It's All About The Patient

When I was hired by Kaiser Permanente over 21 years ago, my father, a lifetime KP employee, told me to always let one thing guide me.  He said, "No matter what you hear, the work we do is ALL about the patient. Sometimes you will have to fight to give the patient a voice, but as long as you do what's right for the patient, everything will turn out in the end." Having had my own voice diminished at one time, his words resonated deep within my soul. I took my fathers words to heart and as I've made my way up the career ladder that advice has helped me stay strong through some very difficult battles with well meaning people who simply forgot to see the patient as a person. Sometimes, I learned, you have to throw away the clinical guidelines and evidence and simply ask the patient how they want us to care for them. When their voice isn't being heard, you need to speak up for them.


Four years ago, I was sitting in a hospital room in the midst of a 6 month battle to help a very special patient fight for her life, my daughter Amanda.  Amanda, who was 12 years old at that time, went from being a happy, healthy, and active 5'2 103lb pre-teen to an 80lb lifeless, hopeless, and very sick girl. 


Her symptoms started off as nausea one morning. No big deal, I thought, I'll keep her home from school for the day and she'll be fine. After three days and a new symptom of persistent itchiness, we took her to the doctor.  "Must be a food reaction" her doctor said. Not really sure which food may be causing it, her doctor suggested we stop the one thing Amanda ate all the time - Special K cereal.  With a change in diet and some over the counter Benadryl, we left hopeful things would settle down.  Two days later, however, the nausea turned in to bouts of vomiting and the itching had intensified. Another doctors appoint and an after visit summary that listed a diagnosis of a stomach flu and we were back at home trying to keep her hydrated. After two more days of vomiting we took Amanda in to the ER for IV fluids. The ER doctor ordered tests, gave her medicine to stop the vomiting and calm the ridiculous itching that was driving me crazy. "Looks like she may be allergic to Gluten." With some basic instructions on how to avoid Gluten, we were sent home. Three weeks, two more PCP visits, and three more ER visits later, Mandy's symptoms increased to the point where she was throwing up between 4-6 times a day even with a gluten free diet. The itching continued, and now she had severe joint pain and headaches. All her labs, except for electrolytes and potassium, were coming back completely normal. Her illness was a mystery. Her pcp, finally admitting she was at a loss, sent in a round of referrals to Allergy, Rhuematology, and Gastroenterology. The allergist found nothing wrong and the rhuematologist told my husband that maybe it was depression or Amanda was "doing this to herself" and referred her to pyschiatry. Amanda, the patient, my beautiful little girl, growing tired of being poked, prodded, and doubted, became quiet and distant. She tried to go to school on the days she felt well enough, but was always sent home part way through the day.  My nerves were fried and I just couldn't take one more call from the school nurse telling me my daughter "looked like death". After a battle with the school to get her records I enrolled her in an independent study program so she wouldn't fall behind. Fortunately, our older daughters who were 19 and 20 at the time skipped a semester of school so they could take turns staying home with her. I honestly don't know how we would have made it through this nightmare without them. I felt like I had let her down. I mean, how could her mom work with all of these doctors and not one be able to fix her? 


Amanda and I paid a visit to the ER at least 2-3 times for IV fluids. They had admitted her twice, but sent her home the next day with the nausea under control no closer to a diagnosis than the first day we took her in. On top of all this, Amanda had developed a new symptom. Sometimes, she would be talking to you and then for no reason, just start staring off in space. Eyes open, but looking at nothing. When I took her in to the Pediatric Urgent Care clinic to have the new symptom evaluated, the doctor came in the room, quickly examined her and, without reviewing her history, said, "She is on drugs." I was floored.  After a very heated argument with the doctor, she said "If you don't be believe me, take her to the ER and they will test her. You'll see." We went across the street and the ER doctor reviewed her chart, came in and talked to us, ordered a CAT scan AND a drug test.  While he was in the room with us, she had one of her staring episodes and he said "she is NOT on drugs, she is having seizures." With a referral to Neurology entered into our EMR, a round of IV's for dehydration, another after visit summary, and a print out of all her lab results for our growing collection, we were out the door.

