This post is a rather lengthy one with a friend's perspective as well as mine. KK has watched both parents get ignored to death, literally, by the healthcare system. Similarly, my brother may suffer (and i do mean SUFFER) the same fate.
From KK:
She heard a
story in January 2019, that sounded quite familiar. It was a tale of rejection, from an insurance
company that has been the least successful, most stressful-to-deal-with when in
poor health model of ineffective health care:
Group Health. (commonly called
Group Death, for reasons described to her as utterly horrific, which she will
relate herein)
The
switch-over from Group Health to Kaiser Permanente in 2017 changed nothing,
according to all the people in our Island County who have been denied
air-ambulance services even though they are Island, with no ferry or roadway at
all in times when a crisis occurs…spurs her to relate a very personal story
about the denials of healthcare that turned her into an orphan, and now she is
fighting for her life against the same board of directors who are making
medical decisions that affect her ability to maintain her health. Let’s begin…
Her Father
was diagnosed with a small spot of malignant growth on the outside of his lung
in 1986. The oncologist at Group Death
recommended a full body scan, due to familial cancer history, and it was denied
by the board that oversees such needlessly expensive procedures. Her Dad was treated, and declared cancer
free…until a year later. Her Dad wasn’t
feeling great, and went to the doctor, who told him to just “take it
easy”. (for a guy who NEVER missed a day
of work for sickness, and had no experience with regular healthcare due to
vigorous health, this was expected. It
couldn’t be anything serious, right?)
This continued for 8 months, until the woman’s Dad had to put his foot
down and ask for some tests to see why he was feeling worse and worse. Of course…it was cancer. Lymphocytic carcinoma, metastasized to every
major organ and all his bones. They had no idea where it originated from, it
was all over and the Dad had a very short time to prepare. He died at 48 years old. Could he have survived, with a PET scan 1
year and 8 months earlier? Perhaps. Guess she’ll never know.
Fast forward
to 1992. The woman’s mother was in need
of a very large hernia repair, sternum to pubic bone. Her doctor tried to get approval to do a
lung-scan prior to the surgery, because the normal surgical approach could
compress the patient’s lungs, and the suspected a severe case of emphysema in
the patient’s lungs. The procedure was
denied by the board that oversees such needlessly expensive procedures. The surgery did indeed compromise the
patient’s lungs, and kept her in-patient for 14 days as her lungs would not
re-inflate due to severe emphysema, also known as COPD. The result was that the lungs never
re-inflated, thus decreasing the capacity to move air, putting strain on the
patient’s heart. The disease progressed
much more rapidly due to inability to do any sort of exercise that strained her
need of air, as her heart would work so hard she would pass out. She passed away from coronary complications
of COPD, at age 65. Could the woman’s
mother have survived a longer lifetime, pain and heart-problem free? Perhaps.
Guess she’ll never know.
Now we
arrive at the present. The woman has
been diagnosed with Diabetes, high blood pressure, and COPD. She is 53, and works hard to stay fit and
vital. She was only able to afford Group
Health / Kaiser Permanente health insurance, and knows she has a fight on her
hands with this insurance HMO and some chronic health issues.
Kaiser
Permanente has switched her insulin from one that was a long lasting Lantus
insulin to one she must use 2x a day instead of one. More needles, more insulin, more money out of
her pocket. Then the medicine the woman
had used successfully to treat her COPD is no longer covered, and she has been
put on a less-effective, more required usage to get good result inhaled
medication. She actually had to fight to
get this medicine at all, since the doctor doing vacation relief waited 5 days
to answer a medication request for a rx to treat her COPD, and told the woman
to ask the pharmacy for medical advice…
Yep, she was advised to ask the pharmacist what she should be placed on
for a critical need. The woman knows if
she had not called the nurse line and gotten some emergency help, she could
have died from lack of oxygen.
Can she
survive the downgraded meds for 2 deadly chronic illnesses, the vacation relief
that takes zero responsibility for the patients they are to care for, the
increasing amount coming out of pocket for less coverage and benefits? Probably not.
However…she is not a complacent patient.
She won’t just take “no” for an answer, if she feels in need of medical
attention. She knows how to
self-advocate and will, without a doubt, go into the clinic and throw herself
down on the floor, AGAIN, and have a
fucking fit, should this prove necessary, or should she feel she is being
marginalized due to her health conditions.
She’s been treated better on Obamacare through Molina Health in the
past. She has had access to better care
all her life, and will accept nothing less.
Bless you
for listening to why Kaiser Permanente / Group Death should be dismantled and
sold for pig-food.
And now to my brother...
He has been having INCREASING back pain after multiple surgeries, and for nearly 2 years has been going to his Dr and requesting an MRI to see what is going on in there...which his Insurance carrier refused each time the request and INSISTING that he needs physical therapy EACH time when he has already told them that the PT does NOTHING but INCREASE the pain. So finally he assented and did the PT...and the insurance STILL declined to spend the money on the MRI. This continues for probably 8 evolutions until the events of January 2019. I and the rest of our brothers feel that this egregious failure of the healthcare system at the behest of penny-pinching for-profit healthcare may have killed our brother...or as one put it, "the for F-ing profit Healthcare system may have Murdered our brother." The 2015 MRI showed no signs of issues.
A letter from him last Friday:
Well, some less
good news. About three weeks ago, I was bending down to pick something up, and
something in my back went, “pop”, and then it hurt like hell. I took some extra
drugs and hobbled off to work anyway, but by the end of the day, I couldn’t
stand it anymore, and had the wife take me in to the hospital.
They gave me some
meds and took an xray and waited for the meds to take effect. They weren’t
doing the trick, so they gave me another dose, then the doc came by and said
that I had fractured my L2 vertebrae, and that they were taking blood samples
and giving me a CT scan.
If you notice,
the L2 has what looks like a big hole in it. That’s sort of the case. It has
essentially demineralized, and is kinda soft. The doc said based on that image
and some proteins in my bloodwork, that, “you probably have cancer called
Multiple Myeloma”, and recommended I see an oncologist.
LOTS of blood
work, tests, a bone marrow sample (5”, 14 gauge needle into the pelvis), a full-body
X-ray survey, an MRI, a full-body PET CT, and they have confirmed that I do
have stage 1 Multiple Myeloma, a blood cancer (specifically, the plasma cells
grow out of control, attacking the bones and the kidneys.)
So far, the L2
looks like the only bone that is affected (at least to this degree), and it
hasn’t attacked my kidneys yet, so prospects for long-term survival can be
quite good (5 years is 70%, 10 years is 50%), some folks make it 20-30 years.
Unfortunately,
this cancer is never considered ‘cured’, and basically everyone relapses
eventually. It can be treated again, though the second treatment is usually a
little less effective than the first. Depending on how quickly you relapse,
they can either use the same treatment, or a different, stronger, and more
harsh treatment.
Lather, Rinse,
Repeat.
So, at the
moment, I’m looking forward to a standard treatment plan of: Radiation on the
affected bone(s), followed by 3-4 one-month rounds of a three drug cocktail.
After that, they give you a drug to stimulate the production of stem cells, and
they take a week to filter them out of your blood and freeze them to use later.
Next is a massive dose of Chemo to kill all the remaining cancer, and your bone
marrow. Once confirmed that it’s gone, they put your stem cells back in, and
the cells rebuild (hopefully) a healthy blood supply, free of cancer. The stem
cell process and recovery takes two months, mostly isolated since I won't have
an immune system after the chemo. There is about a 1% chance of death due to
complications during or directly after the stem cell part of the treatment,
primarily from infection, or bleeding/clotting issues. (and that’s if you use
your own stem cells. If you can’t produce enough, and have to use cells from a
matched donor, like a relative, then the percentage jumps to 25% because the
donor stem cells could see your body as foreign and attack it.)
If the treatment
is successful, I’d be on some kind of suppressing medication, and be monitored
periodically, forever.
At some point, a
spine specialist will go in and inject some plastic compound into the damaged
L2 bone to fill in the hole, and will probably also do some work on my L5-S1
fusion to clean it up a bit, do something about the new disc bulge/herniation
at L4-L5, and probably install a nerve stimulator implant to knock out the
chronic pain I have in my low back and right leg. That will hopefully reduce
the amount of pain medication that I have to take, which will un-burden my
liver and kidneys a bit (they’re going to need all the help they can get).
So, I’m going to
get to explore the Wide World of Medicine a lot more… whether I like it or not.
I’ll keep you
posted.
