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Clementine

Pulmonary Function Tests -vs- Spirometry

4 posts in this topic

Today I had just a regular spirometry. Normally I do a more in depth PFT. Anyone know why my Dr. would order just the spirometry this time? I also had my CT scan and six minute walk Oddly, I did about the same on my walk with 2 liters of oxygen as I did with room air! And, my heart rate never got above 114. I would say I am thrilled, but I know that when I am doing "real" activity, like housework, my heart rate jumps to 145.

 

I complained to my dr last week that I feel suffocated and short of breath and he was concerned of hypertension. I wonder if I am actually mistaking this for panic attacks. I would highly doubt it, as it happens first thing in the morning, all the time, but my tests seem "ok", relatively speaking. Maybe it is all because of my low diffusion rate.

 

Part of me just wants to give up, and pretend I don't care anymore about the way I feel. It has become cumbersome.

 

xo

Tangelo

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Hi Tangelo,

 

When I flare up with breathing, I get that same suffocating feeling. When it doesn't show up on the spirometry or oxygen saturation, I feel doctors don't understand the feeling. I know it is a sick feeling and very hard to breathe and I guess it is just the connective tissue causing inflammation in the lungs or lining causing that feeling. I hope it passes soon. Mine usually goes on for a couple of weeks, more if it is a big flare up. I know it feels horrible and I wish I could give you some relief. Susie54

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Hi Tangelo,

 

I'm sorry you're having such a rough time. You may be interested in our section on Heart Rate, which includes information and charts for heart rates at rest and during exercise. The links explain arrhythmias, including bradycardia (slow heart beat) and tachycardia (fast heart rate).

 

Diagnosis of Systemic Scleroderma Heart: Heart Rates

 

I find it is also helpful to follow the advice about talking during activity. When exercising, we should be able to talk. But if we can also sing with no problem, we may not be exerting enough. Pacing becomes critical with illness and with lung involvement. Most of us tend to try to keep the same pace we used when we were healthier.

 

You could also inquire about pulmonary rehabilitation, if you haven't already taken it. Gene took a several month course of it many years ago. They helped determine his optimum exercise program, the amount of oxygen he needs during exercise, and taught him how to cope successfully with breathlessness, shortness of breath, and asthma attacks. (He does not have scleroderma; he has severe COPD - asthma and emphysema, and is on 5 liters of oxygen during activity.)

 

It's very important to remain calm during an episode of shortness of breath so that it doesn't become complicated by hyperventilation. Which is a lot easier said than done, and impossible for many people with lung involvement to achieve without pulmonary rehab.

 

Thanks to great patient education and strict adherence to his treatment plan (he truly keeps his oxygen on 24 hours a day and takes all his meds on time), Gene is able to work part-time as a restaurant greeter, exercise every day, and do many things that others with a lot milder lung involvement are simply not able to do. I hope you find methods that help you cope better with lung involvement; it is a lot to adjust to!


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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Hey Tangie,

 

Sounds like your tests went well. I would just go with "being thrilled". It's nice to have good news once in awhile. Not sure why he would do spirometry as well...maybe just for checks and balances to see the whole picture.

 

Don't give up, just take one day at at time, one test at a time.

 

Love ya!


Warm and gentle hugs,

 

Pamela

ISN Support Specialist

International Scleroderma Network (ISN)

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