Right Care Alliance

April 19th, 2016 No comments

lowninstituteApril 18, 2016

 

I’m sitting in a big hotel in Chicago waiting for my ride on the Go Bus, to O’Hare and then I’ll wait to board my flight home to Bangor, ME.  Flying is hard for me, a 67 year old large woman, because it aggravates my arthritis and edema. When I get home I will be lame and exhausted, and I will need ibuprofen for a few days.

 

So, why am I here?  You may have guessed that I’m not particularly fond of flying or of the fast life. City life doesn’t appeal to me.  People move much too fast to accomplish the same things we hicks do and they have to fight crowds of people and traffic to do it!  They are fascinating to watch, but I haven’t left this hotel since Thursday evening, which was 4 days ago.

 

I came for a health care conference, with the Lown Institute, and the Right Care Alliance.

 

For the past 3 days, I have listened to researchers, doctors, lawyers, patients, nurses, a housing expert, a clergyman, writers, reporters, Healthcare organization leaders, medical and nursing students, and more.  We heard about the many hurdles in healthcare, and in seeking healthcare, and we heard about solutions.  When we met in small and big groups, we talked about our hopes and aspirations for a better health care approach. I hate to use the word system because that is what we have and it ain’t working.

 

Our fearless leaders Dr Vikas Sanai and Shannon Brownlee got us all wound up.with rallying cries and with real crying with real tears.  For the love of humanity, we have to do this.  We need a revolution.

 

With so much overuse, underuse, misuse and abuse of healthcare, and so much waste, up to a Trillion dollars a year, how can we go on this way?  Simple answer, we can’t.

 

The reason for all of my work is Patient Safety and to bring the voice of patients to every meeting and organization that lets me in the door.  The RCA WANTS MY VOICE, but better yet, they want everybody’s voice.  The more the merrier.  The more the better our chances are for a revolution.

 

I can come up with so many examples of overuse, unnecessary testing, too much medicine prescribed, too many office visits, and stupid routine things done, and all just in my family. I also think about the cost to us. I think of my son who is struggles with medical debt for a necessary knee surgery about 10 years ago while he was uninsured.  I think of my mother who right up until this year, at age of 90, was getting annual mammograms.  She was also getting yearly pap smears, cholesterol tests and ultrasounds on her carotid arteries that she swore she would never get surgery for, and invasive cardiac testing for a faulty valve that she has said she would not get fixed. Medicare will pay for these useless tests every year but not one penny toward her assisted living care for dementia.   Then there is the underuse…that I experienced myself last year when I had a large kidney stone that would not pass on it’s own.  When I needed an X-ray or ultrasound and blood work, I didn’t get it!  It caused temporary harm to my kidney, and unnecessary suffering, and yes, more doctor visits, delays and cost for care that I urgently needed.

 

The RCA movement aspires to Just Right Care. We want care that is right for the individual, at their stage of life, and for their individual needs, in the right place, at the right time. We want a democratic healthcare approach.   All of us wants and needs that because too many tests and too many medicines and too many procedures can cause harm and cost a fortune.  And all of those tests, procedures, and diagnostics are decided FOR patients by our insurance companies, and our government…. by everybody but us!   We also want a system that is accessible to everyone, from birth to death, and that does not put us at risk for bankruptcy.  A single healthcare encounter has the potential to financially ruin anyone except the very wealthy.

 

So, this is a rallying call.  To all of my friends and family who agrees with what the RCA and I are trying to do, please visit our webpage, and read the mission, vision and pledge.  http://rightcarealliance.org/  Take a look at the different councils and who is on them.  Consider joining a council and please sign the pledge.  Then follow and/or support the work.

 

We, the Right Care Alliance, will raise our voices, and cause a ruckus.  We will transform healthcare into something that is safe, high quality, accessible and affordable for all.

Patients as the FIRST thought, not an afterthought

February 21st, 2016 7 comments

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Over the past 9 years and somewhat Ad nauseum,  I have carried the torch for patients and their voices into some pretty VIP places and in front of some HUGE names in healthcare.  I’m not bragging , it’s just a fact.

It wasn’t always easy and I did it with a lot of trepidation  at first. Like most people with a new mission, I had to get my courage up and my feet under me.   I was never in the limelight or even a good public speaker in my days as a hard working bedside nurse.  My audience was much more intimate, sick patients and their very worried loved ones.  I always tried to be gentle and to  make them smile or at least cheer up somewhat.  Being a patient is the most challenging job any of us can face, and they don’t want much, just attentive care and competent clinicians who will work with them.   I think about patients, especially my own father,  when I am nervous about a presentation, then I think  “what do I have to worry about?”

Some of the places where I have been a speaker or a guest, or an attendee are the DHHS, CMS,  State and Federal CDC, IHI, IPFCC, Aligning Forces for Quality, Robert Wood Johnson Foundation,  Consumers Union Safe Patient Project, APIC Idaho, Lown Institute, Maine Quality Counts, Maine Health Management Coalition, Maine Patient Safety Academy, Maine State Legislature, and a bunch more.   A few of those organizations even gave me recognition awards!  That was an unexpected honor.

In the early days of my Patient Safety work, I was shocked and felt a glimmer of hope every time I was called on to comment or ask a question. It seemed that some of those people actually cared about what I had to ask or say.   Then, HOLY MACKEREL, I would see an actual patient representative speak, or be on a panel discussion.  Then all of a sudden, it was ME they were asking to be on a panel!  Then of course the unbelievable honor….I was asked several times to give a keynote talk.   I worked extremely hard on my talks, because I had to strike a balance.  I had to get a powerful message out, without pissing healthcare people off.  I might have failed that a few times, but you can’t always keep everybody happy and be an effective Patient Safety Advocate at the same time.   Early in my work, I was angry about losing my Dad to a preventable hospital infection, but I struggled to keep my tongue.  If I hadn’t…things could have been very different.

