Friday, December 31, 2010

"Cinderella"

How many times had I seen "Cinderella" walk down the hallway heading towards the small kitchenette behind the nursing station, with a microwavable pizza in her hand?  Probably, too many to count.  So frail looking, wearing a wig to cover her bald scalp, pushing an IV pole with her free hand.
      As I sat at the nursing station charting another medical note, I was amazed at her resilience.  I had seen a lot of suffering in my work as a physician assistant, but there was something about "Cinderella's" suffering which I could only describe as magical.  She had survived two protocols of intensive chemotherapy which should have put her leukemia into remission, but it didn't.
      "Cinderella" had been diagnosed with acute leukemia.  This meant her bone marrow cells which should have been producing normal blood cells, had instead transformed into cancerous cells. 
      "Cinderella's" hospital room was filled with stuffed animals, shelves of junk food only an adolescent would eat, and several pictures.  One picture that struck me was of "Cinderella" and Chris her "Prince Charming" in an earlier, happier time.
      At first glance, I didn't recognize "Cinderella" as being the young woman in the photograph. The photograph showed a beautiful, thin teen-ager with long silky blonde hair, youthful skin, wearing a stunning prom dress.  Next to "Cinderella" in the photograph was Chris.  He appeared tall, dark haired, proud and immaculately dressed in his tuxedo.
      I had a difficult time imagining Meredith (or "Cinderella" as I tended to call her) as being once so beautiful.  My perceptions had been distorted by seeing her on a daily basis in the bone marrow transplant unit, bald with hardened skin.
      When the intensive chemotherapy did not work, she went through a bone marrow transplant in hopes of being put into remission.  But this created additional problems.  Her brother’s bone marrow cells which had been infused into her, started to attack Meredith’s organs.
      As if this were not enough, Meredith had to deal with the desertion of her family members, and their denial of her being so ill.  One day shortly after I had begun working on the unit, I noticed a 3 x 5 card taped to the front of Meredith's chart.
      I asked one of the nurses nearby, "Why is Chris' name and phone number listed as the first person to contact on this card, instead of her parent's?"
      The ICU nurse replied, "Chris lives closer, and he's so much more of a support to Meredith, than her parents.  They never visit and live sixty miles away.  If I didn't know better, I'd swear, Chris is an angel in human form.  I don't know of any other guy who'd stick by his girlfriend the way he does."
      "Well you're right about Chris!" I stated.
      Meredith was a mere nineteen years of age, and all she had going for her now was her childlike faith in God, and Chris, her angelic suitor.
      Meredith had met Chris several months prior to her diagnosis of acute leukemia.  Chris was Meredith's 'Rock of Gilbralter,' while Meredith's childlikeness portrayed her innocence.  Chris’ presence, and knowing that Meredith had once looked like a fairy princess reminded me of Cinderella, hence my nickname for her. 
      Day after day the medical team I worked with, would make attending rounds and talk about Meredith at length. 
      One day the oncology attending said, “I want to try Meredith on high dose prednisone, I want to give her 5,000 mg a day for three days.  Maybe that will begin to halt her disease process.”
      One of the physicians-in-training spoke up and stated, “That’s an extremely high dose of steroids.  Do you really think it’s going to make any difference?”
      “I’m not at all sure, but what else do we have to offer?” asked the attending.
      “Nothing, as far as I know,” spoke the physician-in-training.
      Despite her poor overall prognosis, Chris stood steadily by her.  He would come to see her in the ICU every day after he finished his college classes.  He brought her groceries, stuffed animals, and news of the outside world.  Many times he would take her out on a pass and they would go for walks outside the hospital, or get a pizza before he would have to bring her back.
      As time went on, I learned Meredith had been a vocalist, and she'd occasionally sing in her room, in tune with some gospel music which was playing.
      Meredith's thick hospital chart was indicative of how ill she was.  Physicians-in-training rotated through the unit, and yet Meredith stayed.
      Finally after being hospitalized for six and one-half months, Meredith was discharged.  She wasn’t any better, but we knew Meredith needed to go home one last time.  We told her she could not go to her parent's home which was a farmhouse, due to it being harvest season.
      So she was discharged to her aunt's house, who lived nearby.  Chris continued his daily visits.  We saw her in our out-patient clinic three times a week, checking on her medications, and assessing her.
      About three weeks after her discharge, Meredith showed up in clinic with a hacking cough and a fever of 102 degrees.  An x-ray was taken, revealing she had a lung infection.  We sent her to the lung specialist who did a bronchoscopy.  The biopsy came back loaded with fungus.  Meredith was started on an anti-fungal medication.
      Every other day Meredith came back to the clinic, to be seen by us.  I saw her during several of these clinic visits.
      "Hi, Meredith, how's it going?"
      "Not too bad.  The new medication doesn't bother me too much, and I'm still able to eat.  Oh, by the way, (pointing to the woman sitting nearby) this is my Mom."
      "Nice to meet you.  I've seen you in the clinic the last couple of times with Meredith."
      "Yes, I'm now coming with Meredith to all of her clinic visits.  It makes for a long day commuting back and forth between here and her aunt's house."
      I perceived a calmness in the room.  I could tell peace had finally been made between the two of them, and her mom was slowly becoming more supportive of Meredith just when she would need it the most.
      Christmas came and went.  I knew this would be Meredith's last Christmas.  I could only hope she had enjoyed it.  A few days later I heard Meredith had a stroke due to a blood clot that had formed in her lungs.
      She was hospitalized in her hometown.  Her parents advised the physicians there to just make her comfortable.  A few days later Meredith quietly passed away.  Her nine month struggle with cancer was over.
      After Meredith’s funeral, Chris continued to pursue his bachelor's degree.  Several years later I heard he had finished it and was working full-time in his chosen professional field.
      I know he will never forget Meredith, nor will I.  "Cinderella" and her "Prince Charming" will live on in my memory as a beautiful love story.  Remembering the two of them together gives me hope that there are other 'Prince Charmings' out there for any woman who needs one. 


Tuesday, December 21, 2010

A Teen-Ager Who Just Wanted to Live


 I was called by my supervising physician and advised to walk across the street to Children’s Hospital and pick up the medical records of a new patient coming into the leukemia clinic.  I retrieved them and brought them over for him to read.  The following day we saw our new patient, a 16 year old teen-ager with acute lymphocytic leukemia. 
I meet her in the leukemia clinic on the 7th floor.  She had gone through a lot of chemotherapy to try to treat her leukemia. 
She had relapsed again after going into remission.  This was her second relapse.  And Children’s had advised her and her parents that they didn’t have anything left to give her to try to induce a second remission.  So she had discussed it with her parents and wanted to come see us across the street in hopes that we could do something for her.

We had come a long way with treating cancer, especially leukemia.  Sixty years ago it was a fatal disease, and now today over 50% of the patients are cured of their acute lymphocytic leukemia.  Our knowledge of what happens on the cellular and genetic level which allows a normal cell to mutate into a cancer cell has vastly improved.  We are now able to follow a normal cell as it transforms into a malignant cell.  This change involved gene activitation, immune system dysregulation and finally mass reproduction of the malignant cell. 

