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DLCO and echo


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#1 warmheart

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Posted 12 April 2010 - 02:01 PM

Hi everyone,

This is probably a pretty lame question, but recently I had repeat PFTs and was thrilled to hear that my DLCO is stable at 80% after a big drop in recent years. I knew that was great news, and means that I'm low risk for developing PAH. So I walked home making big plans for the next 50 years of my life, but pretty quickly realized that there was just one problem, which was that I'm still short of breath (SOB), have trouble with stairs, swollen feet, etc.

So here's my lame question: I know that it's very unlikely with a DLCO of 80% that the echo will turn up abnormal. Is there any possibility of that at all? And if not, is an echo really necessary? My sclero doctor wanted it, and I'll have it done regardless, but I'm just confused about how all that fits together. The other question I have about the echo is whether it's important to make sure they know why I'm there. Last time all they knew about me was that I was SOB, and they looked for heart valve disease. It was nice to know I had normal heart valves with only a bit of leakage in a couple of them (including my tricuspid valve...) but that wasn't why I was there! What should my primary care physician write on the referral? (I could have chosen to have it done through my rheumatologist at the sclero clinic; maybe I should have?)

Thank you!

Hugs,

warmheart

#2 erika

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Posted 12 April 2010 - 11:56 PM

Dear Warmheart,

I cannot answer to any of your questions since I also have no idea how these problems function. Is PAH only related to pulmonary function or it has its own mechanism of dysfunction have no idea.

Although my breathing is poor due to allergy, my lung function is still okay (Diffusion capacity for CO is 95% and KCO (transfer co-efficient) is 85%. Whatever this means!? However my ECHO shows that there is no PAH but the pressure is at the upper limit (25 mm/Hg). I was terrified by that. The immunologist doctor did not comment that in his letter, just stated these levels. From that I conclude that PAH does not depend only on pulmonary function. I might be wrong.

Yes it would be good for the ECHO doctor to know that he should be looking for PAH, my immunologist doctor has instructed cardiac section to do so. So should you mention this to your ECHO team and maybe show your results in lung function and sclero diagnosis.

Wishing you luck. Please inform us about your results.

Regards

Erika

#3 janey

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Posted 13 April 2010 - 12:00 PM

Warmheart,

Congratulations on such a wonderful DLCO! I'm certainly not a doctor, but an 80% DLCO looks good for ruling out other lung problems (such as fibrosis) if I'm not mistaken. In reference to the ECHO, I agree with you and Erika that not only should you know why you're getting an ECHO, but the technician and cardiologist that evaluates it should also know. According to WebMD, an ECHO is used to evaluate the overall function of the heart. One thing that is mentioned is the "thickness and movement of the heart wall." Scleroderma can cause a stiffness or fibrosis in the walls of the heart so my cardiologist always checks for that in the Echo.

There are many things that can cause shortness of breath (SOB), so it sounds like your doctor is covering all of the bases to find the cause of it. I hope you get some answers soon. Let us know how things go and what you find out.
Janey Willis
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#4 warmheart

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Posted 15 April 2010 - 10:41 AM

Thank you, Erika and Janey,

Yeah, I'm thrilled to have a DLCO of 80%! The first try was in the high 70s and I would have been very happy with that! Erika, 95% is awesome. Mine was over 100% at baseline (or sort of baseline, because by then I'd already had sclero for a few years).

I'm not concerned about SOB in itself; it is what it is, and I think at this point it's just up to me to keep building my lungs up to get the best out of them. It was the drop in DLCO combined with some medical history (long story) that was worrisome, because of the high risk of developing PAH. As my rheumatologist explained (and I already knew), it's fine if the DLCO stays where it is, but it was a big drop in a relatively short time, and if there's a trend of it dropping it would be cause for concern. No way to know which it was except by having repeat PFTs. He told my primary care physician that I have to have PFTs every year.

As far as the echo goes, it's basically to rule out PAH (I can't remember whether I'm supposed to have that annually too; I have to check on that.) But if they don't know that's the reason you're there (screening for PAH), why would they bother? :emoticon-bang-head:

Anyway, I'd be grateful to hear from someone who's navigated this. I'm going to see my primary care physician; what should I ask her to put down as the reason for the test? Last time the echo technician was the stern silent type, and I didn't dare open my mouth to try to say anything at all to her. I don't want this echo to be another waste of time. And I'm still not sure why I need an echo with an 80% DLCO, so maybe someone can explain? Thank you!

Hugs,

warmheart

#5 Jeannie McClelland

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Posted 15 April 2010 - 11:02 AM

Hi Warmheart,

I got snagged by my rheumatologist on Tuesday and introduced to a pulmonary hypertension (PH) specialist who was recruiting patients who have both scleroderma and PH for a study. The PH specialist said something in his explanation of the study that bears on your question. He said that "not all scleroderma patients get PH or pulmonary fibrosis, but some will get it, some will get PF, and some unlucky few will get both". So I inferred that PH can exist apart from PF (and by extension the DLCO, etc.). There was a lot more, but that's the part that is interesting.

I have both and generally have an echo for the PH once a year to be on the look-out for any worsening or changes in the heart. It states plainly on my paperwork that I have systemic sclerosis (which on its own should be a 'heads-up') as well as PF/PH. The doctor who orders the echo should not only give the diagnosis, but the reason for the test. You might not see it spelled out though, since they often use a diagnostic and/or procedure justification code for insurance and billing purposes.

Congratulations on your DLCO and if you do have an echo, best of luck with that!
Jeannie McClelland
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#6 warmheart

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Posted 17 April 2010 - 01:57 AM

Thanks, Jeannie! That's helpful to know.

Hugs,

warmheart :)