Cynthia's Story

I wanted you to know--maybe spread the word, I know it's already out there--that
many have had a lot of trouble with Depakote, including me.  Side effects
include weight gain, tremendous fatigue, hair loss, short term memory loss.  I
had even more problems trying to convince my psychiatrist I needed to be on
something else.  But I have a story to tell that has made a profound impact on
my life.

Recently one Wednesday morning, I was awakened at 6:00 a.m. with severe right
lower quadrant pain.  I thought I was having an appendicitis attack.  I
considered calling EMS but thought I would try a heating pad.  This didn't
work.  I tried moving around in different positions in bed, but nothing helped.
Finally, after a half an hour, it went away.  I called my M.D. and scheduled an
appointment for that day.  He thought I had had an attack of constipation,
though he did offer other possibilities.  He took me off the Wellbutrin that was
prescribed by my psychiatrist because he thought this was the source of my
problem.  He prescribed colace and fiber after I had had no success with
Lactulose because I couldn't get it down.  He had also been treating for some
time for blood in my urine.  This condition seemed to have resolved.  I might
add here that when we did my physical, I was the one who suggested the
urinalysis, which revealed the blood.  I might also add that when I first
started seeing this doctor close to two years ago, I told him I had a history of
bladder difficuties and had been diagnosed previously with interstitial
cystitis, or chronic inflmmation of the bladder.  He did not seem to put much
stock in the diagnosis.

Saturday morning, the same pain attack  occurred.  After about an hour plus of
agony, I called the M.D.'s answering service, only to learn that my M.D. was out
of town.  I asked for the doctor covering for him to call me.  That doctor said
it was impossible for him to tell what was wrong with me, so he told me to go to
the ER.  I just barely made it to the ER, which was about a mile away from my
home.  There, they gave me excellent care, including pain medications and
x-rays.  The doctor told me I had kidney stones and hopefully would or had
passed them all. They gave me a device to strain my urine an told me to go to a
urologist on Monday.  Sunday, I was over in Mexico tutoring some students.  I
felt very ill the entire day with urethral and genital spasms.  That night, I
called the M.D.'s answering service and asked them to please leave a message for
him at home--he was still out of town, I was told--but they said I should wait
and call Monday morning.  I asked for the doctor on call to telephone me.  I
told him what had been diagnosed at the ER and asked him if he could leave a
message for my doctor to call me as soon as possible because I believed I was
"in trouble."  He, too, said the doctor was not in yet.  He would probably be
very tired after attending a conference, and that I should wait until Monday
morning.

I started calling Monday morning as soon as the office opened.  I got no
response from the doctor or his nurse until I had called back twice.  Then, the
nurse called me and said he was going to prescribe some pain pills for me and
that I should go to the ER and get the x-ray report sent to him.  His office, by
the way, is 30 miles away from my home.  I asked him if I should pick up the
x-rays, too.  He said, no, just get the report sent to him.  I did this.  I
waited and waited all afternoon, still experiencing pain.  Finally; close to
closing time, the nurse called and said he was consulting another doctor and
would call me.  Finally, at 4:30 or so, he called and told me both my kidneys
were backed up with urine and that I needed to be hospitalized immediately.  He
asked how quickly I could get up there to get the admission papers.  I told him
I had to arrange my life first, as I was scheduled to leave Tuesday to deliver a
paper at an international conference.  This was also the beginning of final exam
week, and I was scheduled to give a final that evening.  I quickly made what
arrangements I could and left close to 5:00, arriving at 5:30.  I met him in the
parking lot, on the fly, as he "had to run."  I told him how concerned I was,
but he said everything would be all right, that he had to go, that I also had a
cystocele (my bladder has dropped into my vagina), and that could be taken care
of too, though he didn't say when.  I went to his office to pick up the
admission papers.  I also asked for a copy of my x-ray report from the other
hospital.  When I read it later, it said I had "moderately severe
hydronephrosis" in both kidneys, in addition to the cystocele.

Later, I was to learn that the M.D. and the surgeon did not coordinate, and I
believe I went through a needless surgery.  Though a written radiology report
confirmed I had a kidney stone in one ureter and that both ureters were backing
my urine up into my kidneys, a sonogram taken later in the hospital  on the
orders of my M.D. indicated I had already passed the stones, and that I had no
hydronephrosis  (urine backup), but the M.D. evidently did not communicate this
to the surgeon. The only reason I learned of this is that the person doing the
sonogram was training a new person, so I heard everything.  They did confirm I
had a kidney stone "on the right," but found something unidentifiable "on the
left"  When I met with the surgeon late Tuesday afternoon, it became evident to
me he did not even have a copy of my radiology report from the other hospital.
I mentioned I had it and showed it to him.  He asked me if he could keep it!  He
did not have the x-rays because the M.D. told me to just sign the release  for
the written report and not worry about getting the x-rays.  Based on the written
report, the surgeon told me I had a very serious condition, that it had probably
been developing for some 10 to 15 years, and that if I had not just eaten
dinner, he would take me into surgery right now.  He scheduled the surgery for
about 11:00 p.m. that night.  I did wonder about the lack of hydronephrosis and
the somewhat vague location of the kidney stones I heard from the person doing
the sonogram, but I assumed the surgeon had a copy of the sonogram, as it was
done much earlier that day.  I also assumed the surgeon had been in close
contact with the M.D.  Not so.