Fast forward.  As part of my work, I have helped with planning of the biggest healthcare event in Maine. A few of us on the planning committee are consumer representatives, and the organization has been excellent about inclusion of  the patient/consumer voice.  Every year we have similar conversations and toss around ideas about how to increase consumer attendance, and to include them in the presentations.  This year was pretty similar, so imagine my surprise when I read all of the breakout session descriptions and as far as I could tell, not one single presentation has a patient/consumer representative as a panel member, not ONE! HUGE GAP! And no, the old ruse that “all of us is a healthcare consumers and a patient at some time” doesn’t float anymore.  Unaffiliated patient/consumer representatives only!!!!  I usually do a patient oriented presentation for this event,  but  I have increased personal family responsibilities this year, so I did not present an abstract proposal.   But, I am not the only unaffiliated patient (or patient/consumer representative)  in MAINE!

There is a common thread in almost all of my groups.  There is an effort to build on the patients voice, but there is also a very subtle control over it.  Sometimes I worry that it is intentional, but mostly I just think people forget who they are working for….. PATIENTS!    I have been in huge conference  rooms where courageous real patients shared their stories and wisdom on a big stage. I have been on a few of those stages and it is daunting, but also exhilarating.     The room, mostly VIPs, doctors, nurses, lawyers, state or federal leaders, other healthcare dignitaries was hushed and totally absorbed in what they had to say.   Nobody expects patients to bring the complex science and the heavy data with them (although some do), but when they speak of their own life altering experiences about their success from a certain treatment, or approach and what they lave learned, shared,and observed. the room is always riveted on them.  That is not always so when a high falootin’ healthcare professional drones on about what he/she has done FOR patients. and then attempts to tell THIER PATIENTS stories.  Patients can do that for themselves.  All they need are the opportunities, encouragement and sometimes a little rehearsal to preserve the time and point of a presentation.

My new mantra for any healthcare conference planning I am involved in  from now on will be this.

MAKE PATIENTS THE FIRST THOUGHT IN YOUR PLANNING, NOT AN AFTERTHOUGHT.

IF YOU’VE GOT A BETTER WAY, PRODUCT, SCIENCE TO PRESENT ABOUT,  BRING PATIENTS INSTEAD OF POWERPOINTS TO PROVE IT.  INVITE THEM TO SHINE, FOR THEMSELVES,  FOR YOUR MAGIC POTION AND FOR THE BENEFIT OF ALL.  IF YOU ARE GOING TO DISCUSS A PARTICULAR HEALTH PROBLEM/SOLUTION, BRING A PATIENT WHO CAN GIVE A HEARTFELT PERSONAL TESTIMONIAL.    GOT DATA?  BRING THE NUMERATORS AND DENOMINATORS, TRANSLATION: BRING PATIENTS INSTEAD OF TEENY NUMERICAL  GRAPHS THAT  NOBODY CAN READ. IF YOUR GROUP IS DISCUSSING PATIENTS, INCLUDE THEM , PUT THEM IN LEADERSHIP ROLES AND ON SPEAKER PANELS.  UNLESS YOUR MEETING IS EXCLUSIVELY FOR CLINICIANS AND IT IS COMPLETELY ABOUT THE SCIENCE, PUT PATIENT FIRST AND FOREMOST ON YOUR AGENDA.  BUT CONSIDER THAT EVEN THE MOST GEEKY SCIENCE BASED HEALTHCARE CONFERENCES ARE ABOUT PATIENTS, OR AT LEAST PATIENTS HOPE THEY ARE.  MAKE SPACE FOR PATIENT PRESENTERS.  

If I could just send this message to every organizational planning committee call I have been on and walk away knowing people had paid attention, it could save me many hours on conference calls.  But, I do love my calls and the networking and the brilliant people I work with all the time.  I just hate having to repeat my message about the Patients Voice every year, every meeting, every organization,  over and over.   I hope it will eventually stick and someday when I am too old to do this anymore,  people may say, “I miss Kathy Day and her nagging about bringing the Patient’s Voice.”

 

 

 

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Dammit, give me an antibiotic

February 18th, 2016 4 comments
Louie, Full time entertainment, PRN  therapy dog

Louie, Full time entertainment, PRN therapy dog

As a healthcare consumer/patient advocate I have been involved in many different projects including the Choosing Wisely Campaign and the Statewide Healthcare Associated Infections council.  In both capacities, we have had many different conversations about antibiotic stewardship. Everybody knows that overuse and unnecessary use of antibiotics have lead us to Multi drug resistant infections, with very few new antibiotics in our future.  There is a lot of blame to go around about Antibiotic overuse, mostly from Big Pharma marketing then our food animal growers, then prescribers, Hospitals, and to a much smaller extent, patients.    During a Choosing Wisely encounter, patients are advised to ask questions. We are supposed to ask if the medicine is necessary, if there are alternatives, if there are risks, all very valid questions.  In the HAI council I have heard many comments about patients asking for unnecessary antibiotics.  My sympathies generally lie with patients, so I can understand why a Mom with a baby who has a very painful earache, wants everything she can get to ease her baby’s pain, including treating possible infection.  I have a constant nagging discomfort with the US vs THEM hidden message in some of these conversations, even though I understand the necessity of addressing overuse of antibiotics.  I’d feel more comfortable thinking we are all in this together and for a single purpose, to keep people healthy.

