Some Back-Breaking Stuff (Literally) and Rituxan Round 2

As promised, here is a blog post that is not the length of a novel, nor overdue!

Some of you know from Facebook or chatting with me that I was re-admitted to the hospital the day after Valentine's Day. I called my doctor because my bloodwork was showing that my white blood cell count increased, which is typically indicative of infection, and I felt that my UTI had come back yet again. My pain near my kidneys was back, I felt crummy overall, etc. My doctor didn't have enough time to call me back (yes, I am still bitter about that), but their secretary got me in with a general family medicine doctor. My step mom took me to that appointment, and unsurprisingly, the doctor took one look at me, my records, and my labs, ran a repeat urine test showing protein and blood, and sent me to the ER.

We were in the elevator to head to the hospital, and I passed out twice. I have passed out many times before for standing in one place for too long, but this one was different. I felt like the elevator had moved, even though it hadn't, and I wasn't particularly dizzy before I fell. I came back "with it" pretty quickly, but then I had an angioedema (swelling) attack of my lips, face, throat, etc, so I used my EpiPen and 911 was called. When I got to the ER, my lactic acid was sky high (another indicator of infection), my white blood cell count was still elevated, my urine was positive for blood and bacteria, and the started me on an epinephrine drip to because the EpiPens and shots of epinephrine were not enough. My step mom brought the fast acting angioedema med from home, which they also administered.

They presumed I was septic because of the lab tests, but turns out, my cultures (both blood and urine), which is the true indicator of whether or not there was an infection, were totally negative. A nephrologist came and saw me because I have always been suspected of having renal tubular acidosis, which is caused by autoimmune disease and leads to electrolyte imbalances. He confirmed that because my electrolytes were a hair off, that it was likely I have it, but it wasn't acting up horrendously at the time, and also would not explain my pain.

I was still in miserable amounts of pain, so because I have pretty significant osteoporosis because of being on chronic steroids, the doctor ordered x-rays of my spine. Here comes the "back breaking stuff" reference in the title-- turns out that they found a compression fracture of my T12 vertebrae.

That prompted a lumbar MRI, which confirmed that fracture, but thankfully, that it was minimal and an older fracture, so surgical intervention wouldn't help. This kind of explained the pain that I have been in/am in, but not entirely. A neurosurgeon came and saw me, and when I pointed out where the pain was, was concerned that I could have additional fractures or spine issues. He ordered another MRI, a thoracic MRI, which showed that T11 is also fractured, and I have three mild bulging disks from T4-T5, T5-T6, and T6-T7. This combination of the 2 fractured vertebrae (T11 and T12) plus 3 bulging disks certainly could explain my pain.

Because the fractures are related to steroid induced osteoporosis, they were able to justify giving me my next Rituxan infusion which I was already overdue for. My last and first infusion was at the end of December, and was extremely helpful. It is a powerful immunosuppressant typically used for lymphoma, but has recently been identified as useful for autoimmune disease and dysautonomia (both of which I have). It is hard to get approval for it because it is a risky drug, wipes out a good chunk of the immune system, and in my case, is off label. However, since I was inpatient, and had the evidence of the fractures, they were able to infuse the Rituxan because it ultimately should help reduce my steroid dose.

I haven't seen the neurosurgeon since the second fracture revealing the more extensive damage in my thoracic spine because the neurosurgeon is out of network for my insurance. I am thankful that it doesn't appear that surgical intervention will be necessary, and that they are currently mild, but I am terrified of the long term implications of this, because I know that it is likely to worsen over time, and in the few people I know who have had similar issues, it hasn't ended well. The disks are bulging towards my spinal cord, and don't appear to be affecting it yet, but it concerns me that they could.

The pain is also a challenge to deal with, which also adds to my fear of things worsening. Things are generally controllable at the moment with IV Tylenol, but I want to see what can be done now to prevent things from worsening, if there is anything. At the hospital, they just said to strengthen my core, but now with the bulging disks on top of the fractures, I am wondering if any sort of bracing, use of something like a TENS unit, physical therapy, or other interventions could help slow progression of things. It's challenging in my situation because there are so many complexities.

