Part 1 – Just deal with it
Several years ago I found myself regularly choking on a granola bar, rice, and fries, just to cite a few, but
Time passed and the disorder intensified where I even began choking on water. What scared me was when I would choke so badly, my daughters would hold the phone in their hands, with bated breath, ready to dial 911. That happened at least three times. My heart broke to see the fear in their eyes.
The symptoms continued to escalate when I began choking in my sleep. I can’t even describe it, but it was scary as hell. I would spring straight out of bed and attempt to take breaths, which resulted in a deafening, inhaling sound but without a whisper of an exhale. It felt like I couldn’t breathe! I would look at myself in the bathroom mirror, hands clenched on the counter, horrible thoughts racing, and, well, it was absolutely terrifying. I can’t revisit that scenario without getting upset. You could hear me trying to breathe all throughout the house. I would strike the walls or doors as my plea for help when I was genuinely frightened. I didn’t desire to die alone, much less in a bathroom (just
My husband was there for one such episode, and he told me I was breathing. He saw me struggling, but he assured me I WAS BREATHING, but you could have fooled me. I recognize he is a first responder, but
DIAGNOSIS: RARE
Dr. Frank, my gastroenterologist, couldn’t produce a diagnosis without the proper testing, so ready or not, here we go. I had an upper endoscopy, a barium swallow test, and the god-awful manometry test. When they hand you a barf bag, that’s your first clue this isn’t going to be pretty. After the testing, my physician told me I had Achalasia, a rare disorder. It’s found in 1 in 100,000 people, and they believe it is associated with an auto-immune disease. My issues consisted of the muscles in my esophagus not contracting (due to a nervous system breakdown) and therefore they could not move the food down “the pike”. In addition to that, the flap at the bottom of my esophagus (sphincter, also called LES) primarily stays closed, consequently causing everything I eat AND drink to back up in the esophagus which results in an uncomfortable fullness in my throat. Add to that the choking I mentioned originally. Talk about the trifecta. Are you getting the picture?
When the food does begin to travel, it feels like chest pains in a vertical line precisely where the esophagus is located. It would get my attention mid-sentence every time. My doctor’s first course of action was to start with Botox. I thought great, I finally get some Botox but it’s on the inside where no one will see it. Bummer. Botox merely lessened the severity of the symptoms for six months.
During that process, he also dilated or stretched my esophagus. Imagine my disappointment when it was short-lived. He advised me not to have any more procedures done in the event I opted to have surgery at a later date. The procedures could result in scar tissue and not be advantageous for me during the operation.
There is no cure for Achalasia thus far. Doctors only offer procedures to hopefully diminish the severity of the rare disorder.
After those six months, all the symptoms came back with a vengeance. I had come to a place where it seemed if I drank anything cold, it would aggravate the symptoms. My daughter suggested drinking room-temperature water because she surmised cold water, in all likelihood, was constricting the esophagus. It made sense to me. So from that time forward, I have become a three-bottle, room-temperature, water-bottle toting Mama. I bring my water everywhere. Most meals require at least three full 16-ounce bottles to feel like the entirety of my meal isn’t sitting in my throat. I drink coffee in the morning and water the remainder of the time.
NOT QUITE READY FOR PRIME TIME
Desperate for answers and even with the aid of my doctor, we were unsuccessful in finding physicians in the 300-mile radius that could address my growing list of complaints as the issues multiplied. I told my doctor to find me someone in the continental United States, and, without hesitancy, he referred me to the Cleveland Clinic. The clinic has doctors that specialize in Achalasia, and they perform surgeries every week of the year. They are the premier hospital to visit in the US or, so I’ve been told.
While I spent several days in Cleveland in the fall, getting up-to-date test results, and meeting the surgeon, one particular finding startled me and nevertheless confirmed so many things. I had fasted an entire day due to upcoming tests. After testing, I ate a few bites of salad and then a little ice cream at about 4 p.m. That’s all I had that particular day. The following day, I was to fast again and report for an Upper GI at 1 p.m.
This doctor performing the test quizzed me on what I had eaten in the last 48 hours. She was not happy I had eaten anything at all and was disgruntled about not getting the instructions to the patients. What she said next, I need to have written down on a prescription pad for all the world to see and believe. She told me salad is the WORST thing I could be eating (due to Achalasia) because it is so fibrous. She mentioned meat, especially red meat, as well. After I mentioned I had shared some ice cream with my husband, too, she quickly responded that ice cream was great. Eat all I want. I’ve waited my whole life to hear words like that! There is a God.
The examination results validated what I had been feeling. My esophagus was completely full of food at 1:30 p.m., almost 24 hours after I had eaten. The little meal I had the day before was right there on the diagnostic screen for all the world to see. To finish off the trip, we consulted with a surgeon and are strongly considering having a robotic, laparoscopic Heller myotomy with Fundoplication soon. The doctor stressed the fact that this would not heal me of the disease but give me a better quality of life.
INTERMITTENT FASTING ALA ELLE
I began to notice I could rarely get two morsels of breakfast down without regurgitating. Even my attempt at eating lunch was futile. After several days of this, I decided I would wait and see when my body told me it was hungry. Much to my surprise,
Part 2 -Praying without ceasing
So I found a qualified, knowledgeable, experienced doctor capable of giving me substantial relief, I had confirmation it was worse than I thought and my condition was getting more intrusive by each passing day. Add to that, through the end of November through February, my social life (where it involved food, think holidays and parties) severely declined, even with my own children. I was uncomfortable and it made everyone else uneasy. This disease was controlling my life. So why didn’t I call and schedule the surgery already?
