HEY!! Yes Its Been almost a Year since you heard from Me.

This blog post is going to go back to its original intent in regards to my health.  Since 2014 when I started my health journey things have changed a bit with me.  Due to arthritic issues with my hip for instance, I find I am not able to run or walk up and down 175 stairs x 10.  That has been difficult for me as not only did I feel so good (and strong) after, it was a huge piece of social interaction for me. I do miss it but realize that this is just not the point in my life where it needs to be important.
We have also had a wedding (April 2017) and a new grandson (May 2018).  Along with my other 4 grandchildren I try to spend as much time as I can with them.  I am still able to play and keep up with them for the most part so I am happy for that.  I was very fortunate to spend almost 4 months up at our cottage where I kept myself busy with some jobs that needed doing.  My motto has always been, get up, have coffee/breakfast and catch up with social media/news and then spend a good amount of time on my chore of the day.  After a late lunch I take the time to chill down on the dock if possible and that is my reward and justification.
So life is going along pretty smoothly.  I'm keeping my weight down - up and down 5 - 7 lbs or so but for the most part still manageable.
Then something weird happened.
I noticed that I was having some issues swallowing.  First it was food.  I assumed it was due to the fact that maybe I wasn't chewing properly or eating too fast.  Food was sticking deep down in my throat.  Not where I could easily dislodge it either.
Then after a period of time I noticed that water or coffee was not going down correctly.  It would sit.  Right there.  At the point right between my breasts.
Then another thing started happening.  Not only was it not going down, it was starting to come back up.  Spontaneously.  A simple cough and undigested food or liquids would be forcibly ejected from my throat.
What the hell was going on????
My first thought was a hiatal hernia.  Thinking that my maternal grandmother had told me on the occasion of my oldest daughter's christening that she suffered from one.  I thought ok that must be it.  At this time we were also between GP's so I made a decision to visit a local walk in clinic.
How lucky that I chose that day.  The Dr. who saw me took my symptoms seriously and prescribed a proton block inhibitor for the acid reflux I seemed to also be suffering a severe case of and booked a barium swallow test to see what was happening.
After suffering through a test to swallow what my body was not wanting to swallow I went back to the Dr. to follow up.
At this point I had started to lose weight at an alarming rate - 5lbs/week. And I was not only starving, I was becoming malnourished and dehydrated.  It was a 5 hr chore to ingest an 8 oz smoothie every day.
He advised me to run to the ER and get myself hydrated (via IV).  After an 8 hr stint in the ER, even though I had a pic line in, an IV was never actually started and the dr on call sent me home with the advise to sip water.  To say I was upset was an understatement.  I felt very unwell from lack of nourishment or liquids.  However, what it did do was get me onto a fast track to have an emergency endoscopy at a private clinic affiliated with the hospital.
At the same time that was booked, an opening finally came through for me to see a GI specialist in the area with a projected appointment for MAY!  This was already the beginning of February and it had been over 2 weeks since I went to the clinic the first time.  I cried a bit on the phone and the secretary promised to get me an earlier appt on a cancellation basis.  She advised me to still go to the endoscopy appointment and then we would have more information.
This was the first of many endoscopies for me.
The Dr. at the private clinic took me into a private booth after the procedure. I was just a bit terrified with what he was going to say.  First off - its NOT cancer. He fully expected that he was going to find cancer and was happy to tell me that it was not.  However, it is Dysphagia (https://www.mayoclinic.org/diseases-conditions/dysphagia/symptoms-causes/syc-20372028) complicated by Achalasia (https://www.healthline.com/health/achalasia).  So in a nut shell - my esophagus no longer works the way it is supposed to and at the base of the esophagus is a sphincter muscle that allows food to pass into the stomach while also preventing acid from backing up into the throat, that is also not working properly.  The lack of "motility" of the throat and the inability to allow food to pass makes for a quite rare condition.  It may be genetic (Nan's may have actually been that). It may be an autoimmune response, it may be nerve damage, it may be all 3.  Nobody knows for sure. So once I was finally able to get in and see the GI Dr (on a cancellation) just a week later, he immediately booked me into the hospital to begin a treatment.  At this point I had lost 15 lbs in just over 3 weeks.
This treatment uses Botox to freeze the muscle (sphincter). After dilating the opening, Botox is injected to freeze it in an open position.  This usually last 4 to 6 months.  Lucky me, I was having symptoms again after 2 months.  So over the next 16 months I had 6 or 7 more Botox injections and 2 more dilations.  All of these are done under sedation at the hospital via an endoscope.  I lose at least 1 full and sometimes up to 3 days depending on how I react to the particular sedation dosage they give me at that time. I was referred to a Thoracic surgeon to do something more permanently.  Basically a myotemy (slicing open the muscle) would have to be performed to allow me to eat more or less normally.