This morning I was prescribed not one, but two antibiotics, along with Prednisone.  I have been very ill for 5 days with high unrelenting fever, coughing and wheezing.  Always in the back of my mind is the usual mantra from the infection professionals in my State HAI group, “most of these things are viral and antibiotics will not help or cure that”.   My lungs sounded to me (without a stethescope) like a symphony orchestra, then a bee hive, then cats meowing, then  I swear there was  a foreign voice down there.  I was not hallucinating, at least I don’t think I was.  It’s too bad that little foreign voice in my lungs couldn’t holler up and say “I’m a bacteria” or “I am a virus”.    I was weak from fighting fever, wheezing and coughing, and I was suffering with stress incontinence and had to resort to using pads.  Being sick like that and struggling to breath is a nasty experience.

When I finally marched my sorry butt off to my doctors office this morning, I was going to be THAT patient if I had to be, the one my colleagues talk about in our HAI meetings.  I had used all of the home remedies I could including Advil, Tylenol, Tussin DM, steroid inhaler( from a prior wheezing experience), honey and cinnamon,  tons of water, and lots of Louie (my little dog) snuggling, and my dedicated husband had been caring for me and making me soup.   If my doctor did not recommend antibiotics I would request them.  I was a ragged sick old lady, and  a wash of sweat from my early morning fever, that had just broken, and I knew what I wanted.  I will NOT apologize for getting medicine I needed to avoid getting sicker or being hospitalized.

I think we must be very thoughtful and cautious in our discussions about Antibiotic Stewardship.  Maybe the conversation should provide better guidance for when an antibiotic IS appropriate than when it isn’t (stuffy nose and congestion for a few days, also miserable, but doesn’t respond to antibiotics).  We don’t want to ward people off from getting necessary care, and we certainly don’t  want people getting sicker when there is medicine that can cure them.  It is a very fine balance and the patient is the priority, because it is their health on the line.

This antibiotic conversation sometimes reminds me of how women use to feel like failures if they took something for pain during labor.  Was it implied by their caregivers, or their doctors  or their coaches that they weren’t  tough enough?  Who would do that to laboring women patients?   We must avoid making anyone feel guilty, unimportant or dissed in our Antibiotic Stewardship conversations and practices.

 

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18 Winter Street AKA Memory Lane

December 18th, 2015 3 comments

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In 1956 when I was 7 years old and going into second grade, my family moved into our new home at 18 Winter Street in Millinocket, Maine.  We had been visiting the street and the lot and the growing house on it for months.  We started going there when they were clearing the trees except for the few maples and white birch that still stand there today.  My parents were honest hardworking people.  My father’s family had never lived in a house of their own, and so this was a huge source of pride for him.  He worked at the Great Northern Paper Company, and he had earned his way since he was about 15 years old.

GNP essentially gave employees a town lot if they wanted to build a home.  My family was housed in a two room “shack” (my mothers affectionate term for our previous dwelling) at the edge of the river on Aroostook Ave.  We had a toilet, and oil burner stove, and a kitchen sink, but no bathtub or vanity sink.  My mother, father, brother and I all slept in the same room, so a new house with separate rooms for all of us was a dream.

The mill not only gave us a lot, they provided heavy equipment to help dig the foundation, let us use cement forms for the walls of the foundation, and if the owner bought a case of beer, it was pretty easy to get a crew to help mix and pour a foundation.  This was the way Millinocket use to be.  Everybody worked together and helped each other, no matter what their status was in the community.

While the house was being built, we kids played, snuck candy, tormented and all got use to each other.  There was a new brood of kids there and it kept growing.  A lot of the lots on the street hadn’t even been cleared when we moved there, so new kids showed up all the time for a while.

My parents moved us in before all the sheetrock walls, cupboards, or doors were in place.  I remember he smell of lumber.  It was framed and sectioned off but it took a long time for Dad to finish it, with walls, finishing the wood work, even putting up cornices and doing all of the painting.  Mum made draperies, pillows, and upholstered old furniture for it.  The most grueling and beautiful work went into the hardwood floors that my father laid by himself until his knees could hardly bear another day laying tiny pieces of wood.   My mother brags that those floors were what she wanted and so he did it.  The floors are in amazing condition to this day, but much of it is covered with some aging carpet in the living room and hall.  Mum remembers Dad’s gift to her with clarity.

There are only a few of the original neighbors living on Winter St these days.  Most of the elders have passed and some have moved on.  My mother and father were some of the last remaining there.  Dad passed in 2009, and my mother’s memory has failed so badly that she had to move into assisted living just this past June.

What an awesome street to grow up on.  We played all year around, outside.  I remember the parents getting angry because none of the kids would come home the first time they were called to.  We had such a great time playing all sorts of games.   Red Rover, Tug of War,  hide and seek, jump rope, dodgeball, marbles.  We got along,and rarely argued or fought.  I loved growing up on Winter Street.

We have to sell our home, the only childhood home I remember in great detail.  We won’t be able to go there to sit on the porch and visit with the few old neighbors who still live there.  We won’t be solving anymore problems of the world on the back porch, while Dad smoked and Mum cooked.  No more kids or grandkids of the McCleary’s will visit the residence.   No more trips to the golf course to go sliding.  No more gatherings in our living room after a funeral, birthday party, holiday celebration or other event sad or happy. No more lamb barbecues, spaghetti feasts or holiday dinners.  This was the place that my two brothers and I brought our own children and my granddaughter to see where and how we lived as kids.  My youngest brother was born 18 years after I was and so he only knew this house as his home.  My older brother and I remember the building of it and moving in.

