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What I have learned so far on my personal Healthcare journey

November 1st, 2011 1 comment

I have learned that although I am a smartie pants patient safety activist, and I know all the correct questions to ask and who to ask, the answers are hard to come by.  The most transparent places I called were Maine Medical Center and Eastern Maine Medical Center.  The hospital I called in Boston had attitude.  I asked their infection control nurse what the infection rate was for robotic assisted hysterectomies, and all hysterectomies and I was told “well, I know they are below the National average”.   Exactly what does that mean?  I have no clue.  She also said that they are not required to report those numbers to the public, but in a year, they would be doing that.  I told her I have cancer now and I need surgery, so that report in a year would do me no good.  Then she went on to tell me she did not have the authority to give me that information.  When Iasked for someone who did have the authority, she said I would have to wait until Tuesday(this was the previous Thursday) and call back, but she was not certain I could get that information.  I did not call back.  I was completely turned off by their lack of transparency.

Both of the Maine Hospitals I called gave me the information they had on infection rates for hysterectomies, and EMMC even had it broken down for robotic assisted hysterectomies.   Both were concerned compassionate and friendly.  It might be because I know both of them from my MRSA work.  Even so, I appreciated their honesty and candor.   The only problem I had was finding out about other complications of their robotic assisted surgery cases.   I think if I had persued it further, I could have found out, but sometimes there is such a thing as TMI….too much information.  TMI can be kind of frightening.

So, although the original plan was to go to Boston and engage the doctor who did the first robotic assisted hysterectomy in New England, I have changed my mind.  That is the perogative of patients/healthcare consumers.  I did my homework.  I also asked my personal local doctor her opinion.  She was  very candid.  Her own husband died of melanoma this past June.  She basically said that given the choice of going to Boston or Portland (she and her husband went to both places), she would choose Portland.  Her comments were that the Boston teaching hospitals are world class but they love having you come there to learn ‘on’ you.   She went on to say that Maine Hosptials have the focus of Patient Safety.   This was reassuring to me.  She is a wise doctor.

So, after all my struggles and conflicts with Maine Hospitals and the Maine Hospital Association over MRSA, I will put my trust in Maine Medical Center and a GYN/oncologist there to take care of me. I am hoping that my activism has made Maine Hospitals safer places.   I have the expectation of a very safe, infection free experience.  I am scared enough about the risks of anesthesia, complications, post op pain,  recovery and beyond…..I really don’t want the added concern of preventable harm.  Eastern Maine Medical Center would have been an option if they had a GYN/oncologist, but they do not.  MMC does and that is where I will go.

I encourage all potential patients to call the hosptials they are considering and ask about their infection and complication rates.  Look the Hospitals and Doctors up on Healthgrades.com, or Why Not the Best. com websites to see their ‘grades’.  Ask around, talk to your doctor.  Ask him or her “if this was you or your mother, with exactly the same risk factors, where would you go for care?”    No question is a stupid question and all the answers (or lack of answers) are important in making your best healthcare choices.

So, my first lesson in my personal Healthcare journey  has been that although one can know the right questions, we can’t expect to get all the answers…and in some cases we can’t expect any answers at all!  But, the answers we do get and the way they are delivered can have a huge impact on your decision.

MRSA outbreak on Vinal Haven

October 4th, 2010 1 comment

I was surprised to read that the Vinal Haven,  Maine  MRSA outbreak continues.  It was declared by the previous Maine Public Health director that the outbreak was controlled last fall.

When I spoke to one of the Island’s MRSA victims, he told me that it had spread into at least one young family last fall.  He also stated that in his opinion that the outbreak originated in the mainland hospital rather than on lobster boats.  It then spread amoungst the lobster men on lobster boats.  I cannot confirm this, but since 85% of MRSA is Health care associated, I do not doubt him.

