Saturday, November 15, 2014

1 year 10 months after my POEM surgery

Almost 2 years after my surgery and all is well.  Here is what has happened since I last posted in March 2013.

In June 2013 (6 months after surgery) I went to see Dr. Swanstrom for the scheduled 24 hour ph test, manometry and an endoscopy.  Perhaps a month before I had been having that lump in your throat feeling you get when a little food is stuck in your gullet.  That was the only symptom I had to report.  He said everything looked fine but decided to give my esophagus a little stretch while he was in there.  My swallowing has been pretty much perfect from that day forward :).

The manometry showed much better pressures which was no surprise.

The 24 hour ph test showed some "abnormal" readings when I was asleep so he has me take a 20 mg Pepcid each night before bed.  I guess this means I have some reflux when I lay down.   I have not asked but I assume the reason I was not aware of it is because the reflux is a small amount.   There are no noticeable side effects from the Pepcid.

I went for another check up last week (endoscopy only) and Dr. Swanstrom said everything looked good.  The next scheduled appointment is for the 4 year check up which would be January 2017.

Swallowing is fantastic and normal.  My weight is steady between 155-160 lbs (135 lbs was my lowest before surgery).  I do have the occasional very small burps and  raspy throat in the morning or feel the need to clear my throat after eating but usually this is like the day after I eat a large meal before bedtime or eat a very fatty meal which I suspect would give quite a few people a little reflux as well.   I am careful to chew my food thoroughly especially thick bread type foods.  

I would say I have had "Heartburn" that was noticeable to me 5 times or so since my surgery.  Each time it has been very brief (a couple of minutes) and I have taken care of it with a little water or a couple bites of something bland.  

Please feel free to contact me with any questions you may have about any of this.  The POEM surgery has definitely changed my life for the better and I would do everything exactly the same if I were to do this all over again.

Now for the fun part.

To make a very long story short, we went back to France with our kids this summer for a month and stayed with Joelle and Claude and their friends all over the country.  A week in Normandy, a week in the Alps, a week with Joelle and Claude in Alsace and a week in Paris.  Generous beautiful people and such a formative experience for Phoebe and Ty.  Again I thank Dr. Swanstrom for the opportunity.
Anne Marie took us to a Medieval festival in Normandy near Bayeux.

Hiking in the mountains above Munster in Alsace.  Joelle and Claude are in the back.

Ty and his best French friend Eddie below Mt. Blanc in Chamonix.

Headed back to our friends Lauren and Joceline's house
in Cusy France  after a morning mushroom hunt.

The cheese in France is amazing.

Monday, March 18, 2013

Surgery plus 2 months

I couldn't be more satisfied with the results of my POEM surgery!!  Two months after surgery.  Zero symptoms of heartburn which is the most common side effect of the surgery.  I did have some gas in my stomach a few weeks ago that led to some burping for a week or so but that went away.  The only time I have had any sensation is after I eat lentils.  I think they produce a lot of gas that feels funny in my chest.  I had that sensation twice and both times were after eating lentils so no more lentils.

My swallowing is 99.9% perfect.  Large bread bites are still slow to pass into my stomach but that's easy enough to fix by chewing those bites a little longer.  That's it!!!  Perfecto, FIXED.

I would add this piece of advise if you have this surgery.  DO NOT swallow any water to try and get food that is being stubborn to go into your stomach after surgery.  Dr. Swanstrom says that in his post operation instructions.  It was not a large problem for me but a couple of times in the first 3 weeks or so I had some bites that were being a little slow so I drank a little water to help them go down.  Nothing major happened but I did feel a little tender for a day or so.  I would think it could be possible to do a little damage to the surgery site if you really forced a large piece of steak through or something like that.

I have gained about 9 lbs. in 2 months.  Tipping the scales at 147 lbs. Not a bad weight for my frame.  It would be interesting to see how much weight Achalasia patients gain back on average after surgery.  I think it would be very easy to get fat.  I prepared myself for the fact that I would be able to eat much more than I had been for the last couple of years and took this opportunity to eat much much more fruits and veges.  Mt. biking a lot this spring (we are off to Utah for 2 weeks, leaving Sat.).  It sounds crazy but there have been so many positives that have come from having Achalasia.

Totally Fantastic trip to France
Becoming friends with Joelle and Claude
Artisan Cheese making (worthy of it's own blog, it definitely started in France)
Healthier diet
Which led to more Mt. biking


1) Emmental (swiss), 1)Tomme (alpine style) 1) Cheddar 1) Blue 2) Gouda's
That's approximately 17 lbs. of cheese aging.  It's so fun.
I will post in a month or two unless something changes.  I have all my follow up tests at the end of August.  I am still waiting for copies of my post operation swallowing X-rays.

