Tuesday, September 28, 2010

My Husband is Sleeping Through the Night

I thought about writing an ode, but this information is too important to wait until I count syllables and perfect the meter.  My husband, the alien, is sleeping through the night. This is not just since his escape from the hospital. He’s sleeping through the night for the first time in years.  

He’s had to get up to urinate several times in the middle of the night for longer than I’d like to record.  When the hospital let him loose, he had urinary retention and didn’t have any sensation when he was full.  The doctors said part of his problem was his enlarged prostate, which is normal in men over 60.  They put him on Flomax and then Rotoflo. Their drugs weren’t helping.

So, off to the web.  I found http://www.nlm.nih.gov/medlineplus/druginfo/natural/patient-pygeum.html

Pygeum is available at most health food stores and online.  Within days of starting to take 2 capsules a day, my husband was able to empty his bladder, and he’s sleeping through the night.  He still has plenty of healing to do.  Sleeping will help him do that.  Yay!

Saturday, September 25, 2010

Why I'm Not Suing

I’m getting angry emails from a reader who is sure that if I don’t sue the hospital that nearly killed my husband that the hospital will endanger future patients.

She imagines that a lawsuit will make them rethink their policies, and change their evil ways.

Instead, mal-practice lawsuits have led to an increase in the rate of caesarian deliveries, and an increase in x-rays and other potentially harmful and / or painful testing.

The problems that nearly killed my husband are
1) a mistake-prone suture system that is used with laparoscopic abdominal procedures that caused intestinal occlusion
2) a surgeon who delayed readmitting my husband until he was dehydrated and in kidney failure.
3) a drug reaction that caused atrial fibrillation
4) a drug prescription that was in conflict with a drug he had been given by IV the night before.  (He refused the drug, so this mistake did not affect his health.)

Of these for errors, only the prescription error could possibly be affected by something the hospital has control over.

We have talked with the surgeon and she states that she will be quicker to readmit in the future.

Surgical procedures are not decided at the hospital, but rather by national medical boards.  Drug reactions are risks every patient is subject to.

A lawsuit could potentially change the way in which drugs are prescribed within the hospital to reduce the likelihood of contra-indicated drugs being prescribed, just as computer programs at pharmacies are programmed to flag conflicting prescriptions.  But since my husband was not harmed, and we have no expenses based on this error, we are not in a position to sue.  Our job is to educate the doctors and thereby prevent such errors in the future.

To that end, my husband wrote to the chair of cardiology:

Please allow me to share an insight gained from my recent stay at [hospital]
(8/16-8/25) to reverse an occluded small bowel caused by a hernia
repair (8/11).

On  the night (8/24) before my release from [hospital], I was given a
potassium drip, which is specifically a contraindication for

Yet, on the morning of my release (8/25), despite normal blood
pressure (124 / 80) and the potassium drip, a cardiology resident
ordered that I should resume my lisinopril prescription.

Although I knew enough to refuse it, the nurse tried to convince me to
take it.  Anyone less informed than me would have taken it.

I think it would make sense to discuss with cardiology residents why
they should check for contraindications before resuming
anti-hypertensives. It would be ideal to deploy a program to read new
orders entered into charts and catch contraindications in real time.

I authorize you to study my record in order to review all aspects of
my care. Good luck with your work.


In response, the chair of cardiology wrote back:

I really appreciate your comments and input. I am going to review the record
and discuss medication use with the resident. We will then put this issue on
the agenda for one of our cardiology education conferences. It is attended
my students, residents, fellows, attendings, nurses.

The state of California (where my correspondent lives) has a procedure to ensure that patients can file grievances and protect the safety of future patients:  http://www.informedpatientinstitute.org/HOSQuality-CA.php

In theory a patient could sue instead of following these procedures, but any court would tell the patient to follow these procedures first and only if they fail, is a lawsuit considered.


Medical care is Russian Roulette.  Every time we let somebody cut into our bodies to repair or remove a disease situation, we are gambling that our lives will be better as a result, but we acknowledge on the informed consent form that we know we are risking potentially life-threatening outcomes.