I was very upset afterwards, particularly because the epidural was supposed to
last only 2 to 2 1/2 hours but lasted close to 7, and because nobody would tell
me the results of my surgery until 16 hours after I had recovered from the
anesthesia.  My M.D., rather than acknowledge his communication error with the
surgeon and his failure to touch base with me for the abovementioned 16 hours,
tried to pass his neglect off as business as usual.  When I called his office
for some information, the secretary, at my request, said she would contact the
surgeon's office, but after touching base with her twice and getting no
information,  I finally said I was going to leave the hospital and called
Patient Relations to express my dissatisfaction. Their representative contacted
the nurses, and eventually, the surgeon's office called me to tell me they had
found nothing when they performed the surgery.  It was at this point that I
realized the M.D. had not communicated with the surgeon except to give him some
information based upon the written radiology report, or so it would seem.

When the M.D. finally came at about 4:00 p.m. ( recall I had had emergency
surgery at 11:00 p.m. the previous night), he told me that he could tell that I
was not "a frequent camper" in the hospital, or I would know that such waits are
par for the course and that I needed to be patient.  Then, as I tried to
communicate with him about what I perceived to be his lack of proper management,
he kept interrupting me, first telling me that I was the healthiest patient he
had, and then that he just had a patient with cancer die, and that this
patient's ureters were eaten away by cancer, and that I didn't know how lucky I
was!  The more I tried to talk to him, the more he would interrupt me until I
finally broke down and told him through many tears that he was now and has been
for the time I have been seeing him insensitive to some of my medical concerns,
particularly my weight gain and my exhaustion.  He told me he would send me to a
bariatrics person and then do a complete metabolic profile the next time I
visited him.  I should remind him, he said.  I then told him that I was also
upset because he seemed to be putting me off, leaving me to be at the end of his
list on Monday, when I was admitted, despite a rather detailed and urgent call
to his office early that morning; dropping in only for a brief moment on
Tuesday, to tell me nothing, really; and now, at the end of  Wednesday.  As I
was still crying, he asked me if I wanted him to call my psychiatrist.  "You
know, you are not yourself!  We see you.  We know you.  You are not yourself."
I said no, that I did not want him to call my psychiatrist.  If I felt I needed
to call him, I would do so myself.  I felt I was being patronized.

After he left, I  placed a call to the psychiatrist who, I forgot to mention,
did come to visit me that morning.  He had told me he read my report that
indicated I had kidney stones.  I then asked for my M.D. to come back to my
room, as I saw him in the hall.  He did so, and I told him I was very upset
because he seemed to have no time for me.  This time, I was not crying.  We
tried to find a meeting of the minds.  I continued to get  the impression he was
too busy to give me proper care.

As he was leaving, the surgeon came in.  We had a very pleasant visit. He told
me he understood perfectly why I was upset--I had anticipated the worse because
no one had contacted me during the day, and I had expected to hear the worse
possible news from everyone at the end on the day, when they could all get
together.  He told me the results of the surgery, and that he had expected to
find those problems indicated in my x-ray report, but he found nothing but one
very small stone in my right kidney, which he could not get.  Hopefully, he
said, I will pass it on my own. He also told me that in addition to having a
cystocele, I also had a rectocele (rectum has ruptured into the vagina), and
that I should see a gynecologist about having these surgeries.   After he signed
me off, he said I could leave as soon as my psychiatrist signed me off.  It was
then I had figured out the M.D.--well, I should say he is really a D.O.--had
called the psychiatrist anyway.  The surgeon expressed interest in seeing the
x-rays themselves.  I said I would get them.

Then, the psychiatrist called.  He seemed put out .  He said he had seen me
earlier that morning and I was fine.  He almost seemed angry, at least irritated
that he had to call me again. "Are you fine,  he asked.  "Yes, I am fine," I
said.  I could tell there was no point in saying anything else.  So, I was
discharged Wednesday evening.

