Laura 2.0

There were very few tears after I got The Call. Unfortunately, I had been mourning her death for a year.

I was so focused on her dying that I forgot she was still alive.

She, obviously, knew she was still alive. Making plans, buying clothes and bags, planning parties. Death took her despite her unwillingness.

The memorial was beautiful; just like her. It was so.weird to have a 'party' about her, without her. Seriously, I kept waiting for her to pop out from the side of the stage or come running down the aisle and leap to the stage.

Her husband is a lawyer and spoke at the memorial. When he started, he explained the only way he was going to get through it was to remain in 'court-mode'. Strong. Detached. Unemotional. Factual. Being a nurse, I often get this way. My husband calls it 'clinical'. I suppose everyone can do this to some extent. Take emotion out of it and do what you have to do. During her illness, I was too clinical. Seeing her as a patient instead of a person. My cousin. She was a patient, but she was not my patient. With my experience in hospice care, I saw the writing on the wall. Even when her doctor told us she had a month, I knew she wouldn't make that. My knowledge and experience was my Achilles heel.

It has been 16 months since her death. It isn't any easier to accept but time has blurred acute pain. Her voice is fading from memory, no more texts or calls, no more Hand and Foot losses.

Why am I telling you about Laura? Because I want to point out some clues that may help you or a friend or loved one.

1. Persistent cough
I am, now, hypersensitive to patients with ongoing coughs. A chest xray is such a simple, and relatively inexpensive test, to reveal a myriad of possible problems. My recommendation is if a cough is not getting any better in one month, ask for a chest xray. Most coughs should improve in 3-4 weeks. If there is no improvement go see your PCP.

2. Vocal changes
This can be attributed to many etiologies, but it needs to be addressed. Cough with vocal changes needs to be assessed. Go see your PCP.

3. Unexplained loss of consciousness
While Laura did not completely pass out, she had two episodes of dizziness, altered state, lack of coordination, flushing, and difficulty concentrating. Again, coupled with her other symptoms, go see your PCP.

4. Difficulty getting comfortable
This was the buzz phrase her husband said that clued me into her final days. Dying patients often have this problem. It was common in hospice to see this near the end of someones illness. It doesn't always mean death is imminent, but it means there is something wrong and you need attention. Even with medication, if patients cannot get comfortable, there is something that needs to be addressed.

Laura was such a sweet, accommodating, optimistic person. She wanted to feel better after the Zpack. She didn't want to say it hadn't helped. She didn't want to be a nag or create a scene. Would she still be here if they had done the chest xray earlier? I don't know. It certainly wouldn't have hurt anything.

Finally, if you have been seeing your PCP for awhile and have anything new or suddenly different in your health please make an appointment and be frank. "This is new. This is different", should be vocalized. If you do not believe you are receiving the appropriate care or treatment, ask for a second opinion or see a different provider.

Laura

The past two weeks have been a build-up to a personal story that I would like to share with you.

I was born in July, Laura in October. I never let her forget that I was older. Not that it mattered that much because we were the same grade. I was able to drive a few months before her, but that was about it. We didn't live near each for several years when we were kids so we spent a week or two during the summer together. Her neighbor had a pool that we got to use whenever we wanted. What makes an 8 year old more happy than a pool-on-demand?? Not much. We spent endless hours in the pool, watching old Disney Hailey Mills movies, walking to the liquor store and using the change we had scrounged up to buy Bazooka gum and jaw breakers. That girl could walk on black asphalt, in the middle of July in the Central Valley of California, BAREFOOT. Weenie me couldn't hang. She walked all the way to the liquor store and back completely unscathed.

We were (naturally) blonde-haired (usually, during the summer there was a tinge of green), blue eyed and close enough in age to pass as twins. Which we did. She was raised Mormon and me Evangelical Christian. She lived near a Catholic church and to me, at 8 years old, a church was a church was a church. We didn't kneel at my church, but for some reason I stepped inside the Catholic church, knelt down and prayed one afternoon. She promptly tattled on me. I have no idea why!

Laura came with us on a trip to the Grand Canyon one year. That girl could talk and talk and talk and talk and talk....My mom said she heard Laura chattering away for awhile without my sister or I replying. She looked back and my sis and I had long passed out, but Laura didn't care. She just keep talking and telling stories. What an imagination she had! On the same Grand Canyon trip she asked me about building a bridge to Hawaii. Ever the realist, I scoffed at her idea. There is no way you can build a bridge to Hawaii. Yes, but what if?! Laura, you can't do it. It will not work. But, what if you could?! She never let it go!

For some reason or another, I was the one to leave her the most. I went off to mission trips during the summers, I left town to go to college, I kept moving to LA for jobs or school. The summer after we graduated from high school, Laura left to go to junior college in Idaho. That semester she was gone was awful. She left me. How could she do that?! I learned then, it was much easier to be the leaver, than the left. She hit 'firsts' before me. Married first, had a baby first, got sick first. Neither of us saw that coming so soon. We were in the prime of life! She, married with a baby girl, me in a serious relationship, new career, finally done with school. Life was beginning!

