Batter Up

Doctors in the United States practice the best medicine in the world, to which I say, when they are finished practicing, let’s see if they can do it for real.   According to the Commonwealth Fund, our healthcare system is the costliest in the world.  Yet the quality of care ranks last among major industrial powers in the world.

I think we have known that sad fact for a while.  I wonder how those of us with progressive chronic illnesses evaluate the ammunition in the holsters of doctors.  Can physicians hit the broad side of a barn with whatever they are firing?  My progressive MS long has had the best and brightest shooting blanks.  My doctors are good people without options.

Before the stem cell trial, I had abandoned the regular care of any neurologist.   I grew weary of trying therapies intended for relapsing MS to see if they did any good. I went through all of them.  The interferons did nothing to stop the progress of the illness.  IV steroids offered mere moments of slightly enhanced muscle strength that had no lasting power and threatened bone density.

I embarked on a one-year regimen of chemotherapy, Cytoxan, and barely made it to six months.  The stuff only wiped out my quality of life, making me constantly sick, weakening me and turning my hair white.  I don’t much care about the hair, but I morphed into a fragile fellow who might take a tumble in a strong wind.

After the daily injections of another drug intended for RR MS, I moved to Tysabri, which had no effect, and then moved on to the oral agents.   By now, I was adding up the bus fare spent crossing town for treatment and decided something had to give.  And so I retired from my job as a professional patient, no letter of resignation needed.  I quietly vanished.

Don’t get me wrong.  I asked the docs to think outside the box (Good line, huh?).   Physicians cannot be faulted for throwing everything they have at a disease.  Sometimes it helps, they say.  Usually it does not, I reply, but it sure beats doing nothing.  Frustration knows no end, though I am hardly the only one in this position.

Chronic illnesses by definition are incurable.  Often they can be managed, never visible in the rear view mirror.  Expectations can be out of whack and highly unrealistic.  We hope, therefore we are. Positive outcomes become elusive, but we must continue chasing them.

Too often, however, we expect better than we get, maybe because doctors do not communicate with us.  We have to be our own advocates.   Ask questions.  Challenge doctors.  Push hard.  Who better to do that than the person in the hospital bed?  We need to step up to the plate.  The on-deck circle is empty.  I would rather be treated in the USA than anywhere else, but I would like to be treated a little better.

 

 

 

 

18

No Tears, Please

When I began writing this blog more than eight months ago, I expected my share of ugly responses.  People who bother to write generally are angry, I figured, and there is the inviting anonymity of the web, where anyone can breathe fire with no accountability.  Maybe that saves on therapy bills.

My prediction was wrong.  Of course.  Individuals have been thoughtful and kind.  I live with a woman who often thinks my real problem is that I am dealing with a loose screw.  Readers have spared me such critical comments, and Meredith just likes to jerk my chain.  I am uncomfortable, though, when readers thank me so hard and often.  The clot was a huge bump in the road, but no more than others have endured.

Please allow me to clarify a point.  I am not brave, and I am no hero.  As with most of us, I am but a survivor.  There is no red badge of courage.  There are no medals or merit badges handed out for coping with serious sickness.  Having a good life is its own reward. My participation in the stem cell clinical trial is not courageous.  It is a wonderful opportunity.  I understood the possible benefits.  It was a genuine no- brainer.

I am humbled by the rich history of individuals before me, who really did demonstrate bravery in far riskier trials.  “Of course, no clinical trial is one hundred percent safe,” according to a Discovery web site.   “ There always is a risk that the prescribed treatment may not work or even worse, that it can lead to serious health problems or even death.”

I had friends perish in NIH trials for cancer drugs.  They were terminally ill and understood the risks.  This stem cell clinical trials uses autologous (our own) cells and has a very different risk profile.  Meredith and I weighed the risks and went forward with no hesitation.  No heroes in this house.

