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summer

Upset about PFT!

11 posts in this topic

Hi everyone,

I have just come back from having my PFT, I have it done every 6 months.

I was able to get my results straight away and I am a little upset. I have been feeling really well lately except for my problems with my achilles and feet. I have managed to come off Prednisolone 3 months ago and lost 7kilos in weight, and even managing to walk to try and get a bit fitter.

 

One year ago my baseline TLCO which is the same as DLCO was above normal in the percentage range. My TLCO today is 73% , 6 months ago it was 78%.

I am rather shocked that it has progressed to this, there is nothing like a bad test result to bring me back to reality :( .

 

I have a few questions I am hoping that someone can kindly answer for me.

 

1. What does the TLCO have to be before it is really bad and I start to get symptoms?, I have no symptoms at this point in time but have had SOB at times intermittently.

 

2. What is the treatment and does it slow the progression at all?

 

3. What range does the TLCO have to be before I would need O2?

 

4. Would exercising make my lungs worse?

 

I was on Prednisolone 3 months ago for approx 3 months as I had pain in my lungs, severe SOB, this has since subsided whilst on Prednisolone. I have not had these symptoms come back since. I failed the stress/echo test as I was being investigated for PH. My cardiiologist has put me on Atenolol for tachycardia. Does anyone think that me taking the Prednisolone in the past would of made my lungs worse?

 

I am not due to see my rheumatologist for 6 weeks , my cardiologist said there is no need for me to see him again unless I need to change from the Atenolol. I do have my first appointment to see a Respiratory physician in 3 weeks for a nodule found in my lung 12 months ago and also to investigate SOB that I have at times.

 

I'm sorry this is so long and I really appreciate your thought or opinions.

 

Take care

Celia

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I am no expert, just wanted to send you a hug. I too am on the Prednisone to see if it will improve my PFTs in 6 months.

 

I believe you do not need O2 until your %'s run 50 or below. Seems that is what my pulmonary explained to me when I asked. Hang in there. Maybe there was just a small variation in the #s that day and maybe it was just coming off of the Prednisone. Hope your next numbers are stable.

 

Michelle

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Celia, I'm sorry to read that your percentages are down, but I'm hopeful that once you see the respiratory dr... he/she will proceed with the necessary action(s) in getting answers/solutions for you.

 

Until then, please know that I'm keeping you in my thoughts.

Big Hugs, Susie


Special Hugs,

 

Susie Kraft

ISN Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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Hi Celia,

I am so sorry that your numbers have gone down. With my dr, he wouldn't consider that a huge change because there are many factors into having the test like one machine might be slightly off from another, maybe the person administering the test could have affected your effort or just how you felt on the day of the test. Try not to panic and see what the dr has to say.

 

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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Celia,

I agree with Lisa. That change is really insignificant. As much as a 10% difference can be seen with different equipment, technicians and the technician's technique. I had my pft yesterday as well. My DLCO was at 49. In July it was 56 and 49 in March. I got to meet with my pulmonologist right after the test and she said "It's stable and that's what's important." So she considered the 49-56-49 as the same and thus stable results. What she has always looked for was a trend. Over a 3 year period my DLCO dropped from 73 (first pft) to 49, each test showing a decrease. That's when she ordered a HRCT and found fibrosis in the lower lobes. Now that's stable based on the last 3 pfts. The really GOOD news from yesterday's pft was that my TLC (total lung capacity) went from 49 to 64! That was significant!

 

As far as when do you feel it? - Everyone is different. I've read that some people can have severe lungs problems and not even know it. I think the more active you are, the more you notice it.

 

I am on supplemental O2, but that was not decided by the pft results. My O2 saturation reading was the determining factor there. With my insurance company and gas supply company, in order to get approved for supplemental oxygen your O2 sat has to be at 88% or below. Mine drops well into the 80's and sometimes 70's when I walk, but in the high 90's when I'm sitting. So I have O2 for exertion and sleeping. I don't need it when I'm just sitting.

 

My doctors ALL tell me to exercise. It's good for the heart and the lungs! I go for walks in my neighborhood with my O2 bottle in my backpack. However, one need's to start slow and never start an exercise program without talking to your doctor first.

 

Big Hugs,


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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Thank you everybody for your replies.

 

Janey and Lisa, I always go to the same hospital to have my PFT, It has a small one person one machine Lab, so I know I use the same machine every time.

 

The technician that did the test made me rest for awhile then decided to redo the test again, it was the same.

 

I guess it is a wait and see game, many thanks again everyone.

 

Celia

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Darlin'

You're gonna be fine. I was put on oxygen a few months ago. My 02 levels are 36% volume and 25% diffusion. I was at 36% diffusion when I was put on 02. My pulmonologist told me diffusion is more important than volume. I think it's cause if you have interstitial lung disease its the build of of scar tissue which blocks the diffusion, but that's my guess.

 

As far as treatment goes I tried IV cytoxan. Some find cellcept works.

 

Deep relaxing breaths,

peanut


You can deprive the body but the soul needs chocolate

my HMO makes me wear a helmet...

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Hey sweets!

 

Your going to be fine. I, like peanut, was put on oxygen only a few months ago.

 

My O2 levels are 75% volume and 44% diffusion. My pulmonologist likes to look at the diffusion number more than the volume.

 

I was put on oxygen because my O2 sats won't stay above 90%. It likes to stay pretty much around 80% and my doctors don't like that... and we can't figure out why they are so low.

 

I feel fine... I have noticed that because I'm on oxygen I have less headaches and I'm not as tired as I used to be.

 

The treatments that my doctor's have suggested are iv cytoxan, and cellcept... currently I'm doing the cytoxan. We shall see how that goes.

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Hey Spacey,

Do your O2 sat levels stay in the 80s even when you are just sitting around doing nothing? Do you use oxygen all the time?

 

I again find it interesting the difference between doctors and tests interpretations. My pulmonologist was very excited to see my TLV increase even though the DLCO remained at 49. Her explanation which makes sense (it's all in the math), is the higher your lung volume the more quantity of air you can diffuse, thus more oxygen into the bloodstream. There's more oxygen to process at 69% TLV than at 49%. So she encouraged me to continue to do my lungs exercises to get that volume up further. Of course, I guess it comes down to exactly what they are looking for. Each number tells them something different about what's going on inside us. But just one number can't tell it all. So more tests! UGH!

 

I'm glad the O2 is working for you and I do hope they can find the cause of your O2 drop.

 

Big Hugs,


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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Janey,

 

yeah... even when I'm sitting doing nothing it stay's in the 80's... and when I'm doing my 6 minute walk, or anything like that I drop down to 75%... so yeah... still can't figure out why it's so low...

 

and yes, i'm on oxygen 24/7. i have actually found that I get less headaches than I have had in the past. so that's always good.

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