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Ann
1991- 22 years old and a newlywed. On the birth control pill. An active runner, running about 10-12 miles a week. Pain in my leg that I thought was a pulled muscle from running (I had no reason to think otherwise). Pain did not go away and after 3 days, I went to the Dr. He sent me to the hospital for an ultrasound and I had a DVT in my left leg from my knee to my belly button. Admitted to the hospital for heprin therapy. On day two, I complain of pain in the back and nurse ignores me. The next day I tell the doctor and I also mention that is hard to breathe. P.E.s in both lungs. Heprin therapy is successful and I spend a total of 1 week in the hospital and 1 week at home recovering. I go on Coumadin for the next 12 months and they say the P.E.s are a result of the birth control pill.
(For 10 years, when I get a cold and it settles in the scars of my lungs, I think I am having another P.E..)
1992- Terrible pain again in my legs. I am hospitalized again and they do tests. They are unable to determine old damage from any potential new damage to my veins.
1993- I go to Mayo Clinic in Rochester, MN to get a 2nd opinion about my blood and circulation. We are thinking about starting a family. I get the green light to go ahead with getting pregnant. At this time, still no one really knows of FVL.
1995- I have a miscarriage at 8 weeks.
1995-96 I get pregnant again and my doctor puts me on heparin shots at 12 weeks. I give myself shots twice a day and I wear compression stockings. I vacation in Summit County, CO that winter with my pre-filled heprin shots. They explode in my suitcase due to the altitude so I get a crash course in drawing heprin into a syringe. My first son is born in August and those compression stockings were super hot to wear- but a small price to pay for a healthy pregnancy and healthy baby. I stay on the shots until he is 12 weeks old.
1998- I am pregnant again and again I go on heprin shots at 12 weeks. Hot compression stockings for another August baby. You would think that I would learn my lesson. My second son is born in August. Again I stay on the shots for 12 weeks postpartum. It takes about a year for the bruising and scaring on my abdomin to go away (heprin shots site).
2004- I am in the office one day and my leg gets that strange aching feeling. I decide that if it hasnt gone away by 3:00 that I am going to the ER. I go to the ER and I had a superficial clot. I had had a 12 hour car ride about a week before that. The ER staff is very curious about how I knew to come in. I tell them that once you have a clot in your leg, you dont forget what it feels like.
A friend at work (with an interesting sense of humor) comes in my office one day and says Do you have a disease? She has seen an article in Redbook magazine about FVL and wonders if I have that condition. I tell her that I dont know and I pursue the question with my internist. I have FVL but I do not find out that I am homozygous for it until years later.
2010- I am now 40 years old. I take Warfarin each day and will do that for the rest of my life. I get my INR checked each month. Usually I am in a good range. I used to have problems keeping it regulated. I found that getting a Sunday- Saturday pill container helped me to be consistent and not forget to take my pills. My legs are not in very good shape (bad looking veins) but I wear capris or try to cover it with self-tanner. I didnt have pretty legs to begin with- so no big loss. I am active and I walk or do low impact exercise. No more running for me. It makes my leg too sore.
Having had the P.E. at such a young age makes me so thankful for my life, my health and my family.
I have 3 siblings. One has not been tested for FVL. One is heterozygous and the other is homozygous like me. None have ever had any health issues related to FVL (that they know of). My boys are now 11 and 13. They havent been tested, but they will be in the future.
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