I am just a goofy guy who puts one foot in front of the other each day and does the best he can.  I dare say that would describe just about all of us.  I have said many times that I am not a victim.  Well, neither am I a hero.  I grabbed an extraordinary opportunity to perhaps have a better life.  I will survive, I am sure.  Will I flourish?  I will let you know.

 

 

0

31

Live and Learn

Life in the Intensive Care Unit  is not a picnic.  Bright lights and a constant roar are a way of life.  Of course,  life is the business  of the ICU.  The easy existence in a world of chaos cannot be.  When a patient has a blood clot perched in a precarious place, and the docs determine that the future can be long or very short, every minute counts.  My blood was as thick as spring water as the Heparin flowed into my veins.  What was happening was clear.  Why this was going on became the murky question of the hour.

I introduced the answers into the conversation myself as a light went on in my thick scull.  This threatening situation was my fault.  Instinctively, I knew that.  I am working on a book proposal and writing this blog.  I am spending an enormous amount of time, maybe five or six hours at once, sitting at he computer.  It never occurred to me to stand and take a few steps.

When healthy individuals sit, they move their legs around and change positions with some frequency.  Legs are crossed or extended straight out.   Feet tap or rest on a stool or other object.  When someone with MS or other illness that limits mobility sits, legs become dead weights.  They do not move, sometimes sending a warning signal by going to sleep or pulsating with pins and needles.  I was oblivious.

Now add insult to injury.  My right side, extremities and all, is worthless.  Fine motor skills abandoned ship long ago.  I wrote my last books with my left hand alone.  And I am legally blind, which means I must sit with my face practically touching the screen.  The scene looks ridiculous.  My back aches as I hold that position for long periods of time.  When I finally shift in the chair, my feet do not move.  When my back aches, I do not think of my feet.

I do not think of anything but my sorry prose.  I stay focused and trust my language will grow sharper with endless revisions.  Learning to concentrate is an acquired skill for a writer.  A wandering mind is no friend in the world of words.  I was too busy to entertain the idea that a quiet killer was stalking me.  And I was aiding and abetting the would-be murderer.

The lesson is obvious.  Stand up at least once in every hour.  Move around, and when you sit, try to change position.  It is easy and painless.  This easy act may clear you brain as well as your vein.  I do not begin to know what an individual in a wheelchair does to stave off clots.  I suspect that moving legs, even with hands, will do the trick.

I am convinced that mine was a self-inflicted wound.  Live and learn.

 

28

Crisis

It was sudden and serious. Very serious. A badly swollen foot and a series of tests at a local hospital revealed a sizable blood clot in a leg. A CT scan indicated a piece of the clot had broken off and reached my lungs, perched on a blood vessel close to my heart.

This was dangerous.

By Sunday morning, we were in a major medical center in New York City, I was on blood thinners and it was made clear to us that this was touch and go. Twenty-four long hours later, what they called an “umbrella” was passed through a vein in my leg to the abdominal cavity. The umbrella was opened and provided a net to catch any future clots. Within days, the blood thinner had stopped the clot in my chest. The crisis seemed to end, and a new phase had begun.  There’s a lot to figure out for the future.

This had nothing to do with the stem cell clinical trial. It probably was caused by too many hours sitting in one position at the computer. The trial goes on and my determination to get over this goes on with it.

One doctor commented that I was pulled back from the brink.  Staring mortality in the face is frightening. I believe that things will work out. It leaves me with a lot to think about in my life.

36

The Amazing Disintegrating Man

One could  argue  the long dance with MS prepares a person for ambiguity and frustration.  True enough.   What I am dealing with now, however, would get anybody lost on the long road to renewed health.  That destination is hard enough to find under any circumstances.  My new role as The Amazing Disintegrating Man has brought new mystery to medicine.  Just ask my neurologist.

I was about to begin my second round if IVIG infusions.  That would stand for, Intravenous immunoglobulin. IVIG is made of antibodies that have been filtered out of donated human blood pooled from many donors.  You with me?  Right.  These five hour infusions save patients from physical problems by boring them to death.

