Wednesday, January 20, 2010

My Vanderbilt Experience

First, I would like to start with how much Nashville impressed me. I loved it there! Everyone was very friendly and the city, itself, was beautiful. There are so many active people there! I couldn't believe all the walkers and joggers. We saw the Parthenon whilst there. It was amazing! I'm sort of a geek that way, I guess. I loved the history and culture, never mind the 40 foot statue of the Greek Goddess in gilded gold :)

Ok, on to my hospital experience... Vanderbilt, as a hospital, was pretty run down looking. It was definitely no Cleveland Clinic. The biggest difference between the two was that at CC, they have red coats. Red coats are literally customer service/guides in red coats who stand around in various parts of the hospital. You can walk up to any one of them and ask for help and they will help you; whether it be guiding you to your next appointment (very easy to get lost in the giant hospitals) or getting you a wheelchair, etc. These folks would have been helpful during our visit at Vanderbilt. That was probably the biggest irritation we had.

My first appointment involved a blood volume test. This test was fascinating to me. They developed the test, from what I can understand, specifically for people with POTS. Anyway, they take a vile of blood as a control then they inject you with this radio active stuff. Then, at 6 min. intervals, they draw out a vile of blood. I can't even tell you how much they take all together, but it was a lot! Oh, I forgot the best part, you have to drink this awful salty crap so that the radioactive stuff doesn't collect in your thyroid and kill it. Mine doesn't really work all that well anyway (autoimmune disease killed it) but just to be safe and protect whatever is functioning, I had to drink it twice a day for three days. Yuck! Nothing covered up that taste :( The nurse was super cool though. She let us stay in that room and sleep until our next appointment. We had drove all night and slept an hour or so in the parking garage. We were tired!

My second appointment of the day was a treadmill test. I never realized how hard those were! They make you stick a tube in your mouth to measure oxygen and then they plug your nose. The treadmill incline and they speed it up periodically. Mind you, I hadn't taken my Pindolol (beta blocker) in three days so my heart was racing! That tuckered me out. This was my last test for the first day. Afterwords, we went to our hotel room. We stayed at the Millennium Maxwell which was really comfortable and fairly cheap. My only complaint was that the bath tub flooded when you took a shower. Later that night we ate Jimmy Johns (YUMMY) and saw the Parthenon (a must see if you have never been). The Parthenon is the only exact replica of the original Greek Parthenon. Beautiful.

The next day, I had a Q-Sart (sp??) test. This was a very uncomfortable test. They sand paper a spot on your arm and two places on your leg and one on your foot. Then they wrap what looks to be a weird Velcro watch around those spots and then they circulate this horrible liquid underneath the weird looking watch head. Let me tell you what, it hurts!! It burns and stings so bad that I thought I would go mad! It is like a thousand bees stinging you on top of the worst case of poison ivy you've ever had! It is meant to induce and measure your body's ability to sweat. The results never did come in on this test so I will have to update later.

The final test before doc was the ANF (Autonomic Nervous Function) test. It was very simple. They give you an EKG and then they test your blood pressure and heart rate reaction to blowing against resistance. They also take your blood while at rest and after standing up. They make you take deep breathes for so long and monitor your reaction to that as well. Then they make you go from lying down to standing up and measure the difference (same as they do for the tilt table).

Finally, I saw Dr. Raj. Well, actually I saw another doctor first. He sent her in because he was held, up but she was very thorough and I really liked her. She explained that what they found over the past few days is that yes, I have POTS. My cardiologist laughed POTS off and insisted I had Inappropriate Sinus Tachycardia (IST). Doc said there is no way that is the case because at rest my heart rate is normal. Anyway, the biggest telling piece of evidence they received from the tests besides the POTS (which the ANF proved because when I went from lying to standing, my heart rate jumped 30+ beats) is that I have slightly low blood volume and moderately low red blood cells. Low blood volume is causal for some POTS patients. So, now we are working on finding out why I am anemic.

Oh, even cooler is that I volunteered for a genetic study. They took my DNA and will use it for research into the disease. I thought that was just the coolest! I told the doctor that if they ever cloned me to let me know so I can drop of the kids to my clone and go on vacation :)

Well, I will update when something new develops.

God bless!

Monday, January 11, 2010

Vanderbilt Dysautonomia Clinic

Well, tomorrow I am off to Nashville, TN. They have one of the only Dysautonomia clinics in the country. For those of you who do not know what this means, Dysautonomia is the dysfunction of the Autonomic Nervous System (ANS). The ANS controls all the bodily functions that do not require conscious thought, such as heart rate and blood pressure and digestion. This is very common in ACM patients because the cerebeller tonsils crush the brain stem in Chiari.

I have been diagnosed with Inappropriate Sinus Tachycardia (IST), POTS, and slow motility in digestive track. I can't really exercise or take a lot of stimulus. My heart races if I watch an action movie, for cripes sake, and that is on heart pills!! I want to know if there is a medical reason other than Chiari. Perhaps there is a better treatment out there than the 6 different pills I take a day just to function like normal folk. I know a lot of you know what I mean. Chiari crushes the brain stem which is the keeper of all nervous system function. I still have peripheral neuropathy in my foot. Most likely, that will never go away. I would just like to be able to go on a walk without running out of breathe and feeling like my heart is going to beat out of my chest! I saw Avatar a couple of weeks ago. (Great movie, by the way.) I had to take a Xanex to watch it because the action excites my heart and sends it into what idiot doctors said for years was a panic attack. Man I am so glad I am past that stage of diagnosis!! If one more doctor told me that I was just a hysterical woman on her period and that I just needed to calm down while my heart rate was 180 from standing up, I would be typing this from prison -- LOL!

So anyway, I will write about my experience at Vanderbilt when I get back from TN. Wish me luck :)

Oh, and PS, I have had this appointment for over a year! That is how sought after they are and how difficult it is to get in. I have high hopes they will be able to help me. My lips to God's ears.
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