Still trapped...Back in town Mon., admitted Mon. | Arthritis Information

 

Yet another night at the most exclusive party on the planet! That would be hospital o'fun. Be jealous kids...

So, dr. came and spent about 30min with me this evening. Like him-he's internal medicine so he's kinda looking at all angles. The pneumonia itself sounds better-so that is a plus. He is much more concerned with the high blood pressures(in the 150's)and the other lung issues. He feels that if he just sends me home, I'll be right back. Nathan came by to show off his football uniform-first practice with pads this evening. I'm glad I saw him, but sad as well. I have missed everything this year-Thanksgiving, Christmas, Easter...I know this practice isn't a big deal, but it is just something else to miss. Anyway...rant over-I got really out of breath walking with Nathan back down the hall to the elevator. So, he feels the pneumonia itself might be better-but the underlying cause will probably cause me to flair up again. So, for now-high doeses of steriods and antibiotics. PT has come the last two days to do ultrasound. Jaw looks pretty good. I ate a smushy grilled cheese for dinner-know you are impressed! Dr. wishes that my RD was affiliated with the hospital. He said he might still call him. But, my pain dr. is with this hospital and he has my RD notes and his own. So, the dr said he will probably call them both and hopefully the pain dr. can stop by.

Just really frustrated. Tomorrow will be the one week mark. The jaw part is a success...now just this other junk has got to stop.

I'm the only person under 60 on the floor. The nurses call my rooms the pediatric room. Got my laptop, Nook, Iphone, DS.... fun fun all day and night.....
Holy Toledo Rocky, what next?  Prayers & warming thoughts will continue until you go home and can eat an ear of corn!   LOL... I feel your pain (literally).... I am always the youngest person at the RA Docs Office... I always joke with the nurses and receptionists that the only reason they remember me is because I am the only one ever in the office under 65. I am sure others must visit but in nearly 3 years I havent seen ANYONE under 30. Got pneumonia for the first time this year thanks to my humira.... its either feast or famine.... either RA pain or less arthritis symptoms and infections out the wazoo.... HANG IN THERE!!! Several of us here are like you!   So go home and get some sleep. When you wake up call your doctor and do what he says.

Not mad at all.  The main dr. I saw was a hospitalist.  Kinda like a boring Dr. House.  They follow the ER admits and cordinate all the testing.  That way, all the results go to one dr and the tests can be timed so that a patient isn't at the hospital cause tests were done out of order or missing.  Plus, he looks at all the lab work and the other consults that he orders to decided the next best corse of action.  So, when he rounds-it is after 4.  I was last cause he wanted to spend the most time.  He was in my room for over 30min.  Brought his laptop and pulled up the CT's cause he knew I would want to see.  He said he is frustrated cause he likes to fix and discharge.  Yes-I'm off oxygen and the pneumonia is better.  But he stumbled across this bigger problem.

My RD tomorrow will decide the next course.  I can get into Duke quickly since I have a relationship there.  Worse comes to worse-enter through the ER.  Hopefully, if they decide to do the biopsy, I can have it done here and the results sent down to Duke if necessary.  I am very limited in the pft that I can do due to the jaw surgery.  Plus, the pneumonia will affect the results as well.  They would overshadow any RA affects at this point. 

Talked to the jaw surgeon today.  I can't even tell you how good it feels.  Ate a skinny cheeseburger for dinner.  Can you believe that?!?!?  He is obviously concerned about the lungs. I don't blame him at all for these complications.  Pneumonia is a side effect of any surgery-especially a 9hr one.  The ER dr. said that the pneumonia is probably a blessing.  I wasn't due for another CT scan till May.  Plus, the past two have been without contrast.  In the ER, the use contrast cause they are looking for blood clots.  So-got myself an earlier CT with better screening equipment.  If it wasn't for the RA issues-I probably could have gone home with antibiotics.  I would do the surgery again tomorrow if you asked me.  My jaw has not felt this good in years!  So-there's the good side of my post :)

I have never heard of a Hospitalist. I love House! So cool! It's 4:45 am...

What am I supposed to do? I am so mad. I follow all my drs orders, go to my appts, try to take things seriously-but still manage to keep going pretty optomistic. Why? Lung involvment to the degree that he thinks it is is sooo not good. I'm just so incredibly pissed off. I don't have time for this. I have a little boy who means the world to me and I'm his world. Now more appts...much longer drives. Duke sure-but add Wake Forest to the mix? There is not time for this. I was upset about missing his first ever practice with pads. I know-big deal. But it is.
I know-wait until tomorrow(well today at this point) and get that appt. done. I'm gonna be a mess which is going to be embarassing. Usually we cry(dr. too) cause were laughing so hard. Now I'm gonna look like some redfaced fool whose mind is going a mile a minute Rocckyd-I am always in awe of your perseverance although when you don't have a choice it's all you can do. You have been in my prayers since I've come to know you and always will be. So sorry you cannot catch a break and it's so hard to figure out why not. Hope you get a break through soon.

