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DLCO and Pulmonary Hypertension (PAH)


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#1 Ron

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Posted 28 July 2015 - 05:58 AM

I am getting really worried that I may have PAH.  According to my PFT, the one 2.5 years ago was:

FVC 59%
DLCO 60%

My PFT in June of this year was:

FVC 45%
DLCO 44%

Both summaries stated reduced DLCO could include pulmonary vascular disorder.

Do any members here have any opinions from your experiance?

 

I am still waiting for a CT scan and a SD, Lung specialist.



#2 Joelf

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Posted 28 July 2015 - 06:12 AM

Hi Ron,

 

Thankfully, although at one point my DLCO was 48%, I've never had PAH so it's possible to have a low DLCO without having it. I have an ECHO and ECG every year to check it.

 

I've included a link to our page on Pulmonary Hypertension which I hope you'll find helpful and informative. Unfortunately, until you're able to see the specialists, it's difficult to confirm whether or not you have or will develop it.

 

Are you able to chase up your specialist appointments at all?

 

Kind regards,


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#3 Ron

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Posted 28 July 2015 - 02:28 PM

Hi Jo,

 

After some calls today I now have a Rheumatologist that specializes in SD.  Have to wait for an appointment.  Called my family doc, they still have not sent the request in for the CT scan, they said there was never a request.  I clearly remember talking about this with my doctor as I was concerned about the dye they use.  My family doctors office is really bad for making mistakes.

 



#4 Joelf

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Posted 28 July 2015 - 07:23 PM

Hi Ron,

I'm very pleased to hear that you've managed to find a Rheumatologist that specialises in Scleroderma; hopefully you won't have to wait too long for an appointment.

Sorry that the request for a CT scan went AWOL; I can empathise, the administration in the health service in the UK is pretty dire as well. I've had to chase up many appointments, not so much with Scleroderma, to be fair, but certainly when I was trying to get my hip replacement organised. Unfortunately, the left hand very seldom knows what the right is doing!

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#5 Shelley Ensz

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Posted 29 July 2015 - 03:59 PM

Hi Ron,

 

I'm delighted that you are getting referred to a scleroderma expert!  What a relief that will be for you.

 

As for the CT scan, arghghgh. Are they ordering it now, or do you have to see the doctor again to get it in motion?  Perhaps things were left hanging in your visit, in that perhaps they thought questions or objections to the dye meant you were objecting to the test itself.  Who knows? Its certainly worth getting squared away, though.

 

For low DLCO, there are about a dozen major causes of it, and pulmonary hypertension is only one of them. Even anemia and heart failure can cause low DLCO, so low numbers are not an automatic shoe-in for PH, even in the setting of scleroderma. Which means that your pulmonologist will have to figure out the reason for it, sooner or later.

 

Okay, I can hear it now, you're going to say, gee thanks Shelley for giving me something MORE to worry about!  :yes:   As I see it, your day would just be incomplete without a little worry bubble flung into the air from my end of the world!  But seriously, that's meant to be reassuring, in its own dim little fashion, as some things are a bit preferable to PH.

 

:hug-group:


Warm Hugs,

Shelley Ensz
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Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#6 quiltfairy

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Posted 29 July 2015 - 04:48 PM

Hi Ron,

Have you thought about not worrying so much, as I have a friend that is a doctor who told me it is really hard to get accurate levels for blood pressure and PFTs on a person that worries too much. I did that at one time; now I just tell myself IT IS WHAT IT IS and yes sometimes I have to scream it out, but when I get in the panic mode I not only wind up physically sick but depression kicks in or anxiety kicks in and then there is no accuracy to any test.

At one time I wanted to be a paramedic but I gave that up for my true calling driving a truck. You would be surprised how blood pressure can change from scene of the accident and after our patients relaxed when we got them transported to the hospital. Good luck and I will keep you in my thoughts.

I am no longer a certified paramedic, I let it slide a number of years ago and I think that was about 1995 since I last certified.

#7 Ron

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Posted 31 July 2015 - 03:06 PM

Thank you Shelley and quiltfairy yes I do worry a lot, been that way my entire life.



