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Factor V Leiden risK Factor V Leiden risK

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  #1  
Unread 02-17-2002, 07:48 PM
Factor V Leiden risK

Hi all,
Is there anyone out there who knew they had factor V Leiden before they went into surgery? If so, how did you feel confident that you would not have a stroke or bleed out on the table? Just lost a cousin Jan.6, to it and another cousin just released after 3 weeks in the hospital with a 90% blockage (pulmonary embolism.) I will be tested this week. If I test positive for the factor I don't think I will have the hysterectomy. The risk is too great. Anyone go through this?
Maralyn
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  #2  
Unread 02-17-2002, 07:57 PM
Factor V Leiden risK

Hi and welcome!

We have a few ladies here who have this condition. We have had a few threads on it...this is a link to the most recent. Hope it helps a bit!

https://www.hystersisters.com/vb2/sho...eiden+Factor+V

You can use the search engine (little purple button at the top of each page) to find the other threads.

Good luck, and I'm so sorry about your cousin.


Karen
  #3  
Unread 02-17-2002, 08:15 PM
Factor V Leiden risK

Maralyn, I have Factor V Leiden, but I didn't know it before my surgery. I have it from both parents (homozygous). Once I was diagnosed, my siblings were also tested. I have 10 brothers and sisters. Only one brother is homozygous, two sibs don't have it at all, and the others have it from only one parent (heterozygous).

It's possible that even if you test positive for Factor V, you won't be put on coumadin. I only took it for a year, but that was because I had a clot after my surgery. If I should have another clotting episode, I'll be on coumadin for the rest of my life. None of my siblings are taking blood thinners even though most of them tested positive.

Having this clotting disorder doesn't mean that you can't have surgery. If you discover that you have it, you'll need to get a good hematologist who will work with your surgeon. Extra precautions will be taken to assure that you won't have a problem with clots during or after surgery. If you find that you do have the clotting disorder and you will be taking blood thinners, you will be taken off them for the week or ten days prior to your surgery.

Here's a link to some information about Factor V Leiden.

http://www.fvleiden.org/

If you have any questions, please feel free to email me.

Best wishes,
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  #4  
Unread 02-17-2002, 08:29 PM
FVL

Thanks Karen and Catherine,
I will hurry to read all I can...Catherine what a family history!My mother has been on blood thinner for 42 years with cloths to the intestines, lungs etc. I just happened to mention it to my doctor and she took a big step backwards. I will be tested and go from there. Meanwhile, I will read, read, read. Thanks,
Maralyn
  #5  
Unread 02-18-2002, 10:14 AM
Factor V Leiden

Hi! Yes, I knew I had Factor V Leiden before my surgerY, SO i KNOW HOW WORRIED YOU MIGHT BE FEELING.
In no way do I want to scare or worry you more by telling you too much, but I know researching and knowing ahead really helps me deal with things.

SO, HERE GOES:
I had to have the surgery. The cyst couldn't stay ,the prolapse was a surgery just waiting to happen sometime in the future, and rectocele was a major quality of life issue I opted to do them all and risk the anesthesia and blood clotting issues only once. That is one reason I let them have the healthy ovary as well.

The plan was if they found cancer and had to do TAH and all the rest involved with that, they would shorten the surgery time by leaving the rectocele repair undone. The longer you are under general anesthesia the greater the clotting risk becomes. It has to do with slowing your bodily functions down so much.

My dr. and hematologist worked together on what would be the best route to take for me considering and concerning the Factor V Issue.

They took preventive measures for me to minimize the possibilities of any clotting problems. I have not personally had any clots, but I have relatives who have died with their first event and others who have come close. All my aunts on Dad's side have suffered with phebitis since I can remember. That is chronic and miserable stuff.

In my case, they gave me a shot of blood thinner (Lovenox) just prior to surgery. They planned to keep me on that for a month afterward. It is one injection a day.

I am the most squimish person I know. I used to nearly faint if I cut myself just a little bit, or when I went to see a friend in the hospital who had just had a baby or was in for dermatitis. When my kids needed stitches, I did worse than they did!

I did not know they had planned for me to give myself shots! I did not think I could do it, but I HAD TO, so I got brave and they taught me and I did it. If I could do it, anyone could!!!!!

You probably won't get to have all the fun I had with blood thinners. But, here's my story.

Anyway, I developed a rash. Not a typical drug allergy rash but, to avoid any possibility of my developing life-threatening allergic side effects to the Lovenox, they switched me to Heparin , which was two bigger injections every day and from there to Coumadin which is a tablet, but has to be closely monitored and is not usually used short-term. So, I got the grand tour of blood thinners. I had to see the hematologist quite a few times in the course of treatment which lasted 6 - 7 weeks because of the rash and then the monitoring for the coumadin, which was 2x week at first.

Another thing to be aware of is this: If you have any symptoms that could indicate clotting problems, the blood thinner minimizes but does not totally prevent these. Don't hesitate to call dr. Also, if your legs feel sore, DON'T LET ANYONE RUB THEM. If there is a clot forming that could loosen it AND LET IT GO TO YOUR LUNGS..

I forgot to mention the compression stockings that hook up to that machine. At my hospital everyone got those, but they kept them on me for as long as I was there. I was strongly encouraged by my dr. to walk The dr. got really mad at the nurse because she did not bother to get me up and take me for a walk the 2nd day. She still didn't do it!!!! It would bea very good plaln to have a friend or dh come and take you walking a few times at intervals during the day. It isn't possible to go by yourself at first. You are too tipsy and have all that IV and catheter stuff to deal with.

If I can help in any way feel free to e-mail me or use personal messages.

Best wishes. Let me know how you do.
  #6  
Unread 02-18-2002, 02:53 PM
FVL

Oh, thank you for all the information you shared. Of course the thought of giving myself shots makes me feel weak. I guess the most important thing is to know that you have the factor before the surgery instead of having a clot and finding out when you're in trouble. like Catherine. It seems like pre-op should do these blood tests on everyone prior as standard proceedure. Honest, if I would not have told my doctor my concern I doubt it would have come up. Glad you had no clots...guess it paid off. And knowing that you had no choice in the matter left you no options. You must be proud and feel good knowing that you came through..for yourself.
We are, as you must know by now, the stronger sex! I've copied your reply and put it in my folder for reference. You've been very helpful. Thank you again for taking the time to respond...my best to you.
Maralyn
  #7  
Unread 02-19-2002, 07:59 AM
Factor V Leiden risK

The tests are very new and very expensive and are only available at a limited number of labs nationwide. It took 3 weeks for the result to come back. My dr. would only order them because of the strong family history I produced. I had it done because my aunt and uncle both died from blood clots during their "excellent" recoveries from surgery! I have a cousin who almost died and has permanent damage to one lung. He had not had surgery or any other kind of trauma. Finally went to the dr. for what he thought must be pnuemonia and found out it was numberous clots in his lungs. All my aunts (5) on that side of the family have suffered with chronic phlebitis for years.

There are other factors involved with blood clots, too. So, those not presenting with Factor V could still develop clots.

My hospital did not even do lung xrays or ekgs because they are not cost effective at all. ????
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