"MY MEDICAL HISTORY"
I became a Kaiser Permanente member in 1977. I had high blood pressure at the
time but was in good physical health. In March 1980 I had a major heart attack at
the age of 39. My physician, at that time, was Dr. Richard Lockmiller. Dr.
Lockmiller said that 39 was a very young age to have a major heart attack and said
it was probably due from stress on my job. I worked for Pacific Bell since 1964 as
a communication technician.
In 1982 Dr. Lockmiller noticed my hematocrit and hemoglobin were raising and
believed I had polycythemia. He then started phlebotomies and sent me to see Dr.
Edward Hearn, an oncologist also at Kaiser. Dr. Hearn also believed I had
polycythemia and ordered more phlebotomies. After 25 phlebotomies and two
years later, Dr. Hearn decided to do a bone marrow test to verify polycythemia.
When the tests proved to them to be negative for polycythemia. Dr. Lockmiller
said I no longer needed phlebotomies. So on 1/22/85 I had my last phlebotomy
thinking there was nothing wrong. Unknown to me at the time was a three page
letter from Dr. Hearn to Dr. Lockmiller dated 10/10/84 it stated in part "whatever
the etiology the patient needs to be phlebotomized at regular intervals to keep his
hemoglobin preferably no higher than 14 grams". It was always higher than 14
grams. During the twenty years I was with Kaiser I did tell the doctors that I drank
alcohol. I was never told to quit but even told to just cut back a little. Never was I
told that my blood tests were showing a problem or that my hematocrit and
hemoglobin were out of range. I did complain about fatigue and stomach problems
throughout the twenty years and I was treated with Cimedadine. I worked for the
telephone company for 28 ½ years with almost perfect attendance. I was offered
an early retirement that I took in December 1992. I have been married to my wife
for 38 years; have two grown children and one grandson.
After retirement my wife and I started traveling. We were able to go to Australia
and New Zealand for the month between December 1993 and January 1994. After
returning home I had another heart attack and had an angioplasty on February 3.
Then again in November 1995 I had another heart attack and again given an
angioplasty. After each of the cardio infractions I was not seen by a cardiologist.
In March 1996 I felt a lump in my right side and by the time I got to the Kaiser
Sacramento hospital it was gone--one hour drive away. In July it was really hurting
so I went back to the hospital and after waiting for hours decided to just see a
physician since it was now after 9 AM. The doctor examined the area and said he
could find nothing wrong and my liver was fine. He then had blood tests run. After
two more weeks it was not getting any better so I went to my family physician Dr.
Richard Fury. He also said he could find nothing as he pushed and felt the liver
area. He also ran more blood tests. I later found out that he ran a ferritin (1246),
transfer/saturation (96%) and iron (256) blood works. I called him a week later
and he told me my blood tests were fine and nothing was wrong.
In October 1996 the pain got so bad that my wife and I again drove down to the
emergency room at 2 AM. The emergency doctor said they could not decided if it
was my liver, gallbladder or pancreas. After about 5 hours and a lot of Demerol
they decided to keep me for more testing. Two days in the hospital and a lot of
tests they told me I had an alcohol problem and I needed to go to rehab. I
informed them that I did drink alcohol but did not abuse it and that I would stop
drinking alcohol on my own.
After a few months and I was not feeling any better I went and had more blood
tests done. Dr. Fury then told me that my liver was a "sick puppy" and would be
fine in another year. I finally saw a gastroenterologist Dr. Sanford Selcon that
talked mainly about the "Captain and his wife" that he knew were alcoholics. He
then informed my wife and I that we were both alcoholics also. Knowing this was
not the truth we made an appointment 400 miles away for a second opinion at the
Sansum Clinic in Santa Barbara. The doctor, Dr. Kinney, took one look at me and
told me he believed my liver damage was caused by Hemochromatosis. He also
said he was surprised that with the blood tests results I had brought with me along
with my bronze coloring that Kaiser would not have ran tests for Hemochromatosis.
Dr. Kinney then told me to go back to Kaiser, start phlebotomies and get on a
transplant list as soon as possible. This was April 18,1997.
