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!

Things I am Learning

I sit here googling a storm looking for what kinds of cold medications I can take. I was hit by storm today with a mega sore throat and sinus headache. Little did I know that the OTC medications I usually take interact with Coumadin. Boo hoo. No meds for me.

I went in to the INR Clinic today. My INR was at 1.9. A little bit of a drop since the last time I went in. The nurse said it was okay, considering I missed a day of the medication. My dosages were not changed and I will be going back in two weeks. What a relief! Having to go in daily and then weekly was getting annoying and expensive!

I learned that I did not lose any weight during this whole ordeal. It certainly feels like it! I guess my weight is just "shifting".

I have been asking various nurses about pregnancy and if it is a possibility. They answers I have been getting have been - plan for it. During the pregnancy I wouldn't be taking Coumadin. The Coumadin in my system would abort the baby. In planning for a pregnancy, I could prepare to take blood thinner shots - more than likely Lovenox - twice a day. I had taken these shots and given them to myself during my hospital stay and several days after. I couldn't imagine doing it for nine+ months! I had given them to myself in the stomach. During a pregnancy the shots would need to be given in other places like the arms.

As with all of my questions, I will be confirming answers with the Hematologist I will be seeing next week. I will also be asking her if I can continue with my karate performances. I spoke with one of my black belt instructors of couple weeks ago and he offered that I still participate but take it easy and go at a more reasonable/comfortable pace. That would be awesome, but at the same time what is karate without force?!?