Suddenly, I noticed my skin was becoming red, raw and ulcerated.  The back of my neck had caught fire.  I was covered with dead skin, leaving piles of it everywhere I went.   And…and…the sores were moving around my body.  Quickly, I decided something is not right, here.  I went to a dermatologist in the next town, suggesting this was a reaction to IVIG.  “Definitely not,” she said quickly, offering no other theories.

I went home and called my neurologist.  “It’s probably the IVIG,” he said.  “I’ve seen it before.”  Okay.  I went to see a different dermatologist, someone I had worked with in the past. She biopsied my thigh.  “You are having an allergic reaction to a drug.

We still were getting nowhere  fast.  I was awakening morning s with bloody legs from scratching in my sleep.  There were piles of hair in the bed every morning because my scalp was so dry, in addition to the scratching.  My neurologist put me on methyl prednisone.  It did not touch the problem.  Then we went to regular, old oral prednisone, a drug I had barely survived in the past and had sworn never to use again.  It did nothing.

By now my hands were red and swollen, my palms peeling away.  My fingertips were split.  It hurt just to look at them.  I went to a major New York medical center.  My five minutes with the big dermatologist was similar to the drive in window at MacDonald’s.  I picked up my burger and fries and was assured this would just go away.  “Be patient.”  Patient?  We were closing in on two months.  That’s eight weeks,  about fifty-six days.  But who’s counting?

People are walking around me now.  My family is denying they know me.  I hurt and itch and have no faith my body will get back to as close to normal as it ever is.  I want to keep my sense of humor.  It must be with my wallet.  I can’t find it.  I will say this.  I have made a decision I am announcing on this blog.  I am joining the circus.  The Amazing Disintegrating Man will be coming to a city near you soon.

 

13

Images of a Better Life

Sometimes a long awaited treatment can feel like the endgame.  It seems as if it is  the final act of the play when, in fact, the curtain just went up.  There can be a letdown when we repair home from the doctor’s office.  I spent virtually one year thinking and fantasizing, then waiting and preparing for the stem cell infusion that would lead me down the road to a better life.

There are no new roads visible in the neighborhood., just the same old streets we travel to routine destinations in our lives.   I do not expect the view from my window to change.  It occurs to me I never did project the visual image of a new life from the projector in my head.  Word pictures are dangerous.  Non verbal images are potent, too.

Expectations need not be verbalized or even made visually clear.  I have refused to lay out my hopes for stem cell induced change.  Expectations are a dangerous game, I have said.  The fuzzy photos of the mind can set up a person for disappointment as effectively as vivid descriptions of our dreams.

We who are giving over our bodies over to a clinical trial are playing a mind game, too.

 

35

Beginnings

My first stem cell infusion took place in New York City on a cold March day very recently. The event was a long time coming.  I was more enthusiastic than apprehensive.  I knew a long, thin  needle would be inserted into my spinal column and the cells released.  I was ready.

The stem cells had been taken from bone marrow pulled from my sternum many months ago.  The cells were cultivated, fed and nourished for half a year.  The time had come to introduce them into their new home.   The procedure would be groundbreaking, the first of its kind.  I looked like hell, an allergic reaction to all the drugs I had been taking tearing at my skin.  I was uncomfortable but ready to celebrate.

53

The Fight Resumes

At last, clarification.  I just talked to my neurologist.  The stem cell trial was finally approved by the IRB.    That is the Institutional Review Board or the Investigational  Review Board.  No difference.  These boards exist to monitor safety and guard against potentially expensive liability issues.  IRBs can be tough audiences.  The last hurdle has been jumped.

It will take days to set up the stem cell infusion.  After forty years, I guess a few more days should not matter.  They do, of course, but that is my problem.  Years of work and millions of dollars are at stake.  I am not so self-absorbed that I believe I am the issue.  This trial is larger than any single individual.  I am but a laboratory rat and proud of it.  Let the battle continue.

