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LisaBulman

Good News/bad News

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Here it is... I went for my PFT's today. I had the same tech I usually do and she is so nice. She squeezed me in and I was very thankful. Good news: my FEV1 increased by 5%. But I'm not exactly sure that really matters because in Feb 07 it was .01 lower than today, in Aug 07 it was .13 lower than in Feb. It seems to be fluctuating. The bad news: My DLCO was 17% lower than in Aug. Actually this is the lowest it has ever been, even before I did chemo. :( Now I wait until I see my doctor on the 22nd to see what he says.

 

Thanks for listening....

 

Hugs,

Lisa


Lisa Bulman

(Retired) ISN/SCTC List Coordinator

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Fundraiser

International Scleroderma Network (ISN)

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Hi Lisa~

 

I'm not really sure what any of that means but I just wanted you to know that my thoughts are with you.....Your not alone, we're all here for you!


Take care and stay warm,

 

Michelle

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Lisa,

Sorry to read about the drop in DLCO. How did your total lung volume do? Good news on the FEV. Hooray! It will be interesting to hear your doctor's report. I hope you are starting to feel better and breath better. Please try to get some rest this weekend.

 

Big Hugs,

Janey


Janey Willis

ISN Support Specialist

(Retired) ISN Assistant Webmaster

(Retired) ISN News Director

(Retired) ISN Technical Writer for Training Manuals

International Scleroderma Network (ISN)

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So sorry to hear about the lower DLCO, Lisa but glad your FEV1 is coming back up at least. These ladies could tell you more than I, kuntrybumzz, but this link from the site gives a pretty good discussion of the PFTs:

 

Interpretation of Pulmonary Function Test (PFTs). A PFT report provides a wealth of measurements; however, in the final analysis, only a few of these measurements are necessary to make a pretty good assessment of the patient's condition. James Allen, MD.


Warm wishes,

Jefa

 

Carrie Maddoux

(Retired)ISN Sclero Forums Support Specialist

(Retired)ISN Sclero Forums UK Chat Host

International Scleroderma Network (ISN)

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Hey Lisa,

All I know is FEV1 and DLCO are important. I don't know why FEV1 is though... I'm sad that your DLCO went down since Chemo's supposed to do well for those of us with lung involvement.

 

Sweet is right though.. don't fret too much till you see your doctor.

 

Hugs, peanut


You can deprive the body but the soul needs chocolate

my HMO makes me wear a helmet...

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Hi Lisa,

 

I'm sorry to hear your "bad" news. But like Sweet said, don't fret over it, wait 'til you hear from your doctor.

 

When I was thrown on Cyclophosphamide a couple of years ago, it was because my DLCO had dropped, and the rheumatologist I was seeing at the time was the one that panicked and threw me on it so fast. One month short of being done with that treatment is when I saw my scleroderma expert, and he told me that I wasn't sick enough to be on it. He said that he would have ordered up another PFT first to see if I just was having a bad day. And looking back in hindsight, it WAS my allergy season, and I was getting SOB due to the mould content in the air.

 

So don't despair. Keep positive. These nasty old tests don't always hit the nail on the head. I'll be holding positive thoughts for you.

 

Great news on the Fev1, I'm not sure what that one is either, but I'm gonna look at that link that Jefa put up.


Happy people don't have the best of everything, they just make the best of everything they have!

 

Warm and Happy to you! Vee

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Hang in there, one day doesn't always determine the next! I don't know all the lingo, but will be reading the link to learn more. I hope you found the time to rest and regroup this weekend! My thoughts are with you,

Michele


Soft hugs your way,

 

Michele

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Lisa,

Ask for another PFT if your dr. doesn't suggest one. Maybe you'll see better results. In the meantime, concentrate on some fun things, things you enjoy and taking care of yourself--not just everyone else! Thinking of you and hoping for all good things.

xoxo emmie

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Hi Lisa,

 

Thanks for the update on the good news/bad news. I'm glad for your good news and sorry for your bad news! I'm sure your doctor can help sort it all out for you.

 

As you've found, with PFTs, the numbers can vary an awful lot from one test to the next, without meaning very much. What really matters, usually, is how you are feeling. You can have great numbers but still have shortness of breath -- for any number of reasons or a combination of a few.

 

I still cast my vote for you to be slowing down a little more, until you feel tip top again...yeah, as if there is such a thing with scleroderma...but you know what I mean, I hope. It's a burden on our immune system to do too much and hard to strike the right balance with "enough". But especially hard for you, with several young and active daughters to take care of!


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.

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Lisa,

I hope you were just having a bad day when you had your pfts last. A 17% percent drop would concern me too, but maybe, just maybe, it was just not a good day for you. If you don't mind me asking, what is your DLCO?

 

Give the Bulman girls a big hug!!! October 21st is just around the corner. My suggestion is to have some chocolate, put on comfy pjs and rent some chick flicks.

 

xo,

Tangelo

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