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Monday, January 26, 2009

Should It Stay or Should It Go

(Ben writing) Yesterday was Kristen's follow-up visit with her vascular surgeon. Although he is kind of goofy, he has become one of our favorite doctors. I get frustrated with most doctors because they always seem to be in a rush and I rarely feel that all of my questions have been answered. Not him. He will come in, shake your hand, pull up a chair, and answer any question you ask. Really, he just loves his profession and he loves talking about it. Anyway, the first order of business was to rescan Kristen's leg and stomach to see if the clots had dissolved, and good news....all clear! Next comes the question of the hour..."Should the vena cava filter be removed?"

As many of you know, Kristen had a small, metal filter (that is a picture of it on the right) placed in her vena cava (the large vein that takes blood back to the lungs and heart). Its initial purpose was to protect her lungs and heart during the two surgeries that were required to removed all of the clotting in her leg and stomach. While most filters are permanent, this one has the ability to removed within the first 3-4 months. Any longer and it stays because the vein will grow into it (I imagine a tree growing around old barbed wire). So this is our decision:

1. Leave the filter in - The filter will keep protecting Kristen's lungs and heart in case another clot forms. Although blood thinners should help prevent clots from forming, there is still a chance that this could happen again. The disadvantage is that no one knows if the filter will last 20, 30, or 50 years. There have been cases where the filter breaks and ends up somewhere else in the body. Also, this would basically eliminate the possibility of her every carrying a baby (the filter cannot withstand the pressure of a baby and it would likely bust the vein).

2. Take the filter out - Basically the reverse of everything above.

Just typing this makes me sick to my stomach. We asked the Dr. for his opinion and initially, he said that he would leave it in, but then as we got to talking more about it (KJ crying), he started second guessing himself, talking more about how long the filter would have to stay in and the potential for it breaking at some point. How do you go about making a decision like this? At some point the doctor commented that "There is no wrong decision, here" but in reality, one decision will ultimately be better than the other, and could mean the difference in life or.....Only God knows which decision is best, and I pray every day that he will show us which path to follow.

Next step, Kristen has to do an Echocardiogram. This will test for one of the worst side effects of clots in the lungs, pulmonary hypertension. This website explains it well http://www.mayoclinic.com/health/pulmonary-hypertension/DS00430 but it is basically high blood pressure in the lungs caused by damage to the smaller vessels. If she does have pulmonary hypertension, then we have no choice but to leave the filter in. Otherwise, we have to make a decision by early March.

All of this and Kristen is trying to finish school. So much pressure!!

Thursday, January 22, 2009

Gotta Love Genetics

I went to the Dr. on Monday. I seem to do this almost weekly as I shuffle between my Internal Medicine Doctor, Vascular Surgeon, Hematologist, and Gynecologist. I had been anxiously awaiting Monday's visit to the Hematologist because I was supposed to find out what kind of blood disorder, if any, I had. More tests were done besides the ones discussed, but those results aren't back yet.

I found out I have a few different clotting disorders. Most of this is pretty confusing, even after spending many hours researching. For those interested, I will explain what I know about them presently.

1) I was diagnosed with something called Factor V Leiden (FVL), that's the roman numeral 5, not "v". There is a really great website, http://www.fvleiden.org/ , that has answered a lot of my questions. FVL is a genetic condition which increase the tendency of the blood to clot, leading to sometimes serious and/or life-threatening complications depending on the location of the clot (which is what happened to me). Basically, I was at a 7 fold risk to clot abnormally than the average person. I was also taking birth control (maybe that's too personal, oh well), which I have learned increased my risk to about 35 times the normal risk for clotting. I am off that medication and am now taking a blood thinning medication daily called Coumadin to help keep my blood from clotting. While my situation was bad, it could have been much worse. Many women who have inherited FVL don't find out until they get pregnant and have multiple miscarriages or severe complications ( I guess it is good that I am still in college not trying to get pregnant or my story might have gone differently). As the website says, "persons with thrombophilia (FVL) wishing to have children should be aware of possible complications including stillbirth, preeclampsia, eclampsia." In some cases pregnancy is ultimately fatal to the woman. While this all is very scary, many women with FVL do have children. It is much more risky and they have to take shots of blood thinners daily to help prevent some of the serious complications. It makes me emotional to think about so I'll stop. ok, next result.

2) Another disorder that my DNA showed (I didn't just get my green eyes from my parents) was a mutation of something called the MTHFR ( I had a single copy of something called C677T). This enzyme is responsible for creating the circulating form of folate in the blood. Folate helps regulate homocysteine (which is damaging to the vessels). If its not present than there is too much homocysteine in the blood and this is associated with an increased risk of cerebrovascular disease, coronary artery disease, heart attacks, and blood clots. Sometimes in pregnancy, for those with this mutation (I hate that word), there is an increased risk for neural tube defects ( birth defects of the brain and spinal cord) due to low levels of folate. This is one of the reasons all pregnant women and those of childbearing age should take plenty of folic acid. I only had a single copy and therefore this genetic issue is less concerning, but I do take my folic acid daily.

3)I was positive for Lupus Anticoagulant (LA). This is something that is acquired, not genetic like the first 2 results, and it could have been a false positive from the heparin therapy I was on in the hospital when I got tested( I am hoping). However, at this time, my hematologist says I have this too. My first question was, is that like the connective tissue disease Lupus? He said not really. It is called that because many women with the disease Lupus are LA positive. According to http://peir.path.uab.edu/coag/article_3.shtml, LA is an acquired non-specific inhibitor that is detected in 1-2% of individuals. Chronic lupus anticoagulant is associated with a 30% risk of venous thromboembolic disease or arterial thrombosis, including stroke and myocardial infarction. LA is also associated with chronic spontaneous abortion. The hematologist said there is a chance it could go away (transient LA) as opposed to chronic LA. I am praying for it to go away.

