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Archive for July, 2008

MRSA: Patients Ignored, Left to Die – Redux

Last January I posted three stories I had been told, all within a few days of each other, about patients who had acquired MRSA in the hospital and had been revictimized by the system that would not treat them, listen to them, or help them get well. Over the next several days, I was condemned, chastised and even told my allegations were off base…

Today another comment was left on that post, and it compelled me to follow up.  Because as disgusted as I was with the reaction to that original post, I am truly even more upset and disgusted by what this poor young woman wrote to me today….

Here’s the synopsis:

The original post was called “MRSA:  Patients Ignored, Left to Die.”  It told three stories.  The first one was about a young woman who had (to that point) been in the hospital for almost a year because her MRSA could not be controlled, and because the hospital was not taking the steps needed to help her.  Update:  The woman, Tameka, has since died, 11 months after acquiring the infection. To those of you who suggested the story was untrue — I suggest you explain that to the woman’s family.

The second story was about Maxine who had been struggling to find anyone to help her or her family get someone — anyone — to treat them for the MRSA they had all acquired.  A number of commenters told me that could not possibly be true…. yet since then I have received at least a dozen additional emails reporting exactly the same thing — plus the comment that was left today tells the same tale.

Further, a good friend, someone I work with frequently and who works in healthcare, is dealing with this exact scenario with her father.  After knee replacement surgery, and despite a spiking fever and a swollen red surgical site, her father’s surgeon kept telling her and her dad, “Looking good!”

Update on Maxine:  I have not heard from her in many months.  I don’t know if she has found treatment, and I don’t know if she has gotten past the infection.

The third story was about a young man, Jeff, who had been treated by an ungloved doctor in an emergency room who, when Jeff asked him to wash his hands and put on gloves, told Jeff that the “MRSA thing had been blown out all of proportion.”  I know that most of you reading this will be incredulous — but I can almost guarantee there are some of you who think that doctor is right.

Why the follow up today?  Because today I heard from Sarah who tells a very frightening and sad tale about the MRSA her mother acquired after surgery a few weeks ago.  I’m going to reprint her comment in its entirety below — or you can read the original here.

In effect, Sarah’s mother’s experience is a compilation of the three originals.  The very sad part is that this story is repeated MILLIONS OF TIMES A YEAR.  The CDC’s numbers are 1.7 million infections per year, but Dr. Betsy McCaughey, director of RID (Reduce Hospital Deaths) proves in this piece that that number is way too low.

So here we are, almost 8 months later, and infection rates and experiences have gone from bad to worse.  What will it take to pull those denial heads out of the infection sand?  How difficult can it possibly be for a provider to wash his hands before he touches a patient?  Why can’t hospitals test patients for MRSA before they are admitted, then care for them appropriately if they already have the infection?

Patients — my advice to you is two fold:

First:  take a can of lysol with you to the hospital.  Spray anything you will touch, or that will touch you.  TV remotes, telephones, bed rails, bed linens — any type of surface can harbor infections.

Second:  Don’t let anyone in a hospital or doctor’s office touch you without washing and sanitizing his/her hands first.  Do NOT go to any hospital that does not allow 24 hour visitation — then make sure there is someone with you 24 hours per day to be sure that anyone who touches you washs and sanitizes his/her hands first.  Plus, make sure any equipment has been sterilized — stethoscopes, IVs — even the IV ‘tree’ that holds those bags of liquid — spray it !

Of course, there are a dozen other steps you can take — but these are a start.

Yes — I know I get wound up — I can’t help it.  There are so many, many safety problems patients have to contend with when they access healthcare.  Not all of them are so easily preventable, but most of MRSA is.  It costs almost nothing for a healthcare provider to wash hands.  It costs next to nothing to test a patient as s/he enters the hospital, then to manage the care in a place removed from other patients who are not infected.

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Here is Sarah’s post.  You can find the original here.

