Ron

Interstitial lung disease and Scleroderma

26 posts in this topic

Hi Ron,

 

Those tests definitely need interpretation, don't they? It sounds to me, with my dire lack of medical training, like pretty standard findings with scleroderma lung involvement.

 

By normal sats, do you mean entirely normal normal (at rest), or just 88 or above? (The cut off for oxygen supplementation.)


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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Hi Ron,

 

Thanks for the update on your PFT's.

 

I hope that it's not too long before you're able to see your lung specialist and that he will be able to explain your lung function tests and advise you on the best treatment.


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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Thanks for the reply Shelley and Jo,

 

My O2 was 92, they could not get a good reading as my finger circulation was poor. I have always had problems with those devices on my fingers, never can get an accurate number.

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Hi Ron,

 

I've had pulse oximeters (and even wrist blood pressure devices) not work during an attack of Raynauds. It can definitely be a problem getting accurate readings with circulation issues.

 

It's important to make sure you, and your hands, are warm and not attempt any readings during a Raynauds attack. You can also clip the oximeter on to an ear.

 

That said, I also get Raynauds in my ear lobes, so ear readings might also not be entirely reliable for everyone all of the time.

 

I had Raynauds after a day surgery a few years ago, which is nearly unavoidable with the combination of medications and the walk-in freezer settings in many recovery rooms. They were reluctant to release me with zero sats, but I pointed out I obviously had fine sats and that Raynauds was already documented, and thus normal for me.

 

So beware, readings of zero can create some awkward situations with you needing to explain that you are still really alive.

 

92 is still acceptable but it's not bouncing off the walls terrific, like higher readings, including the elusive but still idealized 100%.

 

It will be good to see what your evaluation shows.

 

Meanwhile, it's time to follow the classic advice for single people with scleroderma: Stay warm, and keep circulating!


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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Thanks Shelley, the ideal method for O2 is a needle in the artery in the wrist and draw blood.   Then they measure the O2 in the lab.  I have had this done 2 times in the hospital, it really hurts, but is very accurate.

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Hi Ron,

 

Yes, that's absolutely a very official way to get an accurate oxygen saturation reading, but three of our members, including me, just virtually fainted at the very thought of taking our sats that way all the time. :wink:

 

Just out of curiosity, do you recall if your wrist draws showed a substantially different reading from the (finger) oximeter(s)?


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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Shelley, First O2 test from an artery was the day I was admitted into the hosptial for my 30 day stay back in 1990, thats when I had 40 pounds of water in me from my kidneys not working properly and I had a real hard time breathing with all that water. The second one was a PFT in the hospital, they only used artieral blood for the O2 readings for PFT back then. The most painful part is when you are laying down, you have to apply direct pressure to the injection site and hold your arm up, that was a pounding pain, worse than the needle. You had to apply hard pressure for 10 minutes.

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Hello Ron

 

Ain't it confusing! I remember trying to figure out the intricacies of my ECHO results back when they were bad, you needed a degree!

 

Anyways, you will know soon!

 

Take care.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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I've been having breathing issues, it's gotten hard for me to breathe, but just got an x-ray, they said no problems. My blood pressure has been going crazy, low and then super high(a few days ago it was 220/180.) At times my heart beat is irregular. Still waiting to see a rheumatologist though. I just keep wondering how good or bad it is. Lol. I know there is some kind of lung involvement though. It's either scleroderma, Raynaud's or lupus related. I will be looking this up and hoping I don't have it.

Hope you get better really soon and forever.

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Hi Jennuwhine,

 

Is it possible for you to see your doctor before your rheumatologist's appointment? It's rather a concern that your blood pressure goes up so high (220/180) and is so erratic which possibly should have further investigation.

 

Kind regards,


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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Hi Jennuwhine,

 

As it happens, you don't need to have lung problems in order to have shortness of breath. Many things can cause it, including heart problems, pulmonary hypertension, being overweight or out of shape, asthma, hyperventilation, and even anxiety.

 

Noting the exact circumstances each time it occurs can help your doctor identify the cause (s) for you. Please let us know how things are going for you, and what you find out in regard to this.


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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