#8 Shelley Ensz

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Posted 03 August 2015 - 08:31 AM

Hi Quiltfairy,

 

I also find it strangely comforting to say, "It is what it is." Actually, when I first heard the saying, I had a knee-jerk bad reaction to it. I suppose I must have been thinking, oh no, you can *always* change things for the better! 

 

But much to my everlasting dismay, it isn't possible to change the vast majority of things in life, and I've done myself a lot of harm by trying. It is probably a matter of thinking or hoping that we have more control than we really do.

 

I've not only wasted energies on worrying too much, but I also have a "watched pot" mentality.  I can actually stare at food cooking, or the computer cranking away, and think that somehow by mere force of will, it will cook or compute faster!  Or that by being impatient, it will somehow speed up a tardy friend.

 

Being human means we get to spend huge amounts of time being silly gooses, doesn't it?  I've found some success by telling myself over and over that I'm resilient. It's a good word to me, as it acknowledges that there is, indeed, something there that could use some overcoming, either a major tragedy or a minor irritating thing, and it helps me find or create the emotional wherewithal to deal with it.  Happily, resilience can entail some crying and even some worrying, if we still overall keep our eye on the ball, which is that we are resilient, so we can figure out a way to deal. Eventually!

 

I do believe that some of us are just not naturally worriers.  And then again, there are people like me. Even videos from my childhood show me as being cranky, tearful and in dire need of a nap!  So what comes naturally to many for me has required an awful lot of study and unrelenting practice.

 

One thing I've picked up on is that all of us are continually scanning our environment, and we are always assessing it as to whether it holds promises or threats. The amazing thing is that we can exert control over which aspect we are going to focus on!  

 

So I could, for example, look out my window and see a tree. If I wanted to, I could consider the fact that the tree is probably home to hundreds of spiders, maybe some of them poisonous. It could be suffering dry rot, and about to topple over into my house and land on me during the next high wind. It might harbor a squirrel, and the squirrel might be rabid!  Maybe the squirrel will bite me on my way to the car, so perhaps I should stay inside. For the rest of my life.  Plus, the tree could be sawed down, and made into weapons, and someone could attack me with them!

 

Or, I could consider that it is a lovely tree. I could listen to the harmony of the birds singing away, accompanied by the gentle rustling of the leaves. I could recall the joy of climbing trees when I was younger, and how I had rescued the neighbor's stray cat who was too scaredy-cat to come down!  Why, altogether, it could lead me to imagining all the endless joys and mysteries of the universe, and being astonished at how even the sun managed to rise this morning, even though I had not spent a moment mentally urging it along.

 

I have free choice and an imagination. I can use it to my benefit, and the benefit of the human race, or not. My pick entirely, and my choice from one minute to the next.

 

So maybe "it is what it is", or maybe it is...only what I make of it, for better, or for worse. 

 

:hug-group:


Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#9 quiltfairy

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Posted 03 August 2015 - 03:09 PM

Thank you, Shelley.

As you said the things I wanted to say, only in a more eloquent way.

Hi Ron,

I understand you're worrying about things; I grew up with my mom worrying about everything. I went through a tornado in 2010; you might know about it because we were on the national news as the town of miracles. For a long time after that, every time the clouds turned dark I was getting a lot of stuff ready for the basement and I would worry until the weather was better. I know I was not the only one as the grocery store parking lot became full of worrisome people. It took a lot of time but now I sleep through storms and I very seldom listen to the weather because that worry took a lot of time and energy. Oh, I still get a little worried when the line under the TV show says tornado warning and it also took a lot of therapy.

I am glad you talk about how you feel on here because information is a good thing and just maybe with all the information you get you can stay less worrisome. I will keep you in my thoughts and have hopes for you for the best.

#10 lessismore

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Posted 05 September 2015 - 04:02 AM

I heard that a good quick indication of whether an SSc patient's decrease in lung function is due to pulmonary fibrosis or PH, is to divide the FVC% by the DLCO%, if the quotient is over 1.6, it indicates PH, if it is under 1.4, it indicates pulmonary fibrosis.  



#11 Joelf

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Posted 06 September 2015 - 04:28 AM

Hi Lessismore,

 

Welcome to these forums!

 

Thanks for posting that interesting information about the indication of PH and PF.

 

Please do keep posting and let us get to know you.

 

Kind regards,


Jo Frowde
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