Thursday, September 26, 2013

PATIENT-MD EXPERIENCE another ray of hope

Every time an MD shares the truth about an unpleasant or just plain horrid hospital experience, I feel that perhaps we will begin to speak up for ourselves and offer feedback and truth without fear. 
From KevinMD:  read for yourself. . .

My patient experience wasn’t an outlier

LUMBAR FUSION - when you go it alone

Some hospitals should have a sign over the door:

Lotsa luck if you come here without a relative to run interference for you.

There is one good thing about going to the hospital when the nearest relative is hundreds of miles away:  the nurses and doctors have to look at ME instead of my relative when they speak.  Unfortunately, that has  meant I had to fight my own battles.  After doing that in three hospitals in three months last year, I should be tough enough to run for Congress.

Here are some things I learned:

The nurses and aides in all three hospitals were nice.  And some were very, very tired.
Or just overworked.  

Before you go into the hospital:

Do not take any medicine with you unless you are positive you will need it during your stay.
The most humiliating multi-episode problem was explaining to two male persons how older women use a certain cream.  During the first episode, almost a hundred dollars worth of the stuff was splattered on the bed.  Was my insurer charged for this?

Before you go in, insist that your doctor or his assistant  tells you what you will need to wear and if you will be able to get clothes on 
over your incision, brace, or whatever.  I wore the same pants during my entire stay in post-op rehab because I had to be in the halls and even in the yard, so fluffy housecoats or hospital gowns were out, and only this one pair of knit pants would fit over the enormous brace I had to wear.

Tell your surgeon or the admitting doctor or anyone in charge if you have special food needs, for example five or six small meals (instead of three big ones) if you have a hiatal hernia.  Then tell him again.   The first couple of days, I couldn't reach my tray, and didn't have the energy to complain or eat.  When I could actually eat, in all three hospitals, I had to ask repeatedly  for yogurt for my extra small meals.   Also, we were graded in rehab on what percentage of our tray we finished - I guess no one got the memo on the small meals.

Practice saying this fast:  Please give me my book, glasses,  water, cell phone, and my call button!
Hospitals are not hiring extra staff, so nurses and aides are in a hurry. And you may not have a nightstands for your things.  At any given time in the surgery hospital and especially rehab, I could not reach my food or some or most of the above.   

Practice Calling "Help!" 

After you're admitted, Do not be afraid to yell HELP if you are stranded in a chair or wheelchair far from your call button.   
A hospital is no place to be Mrs. Too Polite or Mr. Calm Executive.   Call for help before it's an emergency.

If I had asked oftener and quicker for all I needed, I might not be complaining so much now!!

Thursday, September 19, 2013


 RAPE ON CAMPUS Tougher Policies. . . RE MSN News today:

 My alma mater was absent from the names of universities with new task forces aiming to institute the new campus rape policy by the spring deadline.  With a leading medical school hospital, wouldn't you think my school would be on this? 

Do you think the parents of students do or don't read news items like this?  Including dads at work looking at them?

Rape is a health issue, as well as a safety issue.  

If I were about to pay for an education for a daughter, might I not be looking at issues like this before I encourage my daughter to choose her college?

If I'm a young woman choosing a college, shouldn't my  choice schools have a highly visible position on women's safety that I can see and hear about?  Shouldn't my choices all have publicized their new rape task forces?  Isn't it the school's responsibility to stress their female student safety?  Especially if I am coming from a town where I have always felt bulletproof, and have no self-defense skills?

I am embarrassed that my college and my political party aren't talking about this.

Please let me know what you think.

Wednesday, September 18, 2013

SPINE SURGERY AND OTHER "BAD NEWS" One doctor tells about how scared we were and. . .

Recently  I read Dr. Peter Ubel's RANT in Psychology Today, and also on his website.  I especially liked to a paragraph where he discusses how physicians respond (or don't) when we are scared.  I had recently written that it might be my fault when I've gone home without getting answers or even asking the right questions.  This one paragraph from him made me feel better about how much I can absorb when I'm scared.

