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My Ttt


goldicedance
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Yesterday, I went to the autonomic reflex screening lab at the Mayo in Jacksonville. There I had a sweat test (QVAR), not the one where you can sprinkled with orange powder and put in an incubator.

I also had a tilt table test. At the Mayo they do a different version of the TTT. They do not give any medications to provoke a reaction. They tilt you up while monitoring your vitals. They do not wait for you to faint. I only stood for a few minutes before I got very lightheaded.

On Monday, I see the neurologist to get the results.

My heart rate responds crazy because of the ablations and the pacer. I am paced at 85 bpm. I still have some natural sinus rhythm but my rate can go high and then fall dramatically. Pacing at 85 bpm seems to help though the pacer clinic at Mayo said it could be bad for my heart muscle. I can't win. Feel ok now and damage my heart, or feel terrible and my heart will last longer. Not a great choice...I opt for feeling better now.

Have any of you had the Mayo version of the TTT?

Lois

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Lois,

You will have to let us know how you come out on monday. By chance what rate on the pacer did they think you should be at? I am just interested becasue the pacing at Mayo, in MN paced me at 70. By I somtimes think a high rate might be good. Why do the think 85 is too high?

Have a great weekend! :rolleyes:

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Amy, it was a trial and error process that finally found the "right" heart rate for me. I was started in the 60's and "worked my way up."

Amy--does your cardiologist approve of a picc line and a pacer? I was told by Dr. Grubb to remove my mediport right away because of the possibility of getting sepsis which could prove deadly with a pacer as the infection goes right to the heart via the lines. I had the port for chemo and then for IV infusions. After he told me this, I had the port removed straightaway. He even told me that he refused to have a line put in when he hadchemo because of the risk of infection.

Please be careful with your PICC line given your pacer and the fact that you already had sepsis.

Lois

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Lois,

My cardio order the PICC and fliuds, and then 3 weeks into wanted it removed due to risk of infection. My other doctor took over the orders, as the risk of infection at the time out wayed how sick I was and the improvement they saw.

Now here the part that was not fun, I did get sepsis an I was so sick, the reason I was in the hopsital was I had two blood infections, and to make sure noting happend with the pacer leads, at one time the doctor talked about possablity of remove of the pacer due to the infection, later that was dropped as I was able to fight the infection with the abxs.

Now I get weekly blood test to test for infection, and make sure nothing is getting out og line, plus now I check my temp. twice a day so is anything seem like I am getting sick I can get in, and but on a abx.

As for your pacer I wish I had the trail by error, but after mayo changed my rate, my doctor was like Mayo knows what they are doing let just leave it there. So I am stuck at 70.... unless my heart is racing... :rolleyes:

Please let us know what you find out on Monday, and thanks for caring so much about me! It means alot!

Thanks,

Amy

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hi lois -

i'm not exactly sure what you mean by the "mayo version" but am guessing you're referring to the fact that they didn't use meds and/or that they didn't wait for you to faint. this is similar to pretty much all of the tilts i've had with exception of my very first one (in summer of 97). i haven't had meds on any of the 3-4 tilts i've had in the years since (pretty pathetic that i've had enough to lose track of how many!) in terms of waiting for me to faint, they've also since tried to always get me down as soon as my vitals get wacky enough, which has been increasingly quicker as the years have gone by. it hasn't always been successful though (the intention for me not to actually lose consciousness) but generally it has.

just out of curiousity, what prompted you to have an additional tilt? for me there has always had to be a really compelling reason to submit myself to the torture :huh:

:( melissa

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Good luck Lois with your workup!

I've had the "mayo version" TTT before at Vandy...and the "regular" version when I first got sick. I much prefer no meds---my rates are high enough as is thank-you-very-much :(

Anyway, I hope mayo can find some new treatments for you to give you even more energy and a better quality of life. I look forward to hearing how things go!

-Lauren

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