I had my clinic appointment again yesterday and I left feeling really frustrated and annoyed. I felt like nothing was accomplished. My PICC line was pulled and I got some information about a study I am going to do, but other than that, it was almost pointless.
There were a few good points and I should explain those first before I begin my tirade on everything else. My lung function is back up almost to baseline. I blew 1.31L, 45%. My highest is still only 1.45L so I am not too far behind. That was also a fluke in my opinion, as most of my numbers range from 1.30L - 1.35L. So technically I am baseline. Because of my numbers being back to normal, they pulled my PICC. I am looking forward to my first PICC free shower in a little while! I am also no longer culturing Steno Malt. My last one was free of that, though I did culture Class B strep. And the one before that I cultured Aspergillus (spelling??). Both along with my normal PA.
Now for all the annoying, why I am so frustrated things.
First was the results of my sleep study. I didn't de-sat below 89%. This means that my insurance will most likely refuse to pay for my O2 concentrator. She said that I could probably use 1L at night and it wouldn't hurt me, but the chances of insurance allowing me to keep it are slim. Even though I qualify for O2 with exercise, needing 2L. She also said that when I am feeling run down and sick I will definitely need O2 with sleep. Great, thanks, this is why I didn't want to do the study while on IVs and HEALTHY! Now I will have to fight my O2 company and insurance to have them pay for the concentrator. Just another headache that could have been avoided. I have been using O2 for over 2 years now and I sleep like shit when I don't use it. My blood gasses are all normal so I don't see an issue of using it.
My second cause for annoyance is that I am STILL running night time fevers. Now I know a little higher temperature at night can be normal. But I don't see how 99.6 and 99.8 are normal. IT'S NOT NORMAL FOR ME! I run low, always have. Even at night I would be around 97-98 tops. So to jump 2 degrees just isn't right. Maybe I am over reacting I don't know, but I want an answer and she didn't seem to have one. Her response - OK.
My third and final issue is this wretched pain I am having across my chest. Sometimes it is centered directly on my sternum and shoots outward when I inhale. Other times it will go deep into my chest until it feels like it is going to shoot out my back. The pain was so bad on Monday night I was almost in tears when I went to bed. Motrin is helping it thankfully. When I asked about it she asked if I was doing any push-ups or heavy lifting. I said definitely not with a PICC in. I mentioned being out in the cold and walking a little bit and she replied, "hmmm maybe". Gee thanks.
I left totally annoyed, totally frustrated and wanting nothing more than to see Dr. H. again. He knows me, he knows what is normal for me, he knows that this all would warrant some type of response other than "OK". For this reason I am considering setting up an appointment while I am in Philly between Christmas and New Year's. I'll have to pay out of pocket for it, but I don't mind. I want to see him and get his opinion.
I know I need to be more assertive and demand answers but that has never been me. I hate rocking the boat. However, if I don't start I might not like what I have to deal with.