“Good afternoon, I’m Sharon, I’m one of the physician assistants who works in this clinic.  You must be Lisa?”
“Yes.”
“Glad to meet you.  After I see you, I’ll take you down to see Dr. Anderson, the physician you were referred to.  I’ve read through your  Children’s records and I just want to review them with you to make sure that I haven’t missed anything.   Okay?”
“Okay.”
“You were first diagnosed with leukemia when you were 11 years old.  The induction chemotherapy was high dose alpha interferon, followed by vincristine and methotrexate, is this correct?”
“Yes.” 
“How long did you stay in remission?”
“About three years.”
“And when you relapsed, what did they use to put you back in remission?”
“Vincristine, L-aspargarine, and Ara-C.  I stayed in remission for about 18 months and then relapsed again.  That’s why I’m here.  I’m hoping that Dr. Anderson can put me back in remission for good this time.”
“Well, that’s what we plan on doing.  Now let me explain what will happen to you once we admit you for your chemotherapy, how we’ll be doing your bone marrow biopsy and the like.”
“Okay.”
“Once I finish with going over everything with you and answering your questions, I’ll take you down to Dr. Anderson’s office and let you meet him.  After that I’ll take you up to the in-patient floor where the nurses will start your admission process and then call the bone marrow biopsy nurses to come up and do your biopsy.”
“Alright.”

The best chance of going into remission from acute lymphcotyc leukemia is after the first course of intensive chemotherapy.  If a patient relapses after this, their chances of having a long lasting remission or even a cure drops off quite a bit.  That is why after a patient achieves a second remission, they are referred for a bone marrow transplant, which then gives them the best chance of a long term cure.
But going through a bone marrow transplant is not easy, nor is it inexpensive.  Bone marrow transplants require at least several weeks in the hospital as the patient undergoes intensive chemotherapy, whole body radiation and then waits for their bone marrow to regenerate itself after they have received their donor’s bone marrow cells.  After this the patient has to stay on anti-rejection medications and hope that they don’t end up with having to deal with nasty fungal infections in the meantime.

Over the next several weeks, we were able to get Lisa back into remission with a different chemotherapy program.  After spending several weeks in the hospital, we discussed with her the option of having an allogenic bone marrow transplant.  We knew that would be her best option of going into remission and staying in remission. 
After finding out that her family members were not a suitable match for her, we widened our search by putting her on the national bone marrow donor list.  Unfortunately there wasn’t an immediate match there either. 
We continued giving Lisa out-patient maintenance chemotherapy to maintain her remission status, as the national bone marrow registry kept coming back with no matches for Lisa.
I continued to see Lisa in clinic and took care of her, following her blood work results, addressing her infections, and keeping her encouraged about our national bone marrow donor search. 
Eleven months after I started seeing Lisa in clinic, she came in for her usual follow-up, and I could tell something was wrong.
“Sharon, I just don’t feel good.  I have a fever of 102 F this morning and I’m so weak.  What’s wrong with me?”
“Well, we’ll figure that out shortly, Lisa.”
I ordered stat labs on her, did a quick physical exam and started writing up her admission orders. When I saw her blood results I knew that we were at the end of the road with her.  Her blood work came back with 99% blast cells, there wasn’t a single platelet or normal cell in the midst.  This told me that her bone marrow had totally transformed over to abnormal leukemia cells and there was nothing we could do.  I quickly finished writing my admission orders and then paged Dr. Anderson.
I advised him of Lisa’s blood work and he told me to have her admitted to the intensive care unit.  He would meet with her and her parents there. 
I went into the clinic exam room and sat down to talk with Lisa and her mom.
“Lisa, your blood work came back and you’ve relapsed again.  Dr. Anderson wants to have you admitted to the intensive care unit and he’ll be waiting for you there to talk to you.  You don’t have any white blood cells in your blood work which are able to fight off an infection and that’s why you are running a fever.  I’m really sorry.”
“I’m sorry too.  I really hoped something could be done for me.”
“Dr. Anderson is probably waiting for you and your mom by now in the intensive care unit, I’ll take you there.”
“Okay.”
I took Lisa in a wheelchair down to the ICU, where Dr. Anderson meet her and her mom.  I could tell by the look on his face that he didn’t have anything else to offer her.  He sat down and told both of them that he would make sure that Lisa was made comfortable and that she wouldn’t suffer.  He also told her it that it would probably be only a few hours,  maybe a day or so and her suffering with leukemia would be over.
Lisa cried very quietly and silently accepted her fate. 
Within a hour, Lisa was lying in one of the ICU beds, an oxygen mask on her, with a morphine drip going.  Her father by that time had arrived and both of her parents were holding her hands as she over the next few hours quietly slipped from this life to the next. 
Lisa’s mother invited me to her funeral, and I decided to attend.  There were a lot of other teen-agers there.  Her youth pastor stood up and gave the eulogy, talking about how Lisa had encouraged other teens, shown them how to have courage in the face of adversity and in the end had won the final battle, for she was now in heaven enjoying her new found health and happiness.

As medical providers we generally don’t attend our patient’s funerals.  Lisa had been my first patient who had died on me while I was working in the leukemia clinic.  There would be others, but she was my first.  My supervising physician told me that he never forgot his first patient who died under his care from leukemia.  He says patients who die stay with you and make you work that much harder on your research to find a cure for such a devastating disease.  I couldn’t have agreed more with him.  I’ve never forgotten Lisa, and having taken care of her has made me a better provider as I remember how important it was to give her the ‘human touch’ every time I saw her.  Lisa always told me that she appreciated the fact that I wasn’t afraid to hug her.
 
I kept in touch with Lisa’s mom over the next year.  Her parents went through a very rocky period with their marriage, now that Lisa was gone and her mom no longer had to be concerned about taking her to all of her physician appointments, watching over her chemotherapy programs, and all.  It took a year for Lisa’s mom to finally be able to clean out her daughter’s room and give some of the things away that Lisa cherished.  It was during this time that I received a call from her, asking me to come over and have tea with her. 
When I arrived the following Saturday, Lisa’s mom met me at her front door.  We spent several hours together, remembering Lisa and sharing our tears with each other.  Then her mother took out a gift wrapped small package for me to open.  Inside was a journal book and a new calendar for the upcoming new year. 
“Lisa and I knew you always liked to write, and spent time writing in your personal journal books.  So when I came across this journal book, it reminded me of you, but the front cover reminded me of Lisa.  She always loved floral gardens and bending down to smell the blossoms.  And here on the front cover of the journal was a little girl smelling the floral blossoms.”
“Thank you for thinking of me and sharing a part of Lisa with me.  Every time I write in this journal I’ll be remembering her.”
I thought of Lisa and her mom frequently over the next year as I used the calendar I had been given and wrote in the journal.  I never saw Lisa’s mom again and always hoped that she had moved on to live her life the way she wanted to. 