On Monday morning we called Kaiser and told them about Dr. Kinney's
diagnoses. By 4 PM that afternoon I was given my first phlebotomy since 1985. I
also went on the Internet and found Sandra Thomas, founder of the
American Hemochromatosis Society. Kaiser also ran a DNA test for
Hemochromatosis. When the DNA test results came back that I was heterozygous
for the H63D. Kaiser said that I did not have Hemochromatosis. I again went for
another outside opinion and saw Dr. Michael Schrader in San Francisco. He said
that Kaiser should do a liver biopsy on my liver because that would prove if I was
iron overloaded and he also told me to get Kaiser to put me on a waiting list for a
liver transplant. I went back to Kaiser and begged them to do a liver biopsy but
Dr. Selcon said, "You will bleed to death having one and you are not a
candidate for a liver transplant because your heart was damaged and it would
probably not survive the liver transplant".
I tried to find a Kaiser doctor that would help me but to no avail. I called the
phone company benefit committee and asked them to get me out of the Kaiser
Plan so I could get good medical care. They said they were unable to do so but
that in September I can change my medical coverage that will start on January 1,
1998. I then waited and signed with Cigna Health.
Meanwhile I had 12 phlebotomies to remove the iron in my liver. I had seen
about 9 different Kaiser doctors hoping that one would help me get on the
transplant list. August 2, 1997 Dr. Dwyer admitted me to Kaiser Hospital with a
diagnosis of cirrhosis secondary to hemochromatosis, ascites, and abdominal pain.
Dr. Dwyer was the first physician from Kaiser that would say that
hemochromatosis was the reason for my liver damage. He said that he was doing
his internship at Kaiser but that he was a pathologist from UC Davis Medical
Center. He also said being a pathologist he sees a lot of patients in the morgue with
hemochromatosis. Before I was discharged Dr. Dwyer set an appointment up with
Dr. M. P. Pauly a gastroenterologist. In mid August I saw Dr. Pauly--after
hours--where she told me that to be evaluated for a liver transplant I would need
to stop drinking, go to rehab even though I had stopped on my own for almost a
full year. She did make an appointment for me to see a cardiologist--the first one I
had seen in years. He ran some tests which showed my heart was not damaged
much and then asked me to have an angiogram. I asked him if he had planned on
going through the groin and he assured me he would. I then asked him how he
could do such an invasive procedure with a loss of so much blood and yet Dr.
Selcon would not do a liver biopsy because of me bleeding to death. I truly
believed that Kaiser would have let me bleed to death while having the angiogram.
I also knew that I would be out of the Kaiser system in just a few months and
would get excellent medical care with Cigna Health Plan. I then wrote Kaiser that I
chose life over death and refused the angiogram.
I did get out of Kaiser on 1/1/98 and signed with Cigna Heath. I then chose Dr.
James Irons (ironically because of his last name). He was very upset because my
health had deteriorated so dramatically. He sent me immediately to Dr. Robert
Gish at California Pacific Medical Center in San Francisco. Dr. Gish and his team
started the evaluation for a liver transplant. Dr. Gish sent me to see Dr.
Heissenhein, their transplant cardiologist, which ran a lot of tests on my heart to
make sure that it would be able to withstand the strain of a liver transplant. I must
add that I was finally treated with respect and concern for the first time in years.
In March 1998 I finally received a liver biopsy that confirmed hemochromatosis.
By April 1998 I was very ill and put in the hospital in Auburn for pneumonia, not
expected to survive. They then transferred me to California Pacific Medical
Hospital. As I was improving one doctor asked my wife why I had waited so long
to be evaluated for a liver transplant and not put on a year earlier. She informed
him that we were former Kaiser patients and that Kaiser had refused to evaluate
me for a transplant. Of course I did make it through the pneumonia and put on the
transplant list. In April 1998 my wife filed a malpractice suit against Kaiser for the
lack of care I had been given. The results of that arbitration can also be found on
this web site.
By July 1998 I became very ill again but this time my kidneys started failing. I
was immediately sent to California Pacific Medical Center to await a liver
transplant. When we got there the doctor assured my wife that I would not go
home again without a new liver. At that time I was given one week to live. I was in
ICU for 5 days when a donor liver was located. On July 10, 1998 because of an
unselfish family I was given a liver transplant.
SURVIVOR OF KAISER MALPRACTICE