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Advanced/Invasive CPET?

Rebeccare

Moose Enthusiast
Messages
9,064
Location
Massachusetts
I recently saw Dr. Systrom at Brigham and Women's Hospital in Boston, and he suggested having an advanced CPET (the kind where they put in a couple of catheters before you exercise). Have any of you ever had this test before? What did it feel like? How did it go? Did you recover easily? Did you receive useful data from it?

I'm a little (okay...very!) nervous, and I'm on the fence about scheduling it.
 

*GG*

senior member
Messages
6,389
Location
Concord, NH
I recently saw Dr. Systrom at Brigham and Women's Hospital in Boston, and he suggested having an advanced CPET (the kind where they put in a couple of catheters before you exercise). Have any of you ever had this test before? What did it feel like? How did it go? Did you recover easily? Did you receive useful data from it?

I'm a little (okay...very!) nervous, and I'm on the fence about scheduling it.

Not knowledgable on this testing, I have had the 2 day in a row CPET testing done (in Ithaca, NY).

You on Facebook?

GG
 

TenuousGrip

Senior Member
Messages
297
I had mine in mid-November (w/Systrom and Waxman). All things considered, the entire thing went fine.

No part of it is especially fun ... but it wasn't anything like a misery for me. I would also say that nothing was painful. It's really just one pretty long day ... if you know what I mean.

If you've been through a few push-crash cycles ... well ... this will quite likely just feel like another one ;-)

In my case, I got very valuable data from the iCPET but it wasn't particularly good news. I wrote about it here.

I felt very well cared for at Brigham & Women's. To a person, they were all kind, professional, efficient, and compassionate. If I can answer any specific questions for you I'd be happy to try.

Oh ... and if you do go that route ... in the Cath Lab ... tell them you've heard good things about "Suga' Booga'"

Trust me :)
 

Rebeccare

Moose Enthusiast
Messages
9,064
Location
Massachusetts
No part of it is especially fun ... but it wasn't anything like a misery for me. I would also say that nothing was painful. It's really just one pretty long day ... if you know what I mean

Thank you--it's reassuring to know that the test isn't not all that terrible and didn't hurt too much. Today I remembered that few of my students have had this test in the past (I work with kids who have special needs, several of whom have heart defects). So if they can do it, I can't wimp out! Still, I'm bit worried about fainting--I actually had to lie down when Dr. Systrom was describing the test because I began to get a little lightheaded.

In my case, I got very valuable data from the iCPET but it wasn't particularly good news. I wrote about it here.

Oy, I'm sorry that you got such a difficult diagnosis. How are you hanging in? I am impressed that someone who wrote a post entitled 'bad news' that does contain genuinely bad news still managed to throw in a few smiley faces.

tell them you've heard good things about "Suga' Booga'"

I don't know...I spend so much time trying to convince doctors that I'm not crazy, and I feel like using that phrase in a cath lab that might be a step backwards!
 

Seven7

Seven
Messages
3,444
Location
USA
I saw this used on a POTs research and I really think we have the best shot for objective testing on CFS. We can see the anomalies even if you don’t know why and it is a FDA aproved.

The 2 days Cpet would need to be approved vs this one is not.

I wonder if as a community wouldn’t be smart to use this in research as a objective measure and to subtype
Populations.
 

Rebeccare

Moose Enthusiast
Messages
9,064
Location
Massachusetts
I really think we have the best shot for objective testing on CFS
That's the main reason why I'm considering going ahead with the testing. I'm big on solid, tangible evidence, and it seems like this test can provide a good look at what's going on in the body. And the results seem like they'd be more convincing than blood tests (if I had a nickel for every time I heard "Well, your test for Lyme is negative, but that doesn't necessarily mean that you don't have Lyme...")

The 2 days Cpet would need to be approved vs this one is not.
I'm afraid I don't understand--do you mean FDA approved or insurance approved?

I wonder if as a community wouldn’t be smart to use this in research as a objective measure and to subtype Populations.
Does the data collected so far show clusters of different results for different 'flavors' of ME/CFS?? I'm trying to read an article on this topic but I'm having such trouble understanding it.
 

Rebeccare

Moose Enthusiast
Messages
9,064
Location
Massachusetts
Thank you--this video is was informative and helpful! Of course, watching the fellow pump away on the exercise bike with all of the tubes and wires doesn't make me feel very enthusiastic about doing this, but I suppose if he can do it so can I.

Thankfully my insurance company said that they cover these diagnostic tests (thank goodness), so I'm good to go!
 

Marty

Senior Member
Messages
118
I did the invasive CPET and feel like I got good data. However, they left me alone in the recovery room for a long time and I got tremendous pain from the neck catheter, which stopped when they finally took the catheter out. Lesson: always have someone with you.

Back home, no one would even look at the data. "We do it differently here." Lesson: stay in Boston until you get useful help.