies #4 and #5) I had to take the shots once I got to a certain weight -- good news was that they said I could take it in my legs (alternating) rather than my stomach. By the fifth child I was also covered by French social security, so the medicine was free (because I was pregnant), which is nice since it's so expensive.

There was never a suggestion that I'd have to have a c-section due to the clot -- and in the end, with the help of a doula/midwife and the grace of God, I managed to have a natural VBAC for both babies. I think I had to continue on the Lovenox for a bit after the births, maybe three months?, and now I have a specialist (Marc Fitoussi in the 8th) that I see to check on it and prescribe the lovely and oh-so-chic compression stockings that I'll have to wear the rest of my life (I have to grudgingly admit that they make a big difference).

Well, that's all I can think of, but again, feel free to give me a call if you'd like to talk to someone who's kind of been there. Extrapolating from my own experience (but again, my clot didn't show up until after the twins' births) that you should be able to do the shots in your leg (if that helps!) and that a VBAC shouldn't be automatically ruled out simply due to the clot....

In any event, do what they tell you and don't stress too much -- it is a serious condition, of course, but it's manageable and, significantly, is not harmful to the baby. So take care of yourself and the little one, take your damn shots and wear your damn stockings :-), and try not to worry about it too much.

[Kirsty]

Hi Aimee, A long time lurker here from Australia chiming in to support you at this stressful time.

I lost a baby at 26 weeks and following an autopsy the best 'guess' they could come up with was a possible clot (which I find weird because I've always considered myself to be a bleeder ie a small shaving cut would take 30 minutes to stop bleeding) Anyay the solution was for me to do Clexanne (Heparin) injections in my stomach daily throughout my entire pregnancy next time. So I did as I was told and injected myself over 250 times and gave birth via emergency C-Section to a healthy baby boy. I was never told I had to have a C-Section because of the drugs - it just worked out that way because he came early and was in distress.

My thoughts are just to do whatever it takes to get your beautiful baby - Mammas are strong and can do anything. I'll be thinking of you and checking in regularly. Take Care XX Kirsty

[Margaret]

I'm just catching up with all my favorite blogs and just read this post. Oh
Aimee, I can't give you any medical advice or pregnant mom perspective, but I'll hold you, BB, Max and J deep in my thoughts and in my heart. It sounds like you have a very good handle on the medication angle. Do whatever you need to do to take the best care of yourself and BB. Keep breathing and envisioning all the great days to come!!

[JChevais]

Aimee, I'm so sorry that this is happening to you but thank goodness we live in the age we do. Really. I'm sending you muchas good vibes and love and am looking forward to seeing you again sometime soon (gads it has been awhile!)

Lots of platonic gurl powah luv

Jennifer

[Abigail]

oh Aimee - I'm so sorry to read this and totally understand how frightening it must be! I'm joining the ranks of the prayerful for you and yours!

I hope your able to enjoy your time home in any case.

love,
Abby

[Diane Schwob]

Aimée,
Just read all about your problem thanks to Abby who put a notice up on the Oisivithé Forum.
I'm glad that you're being looked after and that you're with your family.
Will send wool fumes through the air to you to help you through the tough times.
Garde la morale,
Diane