(Closed) Blood clotting problems

posted 8 years ago in Wellness
Post # 3
Member
8353 posts
Bumble Beekeeper
  • Wedding: March 2011

I am not going through this and I have never heard of it, but I suggest that if you feel uncomfortable with what your doctor is telling you, you should get a second opinion.

Post # 4
Member
30 posts
Newbee
  • Wedding: October 2010

I was diaganosed with Factor V about 7 years ago. I was told that when I get pregnant I’ll have to take blood thinners. When I go on long trips that I need to make sure I get up and walk around on the plane or get out of the car often so that I’m not constantly sitting still. Also, a week before I go a long plane ride or car ride I’m suppose to take baby aspirin to thin out my blood and take it while I’m away and a week after I get back. I haven’t had a blood clot yet, but I take precaution.

Post # 5
Member
70 posts
Worker bee
  • Wedding: October 2010

I don’t have Factor V, but I have another clotting condition and am fairly familiar with Factor V.  I would definitely get a 2nd opinion.

Its true that you need to be very careful with birth control (no pills for me), and careful flying as well – but there is no reason you can’t do it. I fly all over the world for work, and i just take a lot of precautions (I wear compression stockings every day, but wear a higher compression when flying, plus extra aspirin, walk around often, and you can do exercises in your seat to help with blood flow). I have the mindset that I won’t let my condition stop me from living my life the way I want to. It may be more difficult, and I am willing to do whatever precautions necessary, but I’m still going to enjoy travel without being paranoid about it. 

Is the doctor who tested you a general physician? Perhaps you can go to a specialist to get more information.

Post # 6
Member
94 posts
Worker bee
  • Wedding: September 2011

Just saw this but wanted to reply. I have Factor V, I was diagnosed a few years ago. Pretty much same situation, I was tested b/c my dad suffered multiple blood clots and he was diagnosed. Both of my sisters have it as well. My dad has had blood clots in both legs, and pulmonary emboli (one clot in each lung) but he survived!

It sounds like your doctor gave you some accurate information, in that taking hormonal birth control would put you at much higher risk (for me I just don’t take the birth control pill and never will, condoms only), and that you will have to have some type of blood thinner during pregnancy.

As for the flying thing, it is a bit strange that he said you would “talk about it when the time comes.” I don’t see why he couldn’t have explained things then. I flew to spain (8+ hours each way) two years ago, and to prep I took a baby aspirin a day starting two weeks before the trip, and throughout the trip (doctor recommended.) I also got up and walked the length of the plane and stretched frequently – people looked at me funny, but who cares. My dad, even after the blood clots, flew from NY to Alaska, he just took aspirin, wore compression socks, and kept himself moving.

The only other thing I’d point out is that if you ever need to have surgery or be bed-ridden for any length of time, make sure doctors know you have Factor V. Lack of motion (I’m talking like days) or surgical wounds healing could lead to a clot.

If you’re not totally satisfied with what your doc said, see a hematologist. I am sure your dad must have one?

Good luck!

Post # 7
Member
179 posts
Blushing bee
  • Wedding: April 2011

I have a blood clotting problem, but it’s the opposite of yours- mine is called ITP, and it’s very mild, but I have to be careful if I ever get pregnant because it’s a little more difficult to staunch bleeding. Blood disorders are tricky though, I would definitely get a second opinion – ITP is a “diagnosis of elimination” or something like that, where I was tested for everything under the sun before they diagnosed me. I saw several different specialists as well. Best wishes to you!

Post # 8
Member
3295 posts
Sugar bee
  • Wedding: May 2011

i dont but my cousin does (we are very close). anyways her doctor is the same as yours… very careful. she wanted to get pregnant and didnt even know she had factor v until she miscarried 3 times… she is now in her first trimester and takes heparin everyday and also wears compression stockings at night… before she was pregnant she prepped by taking baby aspirin. anyways… you can always get a second opinion, but i think what hes telling you is pretty normal.  as far as flying, i think if you wear the stockings and/or get up and walk around while on the plane, you should be fine. dont let him scare you 🙂

Post # 9
Hostess
18643 posts
Honey Beekeeper
  • Wedding: June 2009

I know this probably isn’t what you want to hear but please be careful.  My mother died from a pulmonary embolism with very little warning.

Post # 10
Member
94 posts
Worker bee
  • Wedding: September 2011

@MrsSaltWaterTaffy: Oh of course, I don’t think anyone was telling the OP to dismiss anything her doctor said. Knowledge is power, so now that she knows her diagnosis she can take precautions. Just out of curiosity, did your mom have any diagnosis of a clotting disorder before the pulmonary embolism? I am so sorry for your loss…it must have been very difficult to have it be so sudden.

Post # 11
Member
2 posts
Wannabee
  • Wedding: July 2011

I was diagnosed with FVL (Homozygous) August 22, 2007…  I had a pulmonary embolism.  I was 27 years old, not on birth control, a non-smoker, active… everything I should be to avoid a clot.  I was told over and over how lucky I was to have walked into that ER alive, and they weren’t providing any real positive likelihood that I would survive it–but that we would try to treat it and hope.  

Many people have FVL, but most are heterozygous for the condition.  Many people who are heterozygous never have a clot, they may not even find out about it unless another family member is diagnosed.  That said, I would encourage really following what your doc recommends.  If you pursue pregnancy, do talk with your OB well before and discuss whether or not he/she would like you to coordinate with a high risk OB.  

Many women find out about FVL after multiple miscarriages, a clotting episode during labor & delivery, or through a stillbirth.  I pray I never go through these things and I believe my daughter’s uneventful birth (in 2005) was truly a miracle.  I don’t know how she made it here healthy, and how nothing happened to me due to the FVL at that time.

My sister, mom, and many of my relatives are heterozygous.  They are treated through more caution with things like surgery as well as the doctor limiting birth control options.

I have been on Coumadin since my PE, and due to being homozygous and having had the PE, I will be on lifelong Coumadin therapy.  Like you, should my fiance and I pursue pregnancy, I will need to use Lovenoxx/Heparin (it doesn’t cross the placenta and Coumadin does) prior to the pregnancy (as we TTC) and throughout the pregnancy.  I think they monitor pregnancies in heterozygous women similarly but I will have frequent ultrasounds to monitor fetal growth.  

As for birth control, the options are extremely limited due to Factor V.  I’ve had an IUD for a couple of years now and that has been a wonderful option.  Aside from that it’s pretty much barrier methods that are allowed.  

I know it’s scary–for a good year or so after my PE I would have scares when I would feel the same pain in the same place as I did when I had my PE.  I’ve had a number of CT scans to make sure I wasn’t having another PE.  I have to have my INR monitored at least monthly, and often times more than that when it’s unstable.

I hope this helps… at least to know there are others out there going through similar things!

Nicole

Post # 12
Member
94 posts
Worker bee
  • Wedding: September 2011

Thank you Nicole for sharing this! I am so glad that you are alive and well after the PE. Would you believe I don’t even know if I am homozygous or heterozygous for FVL?? The doctor never mentioned it. I will now be calling to ask, or to get new blood tests to find out. Thank you!

Post # 13
Member
2 posts
Wannabee
  • Wedding: July 2011

They should be able to tell you from the original tests but I’m happy to share!  It’s great to be able to share these sorts of things with other people… feel free to email if you want to talk further about it sometime.  [email protected]

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