Haven't written in a while, and that was because I was so
busy with life. Holiday baking,
Christmas season prep, clinic appointments, spending time doing all of my physical
therapy, medication taking, spending time with my boys in the evenings when
they got home, etc. :). Well, unfortunately things have slowed down to a snails
pace again and I have have had to hit the brakes due to a flare up of GVHD
again. :(
I had been
feeling much better until Wednesday evening when I came home to find John was
violently ill with some sort of stomach issue (we now think it was food
poisoning but at the time I was extremely worried it was the stomach flu). I got home from a late clinic around 6pm from
a late appointment with Dr. Nash and immediately had to take over supervising
Scotty so John could take care of himself (felt terrible that I wasn't able to
devote all of my care to him!) as he was so violently sick. It was a rough evening in the Voss house on
Wednesday night to say the least.
Thankfully,
neither Scotty or I "caught" anything from John (again, why we are
now thinking he had food poisoning), and he felt better the next morning
(Thanksgiving)...however I think the stress of having a violently ill husband,
worrying about possibly catching the stomach flu and having to take care of
Scott all by myself when I am still so weak that I can't even carry him
upstairs myself caused my body to become overly stressed and that in turn
caused a flare up in my GVHD. (This is
my theory based on many conversations I have had with one of the on-call docs
at CBCI the past 2 days.
On Thanksgiving
morning John woke up feeling better and I started experiencing some lower GI
symptoms (very similar to the beginning stages of my last GVHD flare up that
required the 17 day hospitalization back in October. We cancelled our Thanksgiving plans to go
down to Pueblo (despite the fact that I had done TONS of cooking for the meal
on Wednesday) :(. And we stayed home so I could rest and be near the clinic if
necessary. By 12pm I had to call the
on-call doc who I was afraid was going to tell me to come in immediately. Thankfully, I had seen this doc several times
and he knows me. I explained everything
and he said that we should try to increase my prednisone (steroid) dose by 10mg
and "wait and see" if that helps a bit. I wasn't having any nausea/vomiting or pain,
so he wasn't too concerned at that point because I had only been symptomatic
for about 6-7 hrs and he thought we might be able to "kick it" with
an extra 10mg of prednisone). He told me
to wait 24 hrs and see how things go (of course calling back if I started
vomiting or any major new symptoms came up).
Unfortunately our
plan didn't work. By Friday early
afternoon I was no better (despite resting all day long and sending John and
Scotty down to Pueblo for a belated Thanksgiving meal (thanks for delaying your
Thanksgiving by a day Judy, Kate, & Anne, so that Johna me Scotty could
join you guys!). When I talked to the
same on-call doc late yesterday afternoon he said that he thought it was time
for me to come into the clinic to be seen by a doc because he was worried about
the fact that I could be getting dehydrated and not be absorbing very important
medications correctly with all the GI upset I was experiencing. Of course, I just had my PICC line removed
about 12 days ago, so I have no IV access right now and that took one of our
options for home hydration fluids off the table immediately. The doc informed me that the clinic was
closed and that he didn't think it was severe enough for me to go to the ER...
But that he wanted me to come into the office for their "after
hrs/weekend" clinic first thing on Saturday AM and he mentioned bringing a
bag packed just in case they decide that they have to admit me to the hospital
and switch my meds over to IV and ensure I am hydrated and getting the
replacement electrolytes my body needs (many of my meds cause my body to
"dump magnesium and potassium" which are really important to nerve
and heart function...and if levels get too low you can have seizures and all
sorts of scary stuff can happen).
I agreed with the
on-call doc that I didn't need to go to the ER (but I would if I started
vomiting) and he agreed that our best course of action was an 8am appt at their
"weekend clinic on Saturday morning...with me coming packed for an
admission (just in case). I must admit,
I bawled big alligator tears when I got off the phone with him despite the fact
that I know he is just trying to make sure that I am okay and ensure that we
catch this as early as possible this
time around. I was terrified of being
admitted and having to be away from my boys for weeks again!
I got to the
clinic at 8am as instructed this morning and the on call doc I had spoken with
last night had already texted the nurse in charge to expect me first thing this
morning. They drew tons of labs and
within a few minutes of getting results I saw the medical director who happened
to be the on-call "clinic" doc this weekend (different doc than I had
talked to on the phone). He assured me
that we could do this outpatient....at least through the weekend (whew) despite
the fact that they pulled my PICC line 2 weeks ago. He said that he wanted to "slam me with
2 massive doses of high volume steroids and shut down the GVHD flare up if
possible so I am here at the clinic getting an infusion for 4 hrs of extra
magnesium/potassium/fluids (because I am dehydrated) and 120 mg of steroids. I had just tapered down to 20mg and was
starting to feel like myself again (sleeping a little better, muscle weakness
was getting better) and now I am back up to 120.. But if we can manage it this
way and keep me out of the hospital then I am willing to put up with the side
effects again. This dose will cause me
to be diabetic again (I had just "graduated from glucose monitoring and
insulin injections last week) but have to start them again as soon as I get
home this afternoon!
I will have to
come back into the clinic again tomorrow morning at 730 am to get the same
thing (4 hr infusion of fluids/electrolytes and massive dose of steroids). Thank The Lord for the weekend clinic and the
nurses who work the weekend hours that allow this as a possibility because
otherwise I would be upstairs on 4B admitted to the hospital for the exact same
thing but I wouldn't be able to leave and come back in tomorrow! I am so relieved that Dr. Matous, the medical
director, was willing to do it all outpatient this weekend as he easily could
have just said, let's admit ya and do it
that way...but he knew how important it was to me to be home with my
family. He is leaving it up to Dr. Nash
on Monday, when I come back in for my regular appointment, whether or not to
admit me to the hospital but hopefully by then we will be able to arrange
getting a more permanent IV access/line put in again and I will be able to do
the infusions over 6 hrs at home instead of coming into the clinic for 4 hrs
everyday and there won't be a need to admit me to inpatient! :) I really don't
want another PICC line (because it cause so many issues with the blood clot and
was a total pain in the rear to deal with) but I will take that in a heartbeat
over having to go back into the hospital!
So for now, I am
sitting in the clinic downtown waiting for my first infusion of the weekend to
wind down. I have about an hr and 45
minutes left before I am cut free to return home to my boys. I will gladly bring my hospital bags that I
had packed back into the house and breath in the smell of baby shampoo from
Scotty's hair when I get home and just say a thank you prayer for allowing me
to be home tonight with my family! So
grateful to Dr. Matous for realizing how important it is for me to be home with
my boys and how emotionally upsetting it is for me to be away from them when I
was in the hospital a month ago. He is
such a compassionate doc and I love how he just makes it work for his patients!
I will be back at the clinic bright an early (7:30am) for
the same infusion tomorrow...and with all the steroids I got today, I
definitely won't be sleeping much tonight...so I plan to make some homemade
breakfast/baked goods to bring in to Dr. Matous and the weekend clinic nurses. I have been trying to decide if I should make
fresh blueberry blueberry muffins with crumb topping, overnight cinnamon rolls
with my favorite light fluffy cream cheese frosting, or if I should do
something like homemade bagels, fruit kabobs, and coffee. You know me, I love to bake and with 120mg of
steroids in my system this afternoon, you can bet my little kitchen will be
busy tonight while the rest of the house sleeps peacefully and will wake up to
the smell of something delicious probably just as I have to walk out the door
@630 to make it downtown and to the clinic by 730 to start my infusion
tomorrow. :).
-Chellie
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