In the meantime over that 16 months I went to my daughter's wedding in Mexico - I was at the tail end of a Botox treatment so was having issues on and off through our trip with a horrible incident occuring on the plane on our return. I started to not want to eat out or with other people.  I had to eat very slowly and sometimes it would take 2 hours to eat a somewhat normal meal.  In November I had 1 bite of a delicious steak my husband prepared for me at the cottage and then spent the next 5 hours unable to swallow that solitary piece and having effectively blocked my throat I was also unable to swallow my own spit.  Every 15 mins or so I would have to rush to the washroom and well you can guess.  I woke up 2 times in the middle of the night on other occasions choking on my own spit.  I was afraid to sleep alone and if I did I slept in an almost upright position which played havoc with my back and hip.  The thoracic surgeon office would not give me an appointment until I had a Motility study done.  So off to yet another hospital to have a tube threaded down my nose to my stomach and then while carefully trying to swallow a liquid the tube would be pulled back up and readings would be digitally analysed.  Finally I did get an appointment with the thoracic surgeon.  Drew went along with me and we decided that surgery was the real only option for me at this point.  But the wheels of our Health Care - while awesome and fully covered - move very slowly.   The thoracic surgeon (Dr. M) wanted to perform his own exploratory endoscope!  So in the meantime I was subjected again to another Botox treatment.  In June I had my exploratory by Dr. M and my followup was finally booked for September. I decided I would suffer it out and not subject myself to another botox unless I had no choice.  I saw Dr. M. at the appointed time Sept 22.  We talked about the findings of his exploratory ( along with a weird infection for some reason that is not being treated) and he asked me to make an appt with the GI Dr. to discuss my options once again and that he felt that an operation would be the most obvious thing for me.  It seems that every botox and dilation I have on my esophagus is causing scarring.  Scarring means fibrous tissue which also means more difficulty with the surgery itself.  Great.  So NO more botox for sure til I can get in for surgery.  I made an appt with the GI Dr (Dr. C) and of course that was booked for Oct 9.  Once I saw him he was surprised to see that he had not in fact heard from Dr. M and had no idea what the plan was.  We discussed again the surgery and the botox and the outcome was that he would do his best to get in contact with Dr M, see what his thoughts were and push for the operation.  One week later, Oct 16, I heard back from Dr. C's office and she said that she had finally spoken with Dr. M's secretary and that my case was hitting urgent status and that they were on the fence about another botox as I was having severe issues again.  Surprisingly this time Dr. M's office said - tell her to come in tomorrow (Thurs Oct 18) at noon and we have an opening next week.
This time things moved quick.  Dr. M saw me, went over the operation again, I had spent some time researching so asked a few questions, and then just like that the surgery was booked.  For Oct 24 - day after tomorrow.  Surgery will be what is called a Heller Myotemy followed by a partial (180 degree) fundoplication where my stomach is cut and reattached farther up the esophagus wrapping around the just made incision/opening.  This second procedure is to help prevent a lifetime of GERD or acid reflux which carries its own set of long time problems.  I will also have a lifetime of screening for esophageal cancer.  It is the second procedure that entails longer recuperation and diet to follow after surgery.
I had my preoperative clinic today.  I saw a pharmacist, a phlebotomist (blood drawn), had an EKG, blood pressure checked, met with the anesthesiologist who went over her part of the operation and what it would entail (3 hours - General anesthetic) and then met with a nurse who went over what to expect after the operation and to provide me with any answers to questions I still had as well as take my blood pressure ( a bit elevated no kidding).  She reiterated that it was a 3 hr operation, I will most likely be there overnight, I have to remove my nails (confirmed by anesthesiologist) and no makeup or jewelry.
I am now officially nervous.
One of the questions on the forms I had to fill out this morning included: Do you have - a living will, a power of attorney over health, over finances, organ donation.  Makes you stop and think.  I know with any operation there is always a risk.  Small but there nonetheless.  I am not a young woman.  I have had people with losses of loved ones in our age group.  I think I need to address my wishes.  I feel morbid thinking about it.  I have so much living left to do.  I have 4 beautiful children and 5 amazing grandchildren.  I have a man I love deeply. My parents are still living.  I have much to live for.  Positive thinking is 90% of success in anything including health. But it still made me stop and think.
And so I spoke with a good friend who is a lawyer and she suggested I make a will making my wishes known and that even in this day a handwritten will is legal.  With my signature.
I don't have much in the way of earthly goods that are valuable but what I do have I don't want anyone quibbling over.
I have written things down.
I am prepared.
I removed my nails...20+ years since I have started wearing artificial nails.
I will place my rings etc. in a safe place.
I will tell everyone that I love them.  That they make my life happy and worthwhile and I wouldn't trade one minute.
I kissed my grandson (4.5 months) today and told him how much Gammy loves him. 
I hope I will be following up this blog post with one telling you how sore I am.  Complaining about the liquid diet I will have to follow for 1 week.  Followed by 4 - 6 weeks of more liquids and mooshy food.
Stay tuned.
Thanks for listening.
Debbie