Because I was waiting on God. I believe in modern-day miracles and supernatural healing because I have been healed in that manner three times in my life: rheumatoid arthritis, infertility
CONFIRMATION AFTER CONFIRMATION
Cleveland Clinic is a monstrous facility in Ohio and I wondered if I would pull off scheduling all the pre-op tests required the day before surgery as well as the surgical date to coincide with my husband’s insanely busy work schedule. I called a number in my packet of information I had received in the fall and was pleased the operator easily found me in the computer system. I told her what I was attempting to do, and she literally handled it with ease.
I wasn’t even on the call with her 15 minutes. She gave me the dates, the times, gave me a brief overview of the testing to be done and asked me for my insurance. Done! I couldn’t believe it. I said a prayer of thanksgiving and went into the living room to sit and merely soak in what had just transpired.
I happened to look up at the television to see our local channel playing a commercial. Much to my surprise, it was for the Cleveland Clinic. I have never seen this commercial before or since and watch that channel often. I was elated and took it as a sign God was definitely walking alongside me and directing my steps.
I called my husband to give him the dates and, hopefully, they would work out with his schedule. Would you be surprised if I told you, it was
A MIRACLE AWAITS YOU
In a little over two weeks from the time I scheduled my surgery with the Cleveland Clinic, we were on a flight in hopes I would experience the help I needed to live a somewhat normal life. The seven tests as well as three consultations were scheduled from 8:30 until 5:00 back-to-back and went off without a hitch. To say we are impressed with this facility is a gross understatement.
I had been on a clear liquid diet per doctor’s orders in preparation for the surgery, so there was no romantic dinner or “last supper.” We returned to the hotel to settle in for the night. Surgery was set for 7 a.m. with my arrival to be at 6 a.m.
My son surprisingly flew in from Texas to be with us
They took me back and I was waiting in the hallway on a gurney right outside the operating room. One after another, people in scrubs and masks, stopped by me, introduced themselves and their role in the operation and chatted for a few. Nine people in all.
The funniest one was a man that was in a white, short-sleeved, buttoned-down shirt and white pants. I thought he was either a janitor or a milkman. He was nice and asked if I had any questions or concerns. He informed me he would be my anesthetist. Well, alrighty then. The milkman got a promotion.
I later asked about the white uniform that doctors and anesthetists wore. It turns out when the hospital was founded, they made the decision they would wear white because it represented being “pristine.” Cool story.
All that being said, I was at peace the entire time. The team was remarkable. The surgeon, who is Chief of Thoracic Surgery, came in and talked to me as well. I felt like I was in the best hands possible. And I was at peace.
A WHOLE NEW WORLD
I recall five nurses and the “milkman anesthetist” being around me when I came to in recovery. I asked how it went and they all said perfectly. Huge success! You did great!
Praise the Lord, thank you, Jesus. You are faithful. Your Word is true.
Soon after the “awakening”, I saw James and my son. Because there was no room on the floor, I ended up staying in recovery with them by my side for about five hours. When I became more alert my guys told me that during the surgery, they were shocked to discover two things: My esophagus still had food in it even though I had not consumed anything but liquids for four days; secondly, my esophagus was acting as a second stomach since food wasn’t able to go down and, therefore, it had become severely deformed.
WOW! That just assured me it was the right time, and it was necessary to undergo this procedure.
Once I was moved to the floor, I had an excellent nurse named Van. She was extremely efficient and knowledgeable and had a contagious smile.
The plan was for me to stay overnight, continue recuperation at the hotel for 2 days, a post-op check-up on Monday and fly home Tuesday.
They administered significant fluids, antibiotics, pain meds, etc. while I was in the hospital. Then it was time for the acid test, aka drinking and swallowing, to try out my new, improved esophageal system.
I was given some cold water (which remember I had not
Then I went to take a sip of the cold water and as I was swallowing, someone burst into the door and it surprised me and I choked. We had a little hiccup there for about an hour, and it was eventually resolved. We also realized that because they
Part 3 – My new normal
My recovery from the Heller Myotomy and Fundoplication procedure has, for the most part been
When I arrived home, I was eager to get some chicken noodle soup, as opposed to the bone broth I had been drinking. I would need to strain it (no chicken or noodles) but that was fine by me. Who knew chicken noodle soup could cause so much heartburn. Oh, Billy, Bertha, and Betty! It was unbelievable and Maalox, Pepto, and Prilosec were given a run for their money. After several days, I finally ditched those and started using my essential oils with a lot more success.
Later, as I researched my diet phases and read labels for more than just calories, fat, and carbs, I realized, while I am healing, I am very sensitive to seasonings and would have to make most things from scratch (for the time being) with no pepper, onions, garlic, etc. I talked to the nurse practitioner and asked if that was normal to be so sensitive.
She explained my digestive system had been completely manipulated and my thoracic area was raw in a dark, warm place. It would take time, but yes, it was normal. On a side note, she showed us my diagnostic pictures, so I could see what was done. I could see there was a blurry photo behind the one she was currently detailing. Then, as if reading my mind, she pointed to the red, blurry picture and said I would show you but it would freak you out. James and I both wanted to see it, but she wouldn’t allow it. Whenever I get discouraged, I think about what she said and have to give my body time to heal and to be grateful I CAN SWALLOW.
So thus far, everything I have eaten or drank has gone down without a hindrance and to that I say thank you, Jesus! You know, you just don’t know ’til you know. We take so much for granted.
My good list