1st POST - We are going to France in 2 Days!!

Sunrise over Utah's La Sal mountain range

This blog is about my experience with Achalasia and the adventures of my POEM surgery.  

I was having heartburn type symptoms about 4,5,6 years ago, nothing strange about that, not uncommon in our indulgent society, self inflicted disease I figured so I just needed to eat properly and make a few lifestyle adjustments and it will be tolerable.

Kelly and I are going to Strasbourg, France in 2 days.

Maybe some Tums will help.  My brain says "there we go" My chest says same same!

Oh! I see they sell pills (nice!) over the counter that used to be prescription, I don't need a Dr. for GERD.

This is my story, Achalasia is pretty rare and we all go home to the Internet after the diagnosis to see if we can learn anything from someone else's experiences.  This is my experience.  I have never really learned to write properly so expect me to totally misuse things like comas, parentheses, quotations, capitalization, paragraphs, sentences, etc. Google is in charge of spelling.  I plan on a few pictures (mostly irrelevant some are borderline inapropriate and inserted without much thought because pictures are interesting) and minimal editing (Sorry Kelly, she is my Fantastic teacher wife of 20 years and edits everything I ever write).  I will not spend the time to write Clinical type descriptions but will make an effort to provide a link to proper web pages when needed, usually Wiki which I heard is edited by people like myself so good luck with that.   I need to make this fun for me to write so that I will continue to post after this first entry.  The one aspect that is missing understandably from other blogs are the post operation updates.  I hope to continue to make regular posts as the days, weeks, months, years go by.

"Actually, I---this may sound a little West Texan to you, but I like it.  When I'm talking about---when I'm talking about myself, and when he's talking about myself, all of us are talking about me." George W. Bush May 31, 2000  

Kelly, Phoebe, Ty and Myself (Inside Passage B.C)

So, a couple years ago it started to get difficult to swallow my food.  A side effect of GERD since the acid irritates the esophagus and it gets a little restricted.  No problem, fix the reflux and it will heal itself.  repeat....repeat.  A year and a half ago it started getting worse, more gagging more white foam (saliva collecting in my esophagus I guess) much regurgitation, less food being consumed so I started losing weight.  I am 5' 9 1/2" thank you very much and have fluctuated between 155 - 165 lbs. my entire adult life.  I got down to around 150 lbs. a couple of years ago but was not concerned since I had it all figured out and my diagnosis had been well confirmed on many websites.

A year ago I got serious about the acid reflux.  Dropping Acid was one approach which appealed to me and I still believe to be a valid path to a cure for reflux.   It definitely helped with my heartburn type symptoms so I followed this for months.  The problem is that much of what I was eliminating from my diet were the foods that were high in calories (fat) and I could not consume and keep down enough of the veges., chicken etc. to keep the weight on so I was down to 135 lbs. last spring.  Still had frequent heartburn but not nearly as much as before.  I would highly recommend Dropping Acid.  It makes a lot of sense and after my POEM I will be implementing many of the ideas I discovered when I was Dropping Acid last year.

I got this crazy mystery fever (no cough, no aches, nothing) last May 104 - 105 degrees for 7 days and finally went to the Dr. after shivering and sweating in bed for a week (first Dr's visit in 15 years).  HE did tell me what I suspected, you have some virus and it should go away (it did 3 days later).  While I was there I thought it would be a good time to schedule a visit to the Gastro. Dr..  I told the Family Dr. that I had Heartburn so he kindly  explained to me how my Sphincter worked.  When I informed him about my swallowing difficulties he informed me that swallowing was important so I should see a Gastroenterologist.

Johnny Walker M.D. Please...
On my first visit to the Gastro. group I saw a Physicians Assistant who's name I am not willing to look up right now, Jeanne?.  She was Great.  Very thorough, caring,  proper posters on the wall, glass jar filled with cotton balls with a stainless steel lid, didn't seem too concerned.  She said I had a choice of  two procedures to help confirm what was going on (even though I already knew it was acid reflux, gimme a break already).  Sorry I can not remember the other less accurate procedure she offered but I opted for the Upper Endoscopy which is the camera down the throat to take a real look.

