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...

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.

5 Stitches

Over 2 years since my pulmonary embolism and without a hitch. Today I had my first unrelated medical procedure. I chose, at my own will, to have a benign mole removed from my back. I was born with the mole and have carried it with me for almost 28 years now.

The mole had always been a source of anxiety, mostly image related anxiety but also the fear of the unknown in skin cancerland. Last summer alone I had three people address their concerns over the spot and how I should get it taken care of. That was the first time anyone had said anything to me since I was in high school when my childhood doctor would address it every year. I figured it was time to get going on removing it.

Coumadin doesn't exactly make any kind of a procedure an easy task. You can't just make an appointment and show up to get things done. There is a long, at times tedious, process involved to get various different doctors talking about INR level requirements and when to stop/restart Coumadin.

At any rate, I figured this was a good opportunity for me to learn about the various hoops of doctors, blood thinners and medical procedures all in one shot. My best advice is to make sure you get concrete answers from the doctors and get the planning done well in advance. I almost cut myself too short between my last INR Nurse Clinic visit and the date of the procedure. I had already talked to the dermatologist and asked him where my INR should be. His response of "low" was not good enough for the INR Nurses or my Internal Medicine Dr. to be able to gauge what my INR level should be at. I had to orchestrate talks between my nurses, regular doctor and the dermatologist and then talk with my doctor's nurse to get the final plans. A little too much effort if you ask me.

Thankfully, I was allowed to go off the Coumadin completely and not have to supplement with lower dose blood thinners like Heparin. As essential as Heparin is for me to live, I am just not up to the injections and bruising that comes with it. As strange as it may sound, I have been feeling pretty happy the past few days not having the ball and chain of Coumadin wrapped around my ankle.

The procedure went well and was relatively fast. I was extremely nervous and cried the whole time. It wasn't painful physically, just painful to let go of a part of me. I ended up with 5 stitches and a giant bandage. The dermatologist said that the scar will be approximately 1.5 inches long. He had to make a football shape cut to get all of the area that the mole covered. He let me see the incision area before he cut into me and gave me a second chance to back out. It was very tempting to say "nevermind, maybe next time" but I let my logical mind win over that debate. I do hope that the scar will be more attractive looking than the mole! Not that scars are sexy, but at least I won't bet the "eww" reaction from people, again I hope!

I will restart my Coumadin tonight and get my INR checked in a week. I am pretty content with the way things worked out, albeit there was a good amount of stress and anxiety going into this. I made it a point to get up and walk around every hour for fear of another clot. I am grateful that my regular intake of Coumadin erases all of those clotting fears.

Today, my INR was 1.2. Back to the blood thinners!

Small World

I just found out last week that one of my dearest childhood friends had a blood clot in her stomach. She spent a week in the hospital recovering from the clot and fasting to help her stomach heal. She tested positive for Antiphospholipid Syndrome (APS) - which is likely to be a genetic condition. APS is a disorder of the immune system and leads to excessive clotting and complications during pregnancy. She was not pregnant during her diagnosis nor was she a smoker. Interestingly, she had been using the NuvaRing for four months prior to her clot.

It breaks my heart to see a very close friend get this sick, but reassuring in the same breath because she and I will be support for each other in this lifelong endeavor.

1 Year Anniversary and Then Some

Long time no post. I reiterate, that the old saying "no news is good news", is absolutely true in this case. My INR, for the past two clinic visits, has been lower. It has been 2.0 both visits, which is the lowest it can be safely. The one nurse I saw said it had to do with the weather, which might be a bunch of bullwhooey. I can maybe, sort of, admit to eating a little extra of the green vegetables over the Christmas holiday. I couldn't help myself! It is so hard to say not to such yummy foods! I don't know if asparagus is as bad for me as broccoli, but I scarfed down some delicious ham and cheese asparagus wraps that Dustin's parents made. Yum yum. And then some Tequilaberry salad...I am drooling thinking of it. So maybe that is why my INR was low. I pray that the weather will warm up so I can get my blood back to normal! I have also gone back to my regular/normal eating habits in the past two months!

I started a new, non-health blog, and posted a list of accomplishments in 2007. Despite having to reconsider life and the value of it, I have put life in a new perspective and really enjoy the most of it when I can. I accomplished a heck of a lot this past year and will continue to have fun!