Summer 2014 she developed a cough. A pesky, persistent, voice-changing, worsening cough. She blew it off for a month. Until she almost collapsed at work and had trouble going down the stairs. Dr gave her a Zpack and sent her along her way. Late Summer nothing had changed. Her voice was still raspy, persistent damn cough, fatigue. Went back to the same Dr. Given an inhaler and cough medication and another Zpack. Early Fall, at the insistence of her husband, she asked for a chest xray for this cough that had not gone away for almost 3 months. A mass. Hmmmm. More testing. More imaging. To the point that the tech called the doctor to ask if he wanted additional imaging while Laura was still there. Bad sign.

Late Fall, Lymphoma. Formally, Diffuse Large B-cell Lymphoma. This tricky lymphoma had developed in her chest and due, not only to the location, but also the lymphatic nature of lymphoma, surgery was not an option. Radiation and chemo were initiated and initially successful! February 2015 the tumor that had originally drastically reduced, had now drastically grown. SOB (and this time I do not mean shortness of breath). The rest of Spring and Summer were spent in and out of chemo and the hospital, hair falling out, hair growing back, an engagement and wedding and pregnancy on my end, ballet for her daughter, traveling back and forth to Stanford. It was a rough year in so many ways.

My July birthday was coming up and she was at Stanford. I was living in LA, working in Bakersfield, and 20 weeks pregnant. I drove up to see her on my day off/birthday and spent the day with her at the Dr appointments and trial chemo treatment. She was weak, tired, happy but cranky. Why couldn't that nurse find the damn vein already?? I knew it would be my last birthday with her. I wanted to play Hand and Foot, the stupidest card game ever (because she ALWAYS won), but she was too tired. I wanted her to beat me one more time. Even though she ALWAYS won, she kept playing that hand with me because she just liked playing. Don't get me wrong, she liked winning, but she also liked playing cards.

Summer faded into Fall and she was spending more and more time at Stanford. More time away from home and her little girl. Becoming more and more frail. Despite all this, she never lost her optimism. I'm serious. She fought hard. She never gave up. She never quit. I was the one thinking of losing her and she was planning my baby shower. Faith over fear was her motto and she never waivered.

Her 35th birthday came with a charity rodeo in her honor. She was well enough to attend and felt humbled by all the love and support. Halloween arrived with her little Firefighter walking the neighborhood. Saturday, November 7th my Dad called and said she was in the ER having difficulty breathing and maintaining her blood pressure. Her husband said she had trouble getting comfortable. My husband, my 34-week pregnant belly, and I drove raced to Fresno the next morning. She looked awful. Jaundiced, tired, weak. However, despite her yellow complexion, those damn hospital lights changed her tone and she looked so much better! Who can look good with jaundice? Laura can! Her best friends were there and we all laughed and cried together. Bawled when she couldn't see us. We met with the oncologist.

I knew this was the last time I would see her on this side of Heaven. My baby shower was in 6 days. She kept saying she'd see me there! She'd be there late, but she'd be there.

Laura died Tuesday, November 10th, 2015.

Patient Satisfaction

In the past decade more emphasis has been placed on personal satisfaction. We can rate and review EVERYTHING. Love the new dentist? Write a Yelp review! Find a hair in your food? Leave a bad review on Google or Yelp. Mad at your NP who wouldn't prescribe a Z-pack? Write her up on HealthGrades. It seems like the Burger King slogan of, 'Have it your way', has infiltrated every industry.

Unfortunately, it occurs in health care. Why unfortunately? Because sometimes the best thing for the patient will not make them happy. Giving a Z-pack to a patient who does not need it can cause more harm than good. In the 80's we were given an antibiotic for everything! Sinus infections got amoxicillin. I know because I took a ton of it growing up. However, we have developed these pesky super bugs. MRSA and VRE are the two most well-known. MRSA is beginning to show resistance to even the most sophisticated antibiotic.

What does this mean? Trouble. It means that when you demand an antibiotic and your PCP caves into your pressure (your satisfaction, remember?), you receive the medication and your body slowly builds up resistance. Those bacteria become a little more tough, a little smarter, a little more resistant. Imagine now 50 years of this cycle. Finally, you have a skin infection that won't respond to Keflex, Doxycycline, or Bactrim. This means you end up in the hospital on IV antibiotics to kill a super bug. And! When you take an antibiotic it not only kills the bad bacteria, it also kills some good bacteria. Yeast infection, ladies? How many times have you taken an antibiotic to treat an ear infection only to develop a yeast infection? Why? Because the antibiotic has killed the good bacteria and the yeast take over.

