Tammy Smith

My name is Tammy. I was diagnosed over 17 years ago with Protein S deficiency. I have been through a lot with blood clotting and feel I have a lot to offer as far as advice and support to people who are going through clotting issues.

Let me tell you my story..... I had my son when I was 21. Six weeks after the birth of my son, I developed a DVT and then a PE along with it. My doctor at first attributed it to birth control Pill. I had never been on any type of birth control before that.

The only clotting history in my family was my mother's half sister died from a PE. My mother's grandfather had also died of a "heart attack". Way back then, I think that the protein S had not even been thought of. Then I got another DVT. Since then I have had many DVT's and two other PE's, along with many superficial clots. I have been on coumadin for 17 and a half years now and will be on it for life. My doctors are at Dartmouth Hitchcock Hospital. It is one of the biggest teaching hospitals around the Northeast. I have seen three hematologist there, with the last one being the lead hematologist. My cousins (the ones who's mom passed from a blood clot) where found to have the protein S deficiency. I have had at least three of the protein S tests along with many other tests to find out what is causing this. My protein S test had varied between being borderline normal to being very low.

My doctor says I might have Factor V Leiden as well. I have never been theraputic. I take 15 mg of coumadin a night on most nites, depending on my INR test. My INR has been as high as 23.3 and as low as 1.0, with no real reason for it to vary.

At times I get tired of nurses and my doctor asking me how come it is varying like it is. I realize everything basically interfers with coumadin. I cannot take warfarin because that does not show up at all in my INR test, leading my doctor to believe that my body is warfarin resistent but not coumadin resistent.

When my INR is low, I have to take lovenox shots along with my coumadin to prevent clots. When my INR is above 10.1, I have to get a vitamin K shot and be retested in two days with sometimes as soon as the next day.

Since being on coumadin, I don't think I have been able to go longer than two weeks without being tested. My left leg, the one where the first DVT was, is pretty much shot. My doctor says that the damage all the clots have done is pretty bad, hence the diagnoses of chronic phelbitis syndrome, chronic DVT, and thrombosisphelitic or something like that. I have bad pain in the left leg that is some days pretty much unbearable, but because of the coumadin and my blood clotting, I am limited to the meds I can take.

Then I was in a bad motor vehicle accident and cut open my head and broke everything connected to the knee cap in my right leg. After the surgery to repair the knee as best they could, a DVT developed in that leg, along with many superficial ones. Leaving me basically with not a good leg to stand on.

I have since had a knee replacement in the right leg and yes you guessed it, a blood clot after that surgery. My doctor had said while he believes the protein S deficiency played a role in the clots in the right leg, he also believes trauma played a key factor.

I was only able to have my one child because of the blood clotting. Back then they believed that pregnancy was too dangerous for me, now medicine has improved so much they can work around all that.

I am a candidate for the greenfield filter. The doctor just wants me to get a little older. The doctors said there are not too many studies as to how long the filter will last and what not. My doctor is also worried that while the filter will be good for me and give me a piece of mind, he is worried that the filter may cause a clot in that area. As anyone with these illnesses know - any kind of surgery even if it is minor is major to a lifelong coumadin patient. Even going to the dentist seems like it has to be a major ordeal, especially now with the new knee.

I have been reading your forum along with another site on the protein S deficiency. I have found that it seems everyone kinda goes through the same things no matter what the diagnoses.

I have learned a lot about it all over the years and have also learned a lot through both forums. What puzzled me most was seeing on your forum people being worried about long term coumadin usage. My doctor has said there really are no long term affects of the coumadin itself, but with the vein damage done by the clots.

In my case they worry more about the damage because of how untheraputic my INR is and worries of when it gets too thin or too thick. Somedays I feel like I have to be the charmin baby and wrap my self in toilet paper in case I bleed or to protect myself from getting hurt. I can tell that the medical world is trying to find answers for all of us who are going through clotting problems.

I believe back 20 years ago or more a clot was just a clot. Now I believe more testing is being done to actually find out why people are clotting. Like I stated earlier, I can already see the changes in the medical community in various areas. One major one is the pregnancy issue. When I got pregnant for the second time 7 months after my first clot, I was told I should terminate the pregnanacy because of my blood clotting. I refused and even though I fought for it, I lost the baby 3 months later.

I am not very religous but I believe things happen for a reason. So at the tender age of 22 it was suggested and I agreed to have my tubes tied. I have my son and am greatful for that, but I wish the medical community had known more back then. Years later I had to have a partial hysterectomy because of the bleeding issues with my period.

I pretty much have seen in both forums issues that I have dealt with and are dealing with. I have also learned new things and have had new questions for my doctors.

I thought by telling you my history, it will help others. I am fighting to get these blood clotting disoders noticed as legitimate diseases thru the disiabilities act.

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