hi oscar
TRANSCRIPT
-
7/30/2019 Hi Oscar
1/3
Hi Oscar,
Thank you so much for responding. To even begin to know where to start with my daughter's
story is overwhelming. She is 21 so you will need to communicate with her directly but I will get
you started.
Her name is Katherine Olivia Berry member # 03120138
Her story begins in San Francisco, Sept. 2010 where she had a temporary Nor Cal id# in order tosee a Dr while at college. She was experiencing unexplained fatigue, darkening of the skin,
profuse vomiting and was told by her campus Dr. she appeared to have something called
Addison's Disease. She then obtained an appt. with a GP at Kaiser in SF and told him what hersymptoms had been (she had already been to the ER once but sent home with anti nausea meds)
and that she was told she should be tested for Addison's. Dr. Lee a GP with SF Kaiser told her it
was highly unlikely but he would do blood work. Katie assumed he had tested for Addison's but
we would eventually find out he never did. He didcall 2 days later saying she appeared to have
an autoimmune condition and that her thyroid was low so he put her on Synthroid.
She continued to battle profuse vomiting and fatigue, was unable to attend classes and after 2more trips to the ER, being tested and questioned about recreational drugs, finding nothing was
given anti nausea meds and again sent home. She eventually, November 2010 went into full
adrenal failure after vomiting alone in her room for days til a neighbor heard her crying that she
was dying. She was rushed to the ER where this time it was an ICU case and eventually afterhundreds of tests, 5 days and overmedicating her to a physchotic incident level, they called in an
Endocrinologist, Dr Kanter and he took one look at her hands and darkening skin and said let's
test to be sure but I think it's Addison's. We were shocked. All along we assumed her SF KaiserGP had done that test.He was handed a rare disease diagnosis and did nothing; he could have
killed her. Her poor body, her vital organs had been through more than most people survive.
On the day of her release the Chief of Medicine at SF Kaiser came into her room and apologizedfor all she had been through and wished her well. The entire team of Dr's came in. At the time
we were too exhausted to realize this was a big deal to get an apology, or even meet someone of
his level. We just wanted to get her out of there and bring her home to Orange County.
Fast forward through the next 2 years to present. Not one Endocrinologist or E.R. Dr. with any
great knowledge, advice on management or real experience with Addison's and more than 30visits and stays in the hospital, and she has been mostly left on her own to find medical research
and information from teams in Europe and even here in the US at Duke Medical who are
focusing on Adrenal Disease. The problem we've encountered at Kaiser is that allof the
Endocrinologists are highly focused on diabetes and have very little knowledge of autoimmunediseases. Dr. Olerich at Irvine Kaiser was supposed to be knowledgeable but was very flippant
about Katie's hospital emergencies and said "just take your hydrocortisone and you should be
fine" with no regard to investigating her case further.
Katie's current GP, Dr. Loza at Kaiser Medical Harbor McArthur has probably been the best and
only Dr. to pay attention and do his best to manage her. He has been instrumental in learning
-
7/30/2019 Hi Oscar
2/3
everything about her case and making sure Dr. Tan (her current Endo) makes appropriate
changes and additions to her meds.
So, what can Kaiser do for Katie?
* A medical referral to an Auto Immune Specialist.
* Her medical records corrected so as not to reflect an unfair history of many, many
misdiagnosis during her 2 years of mismanagement. Before
Dr. Loza became her GP, Dr's who refused to learn more about the symptoms of adrenal
crisis continued to claim she had other rare conditions, Cardio, Gastro, Neuro, etc. all to be
ruled out after putting her through many grueling tests.
* It is Katie's wish for Kaiser to create an Auto Immune Disease Center for research as
well as treatment. For Kaiser Dr's to have a greater knowledge of these diseases as well as
early prevention. DUKE MEDICAL now has a pediatric endocrinology dept teaching
pediatricians to look for early signs so as to prevent full blown Addison's Disease later inlife. A foundation was created after a 20 year old young man died of his Addison's crisis.
He was never diagnosed until an autopsy. If Katie's pediatrician, Dr. Nigel Kent with
Kaiser had known that her occasional dizziness, fatigue, unexplained vomiting without the
flu were signs of adrenal fatigue, it likely could have been treated before her adrenal glands
were completely atrophied.
* And, finally, we, as a family would like a person to person meeting with member services.
Katie's young life was needlessly put on hold for the past 2 years. It has cost us thousands
of dollars, lost scholarships at Chapman University where she's now on medical leave, and
an emotional roller coaster for the entire family. Thirty times in the hospital? In 2 years?
It's been a nightmare. We are now faced with applying for new medical coverage as our
COBRA plan is due to expire. So, a personal meeting would be helpful.
Please let it be known that we are thankful for many services Kaiser has provided over the years,
but handling a rare disease has not been handled well at all. It was impossible to see a specialist
outside the system, yet they seemed to be just fine with all of the Addison's crisis Katie wentthrough. It seems in the end it cost them more. It certainly cost Katie more.
On a final note, her medication has been changed and altered after much demand that DR. Tanpay attention to the fact that Katie was not well..now suddenly she seems to be doing much
better. Why, oh why could this have not been done sooner?
Sincerely,
Brenda Berry
714 334-1202
Katie Berry714 334-9699
mailto:[email protected]:[email protected]:[email protected] -
7/30/2019 Hi Oscar
3/3