Let me lay it out for you: Antibiotics kill bacterial infections; not viral. What's a viral infection? The common cold and the flu. If we catch the flu and it tests positively, you may be given an anti-viral to help recover. So what can you do when you get sick? Well, most viruses last 3-5 days. You'll feel terrible; possible fever, cough, aches, runny nose, sore throat. If, after 3-5 days there is no improvement, come on in! We'd love to see you! But, if you're starting to feel better, ride that wave. And remember, the cough is the last to go; as long as the cough is improving every few days, great! Bacterial infections typically do not improve on their own after 3-5 days and you need an antibiotic. Think UTI or Strep throat. So, stay home, rest, wash your hands, take a nap, rest, hot showers, warm salt water gargling, rest, zinc, Emergen-C, Vit C, Airborne, rest.

Back to the topic at hand: patient satisfaction. If the patient has a virus and I do not prescribe an antibiotic they become unhappy. This can cause complaints, bad reviews, decreased reimbursement, loss of jobs, etc. That last one is a tad extreme, but decreased reimbursement is key. Providers, hospitals, and medical groups who receive low patient satisfaction scores may not be payed for all services provided. Just because the patient didn't get the antibiotic. Or their food was cold, or they didn't get the right meal. Do you see where I'm going with this? It becomes a bit absurd to allow patients to completely dictate the culture of care.

How can this be improved? Communication. Education. You're right, 30 years ago we did give antibiotics for everything. Unfortunately, now, we know better. Make sure we communicate clearly to patients about the virus or disease process and things to look for. If it gets worse, doesn't improve, spreads, persists for a month, etc., come back and tell us! Those are the red flags.

A man far more educated than me discussed this on his blog a few years ago and it bears sharing. KevinMD.com is our voice in this new and changing landscape.

When your PCP decides it's best to not give the antibiotic, ask why and trust them.

*The scenarios presented here are not to be taken as medical advice. If you have any medical condition or concern, please see your PCP and seek their advice.

OLD CART

No, I'm not talking about a dilapidated, horse-drawn, wooden cart. I'm talking about an acronym we use to help guide our assessments of patients. If you can come to an appointment armed with these answers, you will have a much better experience and, hopefully, outcome!

Onset-when did the headache begin? Be specific! "Awhile ago", or "months" isn't a helpful answer. 3 weeks, 2 years, 5 days are much better. If a patient just can't come up with a specific onset, I through out ridiculous numbers. 5 years ago or yesterday? This usually makes them react ("not 5 years! Are you crazy!?"), and they are able to give a better timeframe; 3 months. I don't need to know the exact moment in time it occurred, but generally speaking. Days, months, years are all very different time frames.

Location-where on your head does it hurt? Back, on top, behind eyes, sides, only one side? These are all necessary to help us come to a diagnosis. Where on your abdomen is the pain? Right lower quadrant? Left upper quadrant? Again, location helps us narrow our list of differential diagnosis and order the appropriate tests/medications, etc.

Duration-how long does the pain last? Is it constant? Only a few seconds? Having a headache for 3 days is very different than 3-4 hours. Is the chest pain intermittent or constant? Again, we don't need exact times (unless you're in labor, of course, and in that case, we like to know how long the contractions are lasting and the time in between :)).

Characteristics-is it sharp, stabbing, aching, dull, pulsing, intermittent, pulling, cramping? Bust out all those adjectives and tell me about it! Nerve pain is characterized differently than muscular, so the more descriptive you can be, the better! For example, if every time you go to see Aunt Gertrude for dinner you begin sneezing, maybe you're allergic to her cat! Or, if every time you eat broccoli you experience severe abdominal cramping, maybe you need to avoid broccoli!

Aggravating factors-what makes it worse? Laying down, eating, lights, stress, loud noises, broccoli, walking, stairs, arguing, wind, cold weather, etc. The list goes on and on.....Migraines are usually aggravated by smells or light, if chest pain worsens with walking, we need to know that!

Relieving factors-what makes it better? Laying down, eating, silence, a dark room, deep breathing, rest, ice, Tylenol, avoidance, staying busy, counseling, walking, burping, passing gas, having a BM, etc. Again, the list goes on and on.

Treatment/timing-I prefer treatment, but have seen Timing used. IMO, timing is included in onset and duration. What treatment have you tried? Pain medication, ice, heat, deep breathing, Tums, a cup of coffee, a walk? This helps us determine a plan of care. When a patient tells me they haven't tried anything to fix their acid reflux, I will usually order an antacid and dietary changes. If after I write the prescription the patient tells me they have already tried this, it delays the process and I have to come back to this question.

There you have it! OLD CART!

Let me touch on Relieving factors again-if a patient has severe abdominal cramping after she eats broccoli, she has already identified the probable cause and is actively avoiding broccoli, I usually won't do any further work-up/treatment. She has found the cause, changed her diet, and now the symptoms do not return. This patient has solved her problem! A lot of patients still want the reassurance there is nothing else wrong. Trust yourself and your body! It's good to follow-up with us so we can make note of it in your chart, but if the symptoms have resolved, great! However, do not hesitate to come back if the symptoms return!