 

A 2 Year Old with an Unusual Ear Infection

I was working in a rural health clinic in Texas when a mother came in with her 2 year old daughter who was having a fever.  Her daughter was very cute, but I could tell that the child was not feeling well, with her holding her hand over her left ear.
“Hi, I’m Sharon, I’m a physician assistant, can you tell me what’s going on with your daughter?”
“Well, she’s not been feeling good for the last couple of days.  She started running a fever a few days ago and she hasn’t been eating very well.  And since yesterday, she’s not left my sight, she’s just been hanging onto my dress and not playing like she usually does.”
“Has her nose been running, or has she been coughing at all?”
“Yes, she’s been coughing for the last week or so and her nose has been running and congested for the past week.  I thought it was a cold at first, but now I don’t think so, seeing that she just keeps holding her left ear.”
“Okay, well let’s see what’s going on then.” 
With that, I looked again at the patient’s chart to check the daughter’s temperature.  The chart said she was running a temperature of 101.5 F.  Putting the chart down, I started doing my physical exam on the toddler.  I listened to her chest and heart sounds while she was sitting quietly in her mother’s lap.  They were normal. 
I took a quick look at her runny nose which was draining yellow fluid.  Her eyes were clear, she didn’t have any conjunctivitis.  Now I had to try a get a look at her throat.  This wasn’t going to be easy. 
Her mom saw what I was attempting to do when I came near her daughter with a tongue blade in my hand. 
“I’m going to have to lay her down on the exam table, she’s not going to open her mouth otherwise.”
“Okay.”
Her mother started to stand up, and with that her daughter started to cry and let out loud wails.  The toddler fought being laid down on the exam table.  Her mom and I had to both help hold her on the exam table.  Once the daughter figured out what we were going to do she locked her jaw shut.   So, I had to slowly pry her mouth open using the tongue blade. 
I finally was able to get a quick look at her throat which was slightly red.  Now I had to get a look at her ears.  I picked up the otoscope and looked into her right ear first.  Her tymphanic membrane was red, she had dark serous drainage behind the membrane. 
Now to the left ear.  Her mom and I both rolled the toddler’s head to the right and as I did this, I felt a definite softness behind the left ear. 
Palpating further it was no mistake the daughter had mastoiditis.  The mastoid bone which is positioned immediately behind the ear auricle was soft and mushy.  This set off an alarm within me.  Her mom held her hands down, while I used the otoscope to look in the toddler’s left ear.  Her tymphanic membrane was ruptured, there was green drainage coming from her ear canal.  Then there was the smell, I recognized it, my memory quickly brought me back to where I remembered it from. 
I had seen a patient in Houston while I worked for an infectious diseases practice who had an infected sternum from his open heart surgery procedure.  His chest wound was draining green fluid from it and it ended up being pseudomonas aeruginosa.  It was a nasty bacteria to have to deal with.  
With that memory in mind, I knew I had to get the toddler into seeing a pediatric ear, nose and throat specialist (ENT) and quickly.  This was one sick child.  I excused myself from the exam room. 
I picked up the clinic phone and called directory assistance for Houston.  I asked for the number to Texas Children’s Hospital and once I had their main number, I called it and immediately asked to be switched over to the ENT clinic.  The receptionist at the front desk picked up the phone.
“Hi, I’m Sharon and I’m a physician assistant and I need to make an appointment for a patient I’ve just seen who needs to be seen urgently by one of the ENT attendings.  She has mastoiditis caused by pseudomonas.”
“Well, there isn’t an opening for a new patient until 3 days from now, will that do?”
“No, this patient needs to be seen within 24 hours.”
“Well then let me switch you back to one of the clinic nurses, and let’s see what they can do for you.”
“Okay.”
When the clinic nurse picked up the phone, I explained to her what was going on with my patient in the rural health clinic which was an hour’s drive north of Houston. 
“Whoa, that’s a nasty infection.  Hang on the phone, let me go talk to one of the ENT attendings, and I’ll be back on the line in a minute or two.”
“Sure, no problem.”
“I talked to Dr. Davids, and he said to tell the mom to get her daughter down here right away, he’ll see her at 3 pm.  Can she do that?”
“Let me go check.  I’ll be right back.”
I knocked on the exam room door, opened it and quickly asked the toddler’s mom whether she could drive south to Houston and take her daughter to Texas Children’s Hospital to be seen by 3 pm.  I quickly advised her that her daughter had a very nasty infection and I needed her daughter to be seen by an ear, nose and throat specialist. 
“Yes, I can get her down there in time, tell them I’ll be there.”
“Wonderful, I’ll let them know.”
I picked up the clinic phone receiver and told the nurse at Texas Children’s Hospital that the mom would be there at 3 pm with her daughter.  The nurse asked me for the daughter’s name, address and insurance information, which I quickly gave to her.  With that I told the nurse thank you very much and hung up.
 I walked back into the exam room and gave the mom the instructions on how to get to Texas Children’s Hospital and where the ENT clinic was located inside of it.  I advised her as to which ENT physician was going to see her daughter and why it was so important for her to keep the appointment. 
She understood and left the clinic to keep the appointment with Dr. Davids.

Otitis media (inner ear infections) is a common infection seen in children up to age 6 or so.  It is typically caused by Strep pneumoniae, Haemophilus influenza, Moraxella catarrhalis or from a virus (adenovirus, influenza, rhinovirus or respiratory syncytial virus).  A major complication from it is infection of the surrounding bone, the mastoid.   The mastoid is located immediately behind the ear and is filled with air cells.  It becomes infected as a continuous process from the middle ear to the mastoid process.  Generally, children under the age of 2 years who have a history of recurrent ear infections are the ones who are at risk for acute mastoiditis. 

The infectious agents that are involved in acute mastoiditis are somewhat different than those infectious agents which can cause inner ear infections.  Bacterial agents involved in acute mastoiditis include:  Streptococcus pneumonaie, Streptococcus pyogenes, Pseudomonias aeruginosa, and Staphylococcus aureus.

If a child has acute mastoiditis they need to be seen by a ear, nose and throat physician (ENT).  Having mastoiditis can involve many complications which includes spread of the infection to the lining of the brain.  Due to the potential severity of acute mastoiditis this has to be treated with intravenous antibiotics   The ENT physician will follow the child to make sure that they have not lost hearing in the affected ear and that there is total clearance of the infection.
    