The goal is to improve the educations of the people to whom we entrust our health.  We are their partners, not just their clients.  I consider it crucial that we treat them with respect and help them improve in a supportive manner, just as we expect to be treated when they help us.

Suing hospitals will have no effect whatsoever on patient safety.  Hospitals have budgets that include money to pay people who sue them. The legal department is not connected to the training of surgeons. No matter how effective we are, surgeries and hospitals will always endanger future patients. We can minimize that risk best by explaining errors that threatened us to doctors and nurses and hospital administrators. 

Friday, September 24, 2010

Dancing With Pilates Students

I’m getting pretty good at mat Pilates. Roll-ups. Seal. I can even sort-of do Teaser, which is a kind of sit-up where you pretend you have helium balloons attached to your chest that pull you up to sitting from lying flat on the floor.

Mat Pilates is primarily work with the 4 layers of abdominal muscles, which Pilates students like to call “the core.” And mostly it is done lying on a soft mat.

Pilates teacher can’t make it, so in walks Dance Teacher as substitute teacher.  (Unlike grade school where substitutes were fair game, we exercise junkies are grateful to anyone who will teach us.) 

“We’ll work the core” she promises.  Dance teacher get us up off our mats. She does wide sumo squats, but on her they look graceful.  She treats the body like an X with arms and legs serving as the 4 spokes on the X.

Since the accident, I can’t straddle my legs.   My triangle in Yoga is a sharp acute isosceles. Not the equilateral or obtuse triangles that most students achieve.  X is not my favorite letter to imitate. 

Dance teacher leads us around the room stretching her X, low to the floor, wide to the side. I feel like the tin man in need of oil.  She takes pity on me and leads us in a grapevine.  I thought I could do grapevine, but I watch in the mirror. She makes it flow. I’m more like a wobbling clothespin.

I couldn’t get enough movement, following her, to work my core. It was hard enough to work my legs. And if I don’t have weights is my hands, my arms can go all over the place with ease.

I think I worked a different kind of core – the one that has to deal with what I can and cannot get my body to do.  I’d narrowed down the classes I take to things I can do – bicycling, trampoline, yoga with props, Pilates on a mat, swimming, Feldenkrais, free weights. I even signed up for a rowing class.  If I don’t have to move my legs to the side, I can do it.  I can keep up with the 20 and 30-somethings. I  was starting to think of myself as being in good shape.

I’m no dancer. Then again, I wasn’t much of a dancer before the accident, either.

Thursday, September 23, 2010

Checking Out

This is embarrassing. There are quite a few checkers at my grocery store.  And they don’t tend to stay very long. I try to remember who has helped me. I try to greet them, say something that shows I remember them.  Last week I had a checker I did not recognize. As I was trying to start an introductory conversation, he said.

“I like your new haircut.”

This checker sees about 30 people an hour all day long. I only shop about once a week.  He not only recognized me, but noticed that I’d gotten my hair cut.  And I didn’t even remember seeing him. 

Maybe this kind of oversight has plagued me all my life. Maybe it explains why I’ve never been socially ept. Maybe I was having an off day.

Monday, September 20, 2010

Why Me? Why Not Me? Part 9

By Alison

IX. Here We Go Again

So in the last episode, I had a nice clean bladder with maybe a little red spot on it. A brief day surgery afterwards showed that it was not cancer and in fact there was no cancer anywhere in my bladder or in my urine. I had a three-month vacation from doctor visits. I could tell people I had no discernible cancer, and some of my dear ones surprised me: one woman held me close and kept saying, “Thank you, Jesus.” I was very touched. We have worked together for a long time but I did not know she was so affectionate.

However. However. As you may know, it is not my style to “rest easy;” a couple husbands would probably still be with me (well, one or the other of them anyway, you know what I mean) if it were. I am…alert. I pay attention, good or bad. (I was visiting a friend recently and overheard her asking her partner something, and the partner said, “I’m fine, I’m fine!” I knew that voice, exasperated, impatient. And I knew my friend had seen or heard or sensed something and was paying attention and asking. *Sigh*)

So I started in on checking out other health matters that had been set aside. I started taking more blood pressure medicine so it would go lower. I had tests of my blood sugar, unfortunately so far positive; I seem to be cooking up a case of type II diabetes despite healthy eating. I must eat too much even of blueberries. I had my heart checked out and praise be, it is a wonderful healthy heart.

