No Needle Fears

Mom has been asking me to do an update, so here I am updating! I finally got in to see the hematologist on January 8th. I was able to educate myself through various nurses, doctors and friends who have been on blood thinners before. By the time I got in to the appointment with the hematologist I was pretty aware of my situation and outlook.

Surprisingly, I found out that the second genetic test I tested positive on (the Factor II mutation) is permanent and will never change. I had been under the impression since leaving the hospital that I could retest for all of these genetic tests in six months to see if I had tested false-positive. According to what the Doc said on the 8th, the Lupus anticoagulant comes and goes and has a higher potential for false-positive tests based on the state your body is in when the blood is drawn for the test. The factor II mutation is what it is, a genetic mutation that is unchanging. The most likely scenario is that I inherited the gene from one of my parents. There is also a possibility that I developed the mutation as a baby shortly after I was born. I am not sure which of the two it is. My mom tested negative for both tests, so it is either coming from my dad's side or I developed it. My little sister has a 50% chance of having the mutation as well. She will test in the future, but not right now. I have advised her to take an aspirin every day to reduce her chances of clotting. I will be on Coumadin for the rest of my life. The rate modern technology is moving along, who knows that might change!

The Doc also told me that I may also be at risk for premature heart attacks and for developing Lupus. After my appointment I went to the lab to have more blood drawn for genetic tests. I don't think, in my heart, that I will test positive for Lupus. There is no family history of autoimmune diseases that I am aware of. The tests were sent out nearly two weeks ago and I haven't heard back yet. I would normally assume that no news is good news, but that is not always the case!

I asked more questions about having babies while using Coumadin. The short answer was PLAN for it!! According to the hematologist, Coumadin causes birth defects and increases chances for miscarriage. She also confirmed that I would have to stop taking Coumadin and give myself Lovenox shots twice a day for the entire duration of the pregnancy. I was pretty saddened to hear that. I also had ridiculous thoughts of - why didn't I get knocked up young like most everyone else? But my rational mind kicked in and said "you never wanted kids then." The half life of Coumadin is three days so I at least would be able to get professional advice right away if there was ever a chance that I may be pregnant.

After this appointment with the hematologist I was pretty sad. But, again, I told myself "I am alive." That in and of itself is encouraging enough for me to move forward. I am still having a hard time digesting the fact that my whole situation was closer to death than I ever imagined. I still have pain at night when I am sleeping, but feel like it is a better pain than the original ones! I did ask a couple doctors about the pain and was told to only be concerned if it gets worse. That still concerns me. The pain is consistent, but never increases. Shouldn't that be a worry? Guess not.

The night of the hematologist appointment I worked up the courage to tell Dustin. My deepest fears were boiling inside and I had to tell him what the results were. He was very understanding and encouraged me more than once that nothing would change between us. I feel so incredibly lucky to have him in my life. He truly has been the most supportive a person can be in a situation like this.

I went in to the INR clinic this week and tested super low at 1.5. The nurse didn't seem concerned, but I certainly was! I have learned enough along the way to know that 1.5 is dangerous. 1.7 is the lowest you can be without being at risk to clot. She attributed the low test result to me getting better and metabolism working more effectively. My Coumadin dosage was kicked up to 5mg more each week. Hopefully the higher dosage will bring my INR back up to the 2.0 to 3.0 level. I go back in next week to get tested again. I can't believe all the blood that has been taken! I would say that I have had my blood drawn at least 25 times in the last six weeks! That is my new life. I am glad I don't have any fears of needles. This week there was a woman gagging in the lab room next to me. I am so grateful I don't have issues like that when I see needles or my blood!