I am going to give a copy of this blog to whomever buys my mothers home, my home, my brothers’ home.  I think it is important for them to know the history of it.  I hope it will mean something to them, to understand that my parents’ blood sweat and tears went into this house, and some awesome memories stay there.  It breaks our hearts to sell it, but we hope that a new young family will treasure it the way we did.  We hope that they will respect and love the home and the neighborhood, and make a wonderful life there.

Our best wishes to the new owners to have a long and happy life at 18 Winter St.

 

A Tale of Three Kidney Stones and the Wisdom to Know the Difference

October 25th, 2015 3 comments

Alone in a hotel room far from home, the flank pain was excruciating. I was diaphoretic and nauseous.  I knew these were the telltale signs of a kidney stone.

Without knowing any doctor in the area, my husband and I trooped off to the closest hospital emergency department.  An IV with pain medicine brought instant, gratifying relief.  Blood and urine tests and a CT scan were performed.

After lying on the gurney for a couple of hours waiting for the test results, the stone moved and the pain vanished in a flash.  But the episode was not over.

The CT scan revealed cyst-like lesions on my kidney, ovaries, and liver.  I knew about the ovarian cysts, and my gynecologist was keeping an eye on them.  The others were news to me.  The emergency room physician recommended an MRI and follow-up with the internal medicine physician on call.

My instincts were to go back to the hotel and follow-up with my primary care physician at home.  But  feeling vulnerable and disempowered while lying horizontal on the gurney and wearing a paper gown, I agreed to the MRI.  The worry and waiting to hear from the internist were unnerving.  Fortunately, he said, “You just have a lot of cysts, nothing to worry about.”

After a four year hiatus, the familiar flank pain returned. The timing was not auspicious because I was caring for my very ill elderly father and could not be sick and take care of him at the same time.

The symptoms were more subtle at first.  I wanted to wait it out and avoid the expense and inconvenience of a doctor visit and work up.  The initial acute pain was not nearly as bad as the first kidney stone.

A lingering symptom was a constant need to urinate, and when the urine became bloody and the pain increased, I went to the hospital emergency room because it was a weekend and my primary care physician was not available. After giving a urine sample, the stone moved and my pain went away by the time I saw the doctor.

A CT scan was recommended.  I questioned whether it was needed and was told that it would provide information on the size and location of the stone. I relented.  Since then, I have learned that an ultrasound or single upright abdominal x-ray may have provided the same information. The stone was small, less than 5 millimeters, and it passed several weeks later.

Earlier this year, a third kidney stone made its presence known. As a patient with a history of them, the onset of a new one is familiar. The pain began on a Friday night.  I bucked up and tried to be stoic, hopeful that it would pass, as the other ones had.

Miserable, I gave in and went to the emergency room on a Sunday afternoon. I explained my history and symptoms to the physician.  I told him this stone seemed different. It was constant, staying in my kidney, and much worse at night when I tried to sleep.

 

I asked for an ultrasound because this stone must have been much bigger since it was much more painful than previous ones.  It was not going to leave on its own.

Ninety percent of kidney stones pass on their own and the test was not necessary, I was told.  I did not think this was the right decision but kept silent, unlike my usual assertive self.

Illness and pain diminish a person’s ability to speak and be heard.  I was also told that if the stone did not pass and caused damage to the kidney, at least I have another kidney.

A urinalysis found blood and leukocytes, and the specimen was sent for a culture. Bactrim was prescribed and discontinued two days later when the test results were negative for infection.

Ready to go home from the emergency room, I was advised to follow up with my primary care doctor and a referral to a urologist, if needed.  I was given four hydrocodone pills that I did not use, relying instead on ibuprofen, and an antibiotic that I stopped taking.  What I really needed, I did not get.

The next five days were spent pursuing a proper diagnosis and treatment, all the while enduring some of the worst pain in my life

I obtained an appointment to see my primary care doctor on Tuesday. He ordered blood work and an x-ray and the results took what seemed like an eternity to come. I went from my primary care doctor’s office to the local hospital imaging department where the technician showed me the x-ray that revealed a 1.5 centimeter stone in the left kidney.  It would not have passed on its own.

This significant x-ray result was not reported to my primary care doctor’s office.  It took two days before I received the official results, and that happened only because I badgered the primary care physician to call the radiologists office to obtain the reading,

Time was of the essence. If a stone is blocking urine flow, as it was in my case, and is left untreated, the kidney or ureter can be damaged.  Before I could see a urologist, I had to have the results of the x-ray and blood work.

I called three urologists’ offices before one agreed to see me within a few hours.  He could see how sick I was by looking at me.

An elevated creatinine level suggested the left kidney was already struggling.  A procedure to insert a stent to allow the urine to flow was scheduled right away.  After the procedure, the pain was gone. Two weeks later a cystoscopy with laser lithotripsy was done to break up the large stone, and the pieces were removed with a tiny instrument with a retrieving basket on the end of it.

During a follow up ultrasound exam, hydronephrosis of the affected kidney was found, caused by temporary scarring or inflammation from the huge stone.  A second follow-up ultrasound revealed that this problem has resolved.

As a member of the Maine Choosing Wisely collaborative, I believe that overuse is a huge problem that can cause physical and financial harm to patients.  The best way to avoid it is when doctors and patients have a conversation about treatment options.  The doctor brings knowledge and expertise, and the patient brings knowledge about his or her medical history.

With the first two kidney stones, I believe that less would have been more, especially the CT scans.  When intensive intervention was warranted to resolve an urgent medical problem, more would have been better.

What would have helped in the third episode is if the doctor had asked a simple question, “You’ve had kidney stones before.  How does this one compare to others?” The outcome could have been much different.  An ultrasound or x-ray would have triggered a consultation with a urologist much sooner, leading to quicker resolution.