However, by mid-August I had a few signs. I had a tiny drop of blood. I had changes in urine. I had a low, deep pain that sometimes came and went in a flash. I was alert, I was paying attention, and I emailed my doc and my nurse and asked: Can I give you a urine sample to look at? Something is up. And please include cytology (i.e., checking for cancer).

So I went in and gave them a sample August 25. Not sure when the results came back, but they were positive. There were “atypical cells.” That is: the cancer came back. “We thought it was a goner, but the cat came back, ‘cause it wouldn’t stay away!”

Not many know this, though I did try to tell people: between 50 and 90% of people with bladder cancer get it treated and it comes back WITHIN ONE YEAR. You know, those are really short odds. People can say all they want about having the best attitude and eating the greatest food and etc., but the odds are short and they belong to the cancer, not to me. That’s my take on it anyway. I mean, this sucker didn’t even wait for my scheduled appointment in a mere three months!

I saw the doc for yet another cystoscopy and we could see cancer; not so much the seaweed and the flowers, but a big bulge and a bleedy spot and – just not OK. I had a vacation all planned so I went on it. I am back (and it was wonderful). In two days I have another surgery to remove the tumor(s) again.

As I was leaving my doc’s office I turned around and asked him: Is the next one [surgery] the big one? He said, yes, he thought it was. I was so glad he was honest with me, I ran over and shook his hand. He says I have failed two treatments (there it is again! – in fact, THEY failed ME), and “three strikes and you’re out.” That is, three times of having this cancer despite treatment means the cancer has to come out; lock, stock, and barrel. Or, in my case, bladder, uterus, and ovaries, and who knows what all else.

Thing is, I kind of had a feeling. From the beginning. It is good not to be shocked and horrified. It is good to think, Ah, so…it is as I thought. At least, I prefer it so.

Sunday, September 19, 2010

We're Both Healing

This morning, my husband only had 100 ml of urine left in his bladder to remove with the catheter.  His bladder is working again. His urologist says he can go 2 days without using a catheter and see how much his bladder still retains.  Yay for healing.  My husband is a health food nut and an exercise junky. But there’s no way to exercise the bladder – it just has to heal on its own.

It’s such a relief to watch him regaining strength and function, instead of seeing him in the ICU with a tube down his nose, draining his stomach, tubes in both arms dripping who-knows-what-all into him at such a rate and in such combinations that he was puffing up and turning red.  His docs are telling him to take it easy. I don’t think his idea of taking it easy matches theirs.  He’s already riding his bike and doing at least 40 minutes of exercises with me in the mornings.

Today’s computer client was easy.  There really wasn’t anything wrong with his computer – he just needed me to show him how to use it to do two new tasks.

Yesterday’s client needed some instructions for setting up some new software and for learning a new trick with some old software. She also needed a new toner cartridge.  We discovered she could get $20 off if she promised to mail her old one in the postage paid envelope that will arrive with the new one.

I finished Mockingjay.  I don’t think it’s a spoiler to say We’ve seen the last of the Hunger Games. And it’s a pleasure to watch Katniss growing up.

A couple of weeks ago I got the long anticipated “I love your writing” from a local producer.  I did the requested rewrites.  No word this week.  I’m still hopeful.

Dell replaced more parts in my recalcitrant new computer.  It’s still going into spontaneous reboot, freeze-ups, and attempting to boot from the CD drives at random.  Now they want me to download a new bios from their website and also the advanced chipset.  That is going to have to wait until I finish backing everything up, which I’m doing because I don’t trust this new puter.

And my own personal good fortune – since Monday, I can get up from sitting or lying without limping.  I’ve been limping for the first few steps for so long I’d forgotten what it was like to get up easily. I don’t know what happened. The night before was really bad, but I haven’t limped all week.  Yay!

Friday, September 10, 2010

Morpook, The Little Motorbike That Could

I didn’t start out wanting a motorbike. 

