The last two days have been pretty busy. I'll go through each team that I now have following me as it makes everything a bit easier to understand.
CT Scan: It showed some spots on my
lower lungs that may be the CMV infection or something new. As a result,
I had an abdominal ultrasound yesterday morning as further
investigation. That showed spots on my lower lobes, liver, and spleen.
Infectious Diseases and CF team:
My lungs are still infected with the aspergillus along with a few other
bacteria. After the bronchoscopy on Friday, they determined that it's
actually two strands so are adjusting my medication accordingly. The
problem is that a lot of my medication reacts with each other so the
pharmacists have been busy looking up drug interactions and
My CMV infection is responding well to the
medication which is excellent news. However, the medication that's
treating it be lowering my white count as that has turned extremely
My lung function has not really improved at all but it's also not dropping.
They were called in to see if my low hemoglobin was being caused by a
GI bleed. After investigation, they determined that it was not. They
said that a colonoscopy would be pointless, yay!
They want to figure out for sure what is causing both the spotting on
my liver/spleen and what is crashing out my white count. The theory
about the spotting on my liver/spleen is because my recent bloodwork
shows that I have an infection called Epstein Barr virus, EBV (otherwise known as the mono virus).
does not mean that I have mono (they did put a request in for the
testing but don't actually think I have it), it only means I have the
virus which could lead to mono. It could also lead to something called Post Transplant Lymphoproliferative disorder.
They mentioned this was a possibility pre-transplant as I was EBV
negative and I could get lungs that were EBV positive (as most of the
population has the EBV virus). Long time readers may remember that post.
It's here if you want to review.
I was very glib about it at the time. Apparently, I should've taken it
more seriously as now I've ended up with lungs that were EBV+ and it's
developed into a virus.
Naturally, they want to biopsy
the liver to confirm what is growing. The liver is the easier option of
the three spots with nodules so they'll start there. That may take
until next week to get booked.
As for my crashed out
white blood count, they theorize it's because of all the various
medication I've been on. However, they want to rule out 'other options' -
as the resident said. I told him it was okay to say the word 'cancer'
to which he responded 'yeah, basically.' They plan on doing a bone
marrow biopsy in the next few days to figure that out. They're also
starting me on some 'white count booster' needle to help bring my
They're also stopping my blood thinner as
they say that it's pointless for me to be on it as my risk of clotting
is less than my risk of bleeding everywhere.
They theorize that one of the main reasons for my low hemoglobin -
which has dropped again after the transfusion - is because I've been
having my period more and heavier than normal. That's being blamed
mostly from being on blood thinners so they want me on birth control to
try and normalize it a little bit. However, they need to rule out other
options for my frequent periods like cysts so I'll be getting a uterine
ultrasound over the next few days.
also got a PICC line in today so they can thankfully stop stabbing me so
often for IVs and blood work. I also received a bolus of iron tonight
to help my numbers up a bit. My appetite is up slightly today so that's
All and all, there has been a lot of
information thrown at me over the last two days. It's been exhausting.
I'm happy that they are investigating why I've felt so poorly over the
past month and seem to be consulting with all the right people. Nothing
that can be ultrasounded is going unultrasounded. No blood levels that
can be checked are going unchecked. No parts that can be probed are
going unprobed. They'll get to the bottom of this, whatever it is. As
for now, I'm going to zone out with some mindless reading and try to
forget about all the 'what-ifs' the last two days have brought me.