I've spent the last few days wandering the halls of Duke. Good thing it's such a pretty campus:)
Spent the majority of my time with the autoimmune docs. With the addition of the newly diagnosed clotting disorder my Drs have added, "systemic inflammatory response syndrome due to non-infectious process with acute organ dysfunction". Or, as my rheumy said: IDK?
Did start two new meds which will hopefully be my "magic meds". I spent 6hrs getting 2 IV meds which will both affect my immune system. The stomach will hopefully improve so I can get off the TPN. The TPN is a solution for now, but not a long term solution. It is extremely harsh on the liver. However, I'm not able to absorb nutrients due to inflammation. Prior to the TPN I was extremely anemic and spent time in the hospital receiving iron infusions. My iron level was 12 and it should be 50. I had several other areas of concern. Now the Drs are also concerned about
the fact that I continue to lose weight. One positive is that I have a lot to lose due to Cushing's. 11yrs of steroids is not a diet I would recommend. The TPN provides me 1500 calories a day, which is an average amount of calories. However, I've lost 30+lbs since Aug. Hopefully these meds will calm down inflammation and I can return to a fairly normal diet and maintain a healthy weight. Still, I can't help but be a little happy with the weight loss, but I need it to be done in a healthy way.
So, now it's a wait and see game. These meds usually show improvement after about
4 months. Nothing can be a quick fix.
We did talk about
pain meds and pain control. As soon as can be scheduled, I'm going to have a series of cortisone injections down my sternum. I'm splinting when I breathe so these injections will hopefully allow me to expand my ribcage. There is concern as to what I'm actually absorbing when I take pills. How long are they sitting in my stomach? What if I end up with multiple pills finally getting absorbed at one time? The Fentanyl patch will stay at 100mcg for now, but there might be a switch from oral pills to IV meds. My current pain dr doesn't prescribe IV meds very often, but the team at Duke does. I would like to stay with the oral meds, but I'll let my local pain dr talk to the others and go with what they recommend. The fewer syringes that attach to my lines, the better. I have a HUGE infection risk since I've had 2 bouts of fungal sepsis. With the TPN my port is always accessed, and I currently have a double lumen picc as well. I understand the concern with the pills, but I want to be off the TPN as soon as possible and then my port won't always be accessed. Whatever-I have faith in them and I know they have my best interest at heart.
SO-chilling in a hotel for the night. I have a KILLER headache, but I often have one when I get long med infusions. I totally forgot to ask my Dr to run toradol prior, but I'll have it next time-2 weeks from now.
The #1 plan is to make it 8 weeks without an admission. I'm totally on board with this. #2 is to try and be patient and see if these meds will work. #3 is to hope for some kind of miracle-that the meds will work, and that most of my current damage is reversible. Lung function, kidney function, and of course the stomach, have taken a big hit. The latest CT is also showing breakdown in the bone around the TMJ implants. It's like these illness are some big machine that keeps going and going. We can't find the plug to unplug or an off switch.
Since I can't physically cross my fingers, maybe some of you can cross them for me? xxxxxxx
I appreciate all the support and I would love to thank you in person. Since I can't, I hope you know how much your kind words and encouragement help each day. There are days when I wonder how I'm going to continue, and then I read your posts and I'm inspired by your strength and realize that we all are warriors :)
Post Edited (rocckyd) : 12/21/2014 10:10:45 PM (GMT-7)