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Hi Everyone,

I have just read the reply that James "Millerscrossing" wrote in about, how he has normal days and bad days with his breathing.

This struck a chord with me, I too can have days or even hours when suddenly I can feel that I am also SOB which can be so debilitating, yet on the other end of the scale it can disappear and I feel almost normal.!

 

As many as you may know I am being investigated for PH, my SOB has dramatically increased, but I don't get it 24/7, it seems to come in bouts.

I had a stress/echo that I only lasted 5 minutes and my breathing was very bad, my PFT which I had the other week I managed to get the Lab to fax me a report before I see my Rheumatologist.

 

The Spirometry was all within the normal limits.

The Co Transfer Factor:

VIN - 3.44 - Baseline %mean Pred)

VA - >3.2 (normal range) 4.2 (105%) - baseline % mean Pred)

TLCO - >18.9 (normal range), 18.6 ( 78%) - baseline % mean pred

, my last one 4 months prior was 20.9

KCO - 4.7 - 7.3 - NORMAL RANGE, baseline (% mean pred) 4.4 73%

 

The report states: Spirometry is within normal limits. There is no significant response to inhaled broncholdilator on this occasion. Gas transfer is at the lower limit of normal. Theere has been a borderline significant decline in transfer factor since last test on 27/02/07.

 

How bad does the TLCo have to get before o2 is given to a patient.? When I first saw my cardiologist a couple of weeks ago he also said that if it was PH my breathing would stay the same 24/7. I am due to see him in a few weeks to discuss my results on the stress/echo and for further testing.

 

During the early stages of PH, can anyone shed any light whether it is normal for breathing to change from SOB to normal all the time?

 

Your thought and opinions are always most welcome.

 

Take Care

Celia

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Hi Celia,

I have ILD but not PH. My numbers were a bit high but within normal range so not a PH diag yet. I am not sure what your number would need to be for O2 and I'm sure even dr.'s would have different numbers for that question. My symptoms are the same as yours, fine and then SOB all in the same day and sometimes with little or no activity involved. What does your dr say? Just hang in there....

 

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,

These are all good questions that you should definitely discuss with your doctor as well. I have both ILD and mild PH as well as atrial fib which my cardiologist says are probably due to the lung problems. Please compare your pft results with the link to Interpretation of PFT test. (Shelley provided this in another thread. I hope you aren't having any more problems. Let us know if you are)

 

AnyWho - You asked "How bad does the TLCo (actually - DLCO) have to get before O2 is given to a patient.?" I was prescribed O2 based on my O2 saturation levels - sitting, walking and sleeping. When sitting, I'm in the high 90's, but it drops (or use to drop) into the 80's when I walked more than 15 feet. It also was in the 80's over 60% of the time while I sleep. So I was prescribed supplemental oxygen when sleeping and any type of exertion (chores, running errands, taking walks, etc.) I do get very short of breath with any exertion, but not if I stroll.

 

You mentioned a cardiologist, are you also seeing a pulmonologist? A lung doctor should be evaluating you for lung problems. My pulmonologist told me that the drop in O2 sat is probably due as much to the PH as to the ILD and that PH can make you SOB on exertion.

 

BTW - be pleased that you numbers are at or near normal. I hope they stay there. Just keep checking so you can catch any problems early.

 

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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Celia,

I asked myself the same question for months: how bad do I have to get before I'm prescribed oxygen? I didn't necessarily want oxygen. I was just curious. A month or so ago I went to an appt with my pulmonologist/PH doctor and I was prescribed oxygen based on my oxygen saturation levels - like Janey. I was 86. I'm supposed to use it with exercise & sleep but I use it all the time. Anything below 90 is not so good. I think for a long time I was 89/90 and felt very SOB. The oxygen company sent out their own people and my sat level was 84. Hum. Not very good.

 

I would think shortness of breath will come and go based on your activities throughout the day, how much rest your getting, stress levels, etc. Mine still fluctuates. Sometimes I feel so good I take off my oxygen - only if I'm sitting watching tv. I hope you stay well.

 

peanut


You can deprive the body but the soul needs chocolate

my HMO makes me wear a helmet...

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Thanks everyone for replying.

 

Janey, my rheumatologist hasn't referrred my onto a pulmonologist as yet, I have had a Chest x-ray that was completely normal. A few months ago I had a Ct Chest done and it showed a 4mm nodule in the lung, I shall ask for another Ct to see if anything has progressed. I am due to see my rheumatologist on Monday.

I think that if all of the tests are normal or nearly normal, I don't think that my rheumatologist will see any reason to refer me on to see a Pulmonologist, regardless of what symptoms I am showing.....very frustrating!!!.

 

 

Lisa, My rheumatologist basically says that if my tests are coming back within the normal range there is nothing much that he can do. It is so frustrating for me as when I see my doctors I am displaying no symptoms, but when I get home or the next day they are all back!

 

Take care

Celia

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Celia,

When you see your rheumatologist on Monday, asked for an O2 saturation reading (out of curiosity). My rheumatologist has an oximeter in his office so he can take O2 readings; hopefully your's does as well.

 

A couple of things on getting a good O2 sat reading:

1. Make sure your hands are really warm. If you have any level of a raynaud's attack going on, you might not be able to get a good reading or any reading at all. My doctor sometimes has to use an ear sensor, but I doubt if the rheumatologist's office will have one of those.

2. Get a reading sitting down, then walk down the hallway and see if your O2 drops at all. If it doesn't - that's great! If it does (especially, as Peanut said) below 90, then ask for a referral to a pulmonologist.

 

Please let us know how your appointment goes on Monday.

 

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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