The following day in clinic the mother was back with her two year old toddler in tow.  She beckoned me over to where she was. 
“Dr. Davids was glad that you had sent my daughter down to see him.  You were right, she does have a very nasty infection.  Dr. Davids took cultures of the drainage and put my daughter on daily injections of Rocephin.  He gave her the first injection in the ENT clinic yesterday and sent these orders with me to give to you today.”
“Okay, let me have a look at them.”
I quickly scanned the physician orders he had written for the two year old.  Dr. Davids wanted the toddler to receive a daily intramuscular injection of Rocephin for the next two weeks and then she was to go back and see him in clinic. 
“Let me get a hold of the visiting nurse association, they’ll have to come out to your house every day and give your daughter the injections of antibiotics.  So take a seat while I contact them.”
“Okay, thanks.”
I picked up the phone and called the local VNA and advised them of the physician orders.  After hanging up the phone, I faxed the orders over to them.  Thirty minutes later they called me back and told me that they had acquired insurance clearance for the next two weeks and they would be out to do the first injection that afternoon.
“Great, I’ll let the mom know to expect you.”

Using Rocephin for a Pseudomonas infection was a very good choice.  The child could receive the antibiotics once a day at home and yet it would last for 24 hours.  The child would also not need to have an intravenous line placed by doing the injections intramuscularly every day.  The child could also stay at home and not be hospitalized.  And as long as the child received appropriate follow-up on their infection, this was a safe alternative to a prolonged hospitalization.

I walked out into the clinic’s waiting area and told the mom who to expect at her home and how to contact the VNA if she had any problems.  With that she left to go home. 
I didn’t expect to have any more follow-up on the toddler, but I was wrong.  Ten days later the mom and her well looking toddler were back in the clinic again.
“I went into the exam room and found the mom with her daughter sitting there waiting for me. 
“What’s going on?,” I asked.
“I can’t deal with it anymore!  Every time the VNA nurse comes out to the house, my daughter takes off running to hide in the nearest closet and then when I end up having to pull her out of the closet she just starts wailing and screaming at the top of her lungs. 
I can’t deal with these injections anymore.”
“Okay, well let me take a look at her and then I’ll see what I can do.”
I did a quick physical assessment of her and found that her fevers were gone, the green drainage from her left ear was gone, the mastoid process was not as soft as it had been and her right ear was normal.  She even had a tymphanic membrane once more on the left side. 
I excused myself to call the ENT clinic at Texas Children’s Hospital again.  Fortunately when I switched over to the clinic and then into the nurse’s station I was given the same nurse who helped me before. 
“Hi, this is Sharon again, the PA who works in the rural health clinic north of Houston.  I sent a patient down there to be seen by Dr. Davids about 10 days ago and he saw her as an emergency.  She’s the one who had mastoiditis caused by pseudomonas.  Do you remember?”
“Yes, I do.  How can I help?”
“Well, I have the mom and her daughter back in my clinic right now.  The mom brought her in due to her daughter having screaming attacks every time the VNA shows up to give her another Rocephin injection.  I was wondering whether you could find Dr. Davids for me and ask him whether there was possibly some oral antibiotic that the patient could be switched over to instead.  The daughter is due to see him on Thursday, 3 days from now.  I took a quick look at her and everything seems to be healing up nicely, thank goodness.”
“Great, let me go corner him, he’s just finishing up with another patient.”
“Thanks.”
Shortly thereafter Dr. Davids came on the line.   “Hi, this is Dr. Davids.  The nurse has informed me that you have my patient back in the clinic.  I’ve been told that she’s a lot better, but fears her injections.”
“That sums it up.  Is there anything else we can switch her over to?  What did the culture and sensitivity microbiology report show regarding her Pseudomonas?”
“Well, the Rocephin she’s on is the easiest one for her right now.  It only has to be given once a day as opposed to putting in a central line and giving her intravenous antibiotics twice a day or three times a day.  Can you try to talk to her mom and advise her that she only needs 3 more injections and then I’ll stop the meds and she’ll be done.”
“And if I can’t do that, what shall I do?”
“Well I don’t want her to have to stop her meds before I would know for sure that her mastoiditis is treated, but if her mom is insistent the Rocephin not be continued for 3 more days, then go ahead and discontinue it and make sure that she keeps her appointment with me in 3 days.”
“Okay, thanks for your help.”
I went back into the clinic exam room and advised the little girl’s mom of what Dr. Davids has just said.  The patient’s mom was in tears as she explained to me how her daughter was terrified of the VNA nurse when she showed up.  I knew the mom was not going to be able to make it through to Thursday which would finish out her 14 days therapy.  Her daughter had already received 10 days of IM Rocephin and that would have to do.  I told the mom that Dr. Davids had given me permission to discontinue the IM injections.
“Thank you, thank you.  You don’t know how much I appreciate that, I’ll finally have my daughter back again.”
“Dr. Davids wants to make sure that you keep the appointment for your daughter on Thursday down at Texas Children’s.”
“I’ll make sure she keeps it.”
“Okay, I’ll call the VNA and let them know to discontinue their daily visits out to your house.”  
“Thanks again.”  With that the mom and her daughter left the clinic. 
A week later I received a follow-up letter from Dr. Davids advising me that he had seen our mutual patient and had determined that her mastoiditis was cleared up and he had discharged her from any further follow-up.    
 
This child has dodged the bullet regarding having any complications from her acute mastoiditis.  Thankfully she had a positive outcome.  Positive outcomes with patients are dependent upon many different factors.  One is that they have to be involved in the process, they need to feel as though they are a part of the process of getting well and that they need to be involved for the positive outcome to come about.  Another aspect which affects the outcome is whether the patient takes responsibility for their own health care, are they willing to make the necessary changes in their life, are they willing to be accountable, return for their clinic appointments, etc.  And a third aspect of whether the patient has a positive outcome or not involves the patient’s feelings towards their medical care provider.  Do they believe you care about whether they get well or not?  Most patients want to cooperate, but they also need to know that you, the provider will be there as their coach, cheering on their success’.   

 

Monday, December 13, 2010

Cultural Differences

While working in a retail health clinic I walked into an exam room to see my next patient on a late Sunday afternoon. 
My patient was a 6 year old whose primary language was Spanish.  He was present with his mother who only spoke Spanish.  The 6 year old, whom I’ll call Jose, also spoke some English. 
His mother spoke to me in Spanish, “Mi nino esta es fevaro y vomito.”  (My son has a fever and is vomiting).
Knowing very little Spanish myself, I replied, “Un momento.”  (Hold on a minute).
With that I picked up the telephone and called our translation service, they would then be able to act as a translator between myself and Jose’s mom.  After letting the translation service know what language I needed, they switched me to a translator who could ask Jose’s mom in Spanish any and all questions I had for her as well as translate any questions and answers she had for me.  So during the course of our conversation Jose’s mom and I were continually handing the phone receiver back and forth between us.
I turned to Jose’s mom and asked, ‘Que problema?” (What is the problem?)
She responded, “my son has a fever, he’s been vomiting, and he has a sore throat.”
“Anything else?”
Yes, he says his head hurts, his nose has been runny and last night he started coughing.”
“How long has he been sick?”
“This is the third day, he started getting sick on Friday morning when he said his throat hurt, and the school called me later that day and asked me to come and pick him up, he was running a fever.”
“Okay.  Well it sounds as though he has the swine flu which is going around the schools like crazy right now.  But let me first ask you some more questions about any medications he’s on, allergies he may have and then I’ll do a physical exam.  After that, if need be I can also do a quick ten minute test to make sure it’s the flu and then we can talk about how to treat it.”
I had barely been able to finish relaying this information to Jose’s mom via the translator, when Jose just burst out crying and yelling in Spanish, “Mama, she said I’m going to die.  I don’t want to die!”
I immediately asked the translator (on the phone) whether she heard what Jose had said.  Thankfully the translator had heard it, and told me in English what he had said.
At this point, Jose’s mom was in tears. 
Suddenly, I had two very upset people in the exam room.  I had to do some quick thinking.
“Why all the tears?”
Jose spoke, “The TV says there are people who are dying from the swine flu.  I don’t want to die!”
“Okay, I understand.  First off, Jose we’re going to treat you with Tamiflu, the medication that we use for the swine flu.  Secondly, you are a healthy kid, you don’t have asthma or diabetes which the kids who have died have had.  It’s been the reason the kids you’ve heard about on TV have died.  Do you understand that, Jose?”