I may have lost many readers already, but it is good for me to talk about. It is something I am fascinated with because I must learn about it and deal with daily to stay healthy. I hope the rest of the results are good.

Monday Jan. 26 I go to see my vascular surgeon. He is going to scan my legs again with an ultrasound to see if the clotting has gone away or not. The results may help him decide if they want to take me back to surgery and remove the filter in my inferior vena cava that is currently preventing another pulmonary embolus. I'll know more Monday.

Flashback: December 2008

I am going to be using this blog to keep friends informed about the happenings in our lives-good and bad. I had a life changing medical emergency happen last month. It was serious and there were days when my family was unsure that I would survive. I don't see how anyone can be the same after going through something like that. I certainly am a changed woman. For those who don't know what happened to me last month I will explain. For my friends and family who were there just skip to the newest blog entry. :)

Since Oct '08 I had been having tingling and discomfort in my entire left leg. I went to 2 different Dr's and they said it was related to an old back injury which I thought was possible because I had herniated 2 lumbar discs in 2005.

Then I got a respiratory infection in mid Nov '08 that was pretty bad. I had severe chest pain and even coughed up some blood (sorry to the squeamish readers).

I started having more leg pain on Thanksgiving and it got so bad I was unable to walk. My 25th birthday was Nov. 28 and I felt so badly I didn't even feel like eating my birthday dinner. I just wanted to sleep. The pain in my left leg got so bad I decided I needed to see a Dr (that same morning I got on an exercise bike to see if I could "work the soreness out," which was so dumb looking back).
I went to the Dr and found out through ultrasound of my leg veins that I had a blood clot almost the entire length of my left leg starting below my calf and they weren't sure how high it went into my abdomen (we found out later it went almost all the way to my kidneys).

They sent me to the emergency department of a local hospital then to the intensive care unit. I had a CT scan done of my lungs and found two pulmonary emboli. The one in my left lung was small, but the one on the right side was extensive, going into the upper, middle, and lower lobes. They were causing me to have severe pain in my chest when coughing, sneezing, and with pressure. It became very serious at that point, as many people die from a pulmonary embolus (PE). In addition, the pain in my left leg was almost unbearable and they were giving me very strong pain medicine. I was just miserable and scared.

I was transferred to a larger hospital because I wanted a vascular surgeon to perform whatever needed to be done. I was sent by helicopter because I was deemed too physically unstable to transfer any other way. I get severe motion sickness so I took a little baggie with me just in case I got sick. I was wrapped up so tightly on a stretcher and buckled down across my arms, hips, and legs that I couldn't move. I spent the first 5 minutes of the helicopter ride feeling around for my vomit bag and the other 15 actually throwing up all over the helicopter (not one of my finer moments).

When I arrived on the helipad they rushed me into surgery and I met my vascular surgeon for the first time. He explained that he was going to go in my jugular vein and first place a filter in my inferior vena cava to catch any more clots that might break off and go to my lungs and would leave a central IV line in that hole. Next, he would insert a catheter into my popliteal vein behind my knee and try to clean all the clot out with blood thinners and clot-busting medicines. Then "vacuum" all the clotting out.

The first surgery on 12-2-08 (my brother's birthday), the Dr. only could only clean half of the clot out because it was so bad. The next day (my dad's birthday), he took me back to surgery and got 98% of it and was satisfied. I spent 4 days in ICU and 4 days in a room on a Medical-Surgical floor. I was so happy to go home, especially because Christmas was right around the corner.

When I got home my good friends Amber, Jennifer, and Courtney had a suprise waiting. They put up all of our Christmas decorations!!! They are the best. I also was so humbled by the outpouring of love and support I felt from friends, family, and people I didn't know who were praying for me. The prayers are what brought me through that time and I am so thankful to everyone for that support.

Believe it or not, that was the short version. There is so much I am still dealing with daily. The physical and emotional toll this all took on me is sometimes hard to deal with but my faith is being stregthened in the process.

Ok, now I can forge ahead in my blog to present day.

Monday, January 19, 2009

Great Traditions

This weekend was my annual girls' weekend trip to Nashville with Courtney, Emily, and Amber (we missed you Shawn) and we had a GREAT time. Emily is the best host a friend could ask for each visit. This year we ate some great food (Jim-n-Nick's, Monell's, etc.), went shopping, watched movies, drank hot chocolate, ate cookies, and enjoyed my first hockey game!!! Spending time with my friends away from it all is always wonderful therapy for me. I get so caught up with my own to do list and life events and sometimes forget to "check-in" with the girls I have known and loved for as long as I can remember. My goal this year (I avoid the term "resolution" so close to the beginning of the year because those seem to break too easily) is to spend more time with friends. It seems challenging with all of the busy schedules, but I think we can do it.
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Thursday, January 15, 2009

Hallie hiding

My sweet puppy, Hallie.

First Time Blogger

I am new to the blogging world. I decided to start one as I spent the day dodging what really needs to be done, my homework. I am trying to graduate from my MSN program in May 09, and am feeling the stress and pressure that comes with finishing a Master's program and realizing I will need to find a job. When I get stressed, I start googling things irrelevant to my to do list. I explored twitter, picnik, picasa, searched facebook, and landed here. It will be fun to chronicle life events and be able to look back on them, because time flies by so fast.