Fine tuning every encounter, based on the evidence and conversation with the patient, is important when developing a good treatment plan. By working together, patients are more likely to receive the care they need, not the treatment they don’t.

 

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Are Hospital Slippers a source of infection?

May 25th, 2015 1 comment

trackingdirtI recently underwent an emergency ureteral stent placement at Eastern Maine Medical Center here in Bangor, Maine.  My care and my outcome have been excellent.

But

I felt like a hawkeye during my care.  Although I knew some of the nurses and I appreciated everyone’s  kindness and skills, I did not appreciate the dirty floor that I walked across in my Pre Anesthesia cubicle.  The floor had some sort of spill on it and I commented.  I mentioned that I am a stickler for infection prevention because I lost my father to a hospital acquired infection.   The nurse said the floor was stained, which I found unlikely since it was tile.  What REALLY bothered me was that after I walked across whatever had spilled on that floor, I got onto my stretcher and swung my feet up with whatever crud I had picked up on that floor.  YUK!

I gave that some thought.  When I was asked to undress, I removed everything and donned a jonny, pants and hospital slippers…like footies with non slip stuff on the bottom.  Then I was escorted to the Pre anesthesia area, about 50 feet away…through a hallway and a couple of doors to my cubicle with the dirty floor.
So, I picked up whatever was on that floor all the way to my stretcher.

When I lifted my feet and slippers onto the stretcher, my stretcher was automatically contaminated.  Then….to add more concern, I wore those same slippers with whatever living organisms were on them, when I transferred onto the OR table.  The slippers were never removed until I dressed to go home.

I have an idea.  Why not let the patients wear their own shoes until it is time to get onto the stretcher, then put the new clean slippers on….OR, change the contaminated slippers before the feet are lifted up onto the stretcher?

This could be a simple precaution to prevent awful HAIs and Surgical site infections.

Being mindful of what is brought onto our beds or stretchers as patients is so important.  Sometimes it only takes a simple fix to help prevent infections.    I sent off an email to my Infection Control nurse friend at EMMC.  Maybe we can change one small thing to reduce HAIs.

And maybe, just maybe EMMC should invest more into cleaning those cruddy floors!!  Housekeepers are an essential part of the Infection prevention team.

A Week in the Life of a Stoner

May 23rd, 2015 7 comments

xray with kidney stone Kidney Stone

X-ray similar to mine

 

 

 

 

 

 

5/15/15

My husband Mike and I were sitting in a roomful of nurses, one of my favorite groups to be with.  We were attending the lovely annual dinner that was sandwiched between two full days of meetings with the Maine State Nurses Association.  I was so happy to be there.  I basically dragged Mike along, but he was pretty happy when they served up a beautiful prime rib.   Then during dessert,  ZING…. flank pain…not bad yet, but there.  I turned to Mike and said “I don’t know if I am getting a kidney stone or what!”   We left shortly after that.  We were camped in our travel trailer at Blackwoods Campground in beautiful Acadia National Park.  The meetings were in Bar Harbor, Maine, the nicest setting I could imagine.  Before getting stoned, we had enjoyed 2 gorgeous days of camping and touring around.

All night, I labored with the unrelenting horrid flank pain.  The camper was cold..no electric hook ups there. No cell phone service either!   Although our RV is 30 feet long, that little middle space wasn’t much of a place to pace with kidney stone pain, nausea, shakes, and clammy skin.  In hindsight, I should have gone to the Bar Harbor ER.  But, my first 2 kidney stones only caused me a single day of pain and eventually they passed on their own.  I was being stoic and thinking, I can handle this on my own.

Not this time.

If I had gone to the ER that night, maybe I could have skipped the next several days of misery.  I made a stupid choice.

5/16/15

We, or HE packed up our stuff and we drove home in the morning.  I was loaded up with ibuprofen and so the pain wasn’t bad, but I felt like shit warmed over.  I hated to miss the second day of meetings because a Facebook friend was going to speak about Patient Advocacy for Nurses.     I got home and started drinking water like a camel.  That night, the pain was back, in my back, in the black night.   UGH.   No doubt, I had to be seen by someone who knew more  about kidney stones than I did.

5/17/15

Sunday we trooped off to  St Joseph’s ER, where I got a cursory tap on both kidneys (this was my physical exam), a urinalysis and culture, antibiotics and 4 Oxycontin pills.   Yup, you have blood and Nitrites in  your urine Kathy.  Advice, follow up with your primary care and a urologist and drink tons of liquids. mmmmhmmmm.    No xray or CT scan done.  I was actually ok with that until the next round of unrelenting pain.  I am into Choosing Wisely, until wise choices are not made.  In this case, they probably should have done at least an xray. This was partially my fault because I never want more tests or medicines than necessary.

This stone is different from my other ones.

5/18/15

Monday I crawled around my house thinking this bitch of a stone will pass.  It HAS to.  I’m feeling sick, constipated, and very miserable with pain.  I have drunk gallons of water and strained the gallons of pee.  Nothing..  And when old women are crabby AND constipated, they take Milk of Magnesia.  No need to discuss this further because not everyone reading this will be a nurse or doctor.

5/19/15

I called St Joes for my urine culture results.  Negative.  I asked if I needed to take the rest of the Bactrim.  She said “yes”, and “no further follow up needed”.   Apparently she didn’t know about me, and my pain and  my kidney stone.  Then I called the urologist that the  St Joes doctor recommended, thinking that I could skip right to the expert and avoid another visit with my Primary Care in between.   They would not give me an appointment until I had blood work and a CT scan and I would have to get those ordered by my primary care doctor.  My stone and I were being held hostage for more tests.  Finally, I called my primary care doctor.  They got me in within a few hours.  He is my fave!!  He got my history and ordered, not a CT, but an abdominal film and blood work. Then he gave me Flomax. It did help to reduce the pain, but it didn’t go away.    I tossed and turned all night again with that stabbing constant  pain.  There was a pattern…when I wanted to lie down and sleep, that made the pain worse.