I've already been on osteoporosis medication for a year, but I'm clearly not absorbing it (which I told them was a concern when they put me on an oral osteoporosis drug with known absorption issues), so I am supposed to switch to a daily subcutaneous (under the skin) injection. The Rituxan infusions were approved by my insurance (finally) to continue outpatient, but I thankfully shouldn't need another for a couple of months. I have 3 different consultations with different spine specialists over the next two weeks to ensure that we explore all options possible.

I also should be starting subcutaneous immune globulin, which is a form of immune replacement, in the next week or so. This is similar to the IVIG I used to receive, but just under the skin, which is supposed to help make it less likely to cause a reaction. From the nephrology/electrolyte standpoint, my blood work is just being very closely monitored and replaced as necessary.

As with any hospitalization, this admission wasn't without its challenges. There were some communication challenges at first where changes were attempted made to my regimen without discussion, as they didn't quite get the nuances of MCAS (ex. putting me on a different multivitamin even though I brought in the only brand that I have been able to safely tolerate). These were sorted out once they were explained, but nevertheless, annoying.

The worst incident that was pretty re-traumatizing for me was that after I was moved to the Oncology floor for the Rituxan, I was told that I was being taken for a chest CT scan. I didn't know why, because I had already had the MRIs, and the doctor hadn't mentioned it to me, but I said that it was ok as long as there was no contrast (I'm severely allergic). I was assured that it was contrast free. I get to the scanner, and they are preparing and getting ready to hang a medication on my IV pole. I asked what it was-- contrast. I immediately told them to stop, that I was allergic, and that they needed to look at my chart. Once they look at it, they saw the allergy, and didn't actually see anywhere in the notes why the scan was being ordered in the first place.

I start having a full blown panic attack because this totally triggered my PTSD related to medical trauma, since they almost gave me a medication that I was allergic too (and a documented allergy!). They had no benadryl with them, and I'm sure there is probably stock epinephrine somewhere in the room, but nobody present would have been qualified to administer it. I took a picture of the scanner and how close the power injector was to my IV pole-- I was already in the scanner! They called the doctor to see if they wanted a scan without contrast. They came back in, and told me that we were going back upstairs. Ready for what the doctor said?..........THEY ORDERED THE CT SCAN WITH CONTRAST ON THE WRONG PATIENT. And that patient happened to be one who is deathly allergic to contrast.

The photo I took while I was laying on the scanner bed with the power injector in the corner. The info on the screen with my name, birthday, medical record #, etc were correct-- it was the CT Chest with Contrast that should have been ordered for a different patient.

I still was freaking out, my dad was furious, and so were the nurses-- this mistake was so blatantly reckless, and we are all SO lucky that I caught it prior to the injection. They would not have been prepared to handle the consequences of this mistake, and it was a completely unnecessary test in the first place.

When the doctor came in the next day, we asked what happened. She apologized and admitted to ordering the scan on the wrong patient. She said she had both charts open, and was on the phone with a specialist about the other patient who needed this chest CT with contrast. Instead of entering the orders into their chart, she entered it into mine. I still can't believe this happened, and again, I'm so glad I caught it. She said she was glad too, but needless to say, the little trust I had was pretty much shattered from there.

To help buffer and lighten the mood after the CT fiasco, my dad and I ordered a good pizza for dinner because my hospital-provided pizza was inedible. It was rock hard, and going in the trash, so after we finished the yummy pizza delivery, my dad initiated a game of hospital pizza bocce ball (see video below), and "Where's Waldo, The Pizza Edition." If you look carefully in the photo, maybe you can find the inedible pizza :P

Where's Waldo? The Pizza Edition #1

Where's Waldo? The Pizza Edition #2

I got home last Friday night after a week long admission. I'm so glad to be home, and this week is primarily filled with follow ups, calling doctor's offices and the pharmacy, etc. I am going back to work again later this week. I'm annoyed to not really have many answers on the situation with my spine, but I'm hoping the appointments next week and the following week will shed some light on a potential course of action/expected progression.

In terms of actual fun stuff-- I am looking forward to returning to work, and seeing a friend from out of town at Disneyland Monday! I think my Mickey break will be a welcome distraction from everything else going on :) We also went to Malibu for lunch Sunday for a little mini day-cation, and ran into Gordon Ramsey at Starbucks when I went on a restroom break-- Cody was brave enough to go up and ask for a photo! I didn't have the guts to, but now regret not doing so...

Cody and Gordon Ramsay