Aggressive MRSA education for the public and for Health care providers is necessary.  Also, aggressive screening, isolation and other preventative measures in our hospitals and all health care settings are necessary if we are ever going beat this horrible infection.

http://www.bangordailynews.com/story/Midcoast/MRSA-infections-persist-on-Vinalhaven,155268

Maine Peoples Alliance

August 26th, 2010 No comments

http://hc4.me/quality

This is the new webpage for Maine Peoples Alliance where Mainers can tell about their healthcare experiences.  My story about my father, who died of hospital acquired MRSA pneumonia is the lead story for this new blog webpage.  Please visit and comment.  Hopefully, this opportunity for Mainers to tell their Healthcare stories will shed light on the problem of medical error and hospital infections in Maine.

Thank you.

CDC

June 18th, 2010 No comments

I was recently invited to attend the first ever Conversation between the CDC and the Consumers Union.   I have affiliated myself with the CU and other powerful selfless MRSA prevention advocates during the past few years.  There isn’t much that these activists don’t know about the fight for better MRSA Prevention.

Under our new administration, and the leadership of Secretary Kathleen Sebelius, the CDC is becoming more consumer friendly.   The conversation we had two days ago was held between us (activists with the CU) and many high officials at the CDC who specialize in HAI prevention including MRSA prevention.   I was humbled by their expertise, but at the same time I was not intimidated by it.  20 years ago, I would never have expected that I …….an employee health nurse in my local medical center, who used the CDC recommendations as my bible and the Federal Registar as my mandates,  would ever be sitting where I was,  expressing my frustrations at the snail’s pace of enacting ADI for all US hospitals.

Active detection and Isolation has most recently been proven effective in our over 150 VA hospitals nationwide.  The Study was revealed at the HICPAC meeting, which I unfortunately missed most of.  The Study revealed incredible reductions of hospital acquired MRSA after using ADI in a 2 year study.  The study was a collaborative between the CDC and the VA.  Over 200 other studies prove that ADI works to stop MRSA.

All of us were asked at the end of an enlightening and exciting meeting what our feelings were about the meeting.   I told them about calling the CDC once in 1992 when I was an Employee Health Nurse at Eastern Maine Medical Center.  My project during that period of time in the early 90s was to do 2 stage TB tests on every EMMC employee.  It amounted to between 4000 and 5000 PPD or TB tests.  There was some discussion and disagreement on what exactly a positive TB test looked and felt like, so I called the CDC experts.  I remembered how daunting and intimidating that call was for me.  Never in my wildest dreams did I expect to be sitting in a conference room, having a “conversation” with top ranking CDC physicians and others,  and confidently and repeatedly expressing my personal and profession opinion on MRSA control.  The experience was humbling  and I was honored to be part of this meeting.  And, I was very grateful to be included by the CU.

I hope to return to the CDC.  I have all of my newly found passion, my research and my heartfelt sympathy and sorrow for victims and survivors of victims of MRSA.  I am not a top scientist at the CDC, but I am an expert on the human suffering that comes with deadly MRSA.  I watched what it did to my father and I have listened to the numerous stories of others or their loved ones.  This is an epidemic that must be stopped.  It is not going away, unless we take a strong stand and push it away.  It was wonderful to hear the CDC officials saying that ELIMINATION is their goal.

  There is also fear amongst nurses and other health care workers that if they are ever diagnosed as being MRSA colonized, they will lose their jobs.  This is not right or fair and needs to be addressed.   No nurse should accept the constant inadequacies of their hospitals resulting in unprotected exposures to MRSA.  Without ADI, delayed detection of colonization and infection will continue, exposures will be commonplace and outbreaks will not stop.

My sincerest thanks to the CDC for opening up this conversation, and I hope to return there soon. 

There is so much more to add to our new “Conversation”.

MRSA colonization, in Healthcare workers and patients.

May 5th, 2010 49 comments

nursewithmaskhttp://www.fiercehealthcare.com/story/four-percent-healthcare-workers-mrsa-positive/2010-04-07

 

The link above reveals results of a study of MRSA prevalence in healthcare workers.  Very few studies have been done regarding this subject.

Amost every nurse I spoke with at the recent MSNA convention said “all of us probably have MRSA colonization”.  One nurse in particular was very upset at the prospect of ever being screened for MRSA, because of her constant exposure to it and because if she turned up positive, it might cost her the job that she needs to support her family. 