Sunday, February 10, 2013

Back to Work - Surgery + 3 weeks

Back to work...and an 18 mile Mt. Bike ride.  All is well physically at this point and eating continues to be a joy.  I have been surprised by how much better I feel in general, more energy and I had not realized how I constantly had that low blood sugar feeling before my surgery.  Mostly fruits and vegetables is what I eat and it is wonderful although I do miss the foie gras, cheese and chocolate mousse diet I was following in France.  I have found that I need to chew my bites a few more times than normal to make for easy swallowing, especially bread and meat.  There have been about 5 times in the last 3 weeks when food has hesitated at the bottom of my esophagus before going into my stomach.  I have to remember that I have a permanent swallowing disorder and that the surgery simply helped with the symptoms and did not cure me.  Swallowing is easy and I feel normal again.  No signs of heartburn only occasional burping which is new to me,  I assume since my LES was clamped shut before no air could possibly escape.  Not enough burping to be inappropriate or awkward only very small amounts many times throughout the day, definitely more than normal but not something that affects my day in any way.

I have gained 7 lbs. since my surgery 3 weeks ago.  Now topping the scales at a whopping 145 lbs.

Riquewihr, France.  We saw a few stuffed foxes here and there around Alsace.

A teacher Kelly worked with (Kelly and I went to school with her son and she lives just around the corner from us) at Griffin Creek Elementary who retired a number of years ago was just diagnosed with Achalasia (affects 1 in 100,000 people) and had an appointment with a local surgeon when we found out and turned her on to Dr. Swanstrom.  She has an appointment to see him later in February and I am so happy for her to have the opportunity / privilege  to be under his care.  Yesterday I discovered a video conference on Youtube in which my Dream Team Dr.'s Swanstrom and Perretta were leading a discussion on the POEM surgery that was being attended by surgeons from John's Hopkins University, Mt. Sinai Hospital, Dalhousie medical school, Cleveland clinic and a few others.  These Dr.'s are the ones teaching the other Dr.'s around the world.  I still can't believe how fortunate I was to have such a fantastic opportunity.

Sunrise in Trincomoli Channel B.C. Canada, July 2012
We rode our bikes last weekend and I felt much better than on my first ride.  Normal but not conditioned.

Thursday, January 31, 2013

First bike ride - surgery + 14 days

I did not have to walk last night but a short rest
was in order at one point.
I went on my first bike ride since surgery last night.  A night time mountain biking ride with a group from the local bike shop.  UGH I think Dr. Swanstrom accidentally removed one of my lungs!!  I thought with all the skiing before we went to France that I would be in better shape for the ride but no way.  I have not been on my bike since October and it felt like it.  No legs, No lungs.

I did some serious huffing and puffing with no unusual pains or sensations anywhere.  My chest felt completely normal during all the heavy breathing and nothing is sore in that area this morning.  I suspect the anesthesia sets you back a little as well as all the sitting around eating french cheese and foie gras.

Tonight is my last Nexium which I have been taking as a precaution to control acid reflux after the surgery.  Historically there has been about a 30% occurrence  of acid reflux in POEM patients but I think Dr. Swanstrom may have tweaked the technique a little to
try and reduce that likelihood. I will ask him at the next visit.  He told Kelly after the surgery he thought acid reflux would be unlikely but did not elaborate. 

We are still waiting for our illegal unpasteurized cheese to arrive in the mail.  Interestingly Louis Pasteur was a professor at Strasbourg University when he invented pasteurization.

Wednesday, January 30, 2013

Surgery + 13 days

Almost two weeks after my POEM surgery I can report that I have gained 2 pounds from my pre operative weight of 138 lbs..  Swallowing feels as if there were never any problem at all and my energy level is much more even since I can take in more calories and eat a more balanced diet of fruits and vegetables along with my proteins.  Some large bites of bread are still a little slow to pass into my stomach but the sensation is not the same as it was before the surgery.  I am reluctant to flush the bites with water at this point as it seems like it would only put more pressure on the surgery site so I simply wait a minute or two and it usually passes.  I can say that the times I have had the slow passages of food have been when I have been less diligent about taking smaller bites and chewing more.  I do not need to consider the bite size or chewing for most foods any more only thick substances such as bread.  The eating is so fantastic, to lay into a full plate of salad is so satisfying since salad was a forbidden food for me not long ago.   I do not have a single sensation which would lead me to remember I had surgery just two weeks ago.  I don't think that would be the case had I had the laparoscopic myotomy.
Cheese in France is quite a bit different that in the USA.  Yum.  Next trip we will get a book that explains all the different types.  The variety is astounding.   In Strasbourg not far from the Cathedral is La Cloche a Fromage which has a restaurant serving tons of cheese as well as a Fromagerie (cheese store) across the street.  

The rampart in Riquewihr.  One of the most beautiful villages.

Road to Andlau 20 min. south of Strasbourg.  The wine route must be stunning in the summer.  There definitely was a certain beauty to it in January.  This picture is actually lower in the valley towards the Rhine river where more vegetables are grown.

I purchased a few more Tylenol for the trip home which I did not need.