Nearly three weeks later, we were sitting in the exam room of Pediatric Gastroenterologist Dr. Fredrick Watanabe, a man, who would become our "Dr. House".  By the time we saw doctor Watanabe, Amanda had withered away to 84 lbs. Her tiny bones pushing against her pale skin as if they would poke through with any quick movement.  Throughout all of her other specialist appointments, the doctors directed their questions to us, but Dr. Watanabe sat down across from Amanda and looked her in the eyes and spoke directly to her.  He told her that he believed that she was really sick and he was going to help her get better, but she had to make a deal with him.  She would have to eat, even though she would probably throw it up, he told her to eat anything she wanted, "Just eat." He made her pinkie swear that she would keep her end of the deal.  He put her on a medication to increase her appetite and another to help with the nausea, and scheduled an endoscopy for the following week. The endoscopy showed scaring in her esophagus, but no reason for the vomiting. I was so worried that he was going to give up like everyone else, but instead, Dr. Watanabe became our advocate. 


While at work one day one of my older daughters called me in a panic saying that Mandy had thrown up about 10 times and she couldn't get her off the bathroom floor. I rushed home to find her lethargic and with a barely palpable pulse. I carried her to the car and raced her to the ER again. Her blood pressure was so low they couldn't pick up a reading and she was so dehydrated they pumped 8 bags of fluids. She was admitted to the hospital for the fifth time a little over 3 months into this ordeal. Dr. Watanabe not only came to see her, but went to see the Chief who was going to discharge her once her vomiting had stopped and convinced him that she needed to be kept in the hospital while they coordinated all her care.  He had them assign her to a teen medicine doctor who would meet with me after each of her other appointments to help us understand what was going to happen next. Working on a hunch, he called a friend of his who is a Pediatric Neurologist at Children's Hospital of Los Angeles that specialized in something called "mitochondrial disease".  About 3 weeks later and an extremely thorough consult with his doctor friend who was picking up some shifts at KP to help with some vacancies in neurology, we had his hunch confirmed. After 4 1/2 months, Amanda was officially diagnosed with Mitochondrial Disease.  Finally, after a month of a treatment her symptoms went away as quietly as they came. 


Amanda is now a lively 16 year old sophomore who's looking forward to getting her driver's license in a month. She has her weight back up to a healthier 98 pounds. She had some scary episodes where the mini seizures turned in to tonic clonic seizures, but those haven't occurred for over three years now. This whole experience changed her though. She is more grown up and thoughtful. She has no problem speaking up for herself when she goes to the doctor or the dentist. She tells them exactly what's going on and what she expects to happen. 

When I think back on our journey I can't help but feel blessed that our EMR had already been implemented and each of her physician's, as well as myself, had access to her full medical record.  I am grateful that we belonged to a health plan that understands the importance of integrated health care and that we didn't have to beg for insurance authorizations and approvals. No... every visit wasn't perfect. When her care was sub-par I sent emails to the chief and department administrators and when it was great, I did the same. I became Amanda's voice when she wasn't heard. Though there were times when I doubted we would ever find a diagnosis, we never stopped fighting. Every time I fought for her, I could hear those words my dad told me so long ago... "It's all about the patient".  

The Proactive Encounter program I run for Southern California Kaiser Permanente is so much more than a preventive care program. It's about saving lives and remembering to give our patients a voice in the process. The phrase, "I will not stand idly by" pushes me to be the best person I can so no one is forgotten and everyone is heard. Regina Holliday recently asked me to send her three paragraphs to describe my soul and my tipping point so she could paint my story on the back of a jacket for the Walking Gallery event on June 4th in Washington D.C. This was a tough request for me because my soul is a cumulation of all my experiences, good and bad.  As a domestic violence survivor, I vowed to never let someone steal my voice again. It's in my nature to fight for the weary and be strong for the weak. I've learned that although I work for an amazing organization, it is made up of humans who are flawed just like me. Sometimes I have to fight for the patient just like I did years ago for my daughter. I proudly wear a button to work every day that reminds me that the work we do is ALL about the patient and that together we save lives. I used to cringe inside when someone would share with me a bad encounter with us, but now I sincerely want to know from them how that experience could have been better and I become their voice sharing their story in hopes to improve the care experience and those become a part of me too.  When the right thing to do seems blurred and confusing, I think about what I would want as a patient... What I would have wanted for for Amanda and then I fight for it. All of these experiences are woven together to make up my soul.