Living Well with a Bad Diagnosis - Lung Disease

Wednesday, October 26, 2016

Get A Second Opinion

Thanks to Coldcalm, I am feeling so much better this morning. No coughing. No blowing my nose. Still tired and can't eat much at breakfast, which always happens when my lungs are not happy. Since we have Winnie and her family coming for Halloween on Monday and two storms are expected before then, I am going to try to just cut the grass this morning. No trimming. No extra anything. I may even get out to Safeway later in the day.

After a couple of hours yesterday morning, the sheets were washed and ironed as well as a pile that also needed that steamy iron. I read. Rested. Ate very little lunch. Michael suddenly appeared and took me out to the German bakery in town for a cookie. It felt good to get out and into the world.

The Irish Fiddling rehearsal went well last night. We are booked to play a tiny bar on Friday night just north of us. People will be talking and having fun so I hope we can be heard. Microphones will be involved for the other instruments but no need for my bass. It carries through any crowd!

After having another phone conversation with someone who really had not been properly diagnosed, please, please get a second opinion on your diagnosis. I have found the research-driven university hospitals and clinics are the most up-to-date regarding the latest treatment of our diseases. Yes, they are often not close to our homes or like our local doctor's offices but it is worth knowing which ILD has invaded our bodies. Some can be treated with prednisone while others can be treated with one of the new anti-fibrotic drugs. There are new studies to see if these drugs would also help those of us who have another ILD other than IPF. Ask to be a part of this study that is opening up in January. If you participate, you will be giving the drug for free for the rest of your life. Current price - $8,000/month. Hopefully, the insurance companies will begin to follow Kaiser and offer these new drugs with an affordable co-payment. Remember, you are in charge of managing and learning everything you can about your disease. Know your PFT numbers (FVC and DLCO adjusted), eat well and exercise. That is the secret for a better quality of life. Exercise. Check out your local pulmonary rehab program in a local hospital. The first 8-weeks are paid for by insurance and Medicare. Just do it.

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