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Lungs functioning at 45%


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#1 Ron

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Posted 13 July 2015 - 05:46 AM

I just called the lab where I had my PFT test done, I wanted to know what capacity my lungs were functioning, they said 45%.

I was not expecting that low of a number.

#2 Joelf

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Posted 13 July 2015 - 08:17 AM

Hi Ron,

 

Sorry to hear that your PFT's were not as good as you had hoped.

 

If it's any comfort, my diffusion was 48% at it's very worst, but after my treatment it improved steadily and is now about 80% and has remained consistent over the last few years.

 

Kind regards,


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#3 Ron

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Posted 13 July 2015 - 08:40 AM

Jo,

My number was the lung capacity. I am not sure about diffusion or what that is. My lung capacity back in Jan 2013 was 59%, now its 45%. That is FVC. What is your lung capacity?

#4 miocean

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Posted 13 July 2015 - 02:52 PM

Ron, 

 

Are you referring to your Total Lung Capacity (TLC) or your diffusion (DCLO)? I know you must be terribly disappointed to hear that low of a number, I know I am with mine. My TLC is in the 40's and my diffusion is around 27%. The important thing is how you feel and how you can manage with those numbers. In general, I feel good. I am frustrated that I am having trouble breathing, even with oxygen, but I am still able to most of the things I want to do. Please read Jo's post on mycophenalate and talk with your doctor about it. Have you had a right hearth catherization to check for pulmonary hypertension?

 

Try not to get discouraged. 

 

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#5 Ron

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Posted 13 July 2015 - 02:58 PM

Jo,

My PFT lung capacity back in Jan 2013 was 59% and now its 45%.   I don’t understand diffusion, here is the report can you make any sense of it?

 

diff.png



#6 Ron

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Posted 14 July 2015 - 02:44 AM

miocean,

 

"Have you had a right hearth catherization to check for pulmonary hypertension?"

 

No, I am still waiting to see a lung specialist. Wheels turn slow here in the health care business.



#7 Ron

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Posted 14 July 2015 - 05:33 AM

miocean,

 

The lab tech said my lung capacity was 45% it was classed as FVC. I don't know what TLC is, as she didn't mention it when I called her.  TLC is mentioned in the upper image on this page, but I don't know what that is.

 

 

See this page for results:

Understanding your breathing test results.



#8 Joelf

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Posted 14 July 2015 - 08:14 AM

Hi Ron,

 

TLC is total lung capacity and I've found a link to Lung Function Testing give you some more help and information to decipher your PFT's.

 

The diffusion rate is the amount of carbon dioxide/oxygen exchange, which takes place in your lungs, as you take a breath.

 

My last Lung Function Tests (two weeks ago) showed:

 

FEV1 2.62 (124%) (FEV1 - forced expiratory volume, 1 second - the volume exhaled in one second.)

 

FVC 3.51(139%) (FVC - forced vital capacity - maximum total volume that can be exhaled)

 

TLCO (diffusion) 80% (TLCOc - "transfer factor" as above, but continous, rather than based on a single breath)

 

KCOc 81% (KCO - rate of carbon monoxide uptake, KCOc - continous rate of carbon monoxide)

 

You can see what I mean on your other thread, about my PFT's being higher than average, despite my having Scleroderma.


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#9 Ron

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Posted 14 July 2015 - 09:03 AM

Jo,

 

You have impressive lungs, surely not the normal compared to the general public.   Most of the terms on my PFT are not the same as the ones you posted, the only one that is the same is FVC and TLC.



#10 Joelf

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Posted 14 July 2015 - 09:25 AM

Hi Ron,

 

I was very fortunate, as before I was diagnosed with Scleroderma I was very fit (some would say obsessional! :wink: ) and I used to run half marathons and work out almost every day at the gym, pounding away on the treadmill. Consequently, my lungs were in very good shape and also, because I knew my capability so well, I picked up on my shortage of breath etc. very quickly, so was able to receive treatment before the inflammation on my lungs turned into fibrosis.

 

The downside of all this high impact exercise is that although I have a cardiovascular system that many would envy, unfortunately, I'm now paying the price with ruined joints such as my hips (not helped by the Prednisolone I take either!)

 

Ron on 14th July 2015 - 11.03am, said:

 

Jo,

 

You have impressive lungs, surely not the normal compared to the general public......... 

 

My consultant did actually describe my lungs as having "super normal lung volumes", due to my extreme fitness at the time. :wink:


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#11 Ron

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Posted 15 July 2015 - 05:20 AM

Jo,

When I was young, a few years before my Raynauds diagnoses 1n 1984, I was very active, weight lifting, Marshal Arts, and rock climbing.  I was in good shape, but once I got Raynauds, I could not rock climb or do Martial Arts anymore because of the pain in my hands and feet.  I was a loyal Pepsi drinker and loved junk food like chips and chocolate bars, I always said that was the reason my SD progressed so slow, all the Pepsi and junk food.

Having SD didn't bother me until this year when I had SOB. 2.5 years ago when I had my PFT and my lungs were at 59% it still didn't bother me, the SOB and the 45% lung capacity has me now worried about the final outcome of this disease.  The thought of dying of suffocation is not a pleasant thought.  But it's unpredictable, just have to roll with the punches now.



#12 Amanda Thorpe

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Posted 20 July 2015 - 11:56 AM

Hello Ron

 

My mother has terminal heart failure and has had two episodes of pulmonary edema and it was frightening seeing her having difficulty breathing. She has had four heart attacks and we reckon that if there is a number five it will be the last one and lets face it, that's preferable to, as you say,  to suffocating to death. I appreciate your frankness, I don't see the point in beating around the bush either.

 

Take care.


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