Welcome back to the next Thriving Not Just Surviving blog
post. For those of you following us on Facebook, you already know that I had
another seizure on Monday night – 24 hours after the seizure on Sunday night.
I’ve never had back to back seizures quite like this before. The seizure on
Monday night was not as violent, but lasted much longer – over two minutes. The
concern with seizures that are long in duration is that they can eventually
cause brain damage. Our neurologist told Maureen and I that two minutes is the
most I can go without risking permanent brain damage. Unfortunately, the
seizures appear to be worsening as a whole. I went 6 weeks being seizure free,
but then had two severe ones back to back. I’m hoping that this means I will be
seizure free for a while, but there is no way of knowing.
It’s unfortunate and a sad state of affairs that I have to
use this channel to conduct this sort of activity, but the recent events as
well as events all along have left me no choice. This may sound petty and
complaining, but I really don’t care as long as I can help other patients in
the Kansas City community avoid the absolute worst hospital in the area, which
is St Luke’s Barry Road. This has been our go-to hospital because of its close
proximity to our home. However, the care provided at this facility continues to
be worse than unacceptable and I can no longer gloss over the lack of care we
have received throughout the past several months. I’m not recounting these
events for sympathy points. Believe me, being a stage 4 lung cancer patient and
now with epilepsy will get you more sympathy points than you can handle. I’m
bringing this to light so other patients don’t have to experience incompetent
medical care and can go to a better hospital.
I’m all about second and third chances, but I draw a line
when the problems become more prevalent and impactful. Over the past seven
months we have spent numerous times in the emergency room at St. Luke’s; by the direction of our St. Louis neurologist
to seek medical care after every seizure. After Sunday’s seizure I was
transported by ambulance to the emergency room. They gave me basic pain
medication and valium to prevent further seizures. However, the X-ray
technician was so incompetent that they could not get a conclusive picture of
my right shoulder. They released me Sunday evening with no clear picture of my
injured shoulder. (We found out from a St Louis Orthopedic Surgeon that I may
actually need a complete shoulder reconstruction from the x-rays that were taken
Saturday).
I had another seizure Monday evening. This was more
concerning than the first because it lasted for over two minutes; creating the
risk of brain damage. I was transported again to the St. Luke’s ER. However, I
was left in the hallway despite several empty rooms. Normal protocol dictates
that the nurse or doctor at least question you about the type, duration, and
severity of the seizure. None of this happened. In fact, they were even
unwilling at first to give me valium to prevent further seizures. We inquired
about pain relief and the ER doctor flat out refused saying “he wasn’t going to
argue with us”. He went on to say that normal people with epilepsy shouldn’t go
to the emergency room. They should just learn to take their medicine and follow
up with their neurologist. Either this ER doctor is incredibly stupid, like many
of the doctors at St. Luke’s, or refused to listen the patient’s request. Both
are unacceptable. Additionally, the nurse on Monday was cold, short, and flat
out crabby. She refused to include Maureen in any of our discussions. They were
more than ready to charge us the $200 for the visit. Not really sure what we
actually got for that $200 because they didn’t even try to conduct an X-ray.
I just retold a story from a single visit to the ER. I can
tell countless more stories of incompetent doctors, dirty facilities, and poor
customer service. When I stayed for 3 days in July the St. Luke’s neurologist
refused to consult with my primary neurologist and went against his wish and
put me on a medication that I was allergic to. When we came back to St. Louis
to the Epilepsy Monitoring Unit (EMU) the Neurology team could not understand
why they put me on a medication that would have limited impact and cause an
allergic reaction. I’m guessing the St Luke’s neurologist, who already is not
good at his job, didn’t want a more prestigious hospital second guessing his
decisions. However, that’s exactly what happened.
I have already communicated these concerns to the St. Luke’s
patient advocate. So the ball is in their court if they are going improve. If I
had to make prediction, they won’t, due to their arrogance and lack of
knowledgeable staff, but we will see. In the meantime, I cannot recommend the
St. Luke’s health system to anyone. Maureen and I will be finding a different
hospital to use for any medical care in the Kansas City area.
I’m back in the St. Louis area surrounded by
doctors that I trust. I have a chest CT scan and oncology appointment on
Thursday. I expect another blog post within the next week with those results as
well as more details about the next steps in managing the epilepsy. Thanks
again for the continued prayers and support. 
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