May 2021

Hello Everyone, no news has been good news in this case. It seems like a sole monthly update (perhaps even less) will be pretty standard from this point moving forward. What an exciting milestone to reach! Things have continued to improve, from my lungs to digestive tract, thanks to my Immunoglobulin therapy. It has been nearly 8 weeks since I used my J tube for nutrition. I have been able to sustain orally now without any enteral assistance. While my intake of supplements has been increased, and I still continue to require lactated ringers throughout the month, this is HUGE! I am officially no longer reliant on artificial nutrition. So, what is the game plan?

In mid-June I have an appointment to remove my J tube! This will leave me with the G tube, which will stay indefinitely. The G tube allows me to remove undigested food from my stomach - creating a better quality of life. Less nausea, less regurgitation, less bloating, etc. While yes, I am sustaining orally, that does not mean my digestion is suddenly perfect... or even close to on par with that of a normal human being! lol I definitely will still need help from my G tube, oral supplements, and IV hydration to keep me functioning. Immunoglobulin therapy is not a cure all - though it seems to be the closest thing I have received in the past 10 years!

Our biggest concern up to this point was aspiration. I continue to have a wet cough throughout the day. My Pulmonologist and Gastroenterologist worked together to assess my aspiration risk and ensured it will be safe to pull my J tube next month. The good news, even though I am coughing, my lungs have NOT been damaged or lost function since I began oral intake. This means my cough could simply be acid reflux or, it is a mild aspiration that doesn't seem to be causing damage. As long as my CTs and PFTs continue to look this good though, I am not worried. My PFT results were actually the best they have ever been! 

My blood work continues to be off in the white blood cell category. I met with a new Hematologist this week actually. She didn't believe this leukopenia was derived from past immunosuppressive treatments, but instead, a side effect of my actual autoimmune disease. Apparently, in rare cases, Scleroderma and its overlapping conditions can cause leukopenia on their own. If my numbers continue to drop, we talked about starting a medication to stimulate white blood cell growth. However, that is not quite necessary yet.

I am so incredibly grateful to the thousands of plasma donors who have made this incredible recovery possible. Thanks to their generous donations I am able to truly live again. Eat again! I cannot express my gratitude enough. Thank you so very much. 

Hugs, Chanel