With sniffles, Jose mumbled, “I think so.”
“What part of this don’t you understand?”
“It’s just that’s all I hear on theTV.  All of these people who are dying from the flu.  I’m scared I’m going to die.”
I got up out of my seat, took a step towards Jose who was sitting on the exam table and leaned down to look Jose in the eyes.  Keeping eye contact with him, I told Jose emphatically, “You’re not going to die from the flu, Jose.  The tamiflu you’re going to take is going to take care of the flu.  The tamiflu is going to make you feel better in two days, do you understand?”
“Yes.”
I turned to look at Jose’s mom who was trying to stifle her sniffles.  I picked up the phone receiver again and asked the translator to tell Jose’s mom what I had just explained to Jose in English, which he understood in his broken English. 
I gave the phone receiver to Jose’s mom and she listened to the translator explain to her in Spanish about the tamiflu, how Jose should take it, what to expect and about when he will begin feeling better.
I spoke to the translator, “Please make sure that Jose’s mom understands that Jose is not going to die, that he doesn’t have asthma or diabetes as the other kids who have died from the flu have had.  Therefore what she has heard on the TV is not going to affect her family.”
I gave the phone receiver back to Jose’s mom.  I watched her facial expressions relax as she heard the translator explain to her what I had just emphasized with her.
Fourty-five minutes later, Jose and his mother finally felt comfortable enough with all of their questions answered, tamiflu prescription in hand to leave the exam room.  As per usual, his mother received a call two days later as a follow-up.  She was relaxed and happy to report that he was feeling better and was going back to school tomorrow.

 Primary care clinic visits are scheduled every 15-20 minutes.  Typically within this time period a clinician is supposed to be able to proceed through the patient’s history, physical exam, treatment plan and dispense out any prescriptions the patient needs.  Most of the time this 15-20 minute time slot per patient works.  Unfortunately, usually at least once a day a clinician comes across a patient who takes longer than 15-20 minutes and then the clinician’s schedule is thrown off for the rest of the day.

It would have been unfair and rude for me to cut short Jose and his mother.  I wouldn’t have been able to pursue what was at the root of the problem with Jose and his mother.  I wouldn’t have been able to address the misinformation Jose and his mother had heard via the national/local media about the swine flu. 

Thankfully, I was also able to discuss their misinformation via a translator, which not every primary care office has access to.  I was able to make sure that they understood in words that they comprehended what to do about Jose’s flu, how to take the medication to rid his system of the flu and finally address Jose’s fear of dying.  But, alas all of this takes time, time that is not allotted on the clinic schedule.  Using a translator takes time, addressing a patient’s fears takes time, addressing misinformation takes time, doing patient education takes time.  As a clinician you never know when you are going to come across a patient who needs that extra time, and if you don’t give it to them, you are doing them a grave disservice. 

But time is the one thing that insurance companies, Medicare won’t let you bill for.  You can only bill for one patient encounter at a certain level of complexity, whether it took you 10 minutes, 20 minutes or 45 minutes like in my case.  Your re-imbursement is the same.  In specialty care, the physician can bill for procedures they have done, surgeons can bill for surgical procedures they have done, but primary care physicians who are the gatekeepers of medicine, isn’t their time just as valuable? 

What would Jose and his mother thought of me had I not spent that extra time with them?  I doubt that Jose would have taken the tamiflu, I doubt that he would have been able to calm down and not think he was going to die at any moment, and I can believe that Jose’s mom probably would have left the exam room thinking I was just another example of a rude clinician who didn’t want to talk to her because she spoke Spanish whereas I spoke English.

Primary care clinicians are the gatekeepers of medicine.  If we do our job correctly, ethically and with compassion we can prevent a lot of long-term complications in our patients by allowing them to understand their disease, what to do about it and how to address it.  If we spent the time doing appropriate patient education and counseling who knows how many patients we can spare from having open heart surgery (because they have taken their blood pressure medications, their cholesterol medications), going on dialysis because they have taken their diabetic medications and lost their extra weight, etc. 

If only the insurance companies and Medicare would also understand this, we’d all be better off.

An Unexpected Pregnancy Complication

I was working in a rural health clinic when I picked up a new patient intake questionnaire form to read before I went into the exam room.  The form stated that the patient was an 18 year old female who had just been discharged from the hospital 6 days prior after giving birth to a baby boy.  The form stated that the patient was complaining of shortness of breath. 
I knocked on the exam door and then went in to introduce myself. 
“it says here on the form that you’re short of breath, tell me what’s going on?” I asked the young female. 
“Well shortly after I gave birth to my son.  I started having problems with my ankles swelling and feeling as though I couldn’t catch my breath.  I told the OB residents that this was going on and they just told me that was normal and it would resolve on its own.  My blood pressure was also up, but the OB residents told me that this would also resolve itself.  I was discharged two days after he was born still having some shortness of breath and with my blood pressure still high.  My ankle swelling hadn’t gotten any better either.”
“Okay, so then when you went home what happened?”
“Well, my shortness of breath got worse, my ankle swelling became worse and I started having a fever.  So I went into the community hospital ER across the street here two days ago and they diagnosed me with a urinary tract infection.  They gave me an antibiotic and sent me home.  But I know that’s not what’s wrong with me.  Something else is going on.  That’s why I came here.”
“Okay.  I’ll see what I can do for you.”
I proceeded to ask her some further questions about her personal medical history, family history, medical allergies, social history and what medications she was taking currently.  I then did the physical exam.
The patient, whom I’ll call Amy had some significant findings on her physical exam. Listening to her chest she had a S3 gallop (which means she had an extra heart sound characteristic of heart failure).  Her pedal edema was 4+ and pitting (meaning that her ankles held a large amount of fluid in them and when I pressed in with my fingers and then removed them you could still see where I had pressed in with my fingers for several seconds afterwards).  Her blood pressure was indeed elevated at 150/96.  In addition, Amy was uncomfortable lying down, she was able to breathe better when her head was elevated off of the exam table. 
I sent her off to the laboratory to give us a urine sample, so as to follow up on her presumed urinary tract infection.  While she was doing this, I walked out the back door of my clinic building, went next door, walked in the back door of my supervising physicians office (a family practice) and waited for one of the two family physicians to finish seeing a patient, so that I could run this patient by them, asking their opinion of what was going on. 
“Well,  Sharon the symptoms Amy is having is typical after just giving birth.  Why don’t you just give her a beta blocker for her hypertension (high blood pressure)  and have her come back in two days for a follow up appointment.”
Something in the back of my mind told me that this wasn’t the whole story, but I didn’t know what was wrong with Amy.  I had seen a similar case somewhere and my intuition told me that I had seen a case while I worked at St. Luke’s Hospital in Houston. 
Seeing that I didn’t know what else to do, I walked back over to the rural health clinic next door, walked into the exam room and advised Amy that I was going to start her on metoprolol for her blood pressure, she should continue with her antibiotic for her urinary tract infection and to come back in and see me in two days for a follow-up.

