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Lung/breathing Question


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#1 Patty

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Posted 08 June 2007 - 02:31 AM

I have a breathing/lung question but not real sure how to ask it. When I was at the ER the last time my sats were pretty normal levels except for when I was moving (and of course no one was around to see it ), but I know that can't be correct because I can't even say one sentence anymore without needing to breathe. I sing to the baby every night the same song and I notice that I have to take more breaths.

How do I find out how my lungs really are before I have my next PFT and is this something I need to bother calling my DR about or can it wait the couple weeks till I go in? The other thing is they do the sats while I am sitting... well, if only my life was sitting. I am running after a busy 2 year old most of the time. I don't think they should base the sats on what they see because its just not a correct reading if you ask me.

Hugs,
Patty
Hugs,
Patty

If Life hands you lemons, make lemonade.

Hashimoto's thyroiditis, Limited scleroderma, Dermatomyositis. Diastolic Dysfunction, dysphagia, Fibro, restless leg. Lupus is a maybe.

#2 Clementine

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Posted 08 June 2007 - 07:53 AM

Patty,
I am sorry you are having lung problems. My Dr. said that around 80% of people with Systemic Sclerosis have some lung damage and may not know it. Obviously, not enough for everyone to have symptoms or to be treated.

It sounds like you need to do a 6 minute walk test so you can see what your saturation is during activity. I am the same way...I am fine while at rest. I am even fine during the 6 minute walk, but if I walk on incline or up stairs, I drop quickly. I am going to suggest I walk on a treadmill next time, on a slight incline for a better judgement of how my lungs are while exercising. The walk test is just too lame.

Have you had a CT scan too? I have PFTs, CT scan, and 6 minute walk every 3 months. I have test more often than most, because I have very severe ILD and am on oxygen 24/7.

Shortness of breath could also mean exercise induced pulmonary hypertension and you can have this without ILD. Everyone should have a baseline echo, if you have not had that done you probably should talk to your Dr about it.

I have noticed that if I've just eaten, I have more difficulty breathing and have even become short of breath while consuming. I was told this could be a weakened diaphragm.

I hope I have helped a little.
Take it easy,
Sombrero Head

#3 susie54

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Posted 08 June 2007 - 08:07 AM

Patty,

If you are that concerned, I would not hesitate to call your doctor. I also might recommend purchasing an oximeter (finger one.) I got a good one on ebay for 60.00. They can be purchased for 250 new. PM me if you want the manufacturer's name I have lung problems with a dropped DLCO but not bad.

I kept having breathing problems and weak spells and I wanted to see if it was my heart or lungs. So I purchased the oximeter and a good blood pressure machine (one that detects irregular heartbeat. It gave me peace of mind because I would be short of breath and it would read on the oximeter 98 or 99% so I knew I was OK. I did have irregular heartbeats show up for awhile. So it did help me. I hope you can find some relief somehow. Susie54

#4 janey

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Posted 08 June 2007 - 08:38 AM

Patty,
I can't really add anything to what Jen and Susie have said. There's some great advice there. I too purchased an oximeter and use it a lot. My O2 sat always drops when I start moving around and the longer I move, the more it drops. I guess that's why I'm on oxygen. :blink:

The High Resolution CT is a great way to identify pulmonary fibrosis. For me it showed up in the two lower lobes. My doctors can also here a crackling sound down there as well. However, both have said that the crackling has been getting less and less over the past few months. So the HRCT, 6 minutes walk, oximeter readings, ECHO and pfts are all good for identifying lung problems.

I hope you find the cause of your shortness of breathe. You really need to see a doctor about it as soon as you can. When is your next pft?

Big Hugs,
Janey Willis
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#5 Patty

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Posted 10 June 2007 - 04:03 AM

HI everyone! Thanks so much for your replies.

I go to my Dr the 19th for my monthly checkup. I swear I am in Farmington more then home now that's shes got me on monthly checkups. I guess that's because this disease is at warp speed now. So much going on so its so hard to tell whats what. My bowels have been off for a few days now, I am very lightheaded almost all day long now and I can't sleep. I feel like if one more thing happens I won't be able to take it. Thank Goodness I have my daughter here helping out because some days all I can do is rest and keep my feet up.

I am going to put a call in to my general practitioner Monday AM to see if he wants to see me or if its ok to just wait untill I go to UCONN the 19th. I don't feel like I am in any danger breathing wise just know its not normal either.

AS for the Oximeter I will look into that Monday as well. Who knows maybe my Dr may even give me a rx for it so I won't have to buy it. One can only try I guess lol. Toms friends with the owner of the medical supply store so maybe he will let us rent it for a week or so to get some different readings b4 I go to the Dr's.

I am going the 15th for a Barium swallow test and then I have to see a speach something or other so maybe that person will know whats going on with my breathing also.

Thanks Jenn, Susie, and Janey for all the great advise. I really don't think I would be dealing with this disease as well as I am without all you wonderful people!!
Hugs to you all xoxo

Patty
Hugs,
Patty

If Life hands you lemons, make lemonade.

Hashimoto's thyroiditis, Limited scleroderma, Dermatomyositis. Diastolic Dysfunction, dysphagia, Fibro, restless leg. Lupus is a maybe.