I was surprised that only 4% of healthcare workers, both direct caregivers and remote workers were infected in this study.  That is much lower than I expected.  But, at the same time it is encouraging.  My concern is what recommendation comes from this.

As a potential Healthcare consumer , I would not want a nurse who is actively colonized with MRSA caring for me, or for a vulnerable loved one……not unless a special effective precautions are taken.     Were the HC workers who tested positive in this study decolonized or not?  The article does not tell it all.  Even if they were decolonized, we know that MRSA is transient and many of these employees may turn up positive again 3 months after decolonization. Do we retest?  Maybe more than Standard and Universal precautions are necessary when a HC worker is colonized with MRSA.  Education is absolutely necessary.  The colonized HCW should be educated about not only using meticulous Standard and Universal precautions, but also using reverse precautions at all times.  They should be told not to work when they are actively infected with a respiratory illness (or an open MRSA lesion), especially while actively coughing, sneezing and blowing their nose.   MRSA can be coughed about 4 feet into the environment. There should be paid sick leave for this, since it is work acquired.  Also, a known colonized HC worker should always wear a mask while doing invasive sterile procedures, like dressing changes and catheterizations.    So, are these the answers to this dilemma…….. to use decolonization and education about extra precautions?  I’m not 100% sure, but I do know SOMETHING definitive needs to be done and the things I have suggested here may be a start. Why doesn’t OSHA take a stand on MRSA and other work related and acquired infections.   One thing I know for sure is that we can’t continue to ignore the problem.

Now as a nurse, I have to wonder if my job is jeopardized if I am diagnosed.  Is it?  If my employer finds that I am colonized, will it affect my job.  Will I be put out of work?  Will it affect job promotions or transfers into other departments?   These are legitimate and serious concerns.  MRSA now becomes not only a threat to my health and possibly my family’s health, but it is also a threat to my livelihood!  As a member of MSNA and the NNU and a long time supporter of Nurses Unions, I am proud to say that nurses represented by a union will have some protections in place regarding employment.  My chronically colonized friend, whom I have written about a few months ago on my blog, is a non union nurse.  She was exposed at work.  Since her MRSA pneumonia and sepsis, followed by a lengthy recovery and lingering disability, she has been unable to find work as an ICU nurse.  She feels that the places who will not hire her discriminate because they know her MRSA status.  Another nurse I know tested positive in an investigation for an outbreak in her hospital.  Her employment was not affected, but the records of her MRSA colonization and her decolonization treatment for it were buried………..she was told there was no record of it.  Healthcare facilities get the right to ignore the elephant in the room regarding the risk of infectious disease to employees.  They get to decide on policy that is either good and effective or lax and ineffective.  Unfortunately, very few organizations come to the plate with the safety of their nurses in mind. 

I see many problems at many levels with all of the above.  Nobody is recognizing the fact that Healthcare workers in hospitals become colonized with MRSA.  The problem is not acknowledged or addressed.  If someone is discovered to be colonized, the records are “unavailable”.  This may be because of fear on the part of the hospitals. They fear liability for their employees, because they have become colonized (and sometimes actively infected)  on the job.  And they fear liability from patients who become infected while hospitalized.  So, the usual reaction to that fear is to keep it all a secret or sweep it under the carpet???  News alert…these problems are not going away unless the hospitals get on board with prevention. These unresolved problems feed on each other!   We cannot fix what we do not acknowledge and measure.

I believe MRSA needs to be put out there, as an issue and a problem within healthcare facilities, for both patients and employees.  Preventing spread of MRSA by screening and Isolating patients is the first step to “getting to ZERO” with MRSA infections.  Addressing employees concerns by recognizing MRSA as a work related infection and doing appropriate and timely testing, treatment and education for it is the best approach. 