There are many similarities between pregnancy related changes and post-partum cardiomyopathy.  Pregnant women can have a S3 gallop present during their third trimester.  They can also have some mild pedal edema with exertional shortness of breath. Having hypertension is abnormal for pregnancy.  Having shortness of breath while sitting down or just merely walking short distances is abnormal.  Coughing up blood is abnormal. 

Due to their being many similar signs/symptoms between pregnancy and post-partum cardiomyopathy, it is understandable that these can confuse even the best of clinicians .  But for all clinicians they need to really be in tune with their intuition and listen to it when it says, “this doesn’t quite add up.”  We, as clinicians need to remember to always make sure that any patient we see fits the criteria for a particular condition.  If there is anything that doesn’t fit, then we need to re-adjust our lens and take another look to determine what is really going on. 
  
That evening after driving back to Houston where I lived I kept thinking about Amy and what was wrong with her.  My schedule allowed me to be off on Wednesdays so the following day, a Wednesday, I woke up the next morning and with clarity of mind I knew what was wrong with her.  I literally ran over to the medical school library to look up the diagnostic criteria for post-partum cardiomyopathy. 

Now it all made sense, I had indeed seen such a patient at St. Luke’s Hospital while I was working as an infectious diseases PA.  The majority of the patients our infectious disease service consulted on were cardiac patients or those who had received cardiac surgery.  And that is indeed where I had seen this disease in a patient.  It finally clicked with me. 

Returning to the rural health clinic the following morning I was ready to see Amy.  I was armed with two medical journal articles which described in detail how to work up a patient who potentially had post-partum cardiomyopathy.  She was my first appointment. 

I walked into the exam room to see Amy and asked her how she was doing. 
“Not well, “ Amy replied.  “I couldn’t sleep last night except by sitting upright in a chair, I was so short of breath.  Then this morning I started coughing up blood.”
Coughing up blood was one of the diagnostic signs for post-partum cardiomyopathy.  I immediately went to work. 
I sent her for a CXR across the street to the hospital, then off for a EKG reading.  When she came back I listened to her cardiac sounds, she still had the S3 gallop and now had some fine crackles in the base of her lungs.  Her ankle edema wasn’t any better.  I told her to stay put and went outside of the exam room.  I advised my medical assistant to put her on a nasal cannula with oxygen at four liters and check her pulse ox.  I took the two medical articles I had with me next door and advised my supervising physician of what was going on with Amy.
“She has what disease?”
“Post-partum cardiomyopathy.  Here read these articles, they write about how to diagnose it.  She fits all of the criteria for it.”
“I’ve never heard of it.  Are you sure about this?”
“As sure as I’ll ever be.  She needs to be admitted to a cardiology service right away.  I’m going to call the cardiologist up in Temple, Texas and get her admitted.”
“Okay, if the cardiologist agrees with you, go for it.”
I quickly walked back to the rural health clinic, picked up the phone and paged the cardiologist at Temple.

To correctly diagnose post-partum cardiomyopathy the patient must have the following signs/symptoms:  they must be in their last month of pregnancy or within the first six months after their delivery with new onset heart failure with absence of an identifiable cause, and left ventricular systolic dysfunction on echocardiogram.

Patients typically have symptoms of: dyspnea (shortness of breath), cough, orthopnea (needing to sleep with their head elevated), hemoptysis (coughing up blood), or paroxysmal nocturnal dyspnea (shortness of breath at night).

Risk factors include: age >30, mother who is multiparous (mothers who have had more than one child), African-American race, maternal history of hypertension,(increased blood pressure) pre-eclampsia.(ankle swelling, protein in the urine, high blood pressure and rapid weight gain) or eclampsia (pre-eclampsia signs plus seizures). 
 
“Dr. Ambrose, this is Sharon, I’m a PA at the rural health clinic.  I have a patient that needs to be admitted to the ICU under your care.  I believe she has post-partum cardiomyopathy.  She started coughing up blood this morning, she has a S3 gallop, I can hear some fine crackles over her lung bases, she has ankle edema of 4+ which is pitting, her EKG reading shows non-specific ST-T wave elevations, her CXR shows pleural effusions, a widened cardiac silhouette, a history of hypertension and she delivered her baby 8 days ago.”

I had to take the phone receiver away from my ear quickly as Dr. Ambrose started yelling at me to get her up to Temple immediately.  She needed his medical expertise immediately, if not sooner. 

I hung up the phone and went back in to see Amy.  I advised her that Dr. Ambrose had agreed with my diagnosis and that I was sending her up to Temple to be admitted to the hospital.  Amy had a look of relief on her face that finally someone had figured out what was wrong with her.  The ambulance with the EMTs came shortly to pick up Amy and take her 50 miles north to be admitted to the hospital in Temple where Dr. Ambrose was waiting for her. 

I didn’t hear again about Amy’s condition until 5 weeks later, when I picked up her patient chart outside of an exam room.  I was surprised to see her back, I thought she would just see the cardiologist in follow-up. 

