Why am I writing this series?
Chapter 1: Sick in NYC
Chapter 2: Stool Samples 101
Chapter 3: Rock Bottom in NYC
Chapter 4: Mom Saves the Day
(Side note: If you ever want to ask a question or make a comment, please don't hesitate. I want there to be open dialogue about my journey. Nothing phases me anymore--no question will catch me off guard, so ask away, please!!!)
Back to the story....
It felt great to sleep in my own bed that night, so I woke
up feeling hopeful. No avail. I still felt AWFUL—fever, fatigue, diarrhea,
and I was unbelievably weak. I had to be
carried up our steps from the basement.
P.I.T.I.F.U.L. And I HAT—no
LOATHE—help. Ugh!
So anyway, our doctor in Hampton saw me immediately that
next morning. She ran lots of lab work
and tests to compare with the results in NYC.
If you remember, in NYC the doctors were concerned that my hemoglobin
level was at a 9 and called for a blood transfusion. (The normal levels are generally 12-14). They did end up finding out that my
hemoglobin was down to a 7!!! Yikes. Bad
news. I was admitted to the hospital immediately, knowing
that a blood transfusion was imminent.
While they continued to run more tests, my doctor was very
alarmed that they couldn’t even type my blood, which prevented them from doing
a transfusion. Even more than that, they
were just not equipped to deal with the unknowns that we were throwing at
them. They told us we could choose to be
transferred to the Mayo Clinic in Rochester or to the University of Iowa
hospital in Iowa City. (Unfortunately my
parents were all too familiar with the Iowa City hospital after spending nearly
2 years there with my brother that had Down Syndrome and passed away before I
was born). The fortunate part of that awful experience
was that they felt comfortable there and trusted the doctors immensely, so we
were loaded into an ambulance within the hour were off to Iowa City.
That was a miserable trip.
I was already miserable, but ambulances are soo incredibly bumpy and my
stomach was sooo upset. We didn’t have
an option though because I was already hooked up to an IV and so they had to
take me by bus. Thankfully they let my
mom drive. My dad must have flown home,
packed overnight bags for the two of them because he ended up following the
ambulance. That trip is a total blur but
I do remember having to pee in a bed pan while laying down. Talk about dreadful. Oh yeah, with a male EMT. Normally I would have been mortified but I
felt so crappy that I just didn’t care about anything anymore.
We arrived about 3 hours later to Iowa City (ironically my
mom and I had just been 15 miles away the night before when we had flown into
the Cedar Rapids airport…oh well). I
shared a room with an elderly woman who ironically was constipated and was
given prune juice on a regular basis to make her “regular.” Glad they didn’t switch our meds!!! That could have been absolutely catastrophic
for my colon.
Basically once I arrived, I told my entire story over and
over to several rounds of doctors—GI, hematologic, infectious diseases, etc—anyone
they thought might have a clue what the heck was wrong with me. I also did lab work around the clock (we’re
talking 6 vials of blood four times a day!!!)
and was pumped with IV fluids.
The next time they notified me, my hemoglobin had dropped DANGEROUSLY
low to a 5, and by now we are absolutely desperate for answers of any
kind. I even remember my primary doctor
telling me the first night that she was going home to read her medical journals
and books because my symptoms were just such a mystery.
Just as I would get comfortable and falling asleep, another
round of (well-meaning) doctors would come in and probe me with questions:
-
Have you left the country recently? Nope.
-
Have you eaten anything out of the
ordinary? I haven’t been eating much of
anything there, doc.
-
Has your sexual activity changed? Definitely a virgin, so no, nothing has
changed in that department but thanks for asking over and over!
-
Have you taken any different medications? I’m not taking anything (but I sure as heck
wish you would give me something!!!!)
(Obviously I did NOT answer those questions exactly like that, but that's how I would have liked to respond...)
Every round of doctors also brought with it sweet, inquisitive, unknowing, naive medical
students, and it was exhausting answering all of their questions. They were all so curious and inquiring about
anything and everything, and I felt like saying—I’m not some lab project—I’m a
real person, so unless you’ve got an answer for me, get the heck out of my
room! (As you can see, I was emotionally
getting more and more down....) We had
pretty much hit an all-time low at this point…or so we thought!
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