Von Willebrand's sufferer - Blood and Blood Vessel Message Board

zuzu23 · 08-11-2002, 11:59 PM

Hi, all. I just wanted to stop by quickly and introduce myself. I am 23, and just found out earlier this year that I suffer from von Willebrand's. I have extremely heavy periods, that can last for up to 2 weeks, as well as a lot of heavy bruising. I was referred to a hemophilia clinic about 300 km's away from here, and have been there once. I go again on wednesday. My fiance and I have been through many miscarriages, and am not sure of the cause of all these.

Anyways, just wanted to see how many of us there are. Nice to meet you all!!

Lady^ · 08-12-2002, 08:33 AM

I don't have the same thing as you, I have something called Factor V Leiden. I too think it has caused numerous miscarriages. What are the symptoms of your disease? For me, my blood clots too quickly. The thought is that each time I was pregnant a clot formed around the embryo and smothered it.

Anyhow, I'm sorry about your miscarriages and although we have different diseases I can understand how you feel.

zuzu23 · 08-12-2002, 09:16 AM

Hi Lady! I remember you; I posted to you once a while back. I have the opposite-my blood won't clot on it's own. According to all they know about it, it shouldn't cause miscarriages, at least not if I'm type 1, which they originally diagnosed me with. But there is some doubt on that, so I'm going into a study on wednesday. I think it caused them-I have given birth twice, and three miscarriages, and in all of them, I bled lightly. But now that my levels dropped, the bleeding never stopped, and at 2nd and 3rd ultrasounds, there was no heartbeat. So I think it kind of wiped the fetus out or something. Anyways, I will find out more this week.

The symptoms I have most are very long and heavy periods (tampon and pad soaked through in sometimes twenty minutes, and lasting for about 10 days!!) and easily bruising. Many sufferers also have frequent nose bleeds. Also bleeding after surgery and tooth extractions.

Anyways, off to work for me. I work in a daycare. Take care, and write back and tell me all about you!!

Kendra

Lady^ · 08-12-2002, 12:00 PM

Well, not a whole lot to tell on this end. I am so happy that you were able to carry some of your pregnancies to term and have kids. I ended up having my tubes tied in June. I just had too much going on...this blood thing, diabetes, Rh negative. The docs said that if I did get pregnant I'd have to give myself at least 3 blood thinner shots a day, and I'd have to go off my diabetes meds and give myself at least 3 insulin shots each day too. Plus the diabetes causes a hostile environment for the baby and they'd be forced to take it as soon as tests showed that it's lungs were developed. Plus I have a history of ectopic pregnancies. Plus I'm pushing 40. So I went ahead and gave up and tied my tubes as I don't think I could've handled another pregnancy loss (I've lost a total of 6, 5 of them within 2 years). I'm a bit bummed now though cause one of my sisters just found out last week that she has the same blood disorder and she had no problems having a baby. So maybe it's not the blood disorder that caused the miscarriages, no one really knows for sure.

How old are your children?

zuzu23 · 08-12-2002, 06:45 PM

I remember, I think it was like the first post I posted here, and I replied to your's about getting your tubes tied. I am so sorry about all the troubles you've had. I really empathyze with you. Did you and your hubby ever get tested to see if HE was okay? Or you just couldn't go on anymore? We have been trying to have a baby since my last miscarriage (March) and if it doesn't happen this time, I will be calling it quits, too. I'm only doing this now because my fiance wants one of his own. After the last one, my ob/gyn referred me to a clinic 300 km's away for testing on us both, but we haven't even gotten an appointment date yet.

My oldest son is now 7. I gave him up for adoption because I was not at a place in my life where I had anything to offer to a baby. He's a happy child, and I don't regret it at all, although I have times I grieve and still (and always will) love him deeply. My other son is now 6. He is the light of my life. I cannot express what having him in my life has meant to me. He truly is an inspiration to me.
Well, I just got home from work and still have things to do around here. Write back and let me know how you are, and anything else you feel like sharing.

Love, Kendra