CPET with right catheter bizarre results

Posted by rihw17 @rihw17, Sep 27 11:38am

Hello,
New to the forum. Here is a quick overview of where we are:

42 year old F, Positive PCR, March 2020 (long covid).
1 day at (level 3 trauma) hospital, transferred to (level 1 trauma) hospital ICU (not on ventilator) Treated with Chloroquine, heavy antibiotics, antivirals etc.
very long recovery via extensive PT.

The issue we are faced with now is that although recovery was progressing, elevated HR would cause dizziness, and standing from a sitting position would cause severe dizziness (likely PoTS). Also very low blood pressure (hypotension), and gastroparesis.

To try to further understand what might be going on we went for a CPET with right heart catheter. We were under the assumption that this was likely a cardiac issue but the results have stumped the doctors.
They found no signs of pulmonary hypertension nor any heart failure but her heart is not pumping blood correctly. The doctor indicated that the output level at rest should be around 5 and increase dramatically upon exercise.

The test showed a starting level of 0 and under exertion instead of a positive number it dropped to a negative 4. Which essentially means blood was being pulled back into the heart instead of out.

Additionally due to some apparent mitochondria damage, oxygen is not being transferred correctly into cells.

If anyone could offer some guidance or has ever heard of such a thing it would be greatly appreciated.

@rihw17, wow, the results of the cardio pulmonary exercise testing (CPET) sure are baffling. I'm bringing in a few members who have posted about cardio issues while recovering from COVID, like @spinto02 @kpatterson @mhugs @grammad @dw3 and @saraguev to see if they may have had similar experiences with the heart not pumping correctly.

rihw, what are the doctors suggesting your do to help the symptoms? What further testing will be done?

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@colleenyoung

@rihw17, wow, the results of the cardio pulmonary exercise testing (CPET) sure are baffling. I'm bringing in a few members who have posted about cardio issues while recovering from COVID, like @spinto02 @kpatterson @mhugs @grammad @dw3 and @saraguev to see if they may have had similar experiences with the heart not pumping correctly.

rihw, what are the doctors suggesting your do to help the symptoms? What further testing will be done?

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Hi @colleenyoung
Thanks for your help.
At the moment doctors are not sure what to do. We are awaiting some type of treatment plan going forward. For now we are to stay the course with very light exercise and continuation of meds (mestinon, Midodrine).

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@rihw17

Hi @colleenyoung
Thanks for your help.
At the moment doctors are not sure what to do. We are awaiting some type of treatment plan going forward. For now we are to stay the course with very light exercise and continuation of meds (mestinon, Midodrine).

Jump to this post

Are you being seen at a specialized Post Covid Care Center?

REPLY
@colleenyoung

@rihw17, wow, the results of the cardio pulmonary exercise testing (CPET) sure are baffling. I'm bringing in a few members who have posted about cardio issues while recovering from COVID, like @spinto02 @kpatterson @mhugs @grammad @dw3 and @saraguev to see if they may have had similar experiences with the heart not pumping correctly.

rihw, what are the doctors suggesting your do to help the symptoms? What further testing will be done?

Jump to this post

Wow, those results must be frustrating. I have not experienced anything like this in my case. I'm still waiting the results of my 48 holter and will go from there. My symptoms are mostly intermittent fast HR even while resting, and times when I feel like it's fluttering There doesn't seem to be any rhyme.or reason to it
I am considering getting a referral to the Post Covid Clinic to make sure nothing is being missed.

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@saraguev

Wow, those results must be frustrating. I have not experienced anything like this in my case. I'm still waiting the results of my 48 holter and will go from there. My symptoms are mostly intermittent fast HR even while resting, and times when I feel like it's fluttering There doesn't seem to be any rhyme.or reason to it
I am considering getting a referral to the Post Covid Clinic to make sure nothing is being missed.

Jump to this post

My appointment took over 2 months to secure, so if you are considering a Post Covid Clinic, go ahead and get on the schedule. It may take a while. Best wishes.

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@colleenyoung

Are you being seen at a specialized Post Covid Care Center?

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We have looked into it, but her doctors at the moment don’t feel it is safe. The feeling is that if she caught as much as a bad cold, never mind the flu or a delta variant, we could be in real trouble. At the moment we are working with pulmonology, cardiology, and neurology doctors all virtually. I just wish we had a better understanding of what this is? A dysautonomia, an immune system issue, or both. We feel kind of paralyzed not knowing what to do.

REPLY
@colleenyoung

@rihw17, wow, the results of the cardio pulmonary exercise testing (CPET) sure are baffling. I'm bringing in a few members who have posted about cardio issues while recovering from COVID, like @spinto02 @kpatterson @mhugs @grammad @dw3 and @saraguev to see if they may have had similar experiences with the heart not pumping correctly.

rihw, what are the doctors suggesting your do to help the symptoms? What further testing will be done?

Jump to this post

My cardio Drs say my great looks no different than previous years. I have cardio myopia n mytral valve prolapse for 20 years. I normally have low blood pressure, 105/68, I take meds. In the past side effects made thing worse. I don't have AFib, but their only solution was to implant a device on case of an AFib, I chose NOT t do so.
I have random fatigue after having Covid19. Short of breath randomly.

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@grammad

My cardio Drs say my great looks no different than previous years. I have cardio myopia n mytral valve prolapse for 20 years. I normally have low blood pressure, 105/68, I take meds. In the past side effects made thing worse. I don't have AFib, but their only solution was to implant a device on case of an AFib, I chose NOT t do so.
I have random fatigue after having Covid19. Short of breath randomly.

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Wow auto correct really screwed that message up. I take NO meds. I just self monitor, and eat a healthy diet. Take naps.

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@rihw17

We have looked into it, but her doctors at the moment don’t feel it is safe. The feeling is that if she caught as much as a bad cold, never mind the flu or a delta variant, we could be in real trouble. At the moment we are working with pulmonology, cardiology, and neurology doctors all virtually. I just wish we had a better understanding of what this is? A dysautonomia, an immune system issue, or both. We feel kind of paralyzed not knowing what to do.

Jump to this post

Might a virtual consult be an option for her?

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