The next day, I picked up the x-rays from the emergency room of the hospital I
had originally gone to and scheduled an appointment to see the M.D..  I also
brought him an email I had received from someone I had communicated with on the
Mental Health bulletin board about Depakote. He pushed it back to me and said he
didn't trust much he read on the Internet.  I said I thought this might be a
place for us to start concerning my exhaustion and weight gain. He said I should
show it to the psychiatrist.  I told him I had already left a copy with him.  I
asked him to at least read it.   He stood up and said, "I am insulted!  I have
done all I can do for you.  Today is a 'freebie'.  I want you to get out now!",
as he motioned repeatedly with his arm for me to leave.  I kept asking him if we
could talk about this, but he kept motioning me to leave the examining room.
The door had been left open, so the entire staff could certainly hear
everything.

As I left the examining room, he said in front of the entire office, "Cynthia,
you think you are a prima donna.  My office and my staff have bent over
backwards for you.  I will be sending you a letter."  And then, again, in front
of the staff and in a voice loud enough for the waiting room and anyone else in
an examining room to hear he said, "Get out!, Get out!," motioning with his hand
again and again at the door, once again refusing my efforts to talk with him in
private.

He fired me in front of his entire office the day after I was released from the
hospital.   I broke down completely with two hypomanic episodes at the surgeon's
office, where I  had gone with the x-rays after this horrible experience, and
they called the psychiatrist, who was "really backed up today."  He sent me to a
psychologist, who was very supportive and understanding.  I felt that my M.D.
had taken advantage of my bipolar disorder, for he called me a prima donna, told
me that I expected special treatment, and yelled at me while repeatedly pointing
to the door, saying, "Get Out!", "Get Out!", over and over again, as if I were a
sub-human, an animal..  The psychologist, a very kind gentleman,  told me that
he  had been practicing in this city for only five months, but he had heard more
stories of poor medical care in these five months than in the 30 years he had
been practicing in another state!

The next day, I met with the surgeon to go over my treatment and look at my
x-rays.  He said, in essence, he did not agree with the report about my left
kidney, but my right was backed up, but not as bad as the report indicated.  As
he did not look at all the x-rays, and as he seemed just somewhat involved in
what he was looking at, I started to get a picture that they all were beginning
to close ranks on me.  To his credit, he did offer to find me another primary
care physician.  And, when my back pain was to severe to tolerate, he
immediately responded to my call for help after hours.

 I also went to the gynecologist that day.  He did a quick exam--another cohort
in this conspiracy?--and said, yes, I had both a cystocele and a rectocele, but
they didn't require surgery.  I told him I needed a well-woman exam, including
a  Pap smear.  He did the Pap, but did not examine my breasts nor discuss the
annual mammogram.  He did, however, discover a yeast infection and gave me some
prescription for that   Out the office I went, happy at least that I would not
have to undergo another surgery, but upset because I had been led to believe I
would by the M.D. and the surgeon.

When I met with the psychiatrist later that week, we had a rather uncomfortable
time together.  I had the feeling he had communicated with the M.D.--maybe
others-- and that he, too, saw me as a "problem" of some sort or the other.  He
kept talking to me about my medications, reading information out of context from
my files, and trying to convince me that my "extreme exhaustion" was depression,
rather than the side effects of Depakote.  We talked about the Wellbutrin, but
though initially this seemed to help, I again sunk into this horrible feeling of
chronic tiredness, accompanied now by severe constipation. I told him again that
my  M.D. had taken me off Wellbutrin because of the constipation, which he, by
the way,  never successfully treated.

As the appointment progressed, we were interrupted as he took a call from
someone.  Shortly afterwards, after giving me a lecture about expecting too much
from my M.D., who, as you will recall,  kept me waiting 16 hours after my
surgery to inform me that they found nothing when they performed the operation,
he said, "This appointment was supposed to be 15 minutes, and it is now 25
minutes since you came in."  I responded by telling him that he was the one
prolonging our appointment.  I then stood up so it would be clear that I was
prolonging nothing, and then I left.  I really felt he and the M.D., together
with the surgeon,  were trying  to cover their own mismanagement of my acute
kidney condition and my psychiatric condition, blaming my psychiatric condition
for my distress, rather than their failure to communicate effectively among
themselves.

When I got home, I called the M.D. who originally diagnosed and managed my
condition.  Though she lives 60 miles away and has a very busy practice, she was
very willing to become again my primary care physician. After spending nearly
two hours the next day just talking to me,  she changed all my medications,
slowly weaning me from the Depakote, agreeing instantly that it is responsible
for the weight gain and the exhaustion,  and I feel I am on the right road.  I
am now taking Neurontin 600 mg twice a day and Florinef, 1/2 of a 0.1 mg pill.
I was also on Remeron, but even with cutting the pills in half, I have been
sleeping 10-12 hours a day.  So, we are discontinuing that for two weeks and
then starting Zoloft.

