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Calling all the factor V Leiden and coumadin gals! Calling all the factor V Leiden and coumadin gals!

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Unread 10-23-2011, 05:42 PM
Calling all the factor V Leiden and coumadin gals!

Just wondering how many of you are on coumadin for a previous DVT or PE?
I have a factor V Leiden mutation and suffered a PE in 2008. I am a coumadin lifer My heme onc follows my clotting issues very closely, and has told me to come off coumadin 5 days before surgery and have me do lovanox shots everyday until after surgery, when I go back on coumadin.

I just want to know how you all did with this condition and with surgery? Were there any extra difficulties as a result of this? Specifically I am concerned with clots, breathing and bleeding. I have my pre op on thursday with my hem onc and will ask these questions, but just wanted some first hand experiences from you ladies.

I am little worried but I know they all will be watching me like a hawk..pre, during and post surgery for complications (if any).
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Unread 10-23-2011, 09:27 PM
Re: Calling all the factor V Leiden and coumadin gals!

I am a Coumadin lifer, too because of Leiden and another genetic mutation. I had a DVT and PE about five years ago. I have had a lap surgery for endo and wrist surgery since the life threatening clots. Also, I have had chronic back pain for the past five years, too, and each time I have an epidural injection in my spine, I have to stop the meds. I usually have to stop seven days before the surgeries. I assume this will be the case with this surgery, too, but my preop visit isn't until next week. Anyway this is the first surgery where major blood can be lost. So, my doc says he will keep me in the hospital longer than average, probably three days at least. I will have the compression stockings and IV blood thinners until the Coumadin becomes adequate again. Lovanox is my path after stopping oral meds before surgery, too. To be honest, the fear of clots is my only fear in regards to the surgery, but they won't allow us to leave the hospital unless they feel we are free from the major risk of clotting. I think it's natural that we have this fear given that we have had serious issues before. Just be sure to talk to your doc about what will be done to avoid as much of the risk as possible. I will let you know what I learn next week. My surgery is Nov. 30th. When is your surgery scheduled?
Unread 10-23-2011, 09:52 PM
Re: Calling all the factor V Leiden and coumadin gals!

I have the factor V leiden gene. I'm homozygous, having it from both parents. Before my hysterectomy I knew nothing this, but at 3 weeks post op I was admitted to the hospital with a DVT. After a year on coumadin, I was taken of it and the doctor did a complete blood workup. I no longer take coumadin, but if I ever have another surgery I will have to do the lovenox shots.

Once I found out about the Factor V Leiden, all my siblings were tested. One sister who has it (heterozygous) had a hysterectomy. She was given lovenox shots before surgery and had to have them for several days post op and did just fine.

You will probably have to have the injections for several days post op too, but discuss this and any fears with your doctor.
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Unread 01-06-2012, 06:16 PM
Re: Calling all the factor V Leiden and coumadin gals!

Hi ladies,

I'm new to this site so forgive me if this information can be found elsewhere. I have Factor V Leiden (homozygous), am a Coumadin lifer, and considering a hysterectomy. I've had 8 blood clots (3 of which were DVT's) and a bleed out during the last 6 years. My Dr. recommended either an endometrial ablation or a hysterectomy to resolve my menstrual cycle nightmare. I've researched ablations and what I found left me thinking "no thanks!". I know tons of hysterectomies are performed yearly and I can find a wealth of information on what to expect, but I'm nervous about how my Factor V and Coumadin use will influence my risk factors with this surgery. I'd really love to hear from fellow "sisters" who have my condition and can share their experiences.

Unread 01-10-2012, 10:30 AM
Re: Calling all the factor V Leiden and coumadin gals!

Hi TG27, Making the decision to have such a MAJOR surgery is a big one.....that has to be carefully researched. It is a routine surgery, and docs may say you'll be up and about in a couple of weeks, but I have now learned to trust the advice on this is MAJOR surgery, with a long recovery time. And with us anticoagulated gals, healing is slower....not impossible, but slower. I am not sure of the exact reason you are considering hysterectomy, but please explore all other possibilities thoroughly before going ahead with surgery. Get more than one medical opinion on alternatives to surgery.
I am going to give you my experience, and it is not meant to scare you, but just to hopefully help you to avoid what happened to me.
I had lavh bso back in nov. I did AMAZINGLY well with surgery, and initial recovery. However, unfortunately, about 3.5-5 wk post op, I started bleeding and finallly hemorrhaging. It resulted in an er trip, where i passed out, transfused 2 units and rushed to emergency surgery, under general again to restich a cuff that would not stop bleeding.
Surgeon said reason was a combination of inr went too high.
Also, because I was feeling so good after lavh, I probably overdid activity a little bit without realizing it. After LAVH, I should have come back on this site for a reality check in terms of rest, dos and donts.
I am 4 weeks post 2nd surgery and doing okay. I had to be off ALL blood thinners for 2 weeks post 2nd surgery. I am back on coumadin now, and I am being monitored VERY CLOSELY....inr checked every 3-5 days until complete healing has occurred. I am taking things VERY easy this time, and follow the advice on this site a lot. I am recovering....much more slowly, but I think I am getting there.

So, again, this is not meant to scare you or put you off surgery. What happened to me is RARE, and I believe truly could have been avoided had I listened to my body, and had INR monitered appropriately. If you have to have hysterectomy, then you have to. There are other women like us who do fine from this surgery and healing......I hope some of them will chime in and let us know that we can be coumadin lifers and still do fine. We just have to be EXTRA careful, thats all. I learned the hard way, but at least I learned! Good luck with your decision.......and please feel free to ask questions on this site. There are so many wonderul women here that reach out and help and provide incredible support. Please let us know what you decide.
Unread 02-21-2012, 04:35 PM
Re: Calling all the factor V Leiden and coumadin gals!

Hi Meezer1,

Thank you so much for your reply. I'm so sorry to hear about the complications you endured and I truly hope that you are doing well now. As I read your post, I could totally see myself in your shoes. I have a really hard time asking others for help and, considering I'm an at home mom, I have a hard time letting things go around my home. My husband is already getting on my case about overdoing things after hearing about your situation. I will definitely keep you in mind every time I want to "clean up a little" after my surgery.

How soon were you started back on Coumadin after your initial surgery? How often were you getting your INR checked? I've already experienced a bleed out in my knee after my INR was allowed to get to high. It was unbelievably painful and I couldn't walk for 6 weeks. I will definitely heed your warning and have my INR checked frequently. I will be honest in saying that bridging my Coumadin is a major stressor for me with this surgery.

I was diagnosed with Factor V Leiden (homozygous) about 7 years. I found out when I developed 8 blood clots in my leg (3 of which were DVT's). I am a lifer on Coumadin because my Dr. tried to take me off at one point and I developed another clot within 48 hrs. Ever since I started Coumadin, my cycles have been horrendous. I've consulted with a few GYN Dr's, but considering my Factor V, my options are very limited. I was told I could either have an endometrial ablation or a hysterectomy. I've researched the ablation option and it is not for me. I've heard from too many women that they don't recommend it and that they had horrible experiences. I've even been told by a N.P. that if she was in my position she'd avoid the ablation. So, that left me with either having a hysterectomy or continuing to deal with my cycles. I'm 38 and have put up with them getting worse for the past 6 years. I can't imagine having them control my life for another 12-15 years.

Thank you again for your reply. Please keep me posted on how you are doing and feel free to pass along any other advice you can think of. I truly appreciate it.


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