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antithrombin 3 deficiency/blood clots/surgery antithrombin 3 deficiency/blood clots/surgery

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Unread 11-14-2003, 08:27 PM
antithrombin 3 deficiency/blood clots/surgery

Hi everyone!

It's been a while since I have posted. Life just keeps getting more and more exciting for me

Ok, my latest surgery was on 9/3 and I developed blood clots in both lungs during the surgery. Now, 2 months later, I got the news that I most likely have antithrombin 3 deficiency, which basically means I run the risk of developing blood clots again and I will have to be on Coumadin forever. I did not get the official diagnosis yet. I had the blood work done and my antithrombin 3 was low, so I'll be re-tested again in February and if it's still low, I will be seeing a hematologist.

I have been off of BCP's for 2 months now and the horrible PMS symptoms are back, including the awful ovarian pain. I can't even consider having my ovaries removed at this point, but I'm not ruling it out completely for sometime in the future. I made a promise to myself when I was in the ICU with the blood clots that I will never have another surgery again unless it's life or death. I guess I figured that any amount of pain was better than dying from blood clots. Well, now I'm on my 2nd cycle since stopping the BCP's and it's painful! I don't want to go through this every month for the next 20 years!

Does anyone here know anything about antithrombin 3 deficiency? I want to know what the risks of having surgery are if I do have AT 3 deficiency. I don't think I can go through with another surgery because what if I develop blood clots again and this time I die??? I was told they'd put me on Heparin before my surgery and after(if I ever have surgery again), but I have to wonder if I'm still at risk of clotting even if I'm on Heparin. Does anyone know anything about this?? I don't think I could go through another surgery until my kids are grown(in 13 years!!!!), but I'm just looking for some info, just in case.....
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Unread 11-15-2003, 05:13 PM
antithrombin 3 deficiency/blood clots/surgery

Oh ((((pasdechat)))) I'm so sorry you had to go through this scary episode while you were recovering from your last surgery

Since blood clotting disorder is one of the diseases present in my family history, that is one thing that interests me. I have no insight to offer about antithrombin 3 deficiency and the risks of having additional surgery, but since your doctor plans to refer you to hematologist, I'm sure that he/she will be able to answer your questions. Hopefully, another surgery does not lurk in your immediate future.

Sending lots of s our way.
Unread 11-15-2003, 07:05 PM
antithrombin 3 deficiency/blood clots/surgery

Hi (((pasdechat))) I don't have personal experience with Antithrombin III deficiency but was able to find lots of info on it... a couple of these sources have info on precautions taken with surgical patients with Antithrombin III deficiency:

I think, though, that the best person to answer questions for you about your specific case would be a hematologist. Why not consult one sooner rather than later? It might help put your mind at ease.

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Unread 11-17-2003, 08:30 AM
antithrombin 3 deficiency/blood clots/surgery

I don't have the same *blood clotting disorder* as you but I do suffer from one as well. I have Antiphospholipid Antibody Syndrome, also known as Hughes Syndrome. Mine is from the Lupus anticoagulant. It helps immensely that your Drs. are aware of this condition before you undergo surgery For any these DX's aren't made until they've experienced an episode such as yours after surgery :-( My PCP knew I was having problems w/ superficial blood clots & several recurring episodes of Phlebitis. I was on Coumadin for the prior 6 months leading up to my Hyst. My PCP stopped my use about 6 weeks or so before my Hyst, during each of my surgeries, while recovering in the hospital, I was given daily shots of Heparin in my tummy...OUCH!! The fall after my last surgery, I was referred to a Rheumy that DX'd my FMS/CFS she was also concerned about various other conditions be a possibility. I had several symptoms of Lupus....when she did the 1st set of Bloodwork, I was informed that my blood was clotting abnormally. Further tests revealed the Antiphospholipid Antibody Syndrome that carried the Lupus anticoagulant. Since I had experienced no Deep venous clotting I was put on Aspirin Therapy Vs the Coumadin. I was relieved..while on the Coumadin, I was at my Drs. office every 2-3 days have my PTT tested. I still undergo blood test every 3 months to monitor this & my pre-Lupus dx. Since there is no cure for Lupus, I'm just being treated w/meds specific to that condition.

((Linda)) listed some wonderful info IMO, read all you can to educate yourself on this condition as w/ any other possible or + DX. I've had what I've learned of my own come in to play a few times when Drs. weren't aware I had it for whatever reason or possibly overlooked it. My Pharmacist is also aware of it & has had to call certain Drs. about meds they've prescribed...ones that are clearly marked as not to be used in patients w/ Blood clotting disorders so pls inform your Pharmacist as well. I found a few other sites I thot might be of interest/help to you as well:

Blood tests are essential in diagnosing suspected bleeding disorders. These include a complete blood count (CBC), clotting studies, and chemistry tests:
If scheduled for surgery, ask your doctor about administering heparin during and after the operation. If possible, gentle exercise during recuperation will promote good circulation.
Specialised services for hemophilia and other related bleeding disorders:

Here are a few that contain prevention methods used after surgery:

Aspirin helps prevent blood clots after surgery:

Understanding Blood Clot Prevention (Deep Venous Thrombosis):

The risk of developing DVT is much higher following surgery involving the pelvis and the lower extremities. There are many reasons that the risk of DVT is higher after surgery. The body is trying to stop the bleeding associated with surgery and the body's clotting mechanism is very hyperactive during this period. Injury to blood vessels around the surgical site from normal tugging and pulling during surgery, can set off the clotting process. Finally, blood that doesn't move well sits in the veins and becomes stagnant. Blood that sits too long in one spot usually begins to clot.
Reducing the risk of developing DVT is a high priority following any type of surgery. Things that can be done to reduce the risk of developing DVT fall into two categories:
Mechanical - getting the blood moving better.
Medical - using drugs to slow the clotting process.

Blood that is moving is less likely to clot. Getting YOU moving so that your blood is circulating is perhaps the most effective treatment against developing DVT. While you are in bed, there are other things that can be done to increase the circulation of blood from the legs back to the heart. Simply pumping your feet up and down (like pushing on the gas pedal) contracts the muscles of the calf, squeezes the veins in the calf, and pushes the blood back to the heart. You can't do this too much!
I also wanted to echo ((Linda's)) suggestion about consulting w/ a Hematologist They will be better versed in this area & more apt at helping monitor as well as prevent future episodes!! Good Luck (((Pasdechat))) & pls keep us posted.....((((hugs))))
Unread 11-17-2003, 10:30 AM
antithrombin 3 deficiency/blood clots/surgery

Thanks ladies I appreciate the links and info, I have been reading as much as I can to learn about this. I will be seeing a hematologist in Feb/Mar....Towards the end of my 6 months on Coumadin, I will have more blood work done and depending on those results, I will most likely stay on Coumadin!

I saw my surgeon a few days ago and gave him an update on me and he said "well, atleast we caught it before you dropped dead from a blood clot." I guess he's right, but it's still all pretty discouraging. I know I'll be fine, but I have been so looking forward to a life without medical problems and pills. It's looking like that will never happen.

Well, I'll keep you posted and let you know what happens.

Thanks again!
Unread 11-17-2003, 06:22 PM
antithrombin 3 deficiency/blood clots/surgery


Oh gosh I have missed all this. I am so sorry I wish I knew some advice to give...just know I am thinking and praying for you!!!

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