Why am I writing all of this?  Well, I am sure there are others who have tried
to stick with a program of treatment, trusting in their doctors to provide them
with good care, even though they feel something isn't right.  When they speak
up, their doctors brush them aside.  Either they don't know what to do or are
too busy to spend the time working out an alternative therapy.  I absolutely
could not believe how hostile my psychiatrist was when I tried to discuss my
therapy with him.  That, however, became the impetus I needed to seek care
elsewhere.

When I told all of this to a friend of mine, she said, "God leads us down a
straight road through crooked paths."  That says it all!  Like others who suffer
from psychiatric disorders, my goal is to find some measure of peace.  I am
absolutely reconciled to the fact that I will never be completely free of the
effects of this disease, and that I may from time to time have to change therapy
in order to remain stable.  I pursue that goal of peace by trusting
professionals to help me reach it, but some professionals are poor guides for
one reason or the other, and so  I must stop following them and seek the help of
those better prepared to help me.

 I  hope my experience might help others who feel something is just not working
the way it is supposed to.  I say, don't be reluctant to seek help elsewhere if
your doctor seems insensitive to your concerns and your gut feeling is that
something they are prescribing might not be in your best interest.

Though it shouldn't be so, I believe many doctors are running their offices like
continuous-loop production lines, all in the interests of getting through the
workload on time and maximimizing incomes.  Do they ever recall the times we are
kept waiting because they are behind schedule, yet we patiently or impatiently
wait because we feel we have no choice?  Do they ever recall the times our
appointments last less than the mandated 15 minutes, either because there is
nothing to be done this time or they are behind schedule and need to "catch
up"?  And, do they recall the times they must cancel appointments, leaving us to
shift for ourselves until they can see us again? Or, do they recall the times
the secretaries have made a mistake, and we either miss an appointment or show
up for one that has not been scheduled? And, I wonder, how many of those
"mistake" appointments are written up as products of our psychiatric illnesses,
rather than the secretarial errors they really are?  (I always ask for an
appointment card to cover my bases.)  And, finally, do they recall the times we
have called with acute problems, only to find we must wait until they have
gotten through their "regular" day to care for us?

Yes, I do know how lucky I am.  I am lucky lack of concern and lack of proper
care has not resulted in something far more serious than I have suffered.

True, it is an imperfect world we live in, but we and/or the companies we work
for are paying for some pretty high-priced medical and psychiatric care.  We
need to insist we get it.  If I had not been able to return to my former primary
care physician, who is truly a one in a million, I would be INTERVIEWING
psychiatrists and medical doctors now until I found one of each type who would,
at the very least, be willing to spend the time to discuss my treatment,
particularly if I experienced negative side effects from medications he or she
prescribed, and who would promptly return a call from a patient who has never,
in the nearly two years she has been in treatment, called with anything other
than a routine appointment.

My new M.D., by the way, wants me to have a psychologist close by to touch base
with from time to time.  That is, I think, a good idea.  I can honestly say that
since I have been treated for bipolar disorder, I have had no "breakthrough
episodes" prior to this terrible experience in the hospital and later after
visiting the M.D.'s office, but that expense of  three hypomanic episodes
convinced me that, given certain conditions, someone can still push the right
button and trigger such an occurrence, medication or not. One should never
become overly confident!

Colleen, I didn't intend to write so much, but I have.  I guess I have because
this entire experience made me feel as if I were a sub-human species of some
kind or the other.  I recovered, of course, but I still am amazed that those we
entrust with our mental health can take it and use it against us. Yes, maybe
they have had a bad day.  Maybe some patient has died.  But do not take it out
on me!  How horrible for me!   How horrible for others like me!  And I know you
are out there.

Well, I got it all out again.  I guess the again means I haven't quite put it
behind me.  My new M.D. told me that later, when I am on firm ground once again,
I need to go back to the psychiatrist and tell him how I felt during our last
appointment.  I need to do that to heal.  I intend to take her advice.  Maybe I
will leave him this letter after I speak with him.

My message to anyone who needs care is this:  if the therapy you are on does not
seem right for you, speak up, and if you are not treated with respect, then find
another doctor.  Period.  Don't waste your time with someone who seems to be
insensitive to your needs.  Don't believe they know everything and they know
what's best for you if your body and your mind tell you otherwise!

And finally, take the advice of my sister-in-law, a very prominent person
nationally in health care.  If you are hospitalized, and if you are to undergo
surgery, BE SURE TO GET A PATIENT ADVOCATE.   If you cannot find a friend to
serve in this capacity, the hospital should provide you with someone.  That way,
you do not have to wait all day to hear the results of your surgery.  The
surgeon can report immediately to your advocate as soon as you are out of
surgery, and this individual can then tell you the results when you have
recovered from anesthesia.
 

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Owners: 
Allie Bloom, David Schafer, M.Ed. (Blackdog)
Bipolar World Partners:  John Haeckel, Judith (Duff)
Founder:  Colleen Sullivan
 

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