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wanttobeRAfree2010-08-13 04:17:44  Your doctors are on your side and that counts for alot! You got alot of the work done already with the CT scan and the contrast. I'm so sorry to read you are having complications Rebecca.  Sending healing thoughts your way in the hope you can enjoy your new chompers.  And best of all wishes for your lungs.  NO FAIR!

Yes...at home for now.  Rheumy feels that my vitals are good enough that I just need to rest.  He thinks that any testing done at this point will add more stress than needed.  I see the lung dr. on Thursday.  So, his prescription between now and then is to go home, turn off the phone, and sleep.  Best orders ever!  Any complications-head to the ER.  Even though I am too take it easy-I still have a ton of appts next week.  Possibly head to Richmond on Monday for surgery recheck, pain dr. on Tuesday, lung dr. on Thursday, eye dr. on Friday.  Oh...and PT 3x next week as well.  I go back to the rheumy on the 1st(know you are bad when they want you back in 2 weeks!), and down to Duke on the 2nd.

Picked up my CT scanned to a disk, ER reports, and discharge summary.  Kinda sobering to see that you were listed in guarded conditon. 

So-there it is. Gonna put on some comfy clothes and curl up for a bit.

zzzzzzzzzzzzz

Hey - I'm the President of the Red Faced Fools with Mind Gone club, is that the same??? 

Welcome home and sweet zzzzzzzzzzzzzzzzzzzzzzzzzzz.........

Hugs and prayers for you Rebecca.  Becca, You know what Rebecca? I know as a mom this has to be tough feeling like you're missing out on things like practices etc., but I bet you anything because of all the ups and downs you've had to endure and your son seeing all of this especially how strong of a spirit his mom has , your son will grow up to be a loving, strong, kind man and have empathy and compassion towards others because of you. You hang in there, we are all rooting for you! Try to think down the road how much better you will be a month from now, or even by this Thanksgiving, you WILL get through this!Saw the surgeon on Monday. At least one thing is going my way. He's happy with the jaw. I measured at 23mm for an opening. 30mm is considered functional, so that is our goal for my next appt. in two weeks. First off, he was just happy to see me. We've been texting back and forth so he has been up to date on what's been going on. He hates it when his patients are out of are since he can't just drop by and see how they are doing. He had to laugh out how little swelling there was. Nothing like 40mg of pred. I guess that is one good thing. He is worried about the healing of the sutures with the steriods, but he says they look pretty good. So...PT for two more weeks and then back to him. Pt wlil be pretty rough he said. Scar tissue forming is the biggest issue at this point. And, I lay down scar tissue really fast. But, for now he is happy with the way it is moving, the way the teeth meet, and just the overall surgery. Yay!

Saw my pain management dr. He is the one who handling the return to work issue. I told him that I wanted to return the 2nd week in Sept. He said he wasn't entirely sure but he would let me set my goal. So, he signed the papers for my return date and I see him after my second day back-in about a month.

Have my lung appt. today. Pain dr. wouldn't really comment on the CT scans. He was consulted while I was in the hospital so he had the report. He just said to go and see what she has to say.
Back home...

Odd appointment. Basically, she doesn't know what is going on-and she said so. Hmmmm...
She wants to repeat PFT's but I can't open wide enough due to the jaw surgery to complete them. The last PFT's I had showed my diffusion was off. This is the exchange of Oxygen and Carbon Dioxide in your lungs. This, it seems, can be a sign of things to come. And then I had the "ground glass" CT last year and now this one with "infilitrates". She let me look at them-kinda cool. So, she wants to present everything to her colleagues. See what they have to say. She is concerned, and wants to figure this out. I'm all for that!
She did prescribe and inhaler for acute symptoms. I go back in 8 weeks. Hopefully at that point, I'll be able to complete the breathing tests that she needs. She also wants to repeat the CT scans at that time. I am to call if things get worse. And, if I need to go to the ER, she would like me to go to the one that she has privilages at. She feels that as long as I am on the pred, I should be OK for a bit. She gave me a copy of the CT scans to take with me down to Duke on the 2nd.
So...something not good is going on, we just don't know what. Love it....
OH...and still running a fever. I'm going to use the rest of this rainy day to do nothing. Wait...that's what I have been doing for the past 2 weeks
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