Around 2002, I developed significant symptoms that
required hospitalization. I had extensive kidney stones and a drug-resistant Pseudomonas bacteria. Numerous procedures, surgeries and IV-delivered antibiotics in the
hospital, as well as treatments at home for months after, put the bug back into a box.
However, it was never eliminated. Instead it colonized in my body.
When this occurs, the bug isn't active enough to make you
feel sick. I just became less active and had other ill-defined symptoms, but I was
surviving, more or less.
Sound waves: From 2002 though 2005 I visited the lithotripsy center
numerous times to blast
my kidney stones with sound waves. But this had
little lasting effect. As soon as one stone was
gone, two more replaced it.
More Antibiotics: In early December 2006, I again became very ill.
When my fever passed 104º and I was unable to
transfer from my bed, I called 911 and enjoyed a ride in
an ambulance to Adventist Hinsdale Hospital. I
might mention that the transfer to Hinsdale Hospital was
a new experience as United Healthcare had recently
bought my insurance company (the insurance that costs
over $1,000 a month with $50-$750 co-pays). They
had been in a pissing match with Advocate Hospitals, so
I had to find new doctors and hospitals. Anyway,
the new doctors at Hinsdale decided that all I had was a
simple bacterial infection (despite my telling them my
complete history - in writing) because the urine culture only
showed a simple E. coli infection. After two days
of IV antibiotics, I felt much better. They
decided I could go home with an oral antibiotic.
Stent: After being home for about a week and finishing the antibiotics, I started to decline again.
The oral antibiotic was resumed, and a urine sample taken to culture. Christmas night my fever soared to 105º. I again
dialed 911. The Tri-State Paramedics responded almost before I could take my next breath and transported
me to Adventist La Grange
Memorial Hospital
(another new hospital). The results of the culture showed my good friend
Pseudomonas aeruginosa was in control. I was admitted into a regular room. Within a
few hours of admission, my blood pressure took a precipitous fall. I remember readings of about 60 over 40. They say that's not too good.
Near panic (at least how panic manifests itself in a hospital) set in.
A bunch of nurses and doctors (5-8) from the intensive care unit were all very busy;
they wouldn't transport me due to the crisis.
My single IV line failed, and no new veins volunteered for IV duty, so a surgeon (I
remember that his name was Zawacki) was summoned to my room to install a central catheter.
After it was installed, they started pumping huge volumes of
fluids into me. Fancy drugs were administered to help raise my blood pressure.
The drug use required almost full-time babysitting, but after a
while, I began to respond.
In a few days I was on the road to recovery. I looked like "Marshmallow Man" from the fluids. I had
almost no strength. I had gone into septic shock,
which was likely due to a blockage in my right kidney caused by the stones. This blockage
resulted in bacteria making its way into my bloodstream. To
temporarily correct that problem, they inserted a stent into my right kidney.
After many months
and two surgeries, including more rounds of IV antibiotics, I recovered, more or less
- with a little more emphasis on the less.
When United Healthcare and Adventist terminated their contract, I was forced to find another new set of doctors.
This couldn't have happened at a worse time. At termination I had stones in
only one
kidney. The delay caused by the dispute, plus scheduling delays at the new
hospital (Loyola), resulted in more kidney stones
forming in both kidneys.
Surgeries: I think my single surgery at Loyola was
successful; however, I wouldn't let Loyola treat my fish
because of their careless charting/record keeping and
arrogant doctors, including know-it-all second-year
residents. (There may be exceptions in other
practice areas.) For example, they charted that I
was diabetic and that my blood pressure was 195 over 100
despite the fact that it was never recorded anywhere near that level. It took significant
effort to get these issues resolved. When errors
like these occur, your life could be at risk.
Fortunately after several months, United Healthcare and
Adventist kissed and made up, so I gladly went back
to Adventist.
My next visit to the lithotripsy center was in late March 2008. After extensive analysis of my
urine over several days, they determined that I was making too much of a particular chemical substance. They placed me on a medicine
designed to change my urine's chemistry. It seems to have done the trick
because I did not make new stones for
six months.