Johnny Walker M.D. a local legend did my endoscopy in early June 2012.  I woke up, he told me I almost drowned on my own spit and that I had Achalasia, there followed some debate about the spelling of Achalasia between  Dr. and Nurse which I thought was interesting.   Michael Jackson may have slept well but the wake ups must have been a little slow based on my experience.

Walker M.D. was very confident (and accurate) in his diagnosis as well as the fix.  Balloons are out, Botox is bogus and surgery is the choice for you.  The surgeon will be in touch.  Goodbye, I am leaving now.  Nurse... Do you have any questions? Goodbye I am leaving now.  NEXT!!

I go home (throw up on the way and Phoebe starts bawling) look up Dr. Surgeon on the web and see nothing about him being interested in stomach, esophagus, digestive surgeries of any kind.  So I look into the Heller Myotomy a little bit and soon realize that the long term success is directly connected to the number of procedures the Surgeon has performed.  I threw the local guy under the bus and went searching for an expert.

All signs were directing me to Dr. Lee Swanstrom at the Oregon Clinic in Portland.

Pondering (John Day river, Oregon)

"We need an energy bill that encourages consumption" G.W. Bush 9/23/2002

Remembering those wise words, I chose  Dr. Swanstrom, drove 5 hours to Portland had a test called Manometry to confirm the diagnosis of Achalasia.  Wonderful Angie (truly super nice) informed me I had previously broken my nose, had a deviated septum, apologized for any discomfort.  A hose goes in your nose to your stomach, then you take tiny sips of Gatorade and the hose reads the pressure that builds up every half inch or so along it's length from your mouth to your stomach.  Very Pretty graphs on a computer screen confirmed it in approximately 4 seconds.  Classic Achalasia!  Be strong puke in the bag assure Angie that you are not bothered at all by this awful procedure and be on your way.

Next I met with Dr. Swanstrom who prior to any introductions proclaimed that I looked like an Achalasia patient.  I should have zinged him and said his Mom was an Achalasia patient but I hadn't eaten for several days due to the upcoming tests so I was not at the top of my game. This guy's alright was my first thought.

First and foremost let me say Dr. Swanstrom is Internationally known for his work involving Minimally Invasive Surgery and I am pretty sure he has been studying Achalasia since Grad school.  The more I fool around on the internet the more I realize what an accomplished Dr. he is.  The most comprehensive list of his involvements  I found on this Bloomberg site.  Unfortunately it does not talk about his surgical achievements  which are equally impressive.  I do not posess  the word skills to even come close to an accurate and proper description of his qualifications.

Dr. Swanstrom is on the leading edge of the leading edge of modern surgical techniques.  We are going to France in 2 days!!

The decision was made, I would follow the path Dr. Swanstrom laid before me.  A Heller Myotomy to surgically loosen the tight sphincter which was restricting my swallowing.  Safe, effective, long lasting.

Dr. Swanstrom performs the most modern type of Heller Myotomy called POEM.  Per Oral Endoscopic Myotomy.  This means they enter through your mouth instead of your abdomen to reach your lower esophageal sphincter where the problem lies.  The traditional   Laparoscopic Heller Myotomy (LHM)  involves several small incisions in your abdomen through which several instruments are inserted to perform the surgery.  I have researched this to death and have become very comfortable with my decision to receive the POEM surgery. Shortly I believe there will no longer be the Laparoscopic procedure as more surgeons are trained in the POEM technique.   Follow the links above to educate yourself.

Spit stop (Mt. Ashland, Oregon).  Achalasia doesn't really slow you down much but I do find it hard to keep weight on when I am exercising vigorously for several days in a row.