37

Evoked Potentials

I had a pile of prescriptions for drugs and tests to be filled as I wait for the damned trial to begin.  Part of me thinks this has been a way to make sure I am busy and keep me out of the bars until clearances come through and we can stop talking and start doing.  The non-pace has been driving me crazy.

Dutifully, I worked my way through the list.  There was a test called, evoked potentials, which was tough to schedule.  I had to go through the epilepsy department at Columbia Presbyterian Hospital up by the George Washington Bridge.  I knew nothing about the procedure, only that it would provide a baseline for measuring change, should there be any a year or so after the stem cell infusions began.

I was ushered into a room full of high tech gadgetry, and a pleasant technician began fastening electrodes to various spots on my head.  He told me we would start with my eyes, then work with hearing before – pause – finishing with tests  I “would not like too much.”  He added that he would be asking me to lie on an examination table and pull the legs of my jeans up over my knees.

Okay.

After working on eyes and ears and listening to vague references to the final tests, it occurred to me he was sending me a less than subtle message that pain and suffering would not be far behind the tests north of the neck.  How bad could it be? I wondered.

Bad.

There I was, on my back, pant legs rolled up and electrodes and stray wires everywhere.  If I looked like the Bionic Man, I had not signed up for the role.  When the guy was ready and assured me he would begin with a low current going into one leg at a time, it occurred to me this would be a good time to disembark and go to lunch.

True to his word, the man in scrubs did start with my left leg and move to my right.  I wondered if he had a black hood on. The current was low and only mildly uncomfortable.  All went well, until he told me he was going to increase the current until he saw a certain twitching, which did not seem to be happening.

“Are you with me?” He asked.  “Can you take more?”  I thought I smelled something burning.  By now my legs ere slightly above the table and shaking violently.  Are they freaking twitching? I asked politely.  “Yes.  You are doing great,” he responded, demonstrating no interest in cutting the power.

“Okay, we’re done,” he finally announced as my legs went limp.  “Now we will do your wrists.  This will not be as bad as your legs.”  Right.  My arms felt like they were going to pop out of their sockets.  When we were done, Dr.  Mengele walked me down the hall to the elevators.  The technician’s boss, who had screened the data on a monitor in his office, stepped into the corridor, smiled a celled from a distance, “Is that the guy you tried to execute?”

Very funny.

Everybody there that day was very nice, actually, and only collecting data that may be critical in evaluating change.  I have thought of myself as a pioneer in this process, going where no one has traveled before.  It was time to toughen up.  Playing trail blazer is no game for the timid.

 

28

Process and Product

Some years back, I worked with the former Dean of the Yale Medical School on a foundation project.  We good naturedly drove each other crazy.  We agreed on strategy and the content in a report.  Let’s go with it, I urged.  “Not yet, he said, I want so-and-so to approve it and ten vet it in the group.  You are a creature of process, I said a bit derisively.  I am a journalist.  We are creatures of product and want to get it out there.

I found the man a bit condescending and asked if he knew how I could be sure he was a doctor.  He looked at me blankly.  You are arrogant, I said, and I can’t read your writing.  He loved it and has repeated the exchange over the years.  Clever, perhaps, but there is a point. One reason medical research moves with the speed of molasses on a cold day is that oversight is carried to ridiculous ends.

The sick are impatient and want trials and treatment instantly.  That is not going to happen.  On the other hand, the FDA never makes a decision in a week, month or year if they can extend it out to double that.  They are risk averse to the tenth power, unable, it seems, to distinguish between reasonable risk and recklessness.  Suffering patients chomp at the bit , and  bureaucrats go to lunch.

Oversight is important.  Few question that.  But many would like to see a streamlined system where FDA and IRBs (investigational review boards, which examine safety and liability) swallow hard and put us out of our misery.  There is no such thing as being one hundred percent, guaranteed safe.   Get real, and think of the waiting patient.  We are going to die of old age before regulators make a decision.

20