I walked into the exam room, “Amy, what a pleasant surprise to see you.  I thought once you were discharged from the hospital, Dr. Ambrose would be doing your follow-up appointments.”
“Well, Dr. Ambrose said that I could alternate my follow-up appointments between him and you.  He told me I could only see you, no one else because you knew what was wrong with me and what to do, which no one else knew. “
“Wow.  So when were you discharged from the hospital?”
“I was in the hospital for ten days.  I saw Dr. Ambrose in clinic about two weeks ago, which was a little over a week after I was discharged.  He told me to come and see you in two weeks, so that’s why I’m here.  Dr. Ambrose gave me these to give to you.”
With that, Amy handed over copies of her hospital record.  I scanned through them to see that her echocardiogram has shown an EF of 30%.  She had been in the ICU for 1 week during which time Dr. Ambrose had given many doses of lasix, started her on catopril, and kept her on oxygen supplement.  Amy had been sicker than I originally thought.  She had lost almost 50% of her heart function, from a normal of 55%, it had decreased down to 30%. 
After I finished looking through the hospital records, I turned to Amy and asked, "So how are you doing now?”
“I feel so much better, I’m finally able to breathe lying down at night and sleep normally. Dr. Ambrose has me on catopril and lasix every day.  My blood pressure is staying down and look, my ankles are now normal!”
“I can see, how nice.  Well, let me listen to you with my stethoscope and then I’ll see what Dr. Ambrose wrote in his follow-up note for me.”
“Okay.”
Amy’s physical exam was normal, her lung fields were clear, her heart sounds revealed a normal S1 and S2 with no S3 gallop.  Her pedal edema was totally gone as was her shortness of breath.  Her blood pressure readings were normal with her on an ace inhibitor and a diurectic. 
“Alright, I see here that Dr. Ambrose wants you to see him and then me alternatively, as you said.  I also see here in the records that he wants to repeat your echocardiogram in 2 months and then again at 6 months post discharge.  Has he talked to you about your not being able to have another child?”
“Yes, he brought that up.  I have a prescription for birth control pills and I’ll be starting those next week, six weeks after delivery of my son.”
“Okay, well then it looks as though your doing really well, considering what you’ve been though.  Seeing that Dr. Ambrose wants to repeat your echocardiogram at 3 months post discharge, why don’t you make an appointment to see him in 4 weeks, which will then be 3 weeks prior to when he wants to do the echocardiogram.  That will give him enough time to get your echocardiogram scheduled.”
“Sounds good.”
“Great, well then I’m glad to see you back.”

Treatment for post-partum cardiomyopathy depends upon when it is diagnosed.  If the patient is in her last month of pregnancy, she usually undergoes delivery of her child.  During this time period she is on beta-blockers and diurectics.  After she has delivered she is then switched over to an angiotension converter enzyme inhibitor which helps address ventricular afterload.  Diurectics are continued.  They are then followed by serial echocardiogram to assess for return of heart function.

Amy stayed on her birth control pills and at six months after discharge her echocardiogram showed her ejection fraction to be 45%, which was still 10% below normal.  I knew not to expect any more recovery of her heart function over this.  By this time, Amy was on 20 mgs of lasix a day and 25 mgs of captopril three times a day.  She had been very compliant with her medical regimen, which pleased me no end.

With the results of her last echocardiogram, Dr. Ambrose brought up the need for her to be permanently sterilized again.  Amy set up an appointment to be seen by the OB/Gyn service at the teaching hospital where she had delivered with the intentions of acquiring a tubal ligation.

Patients who have post-partum cardiomyopathy are at a high risk of having it occur again with any subsequent pregnancy.  This is especially true if patient’s echocardiogram at six months post diagnosis shows that their heart function has not returned to normal.  If a patient has a subsequent pregnancy and post-partum cardiomyopathy re-occurs their heart failure tends to be worse and they face increased chance of dying.  It is for this reason that in patients who do not re-acquire their normal heart function (based on their echocardiogram findings) they are counseled to receive permanent sterilization.

Her next alternating appointment follow-up after she had seen the OB/Gyn service was with me. 

“Amy, I’m so glad to see you.  How are you doing?”
“I have some questions.  I went down to the teaching hospital and saw the OB/Gyn service two weeks ago.  They did a repeat echocardiogram and they told me that I didn’t need to be permanently sterilized.  They told me that I could have another baby without a problem.  So what do I do?”
“Well,  Amy, do you remember my giving you that medical article to read on your disease many months back, when you came to see me the first time after your discharge?”
“Yes.”
“Do you remember what it said about having another child after you have been diagnosed with post-partum cardiomyopathy?”          
“Yes.  That’s why I’m confused.  You and Dr. Ambrose have repeatedly told me that I can’t have another child.  Yet, I went down to see the OB/Gyn service and they told me I could.  So whom am I to believe?”
“Well, let me put it this way.  Who diagnosed you correctly and then treated you in the ICU?”
“You and Dr. Ambrose.”
“Who has treated you since your discharge for your post-partum cardiomyopathy, seen you at your follow-up appointments, monitored your medications, and given you information to read on your disease so that you could understand what has happened to you?”
“You and Dr. Ambrose.”
“And when you told the OB/Gyn service that you were having problems right after your delivery of your son, did they believe you, or just discharge you?”
“Discharged me.”
“So now, are you going to believe the OB/Gyn service regarding your capability of carrying another child to term, or are you going to believe the literature I gave you to read, Dr. Ambrose’s conversations with you about it, as well as my own?”
“Well, now that you put it that way.  I can only believe what you and Dr. Ambrose have told me.”
“Yeah.  So I can assume that you are going to make another appointment with the OB/Gyn service and be sterilized this time?”
“Yes, I’ll go home and make another appointment with them.  And this time, I’ll stick to my guns about it.”
“Wonderful.”

At her next follow-up appointment with me, Amy had received her tubal ligation.  Her days of having children were over at the tender age of 20.  Since her high school graduation she had faced a lot.  She had married shortly after graduating at the age of 18, had a child 11 months later, faced a life-threatening disease, and now at the tender age of 20 would never conceive again.   But at least her 8 month old son would have his mother around to see him graduate from high school one day.  I could take pleasure in that.


Friday, December 3, 2010

One Tattoo Too Many

I was seeing patients in my hepatitis clinic as usual, when I walked into an exam room to see a new patient.  He was a 45 year old Hispanic male who needed to be seen due to a lesion in his liver which needed to be biopsied. 
He was slightly overweight, worked as a factory line worker and lived in a small 2 bedroom house in the northeast part of the city.  He had a wife who had gone through surgery, radiation and chemotherapy for breast cancer two years prior.  She was standing next to him. 
Before I could begin asking my usual questions of the patient, his wife immediately stated, “I can’t live without him.  I don’t know what I would have done without him by my side during my breast cancer treatment.  He can’t die!”
“I see here on the intake sheet that your primary care physician has sent you to the hepatitis clinic due to a lesion in your liver which needs to be biopsied.  Is this correct?”
“Yes.” 
“Well, before I explain to you the procedure and what to expect, let me ask you a few questions.  Okay?”
“Sure.”
“Do you have a history of any sort of viral hepatitis, such as chronic hepatitis B or C?
“Yes.  I was told that I have chronic hepatitis C.”
“How long have you had it?”
“I don’t know.”
“Okay, well then do you know what your risk factor was for hepatitis C?  Did you ever receive a blood transfusion, inject street drugs, or have a tattoo put on, for instance?”
“Yes, I had this tattoo here on my right forearm done about 25 years ago as a way of showing my love for my wife.  It’s a heart with our initials in the middle of it.”
“Is that your only risk factor?”
“The only one I know of.”
“Okay, well then I can pretty well assume that you acquired hepatitis C from that tattoo, which means that you’ve had it for 25 years and this is a long enough time to have ended up with cirrhosis, or end stage liver disease.  One of the complications from hepatitis C is that it can cause liver cancer in patients who have end stage liver disease, which maybe the problem with you right now.”
With that, his wife erupted, she viscously started physically pounding her fists into his chest, and screaming at him that he better not have cancer.  Then she started screaming at him about how stupid he was to have put a tattoo on his forearm.  I was totally taken aback by her action.  I immediately stood up and tried to grab the patient’s wife’s arms and hold them down.  But the patient’s wife was too determined and she kept breaking free of my hold.  Meanwhile, the patient was just sitting mute, unmoving on the exam table, as he continued to just let her beat on his chest.
Finally, after several minutes of her physical beating of her husband, she had used up enough of her physical energy that she was finally worn out and sat down in the exam room chair. 
I was still shaken up from the whole incident, sat back down warily keeping my eye on the patient’s wife.  Whereas the patient continued to have a blank face, empty of any emotion.
“Okay, I have some more questions for you.”
“Okay,” the patient answered.
I proceeded to ask him the rest of the questions I needed an answer to, which included his past medical history, family history, current medications, allergies, alcohol intake, etc.  I then did my physical exam and found that he had a small liver (understandably due to his having cirrhosis or end stage liver disease).  Other than that I didn’t find anything else on his physical exam that was alarming.