Trying to hide/bury the problem, or ignoring the huge population of patients who come in the door colonized,  and who subsequently become infected is no longer acceptable.  Too many times, it takes days or weeks to diagnose an active MRSA infection in a patient.  Most of the time, the earlier causitive problem, MRSA colonization, is never even detected because there has been no screening.   By the time infection is diagnosed dozens of HC workers and family members are all exposed.  Active Detection and Isolation will prevent this from happening.

Early detection of colonization or infection, isolation of affected patients, decolonization when appropriate and education are all necessary steps toward stopping MRSA.

NO NURSE should feel that their job or their health are  jeopardized by MRSA colonization.  It is job related and should be addressed as such, but it should not be ignored.   And NO PATIENT should have the worry that proper MRSA detection and prevention of MRSA is not being used in their hospitals or that their HC giver may spread MRSA to them. 

Today’s thoughts, on Healthcare Reform and the Maine Campaign for Better Care

May 4th, 2010 No comments

I am sitting home today, sick with a cold.  I will certainly survive my little virus, but it is keeping me down today.  I can only imagine being sick, gravely sick, day after day.  I have been blessed with good health and I have never had an ongoing illness with daily ongoing suffering.    In my work as a nurse I was confronted with the suffering of others every day.  But, I never considered that I could do much about it outside the constraints of my hospital practice.  I have found my voice, my bravado and my true calling.   The older I get, the more I realize that so many suffer.  They not only suffer the pain of ongoing illness, they also suffer the frustration of lack of or inadequate insurance. Because of lack of insurance, they do not get the care they need, so the suffering persists and gets worse.  Their finances suffer.  They suffer the emotional pain of knowing they may never get better.  Their physical and emotional pain and suffering is multi tiered and never ending.

My father’s suffering was horrible.  It started the day he collapsed with MRSA pneumonia.  The severity and the weight of the illness put him down and and kept him down.    His unnecessary and preventable  illness and death motivated me to do something to help others to avoid MRSA.  And now that work is taking me even further into activism to help direct healthcare reform money and policies  to  benefit the most vulnerable of all …the elderly and the most gravely ill patients of all ages.

My recent experience with the Maine Campaign for Better Care made me aware of just how important and exciting the new Healthcare Reform law is.  We all know it isn’t perfect.  My perfect HC plan would eliminate ANY profits on the backs of sick and suffering people.  I believe it is immoral to profit that way.  But, as we all know, there will still be profit. We have to make the best of the HC reform we got.  the MCBC’s goal is to focus on improved quality and accessibility of care for the elderly and for severely ill and handicapped people of all ages.  The plan for doing this is still in the formative stages, but many capable members of this group will set about at this work soon.  They will identify, categorize and work on problems..  Their approach will involve better coordination of care for all.  Redundant, repetative and unnecessary “care” and or diagnostics will hopefully be minimized or eliminated.  Volume or “more care” doesn’t  equal quality or safe care.  They will also work on better communications between patients and their providers.  This group will put the patient at the hub of their own care.  What a concept!!  They will empower patients and encourage patients to question their healthcare providers and pave the way for better communications.

I love the concept of all this.  I find it very exciting and way overdue.  If the MCBC does a public campaign asking for suggestions and stories  from everybody, please contribute to their ideas and their effort in general.  It is everybody’s chance to help direct and influence policies of the HC reform law.  The MCBC is bringing the new law to every citizen in Maine and will ask for their help.  In turn, Maine may set precedent on policy because only 5 States are running this campaign.

Survey about Medical Error or Hospital Acquired Infection

April 19th, 2010 No comments

 

If you or a family member have suffered a hospital error or hospital acquired infection, please fill in this anonymous survey.  The page is self explanatory.

http://www.empoweredpatientcoalition.org/report-a-medical-event

Lori Nerbonne, co-founder of New Hampshire Patient Voices

April 14th, 2010 No comments

Mycollegue, Lori Nerbonne RN, and fellow Patient Safety activist wrote this excellent synopsis about MRSA after her recent research.  I found it to be very organized and very well done, so asked if I could share it here on my webpage.

