Posted 6/14/2014 3:22 AM (GMT 0)
I totally feel like Bill Murray from that movie. Every few weeks, back to the hospital. Get discharged for a bit, then the hospital again, and again, and again...Anybody here from VA? I can totally rank the hospitals in the state.
It seems like I can't make it two months before ending back in the hospital. This last time was because I fainted a few times over a few days, and was talking crazy. Ex: I was talking to the nurse and in the middle of the conversation I told her she could take her daughter to Kroger and donate blood to the Red Cross. I've also been falling asleep without any warning-mid conversation, or while eating/drinking. Many times I'll awake hours later with a drink soaking wet in my lap. Random...
Spent a week at our local hospital and then it was decided to transfer down to Duke. I don't know how many of you guys have been in an ambulance, but they are extremely uncomfortable. A 3hr ride in one is anything BUT comfortable.
Right now, my "Cast of Thousands", is not sure what is going on. Tumors, stroke, blood clot have been ruled out. The thought now is that maybe my new infusion med is interacting with my other long term meds. I got the 2 loading doses and I'm not due another dose for another infusion for a few more weeks. Bunch of ideas being batted around. My pulmonologist wants a sleep study done which is scheduled for the 16th. If I'm not getting enough REM sleep, that would explain the extreme fatigue. Also, another round of PFTs to see if it's an O2 issue. My diffusion rate has been dropping each test. The pulmonologist down at Duke finally confirmed the diagnosis of Intersticial Lung Disease. In my case they also call it RA Lung. Right now the doses of some of my meds have been decreased until there is a better plan.
While inpatient here, my pain management dr came by to visit and see how things were going. He switched some meds up since my body goes into shutdown mode while inpatient. Couldn't even put on shoes after a couple of days they were so swollen. My eye dr has privileges at the hospital and he came by. I texted him about the eyes being super painful. Uveitis yet again! UGH.
Yesterday I had my pain management appointment. Didn't change any meds cause he wants to see what some of the testing might show. I go back in 2 weeks and he'll do a trigeminal nerve block on each side. Hoping that works. When I came to the appointment 2 of the nurses came and gave me hugs. Then they handed me a card that my pain dr, his PA, and his nurses had signed. It was a get well card and it was so sweet of them. They were going to mail it but then saw my name on the schedule. I've been going to this Dr for 10yrs-which is kinda sad. I joke that it's like the tv show Cheers when Norm would walk in and everyone would say NORM!
Yesterday was my son's last day of school. On Sunday he leaves to go to a camp for a week. I'll miss him, but he'll have a blast. This will be his 3 time and he talks about it all year. I worked at a camp for 5yrs during college and right after. I still remain close to many of the other counselors. Such great friendships. I love that Nathan seems to find camp as special as I do. After a few days he will then go to Virginia Tech for a soccer camp for 4 nights. He's so excited to get an ID and a dorm room key. Also, VT's dining hall was ranked #1 in the country. He's excited to see what desserts they have :) I love that he has the self confidence to attend a camp where he will not know anyone at the age of 10.
So-some crazy med stuff going on. Please cross everything that I can go 2 months and not be inpatient.