5/20/15

I called for my blood results and was told that my parathryoid hormone level was elevated but my blood calcium was not.  How about the xray? (by biggest concern)   No result on that yet, and the doctor is running 45 minutes late, and he might not  get to it today, but we will let you know as soon as we get the reading….that’s what I was told.  I waited all day long thinking maybe he would get to it, but they never got the reading of my xray from EMMC imaging  that day, and in the busy-ness of the day, nobody called to get it.   Another night of misery coming right up.

5/21/15

First thing in the morning I called the primary care office again.  Before I got my question out, the med tech said, “I am going to call over there (EMMC)  right now”.  And so she did.  I have a 1.5 cm or about a 3/4 inch kidney stone, one that will not pass on it’s own.  The radiologist apparently did not think this was a significant clinical reading and didn’t share this information with my doctor after he read my film.   I saw the xray myself, and I knew that the stone was at least 1cm….twice as big as my last one.  I assumed because this stone was large, and would not pass on it’s own,  that the reading and report out would be called to my doctor very quickly.

Now the fun really begins.

I really needed  a urologist. My PC faxed a referral to a urologist we had discussed during my office visit. This was not the same one that St Joes recommended.    When I spoke with that GU office these were their comments “We can’t give you an appointment until the doctor sees your lab and xrays.  He is in surgery until this afternoon.  I have to talk to my supervisor about this and she is out of town.”  And then the kicker, “he only does procedures at Bar Harbor or Blue Hill Hospitals.”  NO WAY am I circling back to Bar Harbor. I am too sick and miserable.  And we have two hospitals right here in Bangor.  So, my PC (primary care) called Urology Surgery, an affiliate of Eastern Maine Medical Center.   At first they said I had to jump through the EMMC ER hoop (one of many so far)….I must go to the ER to get the urologist on call.  OK, so now I am both sick and pissed off (get it?).  I asked for the phone number and I called them myself.  I firmly told them that I have a diagnosis..with X-rays, urinalysis and blood work to match, and I have visited an ER and my PC already.  NO WAY am I going to add EMMC ER chaos, cost, and time to this.  And I need to be taken care of.  Guess what.  That did it…I had to blow up just a little bit first, but I got into that office within 2 and half hours and I got the nicest, kindest, sweetest, most talented GU surgeon ever.  He almost made me cry with gratitude.  He knew I was sick by looking at me. My struggling kidney had already caused a rise in my creatinine level. By 5pm I was being wheeled into the EMMC OR for a ureteral stent placement, step one of two to rid myself of this stone.  Everyone from the GU office, to the EMMC registration, to Patient intake, to preop, to OR to recovery room, anesthesia….all kind, caring and skilled.  These are the names I remember..Courtney, Bev, Paula, Sue, and of course Jonas, my surgeon.   They met my needs before I knew I had a need.  Paula, my recovery nurse, helped me to the bathroom to pee for the first time after the procedure.  She said…”you probably won’t pee yet, you just feel like you have to.”  Her colleague said, “if she pees, Paula, you have to do a pee dance.”  Paula did a pee dance..because, although it felt like I was passing glass…I peed!!!  YAHOO

 

 

.Ureteral stent

Lessons learned.

1. Don’t self diagnose.  When your body is screaming at you with pain, pay attention.  Do something about it right away.

2. Always bring an advocate, whenever and wherever you can.  I am still unclear about how my stone will be removed, because I was so sick when I went to the Urologist’s office.  I do remember something about lasers.  It was a mistake not to bring Mike to the exam room with me. He is my trusted partner and extra pair of ears.

3. Don’t take no for an answer when you are getting dismissed, delayed or disregarded…and it won’t matter how good your people are…there is always some excuse or reason why your needs can’t or won’t be met when you need them met.   Be persistent and advocate for yourself/your loved one.

4. Say thank you, frequently and sincerely.  I thanked everyone over and over.  I thanked my surgeon immediately when we very first met and we were shaking hands.  I will write notes of thanks for the excellent care I received at EMMC and in the surgeon’s office.

I am two days with my spanking new ureteral stent.   This has allowed my brutalized left kidney to pass urine, despite my big stone.  I am pain free.  I have taken only 2 advil since my surgery.  I am eternally grateful to my surgeon for pushing his scheduler to get me into surgery in 3 hours rather than in days.  Her response to his request “are you kidding me?”   She was obviously annoyed , but he didn’t back down.  He was advocating for ME!  She could steam about it all she wanted and she did, but she got me in.

I don’t share my story to get sympathy….I share it hoping to help patients to advocate for themselves and to be persistent when healthcare needs are not being met.

I also share in  hopes that my caregivers, throughout this ordeal, will learn to simply do what’s right for their patients.  Take care of them.   Sick, miserable patients don’t want to hear excuses or be delayed.   Patients want the right care, at the right time and in the right place.

My relief from pain and sickness came after almost a full week of battle, fighting for myself.   I am still facing another GU procedure to remove the stone and the stent.  Then maybe..just maybe… .a parathyroidectomy.  I don’t anticipate any more battles, but my husband and I will be on alert and advocating for me.

The reason I get kidney stones.

The reason I get kidney stones.

