Lifetime Therapy of Warfarin at 10 milligrams a day since 2011. I have a Genetic Disorder Protein S and C deficiency

[robinbird]

I have had multiple PE's Bilateral Medium and Small with 50% chance of living.

in 2011 I was told If I wanted to live I would have to keep my INR between 2-3.5

and order to achieve a 2.0 and above I have been taking 10 milg. - 15 a day.

I stick to the no Vit. K etc.... diets I have had all kinds of surgeries I am 57 female.

I push through every day fighting fatigue, tiredness, easily bruised, healing very slowly, I have to go to my hematologist sometimes every week, twice a month has

been few and far between as I have had to bridge over the warfarin for so many surgeries or procedures with Arixtra shots in the stomach before and after each. I am also allergic to Heparin. My surgeries include 10 inches of my colon removed from

bleeding ulcerated colitis and diverticulitis in 2015. I had stomach and esophagus surgery called Nissin in 2016. I had my gallbladder removed March 2017. I had several ovarian cyst bursts and bleed for 10 days or more each time. I Had a DNC

and the Dr. found cervical precancer which I had a leap to remove but dr. couldn't

get it all so had to have a complete Hysterectomy May 2017. In April 2017I had a hemorrhoid fall out and had double hemorrhoid surgery. Bridging over with the shots in the stomach each time. It is November 2017 and I am still not healed.

I reached therapeutic INR and my hemoglobin was 14.1 then in less than 12 days

it dropped to a 12.8 I am bleeding somewhere. started with gastro dr. had colonospy two weeks not the cause of bleeding. endoscopy Saturday 11-11-17 didn't see anything that would cause bleeding no tears etc.. but waiting on biopsies to come Abdominal CT scan is scheduled for tomorrow for all my drs to look at. Sometimes

I wonder if the warfarin is deteriorating my organs? I hurt really bad in my body but

I do not take anything but when severe a tylenol. I feel so overwhelmed My gyno dr.

said I have no healed I still can not have sex its been 6 months and it hurts so bad.

But I can not go one day without taking the shots or 10 milg. of warfarin. My insurance will not pay for the other blood thinners. and my Hemo Dr. has to draw blood every visit and ck. INC and usually a CBC. Is there anyone out there that is

having to such a high dose of lifetime therapy of blood thinners or do you have a

Protein S and C. deficiency? Please I really need to talk to someone that has this

genetic disorder

[moo196]

Morning, sorry I don't have a real answer, but do sympathise. I don't believe the newer type of anticoagulant would be better. Most of all is that is non reversible in the event of any accident or urgent surgery required. Warfare is tried and tested.

Good luck!!

[AnneTS]

Dear robinbird. I am so sorry to hear of your health problems. Unfortunately you are not alone in your blood clotting disorder. I have a genetic blood clotting disorder which I have passed on to my children. It led to the early death of my father and his brother so I do think if you are able to afford it and have children it may be helpful to have a genetic test. In this country the INR target is usually 3.5 for PE's such as yours. When I have to have surgery I also have to have an IVC (inferior vena cava) filter put in place under x-ray imaging to ensure that no blood clots form during any surgery. The filter is removed after about 5 days post-op. I have been on warfarin for 30 years without many problems. There were a few in the very beginning whilst my blood got used to the new regime etc. One of my PE's has remained in my lung for 30 years and has now fossilised apparently!! I can thoroughly recommend self-testing for your INR. I use a Coaguchek monitoring machine and only have to check in with the INR clinic every six months to see that the reading from my home monitor is the same as the reading from the venous sample taken at the clinic. Self-testing certainly gives you freedom to go on vacation or to check yourself if you fall ill etc. Blood clotting problems are also associated with antiphospholipid syndrome (Hughes syndrome) which you might be interested to read on their website. Take care and be very gently with yourself. You've been through a lot and deserve to be pampered. Anne x