Posted 5/4/2015 4:51 AM (GMT 0)
I've spent the last few days making the rounds. Still dealing with a ton of "Not entirely sure what our next step should be…". UGH.
I had 2 appointments with my pain doc last week. I got a series of cortisone shots down the sternum to help with inflammation. Just being able to take full deep breaths makes a big difference. O2 levels jump up to 95% since I'm not splinting. When awake I make a conscious effort to breathe as deeply as possible, but I splint in my sleep and throughout the day when I'm not thinking about it. A few days later we talked about pain med options. Surgeries are in my future regardless of how aggressively we attack my medical mess. I've worked hard to decrease my med doses to provide room for increases in the future. My body doesn't allow me to hide how I feel. My cardiologist actually has an opinion when it comes to pain management. Pulse and blood pressure are issues that we fight. At appointment my pulse was 153 and bp was high (can't remember). So-instead of decreasing meds, the Fentanyl was increased. I had managed to get it down to 50mcg, but it was bumped up to 75mcg. Not happy-but patches are the best option right now. The gi mess leaves my Drs unsure as to what is actually in my system. Plus-the finding of ulcers down my throat due to meds becoming stuck, is making my Drs rethink all my meds. IV pain meds were brought up, but I'd rather not use those at this time. I will have IV Zofran as an option. IV Phenergren actually works the best, but it is not a good med to use longterm. We are leaving that med to be used when inpatient. Toradol is another one that helps, but is also not a good option longterm.
The plan is to take a totally different approach for the jaw/implant issues. Swelling, scar tissue, and heterotrophic bone growth are constant problems. I will have a 3D CT scan in the next few weeks to make sure all the parts are where they need to be. After a previous scan, Drs were concerned that there might be a screw loose(ha ha-you may laugh). I have 14 total so one loose screw isn't a problem, but Drs want to make sure everything else is there. If so, radiation treatments might bring some sort of relief and slow down ongoing damage. My local Drs are not comfortable writing the orders since they have not encountered this problem. My MCV (Medical College of Va) crew will write the order, but they are 3hrs north from here. A local Dr completed his Fellowship with my surgeon so we are hoping he will oversee treatment here, at home. Otherwise, I'll drive up and spend time with friends or in a hotel, depending on how many treatments.
GI wise, things are still up in the air. Even though I still have weight to spare, my labs are coming back showing malnutrition. I also had to get blood due to low counts. 10+yrs of continuous steroids have caused iatrogenic cushing's and I'm nice and squishy :) I weighed around 235lbs in Aug, and now I'm 175lbs(I'm 5'10"). I LOVE being able to wear clothes that have been shoved away for years, but this is not the way to lose weight. I was sure that I would gain weight, or at least stop losing, after increasing the dose of IV steroids inpatient, but I'm still losing. My local Gi wants Duke's opinion before any interventions. An NJ or NG is not an option due to the ulcers and sores down the entire gi tract, and my body rejected both a g and gj in the past. Nobody wants me back on TPN due to my sepsis issues, but my body just doesn't want to function. TPN is also AWFUL on the liver and my liver function tests have not been the greatest. My body just needs to work. I don't know why it doesn't, and neither does anyone else. UGH-I'm crying just typing all this out. It's not fair.
As far as a mainline med being used to slow down disease activity-I don't have one. I was trying a new one when I ended up inpatient with the throat/swallowing issues. It's now off the table. There is an IV med that I've not used, but I'm allergic to another med that's in the same class. I would have to be inpatient during the infusion to monitor and/or control a reaction. The Duke crew isn't very optimistic that it would be my "magic med". Plus, my body is incredibly and entirely worn out. At my pain appointment my Dr could hear a "rub" when listening to my heart. This is due to inflammation and the tissues rubbing together. Lung scans showed an increase of infiltrates and areas resembling "ground-glass". I see my optho tomorrow for another round of "bandage contacts" to help heal the shredded areas of my corneas. My SED rate was highly elevated which was not a surprise.
Palliative appointment went well and pretty much the way I expected. I know the term and definition varies depending on the medical facility, but it's not hospice. You can also be admitted and discharged multiple times. More emphasis is placed on patient comfort, but my team will still be looking for ways to control disease activity. Everything I have going on is degenerative, and there is no cure. Normally this fact does not phase me, but sometimes just the thought of this process never ending, is soul crushing. The fact that during these last few years my hospital admissions are due to life-threatening complications and not just life-altering is terrifying. I've whined quite a bit these last few months, but things are really really not good. The palliative care clinic gives me access 24/7 to my Dr and nurses for questions or medical problems. I don't have to wait for a pain management appointment if things are going downhill. Blood work can be done at home, and a nurse can come and hopefully prevent an ER visit or an admission. Regular saline or a LR(lactated ringer-has electrolytes) can buy me more time outpatient. I had mentioned above that I didn't want to use IV pain meds at home on a reg. basis, but a nurse can come and provide them if needed. Pain control is another reason for past admissions, so I'm hoping this will help. If I do end up needing an ER visit, a nurse will call ahead so I don't have to try and explain my trash can of medical junk.
Tomorrow I have an MRI in the morning. It was ordered ahead of knee surgery-which I've been waiting YEARS for. I've just never been healthy to have the procedure. The knee is the first of many joints that need work. I know it sounds stupid, but I wanted to cry last week when the Dr said, "No quality of life surgeries, just life-saving surgeries". Ortho still wants to have the MRI done, and my Duke crew would like it done as well to compare to past scans to help monitor disease activity. Thurs, I think, I have an appointment for a nuclear bone scan. This is done by having a radioactive tracer infused and having a full body scan done 2hrs later. Areas of bone that absorb the tracer and glow brightly, are areas where the body is trying to repair damage. Last time I had this done my joints glowed like a Christmas tree. Next week I have a GES(gastric emptying scan) scheduled. I get to eat super yummy radioactive eggs and they will be followed thru my system. The % left after 4hrs allows Drs to see if there are motility issues. I failed this test a few years ago, but Duke wants a whole series of gi tests to compare to those done in the past. I also will begin pulmonary rehab with the grannies and grandpas in my area. Maybe I'll find a 100yr man who is looking for a hardworking single mom to inherit his estate :) And, somewhere on the calendar, I will continue 2X weekly PT for the jaw replacements and funky hips.
So-there's the novel describing my maddening medical mess. I could just go on and on and on-lucky for you I hear a cat yacking somewhere in the house. I feel guilty saying this, because so many of you suffer daily, but pain control is probably my best addressed medical problem. Even better is the fact that it's not just my pain Dr who understands the necessity of pain treatment, but pretty much my team. I've said it before, but driving 3hrs south to Duke is totally worth it.
I could go on and on… Again-Just being able to put in writing what's going on is so helpful. The support, kind words, and prayers are so greatly appreciated. I am so very blessed to have wonderful family and friends for support, and I also consider myself blessed to have found an online community for support as well.