Early July 2012.  Scheduled POEM for end of August after summer vacation and Dr. Swanstrom's trip to Europe he mentioned during my appointment in July.  He had a thing in Europe with the guy because that's what Dr.'s do they go to Europe because they are Dr's and there are things to learn there. Reasonable.  Little did I know.

Insurance Ball of Wax
Pacific Source is the insurance of choice at the Medford School District (Fabulous teacher wife 20 years...) and they denied the Pre Approval for the POEM.  They denied the first appeal.  They denied the second appeal which even included a sappy letter from yours truly which went so far as to drag my children's emotional state into the affair.  They denied the third and final level of appeal for the approval of the POEM surgery.   Hmmph. They will approve the Laparoscopic version No Problem which is a fine surgery but not what I am wishing for.  To avoid becoming outraged I tell myself I understand their hesitation to approve a procedure that does not have the final approval of the FDA.  HOWEVER, many other insurance companies have had the ability to see the advantages of the POEM surgery over the laparoscopic myotomy.  Safer, cheaper, shorter hospital stay, less chance of infection, very short recovery period, much easier on the patient.    I can not thank Brian P. enough for his efforts.

Barium Swallow

The way a Barium Swallow works is like this.  You are standing up in front of an X-ray machine.  The X-ray machine is set so that your bones, flesh, organs etc. will not show up on the final X-ray.  You drink a cup of a Barium mixture and then they take a series of X-rays of your esophagus.  The machine is set to only show the barium.  So, in the above picture the long tube is the barium backed up in my esophagus and you can see it slowly squirting into my stomach, which you can not see but it is there.  The stricture at the bottom of the long tube is my Lower Esophageal Sphincter and in this picture it should be opened up and letting the liquid through.  I believe this picture was taken about 3 minutes after I drank the barium.


Ring Ring, Hello this is Dr. Swanstrom calling.  Oh dear, Hello I am in my underwear holding my toothbrush but I will act like I am sitting at my desk working with a cup of coffee in my hand.  How are you Dr. Swanstrom?  I briefly consider the zinger about his Mother but figure that window of opportunity has closed so I let it go.  This conversation was prior to the final denial from Pacific Source.  He wanted to know how I was doing and if I wanted to continue with the appeal process or come to Portland for the laparoscopic heller myotomy.  I assured him I was in no pain (true) only the usual regurgitation, weight loss, food stuck in your throat, puke out the car door, nothing too bad, life still pretty normal (that is an honest evaluation but reading those words tells me how far my quality of life goal posts have been moved in the last few years).  I told him I wanted to play out the Insurance tack to it's end before I made a decision.  How much out of pocket for each procedure, work lost, discomfort, ultimate outcome expected, timing, lots to consider.  He very casually suggests that I could go to France and have the POEM procedure done for "Dirt Cheap".  I immediately told him He was the one I wished to do my surgery and he replied that was the plan but it would be done in France.  Open Mind. Sure you send me the bullet points and we will consider it.  Airfare, hotel, cost of surgery No way.  Kelly has been to France and loved it I told him and I'll go anywhere I can't speak the language.  He said he would have Lisa send me the overview of the opportunity.

"It's clearly a budget. it's got a lot of numbers in it" G.W. Bush 5/5/2000

Lisa  (Dr. Swanstrom's Liaison and the name I enjoy seeing most at the top of my email inbox) called me and said they were offering Kelly and I free airfare, hotel, surgery and hospital stay in Strasbourg France for FREE.  That was one of the happiest moments of my life.  Achalasia is so rare and the POEM surgery is so new that an institute known as IRCAD was offering this to certain patients of Dr. Swanstrom to be able to offer educational opportunities to surgeons training at their facility in Strasbourg.  Dr. Swanstrom would be the surgeon and educator, so expect a video camera and an audience.      2 minutes later we accepted.  Holy Moly we are going to France for free surgery and a vacation.  UNBELIEVABLE!!!  My mom actually cried when I told her.

