"This illness is to fatigue,
what a match is to a nuclear bomb.
It's an absurd mischaracterization!"
~Laura Hillenbrand

November 17, 2007

Homecoming

"Autumn Wreath"
I drew this during my med trials at Vanderbilt


I'm home from Vanderbilt!! Whooooo Hoooo!

It's wonderful to be home again. After 12 days away from home, I found that all I wanted to do is get back to my daily life. Amazing how a little time away can make me appreciate what I have!


I had really hoped to write updates while I was there in Tennessee, but that turned out to just be too much for me. I have so much to share about my trip. I'll be writing several posts in the next couple days so, if you want to hear all about the whole trip, be sure to check back or subscribe so my blog is sent to your email address.

Tomorrow, I will begin posting some detailed descriptions of my days at Vanderbilt - for those who are interested in what it was like and what they did.


But for now, let me just tell you some of the things I feel I have come away with.


~Sleep Study: I really needed to have a sleep study done. Having had it at Vanderbilt gives me two great advantages (besides it being free). First, my results will advance the understanding of sleep disturbances in dysautonomia patients. Second, my personal results will be seen and evaluated by the Autonomic specialists. I will probably still need to see a Sleep Specialist here at home, but I feel good about having the issues evaluated by those who understand the Autonomic issues.


~Medications: There are no miracle pills, but they did do an extensive evaluation of my current medications. And they have suggested a few adjustments that may help in the management of my symptoms.


~Full cardio evaluation: Doctors who specialize in POTS seem to fall into one of two specialties: cardiology or neurology. The specialists at Vanderbilt are cardiologists. I had intensive evaluation of my cardio health - including a 24 hour heart rate and blood pressure monitor, and an exercise test. During the exercise test, I laid down on a recumbent bicycle. I had an EKG monitor as well as monitors evaluating my oxygen use and the health of my heart. I petaled the bicycle as long as I could (while they increased the resistance). When I was exhausted, I then sprinted as hard as I could. (I imagined I was racing my Dad home during those teenage years when we took long bike rides together. BTW - I won!) After this test, they gave me a full evaluation of my cardio health and advice on how to continue to keep in shape while handling my excessively high heart rate. This has given me greater confidence in how to exercise and guidelines to keep myself safe.


~Helping advance the understanding of this illness: This may not sound that important, unless you have this illness. There is just such limited understanding of it, and very few doctors working with it. It's not that common so it doesn't have a high profile and is not highly funded. So to be a part of the research that Vanderbilt is doing is very important to me.


A great big THANK YOU to all of you that prayed for me and to all of you that sent me mail. I really enjoyed mail call each day. One day, the Doctor brought my mail by and joked about the patients getting more mail than he does!


Goodnight for now. I'm going to sleep well in my own bed tonight!


Love




4 comments:

  1. Welcome home, Melanie!! :)

    So glad to hear that so many good things have come out of your time at Vanderbilt! I look forward to hearing some of the details when you are able.

    Hugs to you!!
    Patti

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  2. Oh I'm so happy to hear you are home! Thanks for posting a bit about what went on. I've been thinking about you and praying for you!

    ((hugs)) :)
    Kristen

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  3. I'm so glad that you are home! I know it's selfish, but I didn't like having you so far away :) I am looking forward to hearing more about your visit and what came out of it for you individually and in terms of the studies and learning more about POTS.

    here's a great big hug for you!
    Lisa

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  4. Welcome home! What wonderful news so far. Looking forward to reading about all of it.

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