My mom who lives in Fresno California was recently diagnosed with MRSA. She got it after a surgery. She started to have pain and was throwing up. Her doctor that performed the surgery was in denial that she had MRSA.  Before my mom had the surgery she was scared that she was going to get MRSA. She has Lupus so her immune system is not good.  She did have the surgery and 4 days later she got violently sick. The doctor would not run a test to see if she had it.

The hospital doctor had to step in and order the test and four days later sure enough the test were positive.  After that her doctor finally came by to see her ( which he had not been back to see her since she first got ill and she had requested to be tested for MRSA ) he called her some unkindly names and refused to treat her. Everything happened in front of the hospital staff. He is the one who did the surgery and now he is REFUSING TO TREAT HER!  And the scary thing is that he had orders for her to have a catheter put in her.

The hospital doctor of course did not put a catheter in her.  The hospital doctor had to treat her and the doctor for disease control is also treating her.  They discharged her after 3 weeks in the hospital. So don’t tell me that MRSA is no big deal and don’t tell me that doctors and staff will not refuse to treat someone.  I know that by law they have to but that does not mean that they will.  They will come up with some kind of reason of why they can’t.


Not everyone can be treated by text book. In my moms case she already had a bad immune system you would think that after knowing my moms medical history that it would make sense to test for MRSA before having the surgery. Now after being out of the hospital for 1 week she started to throw up and was having pains again.  Since she can not find a doctor that will treat her she had no choice but to go to the ER. The staff there was rude! She informed them that she has MRSA and that she currently has an open wound and she also has a vacuum that is sucking out the drainage in her belly.

she was also throwing up and they laughed when she asked them to wear gloves before touching her. Her arms were wet and moist and the triage person did not care to wear gloves even if it was to turn her arm a certain way. She then asked if they have a separate waiting room to put her in and they again laughed and said you have to wait in the main waiting room like all of the others.

Why wouldn’t they have a room for contagious people that have MRSA that is currently vomiting? Or what happens to people who have chicken pox and they sit next to someone like me who is 30 years old that has never had chicken pox. What happens to the people who have a weaken immune system and they sit out there with the healthy sick people.

My mom waited out in the waiting room for 4 hours and she ended up leaving. The next day her home health nurse made her go back to the ER because she has lost 20lbs and was still actively throwing up. She went in thru triage and immediately was sent back to a room. She is still in the hospital and they did find 3 other pockets that is filled with fluid and they need to be drained.

I understand the MRSA is different for people who are healthy. They usually can bounce back. But what about the ones who have a weak immune system.  And by the way my mom is a clean freak. So what happens when the bloggers like the ones who are on attack and are in denial of how serious MRSA really is start to blame the patient on poor hygiene when it is the hospital staff and the hospital itself that laughs when they are requested to wear gloves. And if you have ever seen some of the staff that cleans the hospital do you think they really take that much pride in cleaning. I know people who use to work sterilizing the equipment. What a big joke of workers they were. Needless to say they no longer work there. They were given the job because their mom was a head nurse and no one had the balls to say that person did not perform her job well because you do not want to have any conflict with her mom who was one of the head nurses.

This all is bad.  My mom is only 54 years old she looks terrible and who knows how much longer she will last. I wonder if those other bloggers work in the medical field.

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A Sea of Broken Hearts – Dad Posts About the Loss of Alex

I’ve added another guest post this morning — one that will break your heart, too.

John T. James, PhD, a dad — and now a fixer — posted about his son Alex, a seemingly healthy 19-year-old college runner who one day collapsed, was hospitalized, and died a few weeks later.

The problem is, of course, Alex should not have died.  He didn’t die because his body couldn’t handle his medical problem.  He died because his doctors couldn’t handle his medical problem.

Dr. James has written a book called A Sea of Broken Hearts — you’ll likely want to pick up a copy once you’ve read what he has to say. He’s on a campaign to improve patient safety and establish a national statement of patients’ rights, something that does not exist.  (Most are surprised at the lack of standard patients’ rights, but that’s absolutely true.)