I went on to explain to him what the liver biopsy would entail, gave him his laboratory request for the necessary blood work and scheduled him for the biopsy as well as a return clinic appointment in one week’s time when the biopsy results would be known.  After I completed all of this, I asked the patient whether he had any questions, which he didn’t, and then ended the patient encounter.

Chronic hepatitis C is a disease that is caused by a virus which infects the liver.  Over time (usually around 20 years or longer) it can cause liver failure, liver cirrhosis (end stage liver disease), or liver cancer.  If patients are treated for their chronic hepatitis C prior to their acquiring the end stage complications (whether that is cancer, cirrhosis, or failure) they can be cleared of their virus with medications which include a long acting alpha interferon and ribavirin.  Patient’s clearance of the virus is based on the patients genotype, there are at least eleven different subtypes of the virus and they respond differently to the medications, hence they have different long-term response rates. 

Chronic hepatitis C is acquired through different mechanisms.  These risk factors include: blood transfusions prior to1991, intravenous drug abuse, tattoos, sexual encounters, and occupational needlestick injuries.   Most patients who have acquired this infection do not have any symptoms during the immediate period after they have acquired the infection, so patients typically don’t know they have been infected.  Patients usually find out they have the infection if they are tested for it by their physicians based on the risk factors they have, or if they are found to have elevated liver function tests. 

If patients chose to be treated for their viral disease they undergo numerous blood tests to follow up on their liver enzyme tests, and blood counts.  They are seen frequently by a gastroenterologist/hepatologist (physician who specializes in abdominal problems and/or liver disease).  After they complete their treatment they are then followed for  another six months to make sure that they have cleared their virus long-term. 

One week later the patient came back into clinic.  He was accompanied by his wife.  I was prepared.  I had alerted hospital security and they had sent up a security guard who was sitting in the nearby conference room, ready if I needed them.  This was based on what had happened with the patient last week with his wife.  I was afraid that his wife  was really going to lose it when the patient was told the news of his biopsy.   I had also alerted the clinic social worker who knew the patient’s wife from her previous cancer treatments and was on stand-by in case the patient’s wife needed someone to discuss the situation with.

I walked into the exam room and the patient was sitting on the exam table.  His wife was sitting in one of the chairs.  I was hoping she would stay in control of her feelings.  I sat down and told the patient that the biopsy showed what we expected and that he did indeed have liver cancer.   Instantly, the patient’s wife flew into a rage and started running between the clinic exam room walls and hitting them with her fists.  Surprisingly she wasn’t hitting her husband. 
Screaming enraged she said, “you can’t die, you can’t die.  This isn’t fair, I need you here, hear me, I need you here.”
I quickly slid out of the room and grabbed the security guard.  He came in and physically restrained the wife.  The patient during this episode again was totally unmoved.  He was emotionless sitting on the exam table.  With the security guard in the room, I proceeded to explain to the patient that I would immediately refer him over to the oncology (cancer) service.  I advised him that his options would include either surgery, chemotherapy or both. 
I left the exam room, leaving the security guard in the exam room.  I went and told the social worker that she was needed and to come back with me.    Pam, the social worker came with me and followed me into the exam room.
Pam asked the patient’s wife, “why don’t you come with me into my office, I have several things to talk to you about and we can discuss a plan of action for you so that you get the necessary support you need.”
The patient’s wife meekly followed Pam into her office. 
Relieved of his explosive wife, the patient finally turned to me and asked a few questions.
“When is my appointment with the oncology service?”
“I’ve scheduled it for two days from now.  I’ll be presenting your case before tumor board tomorrow.” (This is a gathering of physicians who work in oncology, radiation oncology and surgery who all work with cancer patients.  It’s during these meetings that a coordinated plan of action is determined for each patient).
“How extensive is my liver cancer?”
“Well based on your radiology scans at least one of your lobes of your liver is involved, it looks as though the other two are clear of disease.  But whether you are a surgical candidate will be based upon what the surgeon says, who will see your scans tomorrow at tumor board.”
“Any other questions?”
“No.”
With that the patient left to walk over to find his wife in the social worker’s office. 

Over the next two years the patient received surgery, and chemotherapy.  His wife continued to need time with the social worker almost every week, she had a high amount of anxiety over her husband’s disease.
Then I heard that the patient had been put into hospice care and after several weeks, he died.  The patient’s wife continued to see the social worker and six months later she relapsed with her breast cancer.  Six months later she died. 

Once a patient is diagnosed with hepatocellular cancer it is a terminal disease, with a life expectancy of about 12 months.  Usually by the time that it is discovered it has already spread to other parts of the liver and/or to the surrounding lymph nodes.    
 Risk factors for the disease includes having chronic viral hepatitis B, chronic viral hepatitis C, chronic alcoholic liver disease or non-alcoholic steatohepatitis (fatty liver).  All of these risk factors are present within the patients for about twenty years prior to the patient being diagnosed with hepatocellular cancer.  There are many options available to patients to treat their disease long before they are diagnosed with liver cancer.

For patients with chronic hepatitis B they have treatment options of several anti-viral medications which include epivir, hepsera, and tenofovir to name a few.  For patients with chronic hepatitis C they also have treatment options of pegylated interferon with ribavirin.  For those who have alcoholic liver disease, their option is to quit drinking alcohol.  Lastly, for those patients who have fatty liver, usually due to obesity, patients need to lose weight and keep it off. 

Overall, hepatocellular cancer is one of the most preventable cancers there are.  By treating the risk factors for it, clearing the patients of their chronic viral hepatitis, helping the patients quit drinking alcohol or helping them to lose the excess weight would go a long way to prevent this disease.