October 2020 Update

I just realized I haven't updated since my care team changed everything up last month. Whoops! Honestly, it's been a long haul attempting to get insurance pre-auths pushed through. My insurance is stellarly crappy. It's almost impressive how much they deny... While we couldn't get them to approve at home hydration or even hydration at the clinic near my home, we were able to get it approved at a hospital about 45 minutes from my home. It equates to a lot of time spent on the road, but the nurses there are SO worth it. It is a cancer center, so they have the capability to run not only my lactated Ringers and Zofran, but my steroids and (soon to be) Actemra infusions as well! Plus they are all fabulous with port access. Speaking of ports, my port surgery went super smooth. The surgeon was incredible - as she looked over my old scar she said, "A man placed that previous port, didn't he?" I was sort of shocked how she would know that and asked how. She expressed that the device was placed "in the boob," and that only a man would do that. hehe I had a good laugh. Classic. 

I have noticed a serious downtick in symptoms since I began the bi-weekly hydration infusions. It is amazing what keeping a body hydrated can do! My blood pressure finally reaches above 85/53 on most days and I'm actually producing urine again! While more than twice a week would be ideal, my insurance simply won't approve hydration outside of the hospital clinic - and my body just cannot handle the long drive every day.

A had a wee emergency this month. My G-Tube, the tube that vents air and bile out of my paralyzed stomach, stopped working. The two-way valve became a one-way plug. Yikes. My poor belly distended to what seemed like a late-term pregnancy. I couldn't stop vomiting acid and burping. The pain was intense from the severe bloat. Unfortunately, my insurance also doesn't allow me to keep a backup tube on hand. *Sigh* So I had to venture to the ER to get a replacement tube asap! By the time I got there I was totally incapacitated by nausea and they got me in swiftly. Once we deflated the balloon the tube nearly shot out of me! Think of a whoopie cushion - lots of noise and mess came erupting out of my sad little guts. INSTANT RELIEF. We quickly placed the other tube - more bile and air escaped noisily. I think I quite startled the doctor. lol She kept saying, "wow, you must feel so much better! I have never seen anything like that! You must feel like a whole different person!" Ahh, the joys of digestive tract paralysis. My stomach literally can't handle air. AIR. You ever just think, wtf is life sometimes?!

Since that blip. I have been awaiting an endoscopy to place my preferred brand of tube, as well as explore some areas of chronic pain around the stoma sites internally. Unfortunately, low profile tubes aren't really an option for me anymore with the necessity of near-constant drainage, so I am back to long, clunky tubes. Bleh. 

Bloodwork, I almost forgot! I've been in close contact with my new Immunologist over the past month. Unfortunately, the extra blood work that was taken during our new patient appointment did show some concerning abnormalities - again. I have literally zero of the twenty-three antibodies that protect against conditions like pneumonia. I thought that was very random, but he expressed that with my total lack of Immunoglobulin, he was not surprised. So, he introduced a new medication via vaccine that should take about 4 weeks to replete the missing antibodies. In 4 weeks I'll do another blood test to see if my body was able to, "absorb" this introduction of external antibodies. If it does, we should be good to continue with my new immunosuppressive treatment, if it doesn't, I will likely have to begin IVIG after all. So, still a waiting game there but, I am so grateful to have such a knowledgeable new doc on my team!