 

 

 

 

 

 

 

 

April 1 2015, Maine Quality Counts Annual Conference

April 4th, 2015 3 comments

hugsI was up with the birds on April fools day this year, because I would attend my 4th annual MQC conference.  I had things to do, people to see, experts to learn from, talks to hear and presentations to give.  I had materials on Patient Safety to distribute (about 75 lbs of them in a very cumbersome wheeled bag), things to coordinate, and hugs to receive and give. My patient and supportive husband attends with me every year as well.

This has become an annual event for me.  I wouldn’t miss it for the world!  My very first one was 4 years ago, when Regina Holliday presented and painted.  I knew her from a previous conference and in truth, she was one of the very few people I did know at the event.  WOW, what a difference this year!  My arms are all worn out from all that hugging.  I have met and learned from so many of this year’s sold out crowd of over 1100 people.  It’s amazing.

We had two incredible keynote speakers, Anne Weiss from the Robert Wood Johnson foundation and Dr Atul Gawande, Author, surgeon, teacher, end of life expert.  Both shared ideas, wisdom, modern views of humanizing healthcare and promoting health.  We had discussions on public health (by State and Maine Districts), we watched while honorable people were honored with recognition awards.  I nominated one of them and I felt like a proud Mom (tears and all)  when she accepted her well deserved award.

QC2015 was incredible.  Admittedly, when I heard what the theme would be for this year, I didn’t know how I could fit in my message on Patient Safety and healthcare harm. The QC 2015 theme was,   Delivering Health or Healthcare.  Maybe my problem was with the little word “or”.   We need both, for sure, so maybe that word ‘or’ in the title,  should have been ‘and’.   Then again,  we will need less of healthcare when we deliver health. And, if we stay healthy we are naturally safer. But if we do need healthcare, it must be high quality SAFE healthcare!   YES….my subject could fit in.  However, I had to find a better way to deliver my message than I had done before.  Since this conference is a celebration of fine accomplishments and progress, and of hope for a kinder, more efficient and effective healthcare system,  my presentation about healthcare harm could  not be a downer.  Instead of imparting gloom and doom in my presentation,  I used humor..which is hard to imagine, and even harder to do,  when discussing healthcare harm.  I had just 10 minutes to meet this challenge.   I was one of 3 in my presentation team talking about Patient partnering, using quality and cost transparency, shared decision making and mutual respect.  I created my own Hospital called Safe Hands Hospital.    I embraced patients in my presentation….yes, real live people, from our audience, who became fictitious patients. Their 4 stories were created from real stories of patients that I know from my work.   For the first time in over 10 years, I had a patient assignment of 4 patients, all at different levels of patient engagement (E patients). It felt so good to go back to my nursing days and to have a duty, to make my patients safer.  I gave out token but meaningful and useful gifts to my 4 volunteers, all very good sports.    There was loud laughter in our audience, but I hope I relayed a very very serious message.  That message was…engaged patients are generally safer patients.   People came from other rooms  to see what we were up to in our room.   There was standing room only.  We may have misbehaved in the Capital room, but I think my team and I got our message across very clearly.

I came away from QC 2015 exhausted, happy and smarter.  I always learn so much, and when that comes with dozens of hugs from the incredible people I have met  on my Patient Safety Advocacy journey, it just makes me want to learn, do and be more.

 

 

 

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Huffing and puffing

February 26th, 2015 8 comments

can't breaathI don’t generally talk much about my own health, but when I think it might help somebody else out, why not?  I have been a generally healthy fat woman most of my life, and I hardly ever go to the doctors.  I don’t take many medicines and I haven’t had as much as a cold this winter. In my lifetime, I have had a two  babies, a few gynecological procedures, got my tonsils out,  had a broken ankle, two kidney stones, and that bout with uterine cancer a few years ago….quickly cured with surgery.  That’s my history in a nutshell.

But, lately I have suffered with shortness of breath. It’s no fun because small tasks like doing laundry and brushing my teeth brings it on, and it diminishes my stamina and interferes with walking distances.  For several years, I have had difficulty breathing after climbing stairs, but it has gotten much worse.   After a flight home last November, when I got off my plane, I started feeling a tightness in my chest and then the unrelenting cough that followed.  Since then, I have had persistant difficulties.  I have blamed it on our pellet stove, my weight, getting old, a dusty house, etc.  But, it finally sunk in that  this was not going away, and it is not smart to diagnose myself.  I am not a doctor, and I don’t pretend to be one.

So, today I had my first doctors appointment for SOB.  This  is only my 2nd visit ever with this new doctor.   I really appreciate his manner, his  no nonsense way of speaking, and his intelligence.  Mostly I appreciated that he both listens AND speaks.  We partnered up!   He ordered a 6 minute walk test, a pulmonary function test, an EKG (all done in his office)  and a Chest Xray.  He considered adding a chemical stress echo cardiogram, but we delayed that because the PFT indicated emphysema!

OH MY GOD!

I smoked in my youth and until I was 35. It’s been 30 years since I lit up.   Interestingly one of the reasons I quit is that in two of my nursing jobs,  I administered  PFTs , and so I did a couple on myself!  My pulmonary function was declining back then because of smoking  and so I quit.  It was one of the hardest but best things I ever did for myself.  I had an immediate improvement in my breathing, stamina and capacity for exercise back then.

I’ve always been proud that I quit, and afterward, I could  do things without huffing and puffing.  My deceased father had emphysema, and my mother has asthma.  I have seen them both struggle to breath.   I have watched them suck in inhaler mists and take medications for most of my adult life.  I never thought I would have emphysema, but could it be the lesser of two evils?  The differential diagnosis was  Coronary Artery disease/blockage….and guess what they would have recommended for that.  No, I don’t want to think about that.  We won’t go there unless necessary.