1.  Community Acquired and Healthcare Acquired are two different genetic strains
2.  CA MRSA is defined by the fact that it is a MRSA in someone who HAS NOT been exposed to a healthcare setting recently.
3.  HA MRSA is defined by the fact that you were recently or currently exposed to a healthcare setting .  It is not showing up in many patients until they get home from the hospital (they acquired it in the hospital) but this doesn’t make it ‘CA-MRSA’…it is still HA-MRSA that is now out in the community.
4.  CA-MRSA is largely treatable if recognized in time—not so with HA MRSA; much harder to treat
5.  You can have CA-MRSA when you go into the hospital and then get HA-MRSA, which can make you very sick
6.  Co-infections are causing serious illness in death 
7.  When you have large volumes of people bringing CA-MRSA or HA-MRSA into the hospital as carriers, you have a real problem and vice versa…when they are going home with it (and not being told which is often the case).  It’s like water pollution—it’s all being dumped into the same reservoir and colonizing many people
8.  It takes a commitment from hospitals and nursing home on a geographic level (in the same community or region/state) to have the greatest impact on reduction strategies because of this ‘dumping’ scenario I described above.
9.  Screening is an obvious aid in reducing MRSA because it identifies who is carrying it into facilities and who is still colonized before they go home.  It provides the crucial piece of information that is needed to first identify the host (the basis of surveillance in any contagious disease) so they can then be treated before they infect others either directly or via healthcare worker vectors.
10.  Hospital/Facility politics is a big reason why there isn’t screening/ADI:  Surgeons don’t want to be “told what to do”, hospitals don’t want to invest in extra staff and supplies that would be necessary, and they don’t want to implicate themselves/their facility if a patient is negative on admission and then positive after admission.
11.  We have CA and HA MRSA in hospitals (and many other bugs)…but the real ‘take home’ from this is not that “people are bringing it in”…..it’s that hospitals are failing to identify, isolate, and treat those who are bringing it in, thereby putting more and more patients and healthcare workers at risk of harm or death.  CA-MRSA can become virulent in sick patients.  Hospitals are filled with sick patients, so CA-MRSA can be deadly once it’s inside the four walls of these facilities; especially if patients get co-infections with HA-MRSA or other bugs (Klabsiella, etc)

Going into hospital? Protect yourself from MRSA.

March 31st, 2010 No comments

For about a year, I worked toward safer and more effective MRSA prevention in Maine Hospitals.  I proposed the very things that I learned of from MRSA prevention experts (Infectious disease doctors who have written recommendations, nurses, microbiologists, advocates and activists) , and hospitals who have practiced Active Detection and Isolation to stop the MRSA growth in their facilities.  But, Maine hospitals and  infection control  practitioners obstructed ADI.  It was even a struggle to get them to comply with the new State Law to screen high risk populations.   The entire process was contentious and arduous.  It was also controlled by people who do not do direct care of infected patients.

Not all of the populations who are at risk for acquiring MRSA when hospitalized were included in the current MRSA “prevalence test” in Maine.  The populations that are included are 1) patients who have been in the hospital or nursing home within the past 6 months, including transfer patients, 2) all ICU patients 3) Prisoners, 4) dialysis patients. 

The ones who were not included are  1) Immunocompromised patients, ie patients with diabetes, Cancer, HIV/AIDS,  and those on medications that render them immunocompromised, 2) Patients who are facing surgery involving implants, ie. Orthopedic joint replacement surgery, Cardiac valve replacement, Neurosurgical shunt placement, 3) Patients who are IV drug users, 4) Patients with open infectious appearing wounds.  Other populations are more susceptible to MRSA too, including the elderly, who are more prone to Hospital Acquired MRSA, and the young who are more prone to Community Acquired MRSA (those in contact sports, day care centers, close living quarters like dormatories).  All of the patients in this paragraph are known to be at  increased risk for getting MRSA, yet, Maine hospitals and their representatives fought against screening for them.

So, since only a part of the effective approach of ADI (and that part was severely diminished)  was accepted as law in Maine, what can you do to protect yourself from MRSA if you must go into a Maine hospital?

