Getting nervous- need support

[Lost163]

I have an appt with u penn rheumatologist on Weds to see if she can figure out why my pulse oxygen is dropping with exercise. I have had two cat scans, PFT, echocardiogram all of which have been negative. My labs are about the same. I'm so worried that she will say that she can't figure it out. I'm tired of feeling this way. If it was just the fatigue I would just push through but the shortness of breath and drop in oxygen level is a huge problem. 

[bloodless]

I had a problem with that before. They did all the fancy testing  to check for interstitial lung disease, including going up through my groin vein to get pressure. It turned out to be pluerisy. (inflammation of the lung lining) I was put on 24 hour oxygen for a while. Totally sucks by the way! But, a course of steroids and getting my meds right cleared it up. It's important to take care of it. Don't be scared. You may be able to fix it quickly.

[Lost163]

I'm currently on oxygen for exercise, cleaning and walking. I don't want to use it so I'm really limited in what I can do. I'm just afraid that rheumy will say that she had no answers.

[Thea]

I have no advice, but wanted to send you a hug of support. I hope you get answers.

[Pisces24]

You might get one of those "lung capacity" tests. They have you blow in a device and it measures your input and output.  I've had those and know mine is lower than normal but not where they are concerned yet. That might give you/them some answers.  I am assuming you had a blood oxygen test also?  My dad had those and he had emphysema.

Good Luck!

[anita]

Pulmonary hypertension is not always detectable by echo (because you're laying and quiet during the test).  A cardiologist should be seen for cardiac related causes of your O2 levels and SOB when walking.

I hope you get some answers because this is certainly not normal.

[Lost163]

Thanks for your replies. I appreciate the support.  I'm trying to stay positive. I want to be able to exercise again! It is the only thing that helps the fatigue.