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 No comments

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.


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








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.


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.


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.


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.


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.


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.


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!


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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Advocates campaign for National Patient Safety Board.

July 15th, 2014 1 comment


June 28th, 2014 20 comments

Whaaa??  I am sure most who are reading this are wondering about the title.  This is the title of my most recent conference, the Summer Institute of Informed Consent.  http://siipc.org/program-2014/   It was held at Dartmouth College, and they generously gave me a scholarship to attend.  They understand and value the importance of the Patient’s Voice in the room.  There were doctors, lawyers, reporters, educators,  healthcare executives, nurses (oh, I LOVE nurses), patients and Patient Safety Advocates, just like me.  It was a gathering of about 150 passionate people who want better healthcare, but all focusing on Informed consent and Shared Decision making.

We learned about education tools, and approaches to SDM. We learned the history and saw example of SDM policies.   We shared ideas and concepts, and we networked.  The speakers were some of the most powerful people in healthcare, just plain brilliant people.  What the heck was I doing there?

I had an epiphany this morning.  I don’t talk about money too often, and I don’t generally whine, but although I was granted a scholarship, my husband and I paid to rent a car, get a room and have meals.  This conference cost us around $600.  That is quite a bit for two older folks on a limited retirement income.  My husband (who accompanies me to most of these conferences) and I paid to be part of this conference.  At the conference I was surrounded by some very rich executives and others.   Why do I do this?  Am I crazy?

No, I don’t think I am crazy.  If I don’t go, and the others who speak up as patients and for patients don’t go, the most important and powerful part of any healthcare conference is missing.  Lately,  all of the conferences I attend include patient speakers (often unpaid volunteers), patients on panels with experts, and patient attendees.  Organizers carefully choose strong patient advocate/representatives and donate scholarships, and sometimes expenses for these generous patient advocate volunteers to be part of the conversation.  I contend that our  increasingly large and loud voice is the most important and powerful presence at any of these conferences.

When  healthcare executives and leaders meet in exclusive expensive conferences without patients…..just exactly what are they accomplishing?  We patients often make leaders very uncomfortable, but we keep the conversations real and honest,  and isn’t that exactly why we are there?

Thank you to the SIIPC for  this intense and valuable conference, and for making me part of it.


Catching my breath after MQF 2014

April 3rd, 2014 2 comments












I returned home yesterday bone tired and breathless, after 3 action packed healthcare advocacy days.  The 3 days culminated with the MQC annual conference.   The meeting started with a lovely opening by my friends and esteemed colleagues Dan L’Hereaux, Chairman of the MQC board of directors,  and Dr Lisa Letourneau, MQC Director.  Then a brand new patient advocate Loren Arford spoke from his heart about his experience as a member of his doctors Patient and Family Advisory Council.  After our State Commissioner of Health, Mary Mayhew spoke,  we all got  a slap down by Dr Doug Eby, from South Central Foundation, a population owned healthcare service in Anchorage AK.  WOW, I loved that guy.  I sat at a table with my husband, my niece Angela McCleary, Rosemary Gibson, Daniella Nunez from the Consumer Union Safe Patient Project, Poppy Arford and her husband Loren, and we all agreed, Dr Eby speaks OUR Language. It was soooo nice to take our wading boots off and listen intently to this man’s message.  With his brilliance, he cuts through the BS in healthcare, and because of that, and his willingness to partner with  his patient/owners (most importantly), and his staff, his practice has immensely improved the health and reduced ER visits of the native population he serves.  He isn’t that overly impressed with his work because he knows it isn’t 100%.  He settles for nothing less.   Oh yes…this guy is getting it done.  Bring it on Dr Eby!

As always, there are so many things to see and do, and so little time.  I’m thinking that maybe our next conference should go for an extra day, and then we would all have the opportunity to go to every single break out session.  Making choices is always hard. I attended the Choosing Wisely session first.   I must say, Dr Santa earned his keep in Maine this past few days.  He shared his wisdom with us 4 times in 2 days, and I am so grateful for that and for him.  Choosing Wisely is an incredibly transformative campaign.

Next, I introduced my friend and mentor Rosemary Gibson.  She joined with Karen Heck, Mayor of Waterville, and David White, small business owner, to have a conversation about how ever increasing healthcare costs are affecting our communities and businesses.  Her soft spoken wisdom blows me away every single time.  After I stumbled on my introduction of Karen (saying “tea tree” instead of Tree Spirits LLC/ the name of her small business), Rosemary carried us off into this deep and often disturbing discussion.  She speaks the truth, and the truth is hard to hear.  Oh my, our communities and our small businesses are suffering, and a big part of that is because of healthcare benefits and services costs.  There is an undeniable connection.  Something’s got to give.