So, my plan is to drop some of this weight, start some kind of walking regimen (spring MUST be almost here isn’t it?), use the steroid inhalers that the doctor gave me, and hope for improvement.

I’ll go back in 2 weeks.  I’m hoping to avoid further testing and procedures.  We shall see.  I’ll share this journey, like I did with the cancer. It just might help someone else.  I’m so pleased that I found a doctor that I could ask as many questions as I wanted.  He explained ‘our’ plan in detail, and we move on.

Chapter 2 in 2 weeks.

Jerolyn Ireland at the Maine Patient Safety Academy

September 7th, 2014 No comments
Jerolyn Ireland RN

Jerolyn Ireland RN

On September 5, I attended the 5th annual Patient Safety Academy.  This event was another great learning and teaching time for me.  Every year this event improves and the speakers are talking more and more about the things I have been fighting for.    I can relate!  FINALLY!  I don’t feel alone anymore.

This year, my colleague Jerolyn Ireland RN, and I brought the patient’s voice to the conference. We did a co presentation called Nurses as Patients, When Harm Happens.    Jerolyn’s personal healthcare harm story is downright incomprehensible.  I first met her about a year ago.  She contacted me through this blog. She was looking for someone who understood MRSA or Methicillin Resistant Staphylococcus Aureus and the harm that it does.

In 2012 at the age of 70, Jerolyn was actively employed as the Public Health Liaison Nurse for the Maine Tribes. She had no intention of retiring until she was around 75 years old.  But, out of the blue, she suffered a grand mal seizure.  When she fell, she broke both of her shoulders.  She required surgery on the shoulders and became immobilized with both arms in casts and across her chest.  During her hospital stay she suffered through bilateral Deep Vein Thrombosis, a urinary tract infection, hallucinations and skin ulcers.  With all of these complications and problems she was shipped off to a Rehabilitation facility, an affiliate of the Hospital.  During her stay one night, she called for assistance to use the bedpan, remember, both arms were immobilized.   She was told to pee in her bed because the nurses were too busy.  I cannot begin to imagine the humiliation and degradation that Jerolyn experienced.

After she rehabilitated, she did return to work for about a month.  But, she also learned that the cause of her seizure was a benign brain tumor.  Her neuro surgeon assured her that she would be back to work within 5 or 6 weeks after removal of this tumor.  This was when Jerolyn’s real problems started.

Within a few weeks of her surgery, she got a surgical site infection.  When she called her doctor, he said he couldn’t see her right away.  No cultures were done.  The infection progressed.  At one point, when the doctor did finally see her, he prescribed  Zyvox, a hugely expensive oral antibiotic.  Her son went to pick up the medicine and the cashier asked for $1200.  That isn’t an amount of money that most of us carry around.  So, they gave her Bactrim, which is sometimes effective with superficial skin MRSA or boils, but her infection was a tough one, and at this point, it still had not been cultured.  Her troubles continued, and multiplied and got worse.  By the time I met Jerolyn, she had 5 additional skull surgeries, long term antibiotic treatment, more rehab and home nursing and physical therapy, and several more seizures.

Jerolyn's Fifth skull surgery

Jerolyn’s Fifth skull surgery

Jerolyn went from being an engaged and widely respected and highly regarded professional nurse, to her current state of medical disability in just a few years because of healthcare harm.  She told her neurosurgeon about her infection and he blamed her C Pap machine (used for sleep apnea)  for the infection (that was the first time I have heard that crazy excuse for a preventable MRSA infection).  When she wrote a letter to the Hospital where she contracted the infection, she got a standard “fluff” letter in response.  That Hospital, and the many other services she has needed after the harm, continue to bill her.  And she can’t pay.  So they have bill collectors after her.  She has lost all of her hard earned possessions…..all except the most important one…her life. And Jerolyn’s life is precious.  She is one of  the most generous, courageous women I know.    Hang on  Jerolyn because you and I have work to do!

Jerolyn will likely file for bankruptcy, when she can find the money to pay for it.  She has lost her home, her car, and she has even sold her jewelry.  She gets wads of medical bills every day.  Early on, she tried to keep up with the bills by paying with credit cards, and those bills come in regularly too.  She struggles to pay for food, but does not qualify for food stamps. During her seizures, she has damaged some teeth, but cannot access and pay for dental repair. This financial and emotional harm has also rippled out to her son and family, because he is her steadfast advocate and POA.

Jerolyn's overflowing bureau full of bills

Jerolyn’s overflowing bureau full of bills

 

I was so humbled and proud to stand with Jerolyn Ireland at the Maine Patient Safety Academy and raise awareness of the impact of healthcare harm.  Most of this harm is invisible to professional caregivers. It is unlikely that any of her caregivers from her hospital stay for her first brain surgery know a single thing about Jerolyn’s struggles.   The ripple effects of harm come in many forms and they multiply and accumulate at an amazing speed.   Jerolyn and I worked very hard for several weeks to prepare this presentation, but I learned so much from her and we have become friends. Just a few weeks ago, she was readmitted from 2 more grand mal seizures.  When I asked if she wanted to cancel our presentation, she said no, that she absolutely wanted to tell her story.  So, her dedicated son Mark, a paramedic, drove her to Portland from Houlton…a 4 hour drive, and we, all three of us,  brought the real story about healthcare harm and the patients’ voice. Jerolyn’s determination, optimism and sense of humor is amazing.

Only in America.  It only happens here.  Medical debt is the #1 cause of bankruptcy in the US.  Healthcare harm is the #3 cause of death in the US.  This is a huge SHAME ON US!

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