My father, as part of his midlife crisis, before he dumped my mother for a woman my age with my sister’s name, bought a foreign sports car and a new house across town – the horror of it all – the school district of my high school’s greatest rival. And worst of all, the rival high school did not have Russian, which was the foreign language I was studying for my college requirements. It also didn’t have a cabinet for earplugs, which my father clearly needed because he was always yelling at his 3 children to BE QUIET!

I filed and got permission to take my senior year at my old high school, provided I could get there.  I’d always biked the 3 miles to school.  The new house was too far to bike.  My father didn’t care about my Russian classes. He didn’t care where I went to high school. If I wanted to continue taking Russian, I had to figure out how to get there.

I still didn’t think about a motorbike.  I was 17. I thought about a car.  My grandfather said, “Buy American!”  I couldn’t figure out why the country of manufacture mattered. I was studying a foreign language. I was learning folk dances from many countries.  It seemed to me that people in any country could make a perfectly good car.

My father took me to his car dealer, where he’d bought the foreign sports car.  The dealer said he had the perfect car for me.  A German Ford, a Taunus.  It cost $350.  That was about the exact total I expected to earn from my summer job with Head Start.  There would be $40 left over.  With that I planned to buy a manual typewriter.  I agreed to buy the car.

From the beginning, that car was trouble.  The driver-side door wouldn’t stay closed. The gear shift kept jamming.  I kept applying grease to the door tooth.  A friend stuffed one of my stockings (that had a run) into the gear shift channel and that helped it move more easily.  I got through the summer without major repairs.

But come school year, that mean car started needing real repairs. An alternator. A carburetor. And worst of all metric grommets that I had to order from Germany.  I had to take an after school job at the Girl’s Club, teaching crafts, just to pay for the repairs and the gasoline and oil changes. About six months of this and I saw I could not afford a car.  That’s when I started looking at motorbikes.  

Vespas were cute with their low step through, but the price was too high.  Hondas were attractive, but you had to carry an oil can with you and measure out oil to mix with the gasoline whenever you filled the tank.  I settled on a Yamaha 50, which had separate tanks for the oil and the gasoline.  It cost the same as my Taunus, and my Taunus, had unbelievably lost value in the few months I had owned it.  Don’t used cars ever bottom out in value?

Plus by this time, my father and I were totally on the outs. He slapped my face when I told him I wanted to move out.  As soon as I graduated from high school, I took a full time job at an electronic assembly plant, found a furnished apartment to rent for $40 a month including utilities, that had a place to park my motorbike, and I started taking night classes at the junior college, which at that time in California was free, except for books.

I also met my husband at a folk-dance cafĂ©.  He was fascinated with my motorbike. He wanted to ride my motorbike.  “Sure, if you know how to ride a bicycle and you have a helmet.”  He had neither qualification.  But he was serious.  He bought a bicycle and helmet and he learned to ride.  We rode my motorbike around the city. He rode my motorbike to his college graduation.  We took the motorbike to Berkeley when he went to grad school.  We moved it to Colorado when he became a post-doc, and eventually a professor.  

Morpook was a good investment. She got great mileage. She almost never needed repairs and when she did, they were affordable.   By now, we had children.  No matter how much they asked, I would not let them ride on Morpook.  

I was invited to try out a new kind of motorized bicycle, and write about it for the local paper. One of the forms on the questionnaire before the ride was, “Are you comfortable in the English language?”  No, not really. I’m a poet. I’m always struggling to find just the right word and always feeling let down by the words I choose.  But I don’t think that’s what they meant, because the next question was, “If not, what language are you comfortable in?”  Certainly not Russian. I only studied that language for 3 years.  I had almost 3 times that much experience in English.

I rode the motorized bicycle around the demo course.  It didn’t accelerate as easily as my 11 year old Morpook. The seat wasn’t as comfortable.  I concluded my article by saying, “I’m not selling Morpook.”

But about a month later, I hit a pile of sand in the road. Morpook stopped and I didn’t.  Morpook wasn’t hurt. I was bruised and scraped.  It seemed to me that I needed to drive something more safe, now that I had children to take care of.  Morpook was for sale.  Her new owner loved her immediately.