However, as of June 2008, the bug continued to
develop resistance. A culture showed a resistance to Cefapime and Ceftazadime,
although a subsequent culture taken within several days did not. Assuming the
worst, this left me with only two effective IV antibiotics.
My view of the situation was somewhat grim.
I was
scheduled to have both my kidneys operated on to flush the remaining stone debris from
them. This debris was thought to be infected with the
resistant bacteria. After these hiding places were
removed, treating the bug should require the remaining antibiotics
to cure me. Although I'm a skeptic, I became hopeful.
In September 2008, having been on IV antibiotics
essentially non-stop for about six months, I had
surgery on both kidneys to retrieve
kidney stones. The surgery was judged successful based on the
operating report. However, it left many, many
stone fragments behind that had settled into the lower
lobes of both kidneys. Further, the bacteria was still present in the cultures. I
asked the doctor what else beside IV antibiotics we
could do. Several therapies were suggested.
Intravescular Irrigation: This therapy injects 60cc
of a dilute mixture of an antibiotic into my bladder
twice a day. Intravascular irrigation is a nice name for
this procedure, which
requires catheterization and then injection of the medicine using
the catheter.
Methenamine Hippurate: The next therapy is
even more interesting.
The doctor suggested Methenamine Hippurate to combat the
increasingly drug-resistant bacteria. This medicine is a time-released variant of
Mendelamine, which I had asked different doctors about using on a number of
occasions, and they had decided
that it wouldn't help. In the urinary tract Methenamine
Hippurate
turns
into a diluted concentration of formaldehyde.
After more than 45 days with no IV antibiotics and no PICC line, my last urine culture didn't have any nitrates, white
cells or bacteria detected. This is remarkable considering
my recent history.
The skeptic in me was right; additional
urine cultures confirmed that the bacteria was still
present. In retrospect, I believe that the
negative culture was a false negative. It simply
wasn't given sufficient time as the clean report
occurred after only two days. All other cultures took three, four
or even five days before the
final report was issued. Anyway the infectious
disease doctor determined that my symptoms didn't
warrant IV antibiotic treatment. Withholding
treatment has lead to a journey that I think is worth
recording.
Lots of Fluids: Bacteria can "colonize" in their host.
This means that the bacteria are living in me but not
causing significant symptoms. Between October and early
December 2008, my temperature remained in my normal range
of 96 to 97º Fahrenheit (I use Braun ThermoScan). At that
time I felt OK, but not great. Then in early
December I voided (see inversion) a significant number
of stone fragments left over from the September surgery.
Almost immediately I took a turn for the worse.
My temperature at times "spiked" to 99.5º (remember, this is more than
two degrees higher
than my normal). I suffered from malaise and was always cold. So
cold in fact, I wasn't comfortable in a room at 76º
wearing two heavy sweatshirts. Despite these
symptoms the doctor didn't think they were significant enough to offset the risks of
treatment.
To say that I "freaked out" would be an understatement.
Another round of IV antibiotics with one of the
remaining drugs and another hospitalization were
almost more than I could handle.
In response and
to feel that I had some degree of control, I
began drinking 150 to 180 ounces of water, cranberry
juice and
other fluids daily. I increased my dosage of Menthenamine to
one gram three or four
times a day, depending on how much debris I saw in my
urine and how I felt. I became obsessed with taking my
temperature. These steps (at least the first two)
seemed to make an improvement.
However, there were days when it was all I could do
to simply exist. Mostly I was in bed.
Usually in the mornings I felt better, and I could be
more active. This phase continued more or
less in a predictable fashion. If I kept my
activity level low enough, I was pretty stable; if I
increased my activity, my condition worsened the
following day.
It was during these worse periods that I began to
notice increased debris believed to be mucus floating in
my urine. It looks like little wispy white clouds
and can be seen with the unaided eye; white cells can't
be seen, but a milky appearance to the urine may be
noticed. My urologist said that in my case they
were not significant. Perhaps they weren't, but
they seemed to be related to my activity level,
fluid intake, medicine dose and not feeling well.
I guess I will never really know. Around the middle of February my temperature
trended down to my "normal" range.
I felt better, was able to live at a more comfortable
room temperature and became a bit more optimistic.