One more reminder that life is precious — and if we don’t advocate for ourselves, and protect ourselves from healthcare, we may not survive long enough to right this deadly system.

Read what Dr. James has to say.  Get angry.  Then work toward being a fixer yourself.

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Guerrilla Patienting: Getting the Healthcare You Need

Last week I spoke to a group of payers — health insurance executives, Medicare and Medicaid representatives — and shared with them the many ways in which we patients feel the American healthcare system is failing us.

The points I made came from you — my readers — from the many stories you have shared with me through email. Your frustrations, your debilitations, the loved ones you have lost… your substandard care or battles with your insurance companies…. your bankruptcies, your denials of care and more….

Of course, at first they couldn’t fathom why a “mere patient” would be addressing them at all. With one exception (Morton Kondrake, commentator from Fox News) the other speakers were all just like them — health insurers who were sharing the many tactics they were using to manage business, save money and cut costs.

I’ll give them credit for one thing — I was pleasantly surprised to hear them talking about improvement in care, what they call disease management, as one way they had attempted to keep costs lower. The idea being that if they could teach patients to manage their health problems, then those problems wouldn’t become so expensive to them. Unfortunately, what they were reporting was that disease management doesn’t seem to work for cutting costs. I don’t remember that anyone commented on whether it was improving the patients’ health….. but I digress….

So then this patient with credentials unknown (me!) steps up to the podium and explains why she had been asked to speak…. Many were uncomfortable (to their credit.) Some didn’t care. Most listened. No one asked questions. But a few did approach me afterward to thank me for being their conscience. That was a pleasant surprise, too.

I’ll share with you two of my main points. First, I explained to them that I’ve been teaching all of you — my readers — “guerrilla patienting.” I define guerrilla patienting as a way we patients can find workarounds to the system that is failing us so we can find better healthcare success for ourselves. If it sounds a little warfare-ish — well — aren’t we fighting for our lives?

And second, I suggested a dozen ways that patients, providers and payers could collaborate to find solutions to improve the system. That was my original assignment, by the way. I’ll be curious to see if any of the folks who heard me speak will come back for more ideas.

Today I have an invitation for you. Do you know of workarounds? Ways to get the healthcare help you need despite the system? Tactics you have used that you would be willing to share with others?

Soon I will begin a new page on this blog called “guerrilla patienting” that will address specific ideas and tactics. We’ll categorize them and make them known to others. If you have ideas you’d like to share, please email them to me (blog (at) epadvocate (dot) com) and I will give you the credit for the idea.

Each one teach one.  Patients — our time has come.

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July 2008 – Update on Randy Pausch

(The post below was put online this morning at 8:15 EDT. An update at 10 AM — Randy Pausch died this morning. My prayers are with his family.)
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Because so many of you, my readers, have checked here to learn more about Randy Pausch, I bring to your attention a comment made by Claudia, one of you, on my February post.

Claudia tells us there is an update on Randy’s page, and he’s beginning to struggle further with his cancer. Here’s a link to the Randy Pausch Update Page. (and thanks for the heads up, Claudia.)

If you are not familiar with how hospice works, this is a great opportunity to learn about it. Just as we empowered patients learn about taking care of ourselves when we get sick and need medical care, it’s just as important to learn how to prepare to die.

Our well-being during the last few weeks or months of life, and both physically and emotionally, is supported during hospice care. Patients choose hospice care at the point where it no longer makes sense to pursue curative care.  Hospice supports palliative care which means keeping the patient pain free and comfortable through the point of death.  Learn more about hospice from my colleague Angela Morrow at About.com.

My prayers are for Randy’s comfort and peace, and just as important, his family’s comfort and peace during this time.

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Read previous posts about Randy Pausch here.

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PS — For those of you who have left comments on my blog for Randy — please know that I have NO idea if they ever get to him.  I’m blogging about him out of my respect for how he has approached his disease and the lessons he has taught all of us.  But whether or not he even knows this blog exists is a question mark.  You are more than welcome to leave your comments here!  But I don’t know if Randy sees them or not.

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