First Week of Hizentra

I mentally feel a lot better than I did during my last post. I had been really struggling with a lot of frustration over the last few weeks. Mostly with my insurance for deciding to make everything so incredibly difficult recently. Though, I think the realization that I have been fighting for nine straight years sort of crept up on me too. Nine years of literal life and death - I think my poor brain just shut off for a couple weeks there. lol Thankfully I have a wonderful therapist, palliative care team, and army of family and friends willing to hold space for me during my moments of grief.

My insurance finally approved the SCIG which began this week. This is a blood product, called Hizentra, created by thousands of plasma donors which will build back my depleted immunoglobulin. It will be infused subcutaneously at home once a week. This means four small needles will be placed into my stomach while thick fluid is pumped under the skin just above the muscle. Yes, it is about as pleasant as it sounds. The subcutaneous version of immunoglobulin has a lesser side effect profile than the intravenous version, IVIG. IVIG boasts many severe, life-threatening reactions - I had been on IVIG once in the past for a bought of GBS and did not fare well. My physicians hope I will tolerate the subq version better since it is received in lower doses more frequently as compared to one large dose a month. The subq version I am receiving is not necessarily painful, but quite uncomfortable as the fluid builds under the skin. I am left with red welts until the fluid dissipates over about 24-48 hours. The one-hour infusion feels pretty similar to rubbing stinging nettles on yourself - sort of itchy and prickly. Besides being very tired the next day, I seemed to do just fine. 

I met with my Rheumatologist to go over some blood work and to discuss treatment options moving forward. Due to this newly diagnosed immunodeficiency, we decided to hold off on any immunosuppressive treatments, as they would be contraindicated at this time. We will be reevaluating my treatment options once we get this current, "fire" under control. It is quite odd prioritizing "fire." Letting one fire burn so you can snuff out another feels counterintuitive, but in reality, it is often the only way people like me survive. I have read a few studies that showed promising improvements in MCTD patients on therapeutic levels of immunoglobulin though, so maybe this treatment will kill two birds with one stone? That would be rad... My blood work was pretty typical for someone with serve GI issues. Low vitamin D, low potassium, etc. I also showed some alarmingly low blood sugar trends, low white blood cell counts, and of course, a formidably high autoimmune panel. Like I said, typical stuff when you reside in a failing body. I'll see my doc again in a couple months to evaluate how I am doing on the SCIG and to run more blood panels. 

After further discussion with my team about hydration at home, it looks like the only way forward in the fight with Medicare for treatment coverage is to accept full cost responsibility which will generate an, "official denial." If you are scratching your head saying, "that doesn't make any sense," I too had that reaction. Essentially, my doctors cannot fight Medicare until I am officially denied payment for treatment. Once I receive the denial letter from Medicare I can then have my physicians send in all the documentation on why at-home treatment will be more beneficial in my case. It's backward I know, but it currently is the only way forwards. Hopefully, we won't have to front the cost too long and can get the denial overturned asap. At least for now, I am receiving my D5LR safely from the comfort of my own home. 

I know this was a super short update, but I just wanted to pass along that things are moving forward finally! Xoxo, Chanel