Right now I'm meeting all new doctors in my new state.  In an appointment with one new doctor, although she has my complete medical history, she didn't seem to know or believe how scared I could be about the possible results of the next text. Her "Relax!" was not what I needed to hear.

Other patients have written, and even been quoted on the air about fear of the next test, that may give them new bad news.

If you're interested, read his Rant on PT, or Shared Decision Making on his website.

Sunday, September 15, 2013

LUMBAR FUSION - A Year and Six Days

  A doctor once said to me:  It's not like a car, Margaret.  You don't just pull out the bad part and plug in a new part.   It takes time to heal.  I thought all my doctors were saying that when nine months or 12 months was past, I'd feel normal.  The pain would go away.  And stay away.  I didn't even ask what to expect after nine months or twelve months.

  Even after I fell on the saltillo twice in the middle of the night, soon after arriving in Texas, I felt better than I expected. There were periods as soon as five months after surgery, when I felt cured.  A day here or there in the spring or early summer when I walked around the shopping district without the cane.  And yet there were setbacks that lasted weeks.  Walking has usually helped.  Elevating my feet always helped with pain in the night.  Now I don't even take the cane in the car with me.

But this morning I had tingly legs (the first thing they had asked about after the first round of nerve blocking shots after the diagnosis).   Yesterday I had leg pain.

 An X-ray after the night-time falls came back normal.  And I haven't fallen since.  The only explanation I can think of for current symptoms is that I postponed the surgery too long. Those leg nerves took a beating.

The surgeon says only sit for a half hour, then get up and do something, move around.  But yesterday I sat for an hour in an absorbing meeting, and not for the first time.  Then I couldn't resist sitting for awhile in Starbucks with my book.  I wanted my "normal" life back.  But it was probably "normal" life (moving some furniture ever so carefully) that sent me for diagnosis and the first round of shots two, almost three, years ago.

Now I'm working on "New Normal."  Because I have to.  After all, even repaired cars still need maintenance.  And my mechanic says I'm not 29 anymore.

Tuesday, September 10, 2013

DOCTORS: Some things to ask for, insist on, and give thanks for

We may suspect that there could be a little more "CARE" in our healthcare.  We may not know specifically what's missing, but the wheels aren't turning smoothly.  

In California, my caring, intelligent family doctor led me to other skilled and caring physicians.  Once,  an accident or divine intervention led me to another really kind and skilled doctor.  I felt blessed.  Then I moved away.

I wish medical care in my new state could always be what Dr. James Salwitz spelled out today in Sunrise Rounds.  His post, The Doctors I Love, sounds like a bill of rights for patients.


Monday, September 9, 2013

CANCER Are we really making progress?

Today Dr. Miranda Fielding told a wonderful story of a courageous patient on

I encourage you to read it.  At the risk of plagiarizing myself, this was approximately my comment:

I salute the woman in the story, her doctor, and other brilliant oncologists. For me, the key phrase is "the cost of that survival."   And Dr. Fielding is courageous enough to use the phrase "radiation induced."

On this one patient, radiation has been used for about forty years.  

Trying to concentrate on the story, I kept thinking: Where is the research?  Where is the research? 

 We can make a six-speed automobile; we can equip it so it avoids hitting the car in front of it. Have we spent more money on automotive research than on  cancer cures? Do we spend more money on automotive research than on cancer prevention? Who pays for the research?  Who's in charge?

 What do we care about?   

Thursday, September 5, 2013


The war against pain medicine, which has been  and might still be called the fear of adequate pain medicine, is apparently not over.  The latest AARP Bulletin published a letter suggesting chronic pain may be one cause of rising Boomer suicide rates.

This war has waged since the Reagan years.  I read daily and blog regularly about the patient experience, yet the medical sites I regularly read almost never discuss inadequate pain relief.  Surely doctors, as well as their patients, come to the point of needing more serious help with their pain. So why the silence?

I've been fortunate so far that my high pain threshold has, except for a couple hours one night, kept me from needing more help than I could get. But the key words may be "so far."

How do you feel about this issue?  Let me know.