Back to the Hospital

Since Aug, it seems I can't make it 6 weeks without an admission.

This time I started to feel awful last week. Kept pushing through the pain, cause that is what we do. My little man had 2 soccer games over the weekend, which they won to become league champs :) Monday I went to PT and I was super sweaty and pulse was in the 150s. I often run very tachy, but I just felt odd. PT convinced me to go to the ER. Turns out I had fluid in the rt lung. I had a Bronchoscopy done yesterday where the fluid was removed and the dr took biopsies and cultures. Still waiting on an results.

Complicating things is the fact that after the jaw replacement, I don't have the strength to cough up what is in my lungs. The bronch helped suction out quite a bit, but I'm still coughing. Since my mouth only opens a few mm, it is very very painful. Luckily, the admitting hospitalist got pain management on board right away. Also being followed by rheumatology and pulmonology.

Please please please cross your fingers (or eyes if you can't do the fingers) and hope that this is a bacterial infection. The cultures would allow the drs to find he correct antibiotic. Biggest fear, as usual, is disease progression. I'm just exhausted.

Thankfully pain is being pretty well controlled and the pain dr comes by daily. The ER on Mon was nuts. I got there around 4pm. There were people there who had been waiting since the morning. They triage you right away. With the vitals and my history, I was taken right back. Man did I get the evil eye from lots of people. The Dr told me there were 100 people in rooms and 60+ in the waiting room. Wow-yay for bad vitals :)

Hopefully I'll get some answers tomorrow so I can get out of here. My little guy came to visit, and he just wants us to be home. Love my boy.

Fingers crossed & Prayers going up.

I'm just going to keep positive and say that your antibiotics are going to get you home for Mother's day!!
Positive thoughts only!

Most probably all those people that had been waiting around all day were no emergency cases and were using the ER as their primary medical care. Last time I was in the ER we had 9 people in there doing that, and this was in a small town hospital. All 9 were hot under the collar because there were quite a few, including me that got taken back within 10 minutes. 4 of them were up complaining to the admitting clerk while I was there and she told them that this was an ER and only emergencies would be seen immediately and the rest had to wait and be worked in. The clerk also pointed out that there were walk in clinics in both towns the hospital served and asked them why they were not using them.

Anyway. I hope you get to feeling better really soon.

Agree w/Merrida.. book a room (though I guess you pretty well get one as soon as you show up)

Conrats on the wins soccer mom!!

Prayers sweetie

I hope this is just a short stay. Sending positive thoughts & prayers your way.

Thinking of you honey and hoping for the best news. Hope it's a short stay. (((Hugs)))
Jane xx

Dr. is still waiting for the biopsy results, but nothing has grown from the cultures which would indicate an infection. As strange as it sounds, a bacterial infection would be good because the correct antibiotic would be chosen and hopefully all would return to normal. Instead, the Dr feels that this is the progression of the autoimmune diseases we have been dreading.
Now begins the followups-most important being my Drs down at Duke. I called to try to get appointments moved up and it wasn't an option. Dr called and I have one on Tuesday. I also followup with my own pulmonologist on Thurs.
This is not the medical news that I wanted to hear. I honestly don't understand why this is happening. I follow my drs directions, go to appointments, and still I just can't win.
I was also told that my kidneys are taking a hit. I see my primary care dr on Thurs and between him and my drs at Duke, they can decide if I need to have yet another dr down in Durham or the kidney issue can be treated at home.
Pain-wise I am struggling, but it's always going to be that way. I have a wonderful pain team and my main dr will fit me in on almost any day. He knows I'm in and out of the hospital so much, so he tries to make life a bit easier. Still working with valium, baclofen, ocycodone, and a fentanyl patch to control. My jaw is pretty much locked down at this point due to all the coughing with the lung mess. My PT measured the opening at 10mm. Living of Ensure-yum. Unfortunately, the best side effect of losing weight is erased due to Cushing's.
Oh well.
I'll let you all know what the Duke crew has to say tomorrow. I'm a bit nervous cause I'm sure I'm going to hear things I don't want to hear. I know everything I have is degenerative, I just figured I could at least get thru my 30's. I know I've had most of these diseases since I was a kid, but I never knew how old one could feel at 37.

Rocckyd I pray things get better for you! Your attitude is an inspiration for all of us! Thanks for the update, I have my fingers, toes all crossed for you an I continue to keep you and your son in my prayers! Please never lose hope and faith!

White Beard