Wednesday, March 24, 2021

It is Still March, 2021

Like the title says, it is still March, yet here we are with another update lol Digestive-wise, things have been going really well! I've been searching for any and all information on the GI tract and human immunoglobulin therapy lately. It has been a fascinating ride. From what I can understand, human immunoglobulin, which is a blood plasma component, is linked to antibodies and other substances directed at nerves. The immune system and nervous system, especially autonomic, are heavily intertwined. In autoimmune disease, the immunoglobulin fights the autonomic-neuropathy, aka, the dysregulation of the autonomic nervous system due to autoimmunity. This syndrome is heavily present in almost every autoimmune disease, and for me, what took out my digestive tract. Here is a GREAT article about it! https://www.karger.com/Article/Fulltext/498858

With my GI nerves sort of healing, which if you recall, also happened for a short time after my transplant due to a similar short-term resolution of this autonomic-neuropathy, I can definitely take more by mouth. We have actually moved my hydration infusions back to as needed, instead of every day! Whoop! In all honestly, I have been trying to use my J tube for feeds less and less. I even went a few days without feeding through the J - though I am definitely still using it for meds. However, I may be being a bit too optimistic *sigh* My latest labs showed lower than normal potassium, calcium, etc. Which means I am not absorbing all the nutrients I need from the food I am keeping down. My J tube formula is all predigested proteins, etc. so my body doesn't have to do so much work to digest. With food, that is clearly not the case. I actually have quite a bit of residual food in the morning which drains from my G tube  - which means some food still isn't leaving my stomach. I am also aspirating more than I expected. I have a ripping, wet cough all day every day at this point. I am going to be consulting with my GI doc regarding what steps are best since I need to ensure my nutritional needs are being met - but also don't think I need to be on all-day feeds anymore. So good news, bad news. 

My latest labs also showed the continuing decline of my WBC and ANC. My last ANC was down to 0.7 which is really, really low for someone not on immunosuppression. Normally, anything under 0.5 they want you in the hospital for your own safety... Yikes. My docs still have no clear idea as to why this is happening. So, we are running another panel this week to see if there are any changes - if it continues to decline I've been told to expect a bone marrow biopsy. 

The PFTs that I had performed at the very end of last month looked good. Everything was stable beside the DLCO which did drop about 12%. However, I typically find varying percentages of about 5-10% are pretty standard for me in that arena. So, my Pulm isn't too concerned about it for now. We will repeat again in 6 months instead of a year as we had originally planned. 

That's about it in my world. Besides taking care of my health, I have been spending a lot of time roller skating. It's been a lovely workout for me, as well as an enjoyable new hobby. Though, it is quite hard on my osteopenic bones lol I already broke an elbow! Luckily, it was a clean break and is healing quickly. No surgery or cast needed!

Hugs, Chanel