What the Specialists Say: Part 1 - Getting the Information

I cannot quite put an exact finger on why I decided to go see the Doctors that Know Everything and Anything there is to know about blood clotting, but I did it. Finally. I saw the ever so fabulous specialists at Fairview University Center for Bleeding and Clotting. It was the best co-pay I have ever paid and literally the best thing I have done for myself. I had over 60 minutes of one-on-one time with the specialists just talking and answering all of the questions that have been floating around in my head unanswered or answered in such a way that I couldn't believe anything I was told. Every. single. question. answered. Yes!

My clinic visit was late last week. I was able to get in for an appointment right away and at a time that worked perfect for my work schedule. I was somewhat intimidated to be going down to the U of MN for a doctor's visit, considering it was my first time and I was going alone. I figured, if the grandparents can do it, I can do it! Once I got down to the campus it was a cakewalk getting around. I am much more familiar with navigating around Dinkytown than anywhere else in Minneapolis it seems.

I have been trying to figure out how to get what I learned out here onto the blog and decided to break it up into three parts --

1. Getting the Information
2. Babymaking and Procreation
3. What Now

I am still working on part 3, but hope to have that settled in my mind and heart within the next two weeks.

Most disappointing, my primary care clinic did not get my medical records to the U in time for my appointment. So the specialists had to go through my records on the phone with my clinic and pick out what they thought were the most important pieces. They needed my help to fill in the blanks. I was happy to oblige, but my memory is faded in some areas because I wasn't as informed as I should have been. I did my best with sharing the information and we concluded that there was no conclusion. Fine by me, I have been going by that for almost three years now.

According to the genetic tests, which I have outlined here on the blog already, I have tested positive for Factor II - Prothombin Gene Mutation and tested inconclusive for Lupus Anticoagulant. I do not ever recall being retested for Lupus Anticoagulant but clearly remember asking my former primary care doc if I could get a retest and her response was along the lines of "what for? you already tested positive for one factor. you are on blood thinners for life as it is, no need to retest." With that semi-put down, I never pursued the question again. The specialists last week informed me that I really should have had a retest on the Lupus Anticoagulant 3-6 months after my initial diagnosis, no questions asked. The specialists offered a retest and promptly ordered up a lab test immediately following my appointment. I am still waiting the results, but we will get back to that in Part 3.

I walked into the clinic with 2 big questions: Can I go off blood thinners, ever? and Can I have children? Granted I am a couple years away from starting a family, I needed to get my head wrapped around it all so I could be the most informed mother-to-be whether biological or adopted children.

The specialists (PA and RN) did an excellent job explaining to me in a drawing how every single person is suspectible to a blood clot and the older you get the greater your chances are for clotting. Throw in a genetic clotting factor and your curve goes up at a younger age, giving you more clotting risks at a younger age. Throw in a provoker such as estrogen and the curve goes up even more, even younger yet. Because I have Factor II, my personal chances of clotting next to a person with no risk for clotting goes up by 5 times. I was also on estrogen in the form of Nuvaring, that increased my risk by 7 times. Put the two risk factors together, they do not add, they multiply. My risk of having a blood clot was 35 times greater than a person with none of the above!!

I reflect back on my decision to go on the Nuvaring when I was 25. It wasn't a difficult decision to do it -- low maintenance and seemingly harmless. Had I have known the risks involved, for me at the age of 25, I would not have taken the jump. I am not sure if I would have stopped taking estrogen altogether, but would have given second thought to trying a new form of birth control. Sticking with the usual Ortho Tri-Cyclen would have been a better bet for me. The specialists said that any risk of clotting from estrogen-based contraceptives will happen within the first 3-4 months of using the contraceptive. My usage of Nuvaring was off and on, completely inconsistent. I believe I had been using it for about 5 months non-stop before I had my PE, but can't recall and Dustin couldn't recall either. Based on that, the PA couldn't say definitively that the Nuvaring was the reason why I had my clot. He said we could argue back and forth until we were both blue in the face but would never come up with a conclusion. I gave him that much, even though I feel that is why I had my PE and didn't argue the point.

The PA explained to me that back in 2006, blood clot diagnoses were done two ways: If you had a clot, no matter what you were put on blood thinners for 6 months. If you tested negative for a genetic factor, you were taken off the blood thinners. If you tested positive for a genetic factor, you were kept on the blood thinners for the rest of your life. Now, times have changed. Absolutely amazing that in three, short years medicine can advance so much to change the way doctors perform clotting treatment. Today, blood clots are treated based on whether the clot is provoked or unprovoked. A provoked clot is one that is brought on by use of estrogen-based contraceptives, and/or genetic factor, and/or smoking, and/or injury, etc. An unprovoked clot is one that has no reason at all for forming, no genetic factor or injury or contraceptives, etc. If you have a provoked clot, you will be on blood thinners for 6 months and then after that assessed for future treatment. If you have an unprovoked clot, you are on blood thinners for life.

We laid down the risk factors in my life and determined that the clot was most likely a provoked blood clot. Hypothetically speaking, if I tested positive for Lupus Anticoagulant than I had an even greater risk for clotting. Because my results in 2006 were inconclusive (i.e. weak) the chances are very slim that I will test a strong positive now. We didn't even talk about what having a positive test result for Lupus Anticoagulant is because of the slim chances of having it. If the test results come back negative, I have the option of going off blood thinners indefinitely. Always, always knowing that I am at an incredibly high risk for clotting again whatever decision I make.

Up next...what all this means for some babymaking and procreation...