I’ve learned over the last 72 hours that a recurrent c.Diff infection in a transplant patient is a bigger deal than having it the first time. Things are on the up and up, but not quite where we need them. So, at the local hospital for at least another day. ☹️

The doctors are pleased that my WBC started coming down from 17 to 14.3 over the last 72 hours (normal is 10), but my kidneys took a major hit. And my kidney function is too far from my baseline to be discharged. They also want to see my blood count get closer to normal range. It will be a day by day decision based upon labs. Do you remember what caused me to be hospitalized last summer for two months? C.Diff and my darn kidney function. Like #no we aren’t doing that again.

The hospitalists have been working by phone, with my fav Hopkins Transplant Doc. They told me that he really advocated for me: letting them know what he wanted done and what meds he knows work in my case. Thank you Lord, for Doctors working together. 😎

Now back to C.Diff, Transplant Infectious Disease at Hopkins is now also following my case. This is because I’ve gotten C.Diff twice in a year. Tx ID is heavily involved in the immediate post Tx time and then when issues like this arise.

Here’s where things get a little more interesting, complex, complicated, or whatever you want to call it…

In all the crap ton of lab work prior to transplant, they get baseline blood levels of all kinds of fancy things. They reran some of the labs (science-y stuff I don’t understand) and one of the levels is running higher. Transplant and transplant ID docs don’t like this because an increase in that level can cause you to go into the non-treatable rejection. Transplant ID has studied and seen a lot of instances where C.Diff has raised this level. So treatment for C.diff is very important and completely irradiating it from my system needs to happen. It’s not just a take this antibiotic for months and it will be better this time.

After talking to my Tx Coordinator Wednesday, a lot of discussion has been going on with Tx, Tx ID, GI , and Tx Pharmacy behind the scenes at Hopkins about how to treat this case, while symptoms continue to be managed locally. My transplant ID doc is one of the smartest physicians I know, so they’ve been collaborating and are working up there to get me in with specialists quickly and get things approved by insurance because…y’all I can’t even believe this is what we are considering…

….They can’t use certain meds because of my allergies, certain ones because of transplant…so they are discussing a fecal transplant 😬 or a monoclonal antibody treatment. Whichever treatment is available….but really sh*t💩? I can only laugh…or I’ll cry and I did that to poor mom at 2am in the ER the first night.

When my coordinator brought up the treatment options I laughed out loud, and had some serious questions…

Like do I get a poop transplant T-shirt to match my heart one? Do I have to change my # to because of Jesus and a Donor and TP? Am I awake when they transplant the poop? Like how does one become a poop transplant donor? Does that persons poop stink like mine?

How exactly is it done? In case you are wondering, You clear yourself out with colonoscopy prep, and during a colonoscopy it is transplanted while you are under anesthesia. There are strict guidelines to be a poop donor. Apparently there is a nationwide storage of poop for fecal transplants because there are very specific criteria, including no recent infections and darn ‘Rona has limited people’s abilities to donate.

In Tx IDs opinion, Monoclonal antibodies are not usually as effective in transplant patients, so they are leaning more towards the transplant. And please, none of you offer to be a targeted donor. I love you all but I don’t want your poops.

Looking back…we think I picked up c.diff when I was hospitalized in April (as it is often times hospital acquired) and we blamed original symptoms on restarting steroids. I am so grateful that my PCP is so familiar with my case that she literally said “when I think your going to zig, your body zags, so let’s just run this panel”. Had she not run it I would have gotten much sicker. Bottom line: we got lucky we stayed so diligent about my labs and pursuing why they were so off. When we were texting yesterday, we both decided C.Diff was better than rejection any day, as with my symptoms the past month, she was thinking possible rejection. So we count our blessings.

I’m starting to feel much better than the past month, being hospitalized and getting fluids , antibiotics and meds to manage symptoms. But we’ve got a ways to go. Buckle up folks, the fun is just beginning.

#HOPEstillWINS #BecauseofJesusandadonor(&tp?)