Ask your doctor for a simple nasal and/or wound culture.  This simple cheap test may save your life.  If you know you are scheduled for a hospital admission, do this test about 10 days prior to admission.  This allows time for the culture to come back and for decolonization treatment if necessary. After the culture is done, be sure to follow up on results because not all lab results are reported back in a timely way. This simple test, and treatment if necessary could save you from unnecessary suffering and/or death.

Why won’t your hospital just do this for you without you having to request it?  That is such an excellent question. Actually, during this current prevalence test, some hospitals are screening all new admissions.  But, for the ones who are not,  I have my own theories about why they just won’t do it without a request, none of them flattering.  The problem of MRSA and many other  hospital acquired infections has been brewing and growing in our hospitals for years.  The multidrug resistant infections have come front and center and increased mostly for the past 10 to 15 years.  There has been a complacency and helplessness attached to these infections and not a whole lot was done until very recently to STOP THE INFECTIONS.   I believe that the reason hospitals do not want to screen you for MRSA unless forced to by law or after a hospital has had a significant or deadly outbreak of the infections, is they are afraid of liability

They  do not want to be liable for proper rooming of patients to avoid spread of disease.  They want to continue to room colonized or infected patients with other patients, and not tell either one of their infection status.  This way they can fill beds, wash hands,  and hope for the best…..meaning…perhaps the infection won’t spread.  But, if it does, they can tell the patient that they probably brought the infection into the hospital with them. Without a screening culture, I guess they could actually say that and get away with it.  With a negative screening, will it would be less easy to blame the patient for his own infection.  This sounds negative and cruel, but I have spoken with enough victims to know that these things do happen, and they happen often.  I do not believe that hospitals intentionally infect patients, but they do not use all of the necessary steps available to STOP INFECTIONS NOW!  And when somebody becomes infected they are not entirely honest about the name of the infection or the origin of it.

So, go get that screening before you are admitted to the hospital.  If your admission is planned, get it early enough to have results and treatment if necessary BEFORE your admission.  Have family members bring in hand sanitizer for you and for your visitors and bring in disinfecting wipes for frequently touched surfaces.  Don’t share things, with your roommate.  Be sure anyone who touches you does so with clean hands.  Nobody should have to ask for clean hands, but it is a fact of life.  Just ask and don’t be bashful.  If you are too ill, have a patient advocate with you to ask and do these things  for you.These are some things that keep you in control of your own well being while hospitalized.

And finally, don’t linger.  The sooner you go home, the less your risk for infection.

St Patricks Day

March 17th, 2010 No comments

shamrock1This was always an easy holiday for me to remember.  My father’s middle name was Patrick for a reason.  His birthday was Saint Patrick’s Day.  He would be 85 years old today.

In his younger days, he loved to play guitar, sing and play harmonica.  He was a great dancer as well.  I loved watching my mother and him dance when I was younger.  They moved as one.  I could never follow my father the way she did.  He was so smooth and they glided beautifully together. 

At the AARP meeting at Christmas, there was a singer and a piano player.  They played and sang old favorites of the people there, most of them a generation before me!   When they played “Can I have this Dance for the Rest of My Life”, an elderly couple, probably in their 80s like my parents got up to dance.  It made me remember how beautifully my mother and father danced together.    It was heartbreaking and I had to leave the Christmas party. 

Who knows how much longer my father would have lived?  He already had some physical limitations, but he was getting around fairly well and living at home.  His home and my mother were the only two things he wanted.  He loved all of his family, but he thrived with her in his home.

He had a nice long life and he saw all of his children have their own families and do well.  His death would have been so much better for him and for my mother and family if he had drifted off one night in his sleep in his own bed,  and had never been forced to leave his home because of an unnecessary devastating preventable infection…..an infection that robbed him of every last bit of strength he had.   The acuity of my grief has eased but the sense of injustice just never goes away.

My goal, with the help of other activists, legislators, and hopefully hospitals is to stop the horrors of Hospital Acquired infectons with all of the necessary steps to do so.  Nobody should be robbed of their life and their loves  by HAIs.

Happy Birthday Dad.  I love you.