I was actually a little concerned that the surgery would be in October and interfere with my trip to Moab, UT which had been planned since the spring.  We are going back to Moab in March, if you ride a Mt. Bike you must go.

I knew it would be a while before I heard any news and I was right.  This opportunity was new and I would be the first patient (Medical Tourist) to make the trip from Portland to Strasbourg so some logistical issues were to be expected.  Who cares what an opportunity.  Lisa called in a few weeks to let a little air out of my bubble.  Not Free, that coupon expired.  2,500 euros ($3,200) for the surgery, hospital, 4 nights lodging.  You pay airfaire, food.  Hmmph.


My homework told me that the Laparoscopic Heller Myotomy in Portland would cost approximately $7,200 out of my pocket (insurance pays 80% of $36,000) plus restricted physical activity for several weeks.  The POEM surgery in France would cost approximately $7,000 for the surgery, airfare for Kelly and I, lodging for 10 days, food and spending money.

This decision took a little longer to make but within 24 hours we decided we were going to France!!  After the initial disappointment wore off from the whole free discussion, I quickly realized what a fantastic offer I had been given.  Kelly and I leave in 2 days to fly to France for 12 days, I get to have Dr. Swanstrom perform the POEM surgery at one of the world's leading minimally invasive surgery facilities.  Cour du Corbeau  Is where we will be staying in Strasbourg, check it out.   Le Tempes des Choses  is a Bed and Breakfast we found in Andlau, France which is about 30 minutes from Strasbourg.  We will be there for 3 nights prior to staying in Strasbourg.  We have several nights in France after the surgery part of which will be spent at Cour du Corbeau but we have left a few nights open to allow for flexability.  All for the same amount of money it would cost to have the laparoscopic myotomy in Portland.  How cool is that??

I can not thank Dr. Swanstrom enough for the opportunity he has provided to me.  We are so lucky to be able to take advantage of this.  The Surgeon and the Facility are second to none and to spend 12 days in France with my wife, what a treat.  It has been a few months in the making, soon all of the emotion and effort will come to fruition.  His Liaison Lisa has been so patient and understanding throughout all of this,  I cannot praise her enough for her efforts.  Thank You!!

It's our first time on vacation without the kiddos.  We will miss them but they are in excellent hands.

Today I started taking medication to take care of any yeast infections that may be in my esophagus.  I guess it is not uncommon for Achalasia patients to have yeast infections and they can not do the surgery if they get in there and find such activity.  Four times a day I swish some Nystatin around in my mouth and refrain from any food or beverages for 30 minutes.  We are packed and ready to go.

IRCAD is the institute where I will be having my surgery.  They bring together researchers, computer scientists, surgeons and physicists  in one institution.  IRCAD is the kind of place that does things like the Lindbergh Operation where they  remove a lady's gall bladder in France with a robot controlled by a Dr. in New York or the Anubis Operation which was their first Scarless Surgery.   The latest techniques seem to revolve around virtual reality or computer generated models of the patients organs which enables the Dr. to see the computer generated organs in 3D on a computer screen including views of the interior of the organs including all of the blood vessels, nerves etc. that may be just under the surface but hidden to the naked eye.  I believe they can even perform a mock surgery using virtual reality software to see if they are satisfied with the technique they had planned before actually performing the real surgery.  IRCAD has a short list of accomplishments here and a pretty interesting example of the use of computer technology as well.

We are going to France in 2 Days!!!  I will be updating the blog from France via my iPhone so the posts could be quite brief and sporadic depending on the availability of wifi and how much time I choose to stare at a screen instead of staring at all the beauty that will be around us.  We have rented a car for the first three days and plan on exploring as much as possible in the Alsace area especially the Route des Vines even though we do not drink we will enjoy the beauty and history the area has to offer.

Moab Utah.  EKG trail