Cardio visit - now I'm at a loss..!

[Abbanabba]

Hi guys, well I thought I'd let you know how I went at the Adult Congenital Heart Clinic in Melbourne. They did an echo then I had the consulatation with the cardio. She hadn't had a chance to fully review the echo when I spoke to her, but having looked over my past results she is inclined to agree with my previous cardio that the numbers don't reflect the symptoms I'm having.
AAARRRRGGGHHH!!!!

I've got to go back in a fortnight for a full lung function test, a treadmill stress test and the stress test with the dye (not sure what they call that one), and they will also hook me up for a Holter. Maybe that will show something out of whack. If not, then....... I don't know.

I'd still like to rule out PH, but they keep telling me my pressures (from the echos) are OK. I'm just a bit wary of trusting numbers from the echo, given they don't seem to be the most reliable diagnostic tool for PH. I guess I'll see how I go with the lung function test and go from there.

Meanwhile I'm just incredibly frustrated.

Anna : (

 

[geebee]

Anna,
Sorry for your frustration. Diagnosing things can be such a pain.
I am not a medical professional but I am not sure PH will always show up on an echo but I believe it will with the lung scan with contrast. I had one of those tests back in May to rule out a pulmonary embolism and it seems very thorough. Of course, the dye is never fun but it is quick to pass.
I wish you luck and I hope they find an answer that you are comfortable with.
Smiles,
Gina

 

[ericaj]

lung tests?

lung tests?

Hi Anna - Ii hope you get some answers.. I too am scheduled for a lung function test this thurs.. but b/c my stress test showed a problem with my lungs. I also seeing a pulmonologist thurs. too.

Gina - what was the lung scan with contrast like for you? I am having one of those done on thurs. also before i see the lung dr.

thanks,

Erica

 

[Abbanabba]

Gina -
At this stage, I don't care WHAT they find, just so long as they find SOMETHING to explain these symptoms!! It seems like all I've been doing is ruling things out, but not finding things out.

Erica -
Good luck with your tests on Thursday (by the way, did they pick up any problems with your lungs from the echos, or just the stress test?). I'll be sending positive thoughts your way.

A : )

 

[ericaj]

Anna

Anna

Anna,

Apparently I have trivial to mild pulmonary stenosis but pressures where fine.
The reason they found the lung problems was from the stress test - something to do with my body not increasing respirations as it should to compensate for exercise. I am going to try and talk to my Cardio tomorrow see what he thinks it may be so that I can go into the appt. without feeling empty handed. Have you had a CT Scan at all?

Erica

 

[MichyB]

Hi there ... I am just as frustrated as are you. I had some bizarre findings on an echo including a 58 PA pressure but according to the PH people at Columbia, I don't have PH. Their echo was normal.

It sounds like they are sending you in the right direction by additional tests. I think I had a lung angiogram which I think may be different than a lung scan, but it showed normal lung structures. I also had a stress test that was combined with pulmonary function tests. It showed some decreased oxygen levels on exercise but they are saying its due to deconditioning.

I believe that echos can be really off as far as detecting PH. Hang in there and keep going for the additional tests. From everything I've learned, a cath is the gold standard, but it is also invasive. If the other tests can find another cause, most docs thinking is avoid invasive where possible.

 

[Nancy]

Just a reminder. The gold standard for diagnosing PH is the right heart cath. Echoes can vary considerably, and are not considered a true measure for PH. It can be off in either direction by quite a bit regarding the measure for PH. You also NEED to have a PH specialist do your diagnosis for the most accurate diagnosis. Other doctors just don't see enough cases of it to be able to do a thorough diagnosis. And most of them don't even understand what it's all about, since it is a rare disease.

 

[KimC]

Anna,

I share your frustration, and 100% agree with Nancy: seek another opinion from a PH expert.

Many women in our VR.com community have lived with debilitating symptoms and were told various non-cariogenic causes. Given your history and inconsistent readings, I would also PUSH for a cath and put PH to bed once and for all. THAT is the ONLY WAY to 1) ease your mind if nothing's found (which would allow you to get on with your life); or 2) get treated for a life-threatening disease.

Of course you're anxious, you're 32 and losing stamina. Explain that, please Dr. so-and-so!

Please see my next post which I hope will provoke some discussinon about female heart disease, valve disease and modern medicine.

Getting ready for my soap box ...

Cheers,

 

[Abbanabba]

Erica -
Not too sure what the CT scan is... but so far all I've had is echos, 1 Holter and 1 MRI. I'll be really interested to see what the next Holter shows up since last time I was having very frequent ectopic events, and when I went in for a "sleep study" (..and I use that term loosely..) I didn't go 5 minutes - literally - without PVCs and PACs. Who knows, they might be the problem.



Re the PH, I dont understand how I can go from a dx of "mild PH" 2 years ago from a Doppler, to them not even being prepared to check it out for sure (surely it makes sense to test for it, even just to ease the patients mind and to confirm which of their test results are correct!). I'll be sure to get a copy of the echo from last week and see how the figures compare.

I'm also confused how they could tell me I needed a PVR because the numbers (QRS duration and regurg figures) showed it was time, but now, 2 years later, every thing is hunky dory (??).

The only other thing that's been mentioned is Chronic Fatigue, and while I definitely exhibit some of the symptoms, my brief research so far has shown no mention of SOB as a major symptom. There were also some other things that made me think CF is not the problem, but at this stage I'm fast running out of options.

I just hope the next round of tests are a little more conclusive.

Cheers all,
Anna : )

 

[tommy]

Anna,

Sorry a definitive diagnosis continues to allude you. Keep endeavoring to persevere.

 

[gijanet]

Sending hugs..........

Sending hugs..........

and prayers that you get some answers soon. I know all too well your frustration at not being able to get answers, not for myself, but for Katie, of course. It is so nerve-wracking and frustrating to get responses back that they, the specialists (in our case, surgeon, cath doc, cardiologist, and ER doc), are baffled by the symptoms presented. ARGGGHHH! Never mind feeling helpless! Anyway, I do hope you get some answers soon. You will be in our prayers for some resolution and relief.