Friday, January 25, 2013

IRCAD tour. Surgery + 8 days

We are home in Oregon now.  It has been 8 days since my POEM surgery and all signs are still pointing to a very positive outcome.  I am happy to be eating lots of fruits and vegetables which I have not been able to enjoy for quite some time as they did not offer me the calories I needed and I also found them very difficult  to swallow.  When I did manage to get down an apple or banana, it would require so much water that I would be full after only a small amount of fruit, therefore limiting my caloric intake (starving) which made maintaining  my energy and weight that much more difficult.  For the last 8 months I have been eating very high calorie foods, it works, I fluctuated between 137 and 140 lbs for the last 8 months.  Upon our return from France I weighed 138 lbs. but that will soon change.  It takes me a couple of weeks to see weight gain or loss after a change in diet and/or exercise.  I am eating pretty much whatever I want with the exception of hard sharp foods like tortilla chips.  Small bites, lots of chewing.  Looking forward to enjoying a healthy diet of fruits and vegetables.   I have had the sensation of food not passing directly through to my stomach 2 maybe 3 times since surgery always while eating bread products.  I simply waited several seconds and it would eventually pass.  Not anything which concerned me in the slightest.  No Tylenol since day 4 only the Nexium to help eliminate any acid reflux for the first couple of weeks and then I will be medication free. 

I have some hesitations about eating certain foods right now but I have to say my entire esophagus, stomach etc. feels as if nothing ever happened and all of my swallowing functions are exactly as they were 5 years ago.  Amazingly successful.  I am not sure if the typical POEM patient experiences such a flawless outcome but I am sold.  

I believe my exceptional outcome is directly related to Dr. Swanstrom's expertise.  Perhaps my outcome is not exceptional simply typical for the POEM surgery.  I feel exceptional :)  

Dr. Perretta gave Kelly, Joelle and myself a tour of IRCAD last Tuesday.   What an interesting facility. It was started in 1994 and has grown into one of the world's leading centers for minimally invasive surgical research, development and training.  They offer onsite training as well as Web Based Courses.  

IRCAD is directly next to but not connected to the New Civic Hospital in Strasbourg.  So, my surgery was not technically performed at ircad since it is exclusevely a research and training facility.  I was operated on at the hospital next door which has HD links to ircad for recording surgeries and I suspect may be used for telesurgery but perhaps not.

In the above picture this lady is doing artwork on an esophagus which must be part of some type of upcoming course or Websurg.

This is a training room where there are 6 - 8 surgical stations.  I think she said there are teams of two surgeons at each station during a training course and they are permanently accompanied by a senior surgeon for the duration of the course which is not typical I was led to believe.  It is more typical for a senior surgeon to float around the room and help as needed.

The Da Vinci surgical robot is part of the modern surgery room.  The above surgeon from Denmark is actually performing surgery on a live pig in the background during a training session.  The screen below shows him sewing up something inside the pig.  I got to walk over to the patient and saw a cute pink belly with a few laparoscopes entering it's abdomen from different angles (no pics allowed of the pigs) all connected to the robot being controlled by the joysticks in the surgeons hands.

The robot is superior to a human since it's hands (tools, cameras, knives etc.) are only 5mm in diameter and have a far greater range of motion than ours do.  Therefore, the surgeon can reach into tiny areas without disturbing the nearby tissue.  It seems like a pretty intuitive device. $2 million is the number I remember.

So, cool web technology, amazing robotics we got to see in person, but the pigs!!  Dr. Perretta says prior to opening a set of doors, "I apologize it might be a little smelly in here because of the pigs".  I was thinking flesh type of smell not unlike a butcher shop or something. . . then the aroma of a barn enters my head.  We raise all the pigs onsite she informs us.  Piggy condominiums and an ethics board which must clear each and every decision prior to any changes.  They are the best cared for pigs and when they get too large they are sent to an upscale farm in the country to live out their life.

There are a number of pieces of art throughout the ircad building, a reflection of Prof. Marescaux's appreciation of the arts.  Time zones of the world are in the background as well as a door to a Mosque for Muslims which may be visiting and need to pray.  Thoughtful.

Nouvel Hospital Civil photo taken from outside ircad.  I think the hospital opened around 2006.  It is very modern.  Both were about a 4 minute walk from our Hotel.  The distances looked farther on google maps but the hospital, hotel, petit france and all of the old part of Strasbourg were with in a 10 minute (very pleasant) walk of each other.

I was asked to do a short interview on camera for ircad to edit into a statement of sorts on my experiences with the POEM procedure.  I always thought an interview involved an interviewer.  Not in France.  It was fun, I just told my story and how I felt.  Awkward.

Saying Goodbye to Dr. Sylvanna Perretta.
What a great experience and outcome.  Thank you again.

I will be posting occasionally or as needed to log progress, Dr.s visits etc.
Please feel free to contact me if you have any questions at all or if you want to chat a little about my experience or what to expect.  Leaving a comment with your contact info. is the easiest way.

Tuesday, January 22, 2013

Ircad and Choucroute. Surgery + 5 days

Ircad was intensely interesting!! Will do proper post once we get home.

Love Alsace, France
Love eating
Love Joelle and Claude
Could not have asked for a better final day. Thank you Joelle, Sylvanna, Kelly and the nice couple we sat next to at de tirbouchon restaurant.

Bought illegal cheese. Cheese monger said mail it home you have a good chance of getting it. Post office lady said put it in an envelope not a box you will have a better chance of getting it. We will see.

Small bites, lots of chewing equals zero problems!