Mini update - I reached out to my care team yesterday and gave them a condensed version of my first experience with RONA similar to what I put in my last FS post. Nurse Christy responded with:
"I am so glad you fought the battle and won!!! Your message had us giggling. Dr. Craddock is happy to order a CBC for you, she just wanted you to be aware that after COVID or any other severe infection, your counts can be "off" for a while until they finally self-correct. We can draw this, but it may need to be repeated. I will put the order in, it is up to you."
A few things bare noting for context here. Christy is purposely referring to my counts as potentially being "off" instead of using the word "low" because my specialist and me have a long standing argument/debate of t cell -count threshold. Jessica goes more by the western model and likes the "cut-off" to be around .6 or less before taking a patient off their meds.
I'm of course, less brazen with my immune system. It's true that PML --> progressive multifocal leukoencephalopathy & death from JVC is rare. But, if I'm hopping around the MS forums and come across random posts stating
"Yeah, that person isn't around anymore. Their t-cell count got to low from their ms meds and they died from PML..."
That tells me, the bottom line is there ARE folks who have died within the my community specifically because their meds wiped out their immunity enough that they had no protection from any cold/flu/virus at all. So, my t-cell count threshold is on the higher end around .8 X 10(9) per L.
However, this is a different situation. Depending on what we find, If my t-cell count is extremely low right now - it wasn't technically my meds that tanked them. That credit would belong to RONA. It puts us all in a pickle of a circumstance. But, I'm not inclined to get off the ms med even if the virus wiped out my immune system's army because in this case given some time, my t-cells "should" be able to recover.
But, I'm also aware that because of the immuno-suppressant I'm taking - regeneration of new t-cells may not happen quickly and I'm also aware I may never hit the 44% I was before. But, I can live with that as long as I'm around .8 X10(9)/ cells per Liter.
So, my response was
"Definitely, put the order in so we can see what the lay of the land is. And, let Jessica know it's okay I'm not going to panic if the t-cell or WBC count is super low. I'm definitely staying on the the meds. In fact, right now I'm very diligent about taking them because if I do have any tired soldiers left - I'm not about to let this system use friendly fire. Last thing we need right now is a flare up in any, way, shape or form. But, some precautions may need to be used if the counts are very low and maybe some immune boosting foods and patience. No problem with repeating the blood draws so we can just monitor what's happening"
The gist of this is that I may need to be a "girl in a bubble" for a bit until we know what we're working with. I'll be getting the first draw a week from today and have prepped this mind not to be surprised by anything I see...unless it's pleasant of course! LOL!
In the meantime, I just implore the same methods I used to beat RONA, because, ironically they are actually the same methods that help regenerate new t-cells! Fancy that!
Anyhow - Have a beautiful, blessed day everyone. It's been a gorgeous spring! I hope you enjoy a few flowers from our garden :-)
