Friday, August 21, 2009

DVT, FVL, Lovenox, Heparin . . .

I've been meaning to do this post for quite some time but never seemed to have the time. With my pregnancy nearing the final weeks I thought now would be the best time to try to get it out there. My hope isn't to bore those of you who already know my story but to get everything documented and hopefully help just one person who finds themselves in my situation by telling my story and journey.

In mid-June of 08 I began seeing what I thought to be a few tiny pimples develop on my abdomen. Two weeks later those same pimples had developed into quite a disturbing looking rash. Sunday, June 28, 2008 we decided it was time for a trip to the ER just in case I had been bitten by something. After a lengthy wait I was checked out by the ER doctor. I explained the only symptoms I had were the rash and a little cramping in my right leg. Honestly I've had leg cramps my entire life but for whatever reason felt the need to mention this to her. She examined my rash and determined it was nothing more than dermatitis and prescribed me a topical cream. She then went on to say she was more concerned that I had cramping in my leg and wanted to have a doppler performed on my leg to check for blood clots.

Monday June 29 I visited the cardiovascular dept and a deep vein thrombosis (DVT or blood clot) was found in my lower right leg. I was sent back down to the ER to see the same doctor that treated me the previous day. I was taken off my birth control pill immediately and prescribed lovenox injections as well as coumadin (the lovenox was to protect me until the coumadin reached the appropriate level in my system). I was set up with a follow up appt with my family doctor to discuss a long term course of treatment and monitoring.

I self administered 3 doses of lovenox until my appointment with my family doctor. He felt the risks/inconvenience of taking blood thinners outweighed the benefits. His long term plan was to follow up with another doppler in 3 weeks to see if the blood clot had grown or moved and to start a low dose of aspirin daily. (I will admit I did not take the aspirin daily) The thought was that since my DVT was below my knee I wasn't at risk for a pulmonary embolism (blood clot traveling to the lungs). I was leary but the thought of regular weekly blood testing to check my INR levels on coumadin wasn't appealing either. I decided to follow his plan for the time being but also requested a second opinion. I was referred to a hematologist and scheduled an appointment . . next available appointment when calling at the end of July was for late August - this appointment will go on to be rescheduled two more times before I meet with the doctor in early September.

A week later was my yearly gynecological check up. I explained to my mid-wife that I had been taken off of my birth control pill because of the discover of my blood clot. She was concerned and said she felt there was a need for me to be tested for any possible clotting disorders, especially if I had planned on trying to conceive. My test results came back positive for a thrombophilia know as Factor V (five) Leiden - FVL. I was found to be heterozygous, meaning I have one mutated gene making my blood more susceptible to clotting.

Three weeks later my DVT hadn't moved, grown or changed at all. My rash that caused the discover of my DVT still hadn't cleared up either. In fact it had at this point grown to a diameter of about 8 inches across my stomach. I met with my family doctor once again and we talked about the possibility of Lyme. Test results came back positive. After a month of anti-biotics my rash had cleared up and I was "cured" of Lyme disease.

Early September I finally met with the hematologist. He not only agreed with my family doctor's plan to stay off coumadin but when the discussion turned to any future plans to get pregnant his opinion was disheartening to say the least. He initially felt that since I hadn't had any past pregnancy losses no treatment for my disorder was necessary during pregnancy. This went against everything I'd read online concerning women with FVL and who had a history of clotting as I did. I did not feel comfortable at all going into a pregnancy knowing I have this disorder and knowing about all the dangerous things that could happen to me and the baby - all things that could be prevented with proper treatment. I didn't want us to have to suffer a loss just to make it clear to him treatment was necessary. I communicated this to him and he agreed it was important that I was comfortable with any treatment plan we set forth and said we'd discuss specifics when the time came.

Fast forward to January 17, 2009. We receive our first positive pregnancy test. :) We get an ultrasound at week 6 and week 7 to check for heartbeat. Once everything is confirmed as ok we have our appt with the hematologist to discuss when to start lovenox. I started 40mg of lovenox once a day at week 6. At 22 weeks my dosage was increased to 60 mg once a day to account for weight gain.