We bought a station wagon, that we named Square. He was really a rectangle. He was made in America. He ate gasoline and repairs.  He never got in an accident. And everybody laughed at me when I admitted I drove a station wagon.

Wednesday, September 8, 2010

There’s No Point in Getting Angry With People For Being Incompetent

My husband, the alien, is finally well enough to start getting angry with his doctors.  The thing is when all is said and done, none of them knew better; none of them put his life at risk on purpose. When you’ve nearly died twice in the past two weeks because of medical error, you want somebody to blame, somebody to hate.  But these doctors and medical residents are just humans who made mistakes.  One of the medical  residents apologized for his part in hurting my husband, and I found myself consoling him – I know you didn’t become a doctor to hurt people -- If you wanted to do that, you’d have joined the CIA torture division.

And now it is my husband’s turn. He’s alive. He’s getting stronger. He still has a long way to go before he can resume his usual active life. Being angry is part of that – but unfocused anger doesn’t solve problems. My husband is a problem solver.  How do we solve the problem of incompetence?

We can decide not to go back to the doctors who made these mistakes.  But it would be more useful if we could train them so they don’t make these mistakes in the future. That is another battle.  How do we talk to a hospital staff that is in denial and defensive mode?  I can only hope they want to improve. I’ve written letters to the appropriate people spelling out the exact errors and procedures that would prevent repetition.  So far they have not responded.

Wednesday, September 1, 2010

How I Became the Kind of Shopper I Used to Hate

When I was in college, I worked odd hours between classes in the men’s clothing section of a huge discount store. It added up to a 40 hour week, and was enough to pay my rent, my books and food and motorcycle payments.  Nothing more. No eating out. No extra books. No new clothes.

My jobs included folding pants of matching color and size and stacking them together, returning items from other parts of the store, retrieving clothes from the try-on rooms and putting them back neatly on display. I also had to constantly survey the racks to restore garments to their proper sections. And I ran the cash register.

I never could figure out why people would put down a bag of chips from the grocery section on top of the yellow shirts.  Or why they would hang a pair of purple sweat pants on the rack with the gray permanent-press slacks.

Then I faced the problem of what could my bloated husband wear.  When he came home from the hospital, his waist was 7 inches bigger than normal. Even the most worn out elastic waist pants were too tight. Only his robe could provide the modesty he desired.

I went to my local discount shop, similar to the one I used to work in.  I looked at the pants in the men’s section.  Unlike when I worked in such a store, there were no staffers around to answer questions.  And the pants were not marked with inches for the waist measurements. Instead they had mysterious labels like XL and 4XL.  I had no idea what size my husband needed.

I snagged a staffer who was walking through the shoe section.  “I need to make sure I get a pair of pants that is big enough for my husband. Do you have a tape measure so I can measure the waist?”   “Tape measures are in hardware.”  “Where is hardware?”  “Upstairs.”

I went upstairs, carrying a pair of pants that I thought might fit. I saw plates, and mirrors and toys.  I snagged another staffer.  He pointed off to one side of the store.  I followed his indicated direction and wound up in pots and pans.  But about 100 feet away was hardware.  I found a tape measure.  The pants I was carrying were too small.  I took the pants and the tape measure downstairs.  Nothing in Men’s was big enough.  I looked up, hoping for inspiration.  I saw a sign: Big Men’s.

I looked for Men’s again, but it seemed to have disappeared. I saw a woman pushing a cart who was wearing a store uniform.  “Can you tell me where Men’s Clothing is?”  “I work on the 2nd floor. Men’s clothing is on 1st.”

I didn’t want to carry the too small pants any more, so I hung them up a rack of other clothing.  

In Big Men’s were more clothes with mysterious sizes: XXL, XXXL.  I saw a staffer.  “You need a 4X.”  I found a 4X.  I measured it with the tape measure.  It was much too big.  The plain XL was too small.  But a 3X was just right.  I put the tape measure down on the carousel with pants in all sizes and took my find to the register, knowing I’d just created the kind of chaos that I used to think made no sense at all.