This post is in progress. Please email myself Julia at beckleyjulia3@gmail.com with any commentary and questions!
Thursday
Night :
Maybe I’d
just overworked my body and it just needed a little rest. The sore throat
probably wouldn’t last long and I have all the perks of a trach and g tube to
manage life from home. As my hands were noticeably blue and lips cyanotic, I
began to initiate damage control. A nebulizer treatment, some oxygen, and hot
tea held my hope together, but only for so long.
“University
of Colorado Health, this is Liv speaking, how can I help you?”
I pulled
air into my lungs in attempts to have a clear voice, “Yes, can you page the on
call internal medicine doctor?”
The
conversation continued as I explained the recent couple of days of just minor
fever symptoms and discomfort, but the more imminent concerns of hypoxia and
change in status over the past couple hours. Shortly after Liv made final
instructions to wait for a phone call, I received just that. I quickly
recognized the physician was not familiar with my complex case, but tried to
describe things such that it would lead to the answer I wanted, “just stay
home, and come in tomorrow morning.” I was honest though too, briefly
explaining my symptoms and history. I followed my current concerns with “I do
have a trach and g-tube to help as well.” I could amost hear her heart beat
change in reaction to the information.
The
physician quickly covered the basic questions that she would ask any concerned
patient. We discussed the need to go to the ER despite my desperate desire to
just get even one more day out of the hospital again before an admission.
However, I knew she was right, and I knew when making the call I would be able
to trust that an ED visit was most likely going to be the “safest” and preferred
choice of the physician.
It didn’t
take long before en route to the home hospital I became acutely sick (in my
mind) with edema and an occulded trach. I maintained a relaxed pose lacking any
kind of distress as hand off was given from the EMS crew that’d picked me up
along the way. When the resident recognized me a surge of fear ran through me.
What was I like the last time she saw me? Was I septic and confused to
extremeness? Was I trying to survive another flair of angioedema without any
other help only to be defeated when I failed and landed myself in the ER?
I never
asked nor did I know the answer to those questions. I did know that I felt the
incredible kindness and compassion flow from her heart. I begged for the visit
to be short and that was the original plan and goal. It started. A couple hours
later and my face quietly became rose colored and my harms covered with
patterns of histamine release. While the fever seemed to disappear and oxygen
maintained appropriately I was perfectly set up for a discharge only to have a
reaction that mimicked Will Smith’s infamous scene of chugging benedryl in Hitched.
I bought
myself an admission, but only to the floor. My heart relaxed a little knowing
just months before this identical ER visit would’ve been a mandated ICU stay.
We had progress, in my books.
Greeted by
my family on UCH’s med specialities floor I took in the sight of my loving team
members from beyond past to most recent. An overnight stay seemed like it would
really take care of most things and hopeful to return to our white picket fence
of a yard and playing with my dog. The following morning resulted in a low
fever of 38 C. A minor concern in my eyes, random fevers and respiratory buts
felt routine. Anna, my RN, continued to laugh and joke and smile with me but
stopped talking about “getting out of here to get to go have fun” and focused
more on relieving the symptoms as they piled on. Within 24 hours my temperature
spiked to 40 C and stayed there. Tylenol and the kitchen sink couldn’t do much.
I tried to grin and ask about going home for Christmas but the mood of the room
changed. Anna expressed concern that out of her experience being my nurse so
frequently I was more than just a little sick to her. She compared my status to
that of when I had sepsis last.Days blurred together as Toby sat on the end of
my bed only leaving my side for short bathroom trips.
When kids
are sick most of the time they cling to mom or dad or family. I have an
extended family made up of environmental cleaning staff, CNAS, volunteers,
EMTs, paramedics, nurses, nurse practitioners, PAs, respiratory therapists,
attendings, social workers, patient advocates, med students, interns,
residents, and so many more at UCH. It wasn’t an easy path to come to this
point. It involved tears and frustration and arguments just like I’d had growing
up with incredibly caring and phenomenal parents. Now I have more trust in
providers than I have in the past 10 years, well I guess more than the average.
I have the ability to listen more effectively and communicate as well. I don’t
give up at the first sign of personality conflict, but try to find common
ground. I have discovered the difference between wellness and illness can be an
“I” and a “we.” I have a long road ahead of me but I have a team of
cheerleaders right beside me, inpatient or outpatient, the latter being
preferred. My mind is to my wellness as wind is to sailing. At the end of the day I feel horrible that I
have been almost every type of patient that frustrates all of us, especially
myself, the types of patients that get joked about by too many even. I am so grateful
and proud to have come to the point where I have. Healthcare 3.0 care as a
result of not just one individual, but a family of providers and people. I have
learned that even the best of care cannot be 3.0 without the patient’s simultaneous
effort to be 3.0
What it
means to be a 3.0 patient:
These are
just the basics of what I have observed
1.
Communication- everything starts with this. If I
as a patient do not present my symptoms verbally or physically (physically, is
dependent on my provider being very attentive too), than I cannot expect
change. This leads to the first sub point
a.
Honesty comes in all aspects of the care process. Being
able to be forefront about EVERYTHING that applies (sometimes its hard as
patients to know what to say versus what not to say, and its hard on the other
side too to know whats important versus whats not). So both honesty in
presentation, not faking symptoms, and honesty in the other parts of the
process.
When it comes to honesty I believe that being able to communicate with
my provider what my concerns are and what my goals are, have the most important
component for me. If I can’t address my concerns, including my anxiety, about
my care whether that be the next steps or the past, than I am not going to mentally
be able to manage either.
b.
Trust- This is incredibly difficult part of care. I
wish I could spend more time with my providers giving them more information on
why I make the choices that I do, so they could better understand what is going
to be successful for my care and whats not. When I think about the “whys” I
think about wanting to explain sometimes my verbal reactions to ideas (not
necessarily bad verbal reactions, or whatnot). I want my providers to see
beyond the 10 minutes that they get to spend with me to understand that the
difficulties I have, go way beyond today. I broke my first bone at age 8, and
it took 17 breaks to finally come to the conclusion this wasn’t normal. I have
a track record with providers that they have said something, and unfortunately
my body hasn’t followed suit. That does not mean they did not practice good
medicine, and were not right in whatever instance; however, it does have an
impact on how much I “trust” the process of whatever is going on ER visit or
hospital stay or outpatient follow up. I have recognized this and worked hard
to communicate my concerns, and learn that I am much happier when I can find a
way to accept the where my physician stands and trust them. Sometimes this
means saying “I am scared about xyz currently, I know this might be ridiculous.”
My provider responding, yes that’s a little out there and here is why we don’t
have to worry about xyz right now and here is when we’re going to worry about
xyz.
2.
Attitude
a.
Gratitude
b.
Love/compassion
c.
tenancity
d.
Not getting butt-hurt
3.
Responsibility
