Living Well with a Bad Diagnosis - Lung Disease

Tuesday, July 4, 2017


I think my breathing is going downhill. Whenever mom and I were walking yesterday, I coughed. In my case, it is a sign that my saturation level is low and that I need supplemental oxygen. Checking my meter when I got home, it was lower than my usual numbers and I probably used my inhaler about six times yesterday. That is an issue as it kicks up the pressure levels of my glaucoma but I really needed to stop the coughing and the wheezing.

Dr. K. will be checking her email tomorrow and will see mine regarding the inability of scheduling the test for acid reflux. My lungs are really unhappy. When she replies to my email, I will tell her that my lungs are continuing on their downward path. I have a feeling I might be seeing her or the ER. 

My blogging is very honest. Sometimes, I think it may be a bit too honest, which is why I like that none of my family or friends know about it. During a conversation, I recently referred to this blog and all the wonderful connection I have made through it. We have travelled to meet several people who reached out to me and they have become lifelong friends. They said that the information they got from this blog saved lives. That is very satisfying for me.

So, after referring to the blog, this person asked to read it with a promise to not bust me as the anonymous source. I asked that she start from the beginning as it tells a story. Somehow, I get a bit nervous whenever this happens so last night, I started at the beginning and read through the few couple years. It is amazing how much I had forgotten and I am so very grateful that I have it all written down for my family after I am gone. There is a lot of family history but also information about this horrible disease that has a genetic component. Sadly, it is bound to show up again in future generations.

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