Lovenox


At week 35 I then switched to 1.5 mL heparin twice daily. The switch to heparin is in preparation for labor/delivery. The heparin can reversed easily while the lovenox cannot be. Heparin also remains in the system for 12 hours as opposed to the 24 hour coverage with lovenox.


Heparin

After delivery I will switch back to 40mg of Lovenox once daily for 6 weeks post pardum.

Initially the injections caused some major bruising (dark and the size of a quarter) but they became tolerable and with practice I was able to determine what caused bruising and what did not. Taking the injection slowly and being sure to pinch the skin helped cut down on bad bruising for me. Tiny bruises the size of a pencil erasure (and smaller) became common a few times a week however. I never used ice to numb the area as some people recommend. It just seemed too time consuming. I have gotten very used to giving myself the injections in my abdomen. It just became another part of my morning routine . . like brushing my teeth. With the recent switch to heparin I can tell a definite difference in the medication. Not only was the lovenox already conveniently measured out into pre-filled syringes but it also didn't cause me to bleed afterwards at all. The heparin on the other hand is not pre-filled. I have to measure out the dosage and the injections usually cause me to bleed slightly at the injection site following the injection. I've had to either do my shot before a shower or just cover with a band aid to prevent bleeding on my clothing.

With 3 weeks to go I feel very fortunate to have had a great doctor who understood the potential issues with my disorder and who then closely monitoring me throughout my pregnancy.

6 comments:

C and M September 9, 2009 at 7:38 PM  

Jen, thanks for sharing all of this. I know it's been quite a road for you to travel & you've handled it so gracefully.

Stacey February 20, 2010 at 2:56 PM  

I found your blog looking for info on dvt in pregnancy. I had a dvt at 13 weeks (my son was just born 2 weeks ago). You are so much more calm about the situation than I was. Any advice for someone super nervous of a recurrence? Did you go off the Lovenox at 6 weeks? I know its a huge risk to be on thinners but for some reason I'm more afraid of another dvt. Congrats on your little guy-boys are the best. Thanks for any advice you have!!

Jen February 21, 2010 at 2:47 AM  

Stacey - Congrats on your little boy! Aren't they amazing?

Thanks so much for your comments. Trust me at the very beginning of all of this I was anything but calm. :) I did stop the lovenox at 6 weeks postpartum. Do they know why you clotted? Were you tested for all clotting disorders? Where was your DVT located?

I totally understand your concern and fear of a recurrence. I've been there and I know how very scary it can be. There are two things that keep me sane about my situation - we know my clot was caused by a combination of 1. my disorder FVL, 2. my birth control method and possibly 3. lyme disease AND it is below my knee. My hematologist felt it was a combination of those 3 things that led to my clot. Since we were able to alleviate two of those things I feel less stressed about developing a second clot but I am cautious and any warning signs as I do still have my DVT below my knee as far as I know.

My advice to you would be this - You MUST be your own advocate when it comes to your health and your doctors. If there is one thing I learned throughout my whole ordeal it was that. If you aren't comfortable with a treatment plan you must let that be known and not stop until you are comfortable. Whether than be continuing thinners or continued monitoring for future DVTs.

I really wish you all the best and please feel free to email me if you'd like some support from someone who has been in your shoes or have any more questions. :)

PS I know of a great FVL/DVT group on yahoo if your interested as well.

Stacey March 8, 2010 at 1:59 PM  

Jen,
Thanks so much! I didn't see that you had responded until just now. I'd love to email you about this in more detail (if you don't mind?). My email should be on this form, can you send me yours through that? Thanks so much!

Jen March 8, 2010 at 6:30 PM  
This comment has been removed by the author.
Jen November 2, 2012 at 10:09 AM  

Anyone coming across this page may also find this yahoo group helpful to them.

http://health.groups.yahoo.com/group/FVL-PG/

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