Time to Take Control

The end of 2009 is nearing, marking my third full year of being on blood thinners. I can gleefully admit that my life hasn't been negatively impacted by being on Coumadin. It has become my way of life and is a permanent fixture, ingrained into my lifestyle. On the complete opposite end of the spectrum, I have been very passive. I can give a multitude of reasons for my passivity -- college, wedding planning, marriage, work, etc. -- and never really put my health first in any of those situations. I try to be mindful of my body and respond to the quirks and hurts, but I still let the rest of my environment dictate how proactive I am about my health.

I have recently been speaking up about my thoughts and concerns about my lack of enthusiasm to get going on finding answers, deeper answers. Thank you to my dear friends, I am gaining momentum and courage to take a stand and move forward on empowering myself about myself. Even if this empowerment means finding out what I already know, again, from someone else.

Today I went into my primary clinic and met with my new Internal Medicine doctor for a managed care visit. I have been doctor-less for six months now and didn't try to get a new doctor at any point. I thought I might switch clinics during annual benefit enrollment in the late fall at work. I again used an excuse to not do anything about my concerns. The doctor I had from day 8 to 6 months ago was assigned to me the day I was released from the hospital. I never once tried to get a different doctor. She was nice, courteous and seemed to suit my needs. HA! Needs, I am still figuring out what those are!

The new doctor reviewed my health history today. He could not find on my medical records why I was on Coumadin. The information on Factor II and Lupus Anti-coagulant was buried very deep and nowhere in there did he see a concrete diagnosis that I was to take blood thinners permanently. He did see a letter from the hematologist I saw back in January of 2007 stating that I will be a chronic user of blood thinners. "Chronic" is an implied term. I want explicit instructions, dammit! After almost three years, I want someone to point blank tell me "yes" or "no." The new doctor told me I had every right to want a 2nd opinion and he said "being on Coumadin in your 20s is no good, it sucks, I understand." Yes! Validation! Just what I wanted to hear.

Month in and month out, I go in and get poked at the clinic and I am always the youngest by about 40 years in the clinic. I felt very out of place at the clinic the first year but then I just turned into a chameleon and mentally made myself one of them. One of the old people with serious health issues taking Coumadin.

Moving forward, I requested that I be given a referral to a Fairview University Hematology clinic. Mr. Doctor didn't even bat an eye. He wrote up the referral and told me that I would be getting a call in two days to get the ball rolling to schedule an appointment. I am SO excited to go to a clinic that knows their stuff, that has doctors that live and breath issues like I have been living. To top that fat cat off, I can finally get a referral for a doctor that specializes in women's health and blood clotting disorders. Or at least, I can hope that will happen.

In other, related news -- my INR was 4.5 today. Yowza. That is the highest it has ever been. I have to go back to the clinic tomorrow for a re-test. I am pseudo-nervous about my INR being so high because I have no idea why it would be. I ate asparagus for lunch and well, that is about it. Unless Pepsi-Co has been pumping Vitamin K into Diet Mt. Dew, I can't think of any other reason why it is so high. I decided to sit home and not go for a run tonight. I didn't want to risk falling and bleeding to death mid-stride. A bit of an exaggeration, but not completely unlikely. Instead I came home to my fun-loving 5 year old neighbor telling me how much he likes Kindegarten and how good he is being to the Joe Mauer-on-a-stick I gave him. "Joe is the greatest" he said. Really, what else could a girl ask for to brighten her day?

Update: I went back in the next morning and my INR was down to 2.6. The nurses didn't bat an eye and dropped my dosage on one day a week from 10 mg to 7.5 mg of Warfarin. That is the first time my dosage has been changed in at least two years. I go back in for monitoring in two weeks to see how the adjustments fare.

Ah Ha! Moments to Share

Two exciting discoveries revealed in the past three months that I have been slow in sharing, or rather too busy to sit myself down and write about them:

1. Since leaving my old job in August of this year, my INR level has been the highest ever. That is a good thing (in the range of 2.5-3.0). It took me up to about two weeks ago to really have an Ah ha! moment to realize that it is so very likely that high levels of stress can contribute to health in the most complicated ways. All of my doctors and nurses have told me, when I ask, that stress could play a role, but not a significant enough role to make any impact on my health. Ha! I know that is not the case now. Not only has this been pointed out on numerous occasions by my dear psychotherapist, but it has been in writing right before my very own eyes for the last three months. I am going in for my next INR appointment on Monday next week, so I will see if this theory still holds true!
2. Dad went in to a doctor to have genetic tests to find out if he has the Factor II gene mutation. I guess he had a rather difficult time explaining to Drs. down south there what this factor is and what it causes. I even had to go as far as sending copies of my genetic test results to this doctor. Honestly, I was really nervous to hear back what the results were. Mom had already tested negative and the answer was either Dad had the gene mutation or I had made it myself during gestation. Dad called me on a Friday evening to bear the news. His test results came back positive for the Factor II gene mutation. It was an awkward moment shared on the phone, but a very important one for me. I don't think I have completely processed this in my mind, but feel instinctively at peace knowing the genetic source.

Those are the Ah Ha! moments I have had as of late. Hopefully there will be more to come!