So much has happened since I updated my blog two weeks
ago, I apologize for not being more diligent about updating it for those of you
who still might be reading it!
First off, turns out that the GI upset I had experienced
during and after Thanksgiving was not a flare up of my GVHD of the gut and
instead it turns out I have Norovirus.
It took a week for test results to come back but long story short, the
highly contagious virus that has been known to shut down entire cruise ships
made it's way into my gut. :(. In a healthy individual, Norovirus lasts hrs to
a couple of days and makes you very ill (many people believe that they have
food poisoning when hey in fact have Norovirus according to my doc). In an immunocompromised person like myself,
the virus can stick around for months because my body has no way of fighting it
off because my immune system is suppressed by meds on purpose to keep my GVHD
under control.
What is really interesting is that the treatment for
Norovirus in transplant patients is exactly opposite of the treatment for GVHD,
so when we had originally thought my GI upset was related to a GVHD flare up,
the doc increased my steroid dosage (wanting to suppress my immune system even
more in an attempt to squash the GVHD process.
Instead, once we learned that I had gotten Norovirus, he needed to get
me off the high dose steroid in order to allow my body to be less
immunocompromised and fight the virus a bit more (but my doc still needs to
keep me at a "therapeutic level" of immunosupression to avoid the
chronic GVHD of the gut and skin that I have had over the past 4 months so it's
at very fine balancing act. The good
news is that I get to pretty rapidly taper off the nasty high dose steroids
that I have been on for the past 2 months since my hospitalization in
October! I am very happy about this as
it will help my sleep, muscle weakness, and blood sugar issues that were all
nasty and unwanted side effects from the steroids I had been taking. Bad news is that since it will take my body a
few weeks to clear all the steroids and then I will still remain
immunocompromised it will take several s'more weeks-months for my body to fight
the Norovirus and I could very likely continue to have symptoms of Norovirus
:(.
At least we now know what the issue is and my doc knows
how to treat it and we are moving forward with that! He said it is complicated and there isn't a
lot of research or information in the evidence-based medical journals about BMT
transplant patients who have GVHD of the gut and also contract Norovirus, but
that it happens (even to the best of us:) lol and he has treated many folks
with my same issues. Makes me so
thankful that I have a doc who has 30 years experience in this complicated transplant
oncology business and specifically the GVHD complications that come with the
process! I love Dr. Nash! :).
The other thing that I recently had to deal with was a
scare with a bloody nose that started last Saturday and wouldn't stop. We took Scotty to see Santa at one of our
local garden centers that had advertised pictures with Santa and also had live
reindeer. It was FREEZING (literally)
here in Denver last week and last weekend, and I think the cold dry air mixed
with my irritated mucous membranes throughout my body (thanks GVHD:), caused my
nose to start bleeding when I rubbed it (it was itchy when we went from the
super cold to the warmer tented area that had those big space heaters to see
Santa in his sleigh with Scotty.
I've had on and off nosebleeds throughout his process (after
transplant, a few during the summer and a few in early fall, but nothing like
this one). All of the other nosebleeds I
had, stopped within half an hr or so.
This time around, it wouldn't stop because my platelets continue to be
low (it has been since October when they started me on the supplemental
immunosuppressant). I was also taking a
blood thinning medication because of the blood clot in my arm from the PICC line
they put in while I was hospitalized in October. Long story short, this was a nosebleed that
wasn't going to stop/clot with home treatment because my blood was so jacked
up. :(. I realized the seriousness of the nosebleed after trying to treat it at
home for several hrs with minimal success...ended up calling the on-call doctor
at the clinic and he instructed me to come to the ER affiliated with the
clinic...so I drove downtown to the ER and they had to "pack my nose"
in order to get the bleeding to stop.
Very unpleasant experience if I do say so myself. Even more, I had to leave it in for several
days to ensure that the bleeding would stop since my body was still trying to
clear the anticoagulant medication I had been taking. Having something shoved into your nose and
then inflated like a balloon to create enough pressure to stop blood flow in a
vessel is not fun. I had a headache
behind my right eye and sinus all weekend from the pressure of the balloon
thing they put in my nose. :(. Finally got my nose unpacked on Tuesday and
wouldn't you know it, the sucker continued to bleed (although much less) and
the Doc who unpacked my nose said that is very common for it to continue to
"trickle" because when they unpack it, it partially dislodges the
clot that had formed while it was packed.
LOVELY! :(. I must say, I was not a happy camper when I was sent homes
till "trickling blood" and told that "it should stop in the next
few hrs". They sent me home from
the ER with a nose clamp and some nasal spray and told me, it should be fine in
a few hrs but to come back if it didn't stop and they would have to repack
it! I was upset and frustrated seeing
bright red blood coming from my nose again (even in smaller amounts...seeing
blood coming from your face is scary no matter what the cause)! Thankfully the "trickle" stopped
around midnight (can't tell ya how nervous I was to take the nose clamp off
each time to check it every couple of hrs once I was home, but my prayer and
the prayers from family members and a few close friends who knew what was going
on Tuesday night were answered and it stopped while I was propped up sleeping
sitting up on our couch. Hallelujah! :).
I have been trying to be EXTREMELY careful not to touch, rub or itch my nose
since then and have a referral to see an ENT specialist who might be able to
cauterize "the bleeder" as I am affectionately calling my little nose
blood vessel that acts like a teenager who likes to throw unwelcome parties
(nosebleeds) in my nose! :) lol
So, I have been dealing with the cruise ship stomach bug
(minus the actual vacation/cruise), BUMMER!, and a blood vessel in my nose that
acts like a punk teenager throwing unwanted and disruptive "nosebleed
parties". I am over it! :) lol
Bright side is that the nosebleed is under control for
now, I am off the anti coagulation meds (did an ultrasound of my arm on Wed and
doc said it was reasonable to consider ending the blood thinner since there
wasn't much evidence of the clot still).
I chose to weigh the risk/benefits and he agreed to stop the Coumadin. (I am really happy about this progress off of
this medication because blood thinning meds in addition to my low platelets
freak me out and those meds scare me in general! They were causing me to bruise randomly,
etc...no fun.
The other nice thing is that I am aggressively tapering
down on the steroid medication so that means that my sleep should improve...SO
looking forward to that!!!!
So, that is a glimpse into my world over the past two
weeks and why I have been so busy (have had clinic appointments much more
often, still doing daily IV infusions (4hrs each time) through a new PICC line
to ensure that I can absorb certain essential electrolytes and then dealing
with the nosebleed/blood lot issues.
-Chellie
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