When I started the update and it went on and on and on about my line, interventional radiology, my eyes and then my abdomen for so long I got tired, I realized I probably needed to be seen.
With My regular heme team out of the office, I saw Beth an NP I've seen regularly in the past.
Beth is an assessment rockstar.
She asks questions in a manner that stimulates my memory allowing me to recall things I may have not otherwise told her.
If she could teach every healthcare professional how she achieves her line of questioning, I think most the world's medical mysteries would be solved.
She came to pheresis to solve my problems anyway.
Apparently, its been 3 weeks since I've been hospitalized for viral gastroenteritis, which is supposed to hit hard and go away.
Mine hasn't gone away. It's stayed in a big way. I have nausea and cramping or vomiting with diarrhea daily.
I've been subsisting on crackers and juice under the threat of pain and cramping so severe it will plaster me keeled over to the toilet before I pass out from exhaustion.
These symptoms bought me an extensive assessment and may buy me a colo and endo next week in search of gvhd of the bowel. They considered another inpatient stint, but since the symptoms occur in direct response to eating, I have them under control.
There are a couple of possibilities for this problem, one being GVHD, another being a steroid side efect, and another being viral or any combination there of.
Of course, the viral possibility couldn't just be a simple normal person virus.
Oh no, it has to be a special version for the immunocompromised.
I may have viral phenomenon, which only made it into our realm of thinking because Alyea ordered and Epstein Barr Virus (EBV) Viral Load test when I saw him.
The scientific pictures at least look pretty. In Image one a. represents the original diagnostic lymphnode and b, c, and d illustrate positive markers within the liver.
Image two shows lymphoid cells in the liver strongly positive for EBV, and image three is the bone marrow.
This is my favorite, pretty. It almost looks like stars, which would be appropriate since our bone marrow is like the body's universe or solar system, creating our entire existence is ways we may never fully understand.
EBV is a virus 90% of us have, mostly asymptomatically, but can cause illness in post-allo transplant patients.
I thought I was far enough away from my transplant to have these problems.
I have no idea what this is and when I googled it, the results for "Viral phenom" talked about marketing on the internet.
Maybe helpful for my writing, but won't help my health.
I do know this could suppress my red blood cell making ability, making me anemic. My hgb has plummeted from 12 to 9.8 in recent weeks.
Iron studies were ordered.
When I got more specific and googled "EBV in post-allogeneic transplants" I found more information on my possible syndrome "Post-transplant lymphoproliferative disease," but with a name like that, I think I'll let the professionals deal with this one.
Hopefully they'll deal with it quickly, because I still have plans.
Mom, Brynn, X and I may be jaunting down to NYC during his upcoming April vacation. I've never brought him into Manhattan before for an extended stay. I can't wait.
Unfortunately, I didn't receive any information on follow-up yesterday, so it will be another weekend of my bland diet, but at least I know (or hope. keep your fingers crossed) that help is on its way.