Posted 5/17/2014 4:04 AM (GMT 0)
As I mentioned in an earlier thread (back to the hospital), I had an appointment down at Duke earlier this week. He had all the test results from my hospital admission and we spent most of the appointment talking. He could see that I have declined over these last few months. He's very concerned about the lung issues, especially since my O2 levels have been lower than usual. Normally I can maintain in the upper 90s. This past admission I dipped down into the upper 80s. We also talked about the fact that I sweat like CRAZY doing the easiest tasks. I go through multiple shirts a day. I look like I just got out of the shower-soaked in sweat. I also fall asleep with very little warning. I often find myself waking up at 4am on the couch with the cup I was drinking out of spilled in my lap. In the hospital I freaked out when I woke up to a red bed. Obviously thought it was blood, but then realized it smelled really good-it was jello that I was eating.
So, for now no med changed. I drive down to Duke again Monday for another med infusion. This will be my second dose. If there is no improvement after 3 doses, he will stop it. I'm also going to have a sleep study. Hopefully this will give us answers as to why I'm so tired. It will also monitor my O2 levels during the night.
I emailed my Dr today because I realized I had an appointment scheduled in early June from a previous appointment. I also asked him about the NIH and I might consider going that route. He's been pushing for me to allow him to send my records to them and hope that they will accept my case. Something else autoimmune is happening, and to date, nobody can figure it out. I've been in and out of the hospital frequently these last two years. Ages ago my Drs thought there were additional autoimmune illnesses, but I was fairly stable. Obviously this is no longer the case.
Anyway-emailed and asked if he wanted me to keep the June appointment. Here's his response:
I just did a talk at the NIH this morning (and thought of you of course). I may end of running your case by them to get their opinion.
There was more to the message, but it gives me a bit of hope that I'm not just a random patient.
OK-off to bed. Little man has a soccer game bright and early in the am. I'm moving slow so I have to get up even earlier-joy.