A
couple of significant points:
- Too much water intake can result in low potassium
and/or low sodium in your blood, either of which can pose a potentially life threatening condition. My blood
work indicates my levels are OK.
- I
informed the doctor (albeit after the fact) of my
increased dosage of Methenamine. The urologist was
OK
with my decision and increased my dosage. Incidentally I did consult medical references prior to
increasing the dosage. I believe I was well within the
guidelines.
As an aside a number of years after I first had the
resistant bacteria, I had a phase where the bacteria
colonized with minimal significant symptoms. That
journey included periods of vertigo during the
transition from IV treatment but resulted in my
remaining off antibiotics for about two years.
That period continued until invasive surgery, which
resulted in the months-long treatment. I am
hopeful this may mark such a period!
March 2011 update.
Concerning my colonized
bacteria - March hasn't been a great month, first I became
symptomatic with symptoms consistent with an bacterial
infection and entered the hospital. Early
treatment pending the laboratory results consisted of IV
antibiotics. By the 2nd day it was known I was
septic (infection in the blood) although I was stable
except for a high temperature. By March 3 the
bacteria was identified as E. Coli that had mild
antibiotic resistance and my antibiotic was changed to Ertapenem. The doctors recommended removing the
remaining kidney stones in my left kidney while
continuing with the antibiotics. I was
discharged to home with continuing IV therapy. The
surgery was quickly scheduled and was performed on March 14, 2011.
The surgery was
deemed (by the doctors) successful and I was discharged on March 17, 2011.
The belief is I have no stones, hence no place for the
bacteria to hide from teh antibiotics so this may be a
new chapter in my life and I am hopeful!
April 2011 update. It seems that my
optimism ion March was doomed to be dispelled. A
later urine culture showed the P. areginosa remains.
Further my doctors shifted their position on possible
paces for colonization and my daily medicines. In
part I believe they are operating on incomplete and/or
misinformation (part fo the medical communities of
specialization with multiple doctors involved) at least
as far as I am able to recall or verify.
Accordingly I wrote the letter you can read (Click
this link for the letter) here.
Inversion
Therapy: After my last surgery, inversion
therapy was suggested to help rid me of stone
fragments.
The idea is to elevate the body (head down) at a 35
degree angle, which better positions your kidneys so that
stones that accumulated into the lower lobes can travel to
the ureters and then exit the body.
I was given
instructions
to prop an ironing
board at the appropriate angle and somehow position
myself on the ironing board. I doubt that even an able-bodied person could
do that task safely.
My solution was to purchase a small electric hoist,
bolted through the floor with a pulley attached to the
ceiling, which then is attached to a lifting strap
affixed to the bed. The Chicago Electric Model 44006
hoist is relatively inexpensive and is available from a
variety of sources. It is a self-contained unit,
runs on normal household electricity and plugs
into a standard outlet. For the ceiling
attachment I used two heavy-duty screw eye hooks each rated
at 350 lb. I then inserted a steel bar between the
hooks. The purpose of two eye hooks was to
distribute the load and to allow better alignment
of the pulley than the ceiling rafters allowed (the hooks must
screw into the rafters).
In use the load is likely less than 150 pounds as
the much of the weight is still supported by the bed.
The hoist's hook is attached to a nylon lifting strap.
It loops twice around the
mattress, box spring and bed frame as this cinches
and keeps the items all together when in use.
I am pleased to
report that almost immediately I was rewarded by voiding
some stones. After a few days of treatment, a total of
15-20 small kidney stones and/or stone fragments were flushed from my system.
After I made my design, it occurred to me that I could
have put a sheet of 3/4" plywood between the box
spring and bed frame to avoid bolting the hoist to
the floor; cut the plywood the width of the bed and long
enough so that wood protrudes at the foot and allows the
hoist to be attached.
This solution would need couple of ratcheting cargo straps to strap the
mattress, box
spring and
bed frame together. I
caution anyone who attempts my solution that they do so
at their own risk!
Doctors and Test Results:
It is important to make sure that your bladder is empting fully. This one issue probably has a direct link to my frequency of infection. Do not
rely on the doctor to find this solution. In my case, my position (sitting versus laying prone), the type of catheter and how it is applied, all have a
role.
Question the result of tests. If the doctors are not receptive to
your questions, loose them sooner than later. You don't need prima donnas;
you need partners. For example, the Urodynamics test is designed to determine how fully your balder
empties and what
pressures are developed within your bladder. Too much pressure results in urine backing up into your kidneys. Over the years I have had several of these tests, all with normal values. The last test administered at Loyola was borderline.
I believe those results are flawed because of several factors. I had an active UTI infection at the time of the test,
and over my protests, Loyola required
the test be done in a reclined position rather than sitting or prone, which
is not a normal position for me. Based on the test results,
which showed borderline pressure, they felt I needed
to catheterize myself four-times a day. I did this for two weeks and most of the time there was no urine produced,
which suggested a problem with their diagnosis. I
observed that I emptied better in certain positions than
in others. From that I found I could void fully
(at least to the same level as was produced with a
catheter) by changing my position. I confirmed
this with self-catheterization. The Loyola doctors
were not impressed with this information and told me to
continue with their prescribed procedure. Do I
need to state how I feel about these doctors' abilities
and manner?
The moral of this story - don't be complacent about doctors,
reflux, bladder empting, kidney stones or bacteria.
Lack of Accessibility: Adventist
LaGrange Memorial Hospital has spent "zillions" of
dollars building a new hospital to replace the decades
old facility. Yet as recently as March 2008 when I
was there for an x-ray, I found no accessible bathrooms
serving that area of the hospital. At least the
staff I asked were unaware of any; they directed first
to one area and then to another. Neither bathroom
was accessible and no signage directed me to an
accessible bathroom. In my view this is
inexcusable today.
Lack of Understanding: Another dichotomy is the ignorance
of the nursing
and patient care team regarding my independence and
ability to provide my own care. Sometime during
hospitalization, they invariably ask who takes care
of me at home. When I tell them "I do" and that I
drive, they don't seem to comprehend. If that
degree of ignorance exists in a setting where far more
insight and empathy should be the norm, you can see why
I believe the world remains a hostile place.
Departments Not "In-Network": Another major annoyance is that individual
departments within community hospitals may be
independently operated. They may not be
"in-network" for your insurance though the hospital is
"in-network." This results in your paying more for
services. You really have no say in this because you can't control the specialties within the
"in-network" hospital. This is an abusive
practice. If hospitals outsource, they should
insist on those providers accepting the same benefit
levels as "in-network" providers and not bill the
patient for the excess. This problem does
not seem to exist in bigger hospitals, like Loyola or
Northwestern.
Take Charge: You must
always remember that this is your life that is on the
line.
I have been the victim of broken promises, bad charting, wrong diagnoses, lost paperwork and
medical records, mistakes in billing and poor customer
service. Today's medical landscape involves
numerous doctors, and shockingly the communication
between them in my view is poor. I believe this is
one aspect of a failure in the medical landscape.
For example, when the urologists are done, they dump me to
the infectious disease doctor and the on-going infection
isn't their concern anymore. This is a difficult problem.
It takes tons of effort to get any
cooperation and to convey all dimensions of your
illness. Not every time and not always in the same facility but
often enough to know that you must be your own best advocate.
I accept that its a complicated environment, further
complicated by government regulations, which I am not
sure serve a real purpose.
Often I get the sense that to a lot of the "players," I am the least important
component. The
providers and insurance companies routinely seem to
forget that I am indeed the "customer,"
and the paying
customer as well!
To ensure that doctors orders are entered. you need
to be aware of those orders. You need to make sure
the orders are followed as written. You need to know your
options and the risks. I can't stress how
important it is for you to be in charge of your welfare.
Use any tools at your disposal to learn, learn and LEARN
more
about your condition, various treatments and
possible outcomes.
It would be wrong to end this section with you
thinking that I harbor only negative thoughts regarding providers
and hospitals. That simply isn't true, especially
because I think I have an excellent group of talented
doctors working for me. But unfortunately I think what has happened over time
is that the greedy, the
political, the lawyers and even bad patients with
poor motivations have all discovered that the medical
landscape is ripe to advance their own needs and
agendas. I could pontificate more on this topic,
but I am afraid it would neither be useful nor
entertaining.