I was in line getting my lunch and having an incredible conversation with my friend Susan Schow, when I heard the announcement that the awards were beginning.  OH NO…I asked to skip in line because there were a LOT of people there.  My dear friends Dan L’Hereaux and Poppy Arford presented me with the Patient Partnership Award yesterday.  Time to get the Kleenex out.   It’s hard for me to put into words how this affected me.  The reason I am doing all that I do, is because of my Dad.  His preventable infection and his poor healthcare outcome catapulted me into this fray.  There is no doubt he was with me yesterday.  It still makes me incredibly sad to think about this, but from bad comes good.  After Dad’s infection I wanted improvement.  I still do.  I have  come to realize that the work is never ending and that the goals need to be (ala Dr Eby) 100% or excellence, and nothing mediocre.  No compromises.  So, my greatest award in this work is that gradually,  patients are safer, and fewer of them are getting infections. My next greatest award is that room full of patient safety advocates and activists. Three years ago I attended this conference alone and I sat with strangers. The only person I knew was Regina Holliday!  What a difference 3 years can make.  I’m amazed at who surrounds me at meetings now.  I am very humbled by and grateful for my growing circle of like minded advocates and  for my beautiful award.

Dr Susan Burden is absolutely something else!  I totally appreciated the s-t-r-e-t-c-h.  It was silly, fun and much needed after lunch.  She is dynamic and progressive, and I totally understand the success in her California programs.  I’m not making excuses for my excess weight, but really….we are at a bit of a disadvantage with our long difficult winters.

Finally, I was honored to facilitate a late afternoon break out session for 3 other consumer advisory council colleagues.  Poppy Arford, Dian Boas and Kim Humphrey each made their cases for  1. healthcare costs transparency 2. pharmaceutical information transparency and 3. Organizational transparency.   These three experts squeezed an amazing amount of information into 24 minutes (8 minutes each..I know because I timed them).  Their messages resonated big time.  The response, and questions from our audience were proof.  This type of presentation  is not only informative, but it is essential.  Thank you to my very special friends/colleagues for sharing your knowledge and insight.

Maine Quality Counts, under the leadership of Dr Lisa Letournneau, is very adept at coordinating this incredible yearly event.  They are not afraid of ‘mixing it up’ and including controversial and sometimes uncomfortable messages with the good news in healthcare.  That takes great skill and wisdom.  The hard working staff and the awesome planning committee (I was on that!) deserves a huge applause.  Can you all hear me clapping??

I’m beat…time for a nap.




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St Patricks Day Birthday

March 15th, 2014 1 comment






Happy Birthday Dad.  Today,  March 17, 2014, you would have been 89.  Imagine that!  I don’t know if you would have lived this long, nobody ever knows.  I do know that your life was cut short by a preventable deadly Hospital infection.  That was not fair to you, and certainly not fair to us, the ones left behind who love you and miss you.

Five years have passed since Dad died.  My observations while I spent time at his bedside, and as he suffered through the life draining Hospital infection MRSA, were that prevention was sadly lacking.  I watched as caregivers used varying levels of precautions….from handwashing, to gloves, to gowns and masks.  Some did it well, some did nothing.  It was mostly the doctors who did nothing….no gloves, didn’t clean the stethoscope, no mask, gloves or gown.  It was ok sometimes because one doctor didn’t even come into the room….he did his routine visit without touching Dad at all…..he stood away from him and asked,  “How ya doing John?”  Apparently that doctor didn’t believe in hands-on medicine.   His approach to infection control was…”I’m keeping my distance and none of this infection for me!!

I grilled his caregivers and the administers of his hospital with questions, both in person and in letters.  None of the responses were productive or complete.  The most important piece of information that my family could have been given should have come the day of admission.  They had an outbreak of MRSA, with 2 deaths just before Dad was admitted that fateful day in September 2008.  Nobody told us that, and he was admitted without true informed consent.  He was placed in a Hospital with an outbreak, and with his health problems, he was ripe for infection.  It’s strange and frightening how a simple ankle fracture can escalate to a deadly MRSA infection in a Hospital setting and in just a few days.  Hospitals are definitely very dangerous places.

A MRSA outbreak, lousy handwashing and precautions compliance, random rooming together of infected or colonized patients with uninfected and vulnerable patients, and failure to escalate prevention steps according to CDC regulations for outbreaks  all led to the infection that took my father away.  And as long as I draw breath myself, I will fight for improvement, not just in that Hospital, but all hospitals.

My mother now lives a very lonely solitary life, alone in the house that she and Dad shared for over half a century.  Her memory is failing,  so she doesn’t recall details about Dad’s illness and death, and that is ok.  Sometimes memory loss is good.  The memories about Dad’s infection and suffering are  very painful.

I will go out somewhere Dad and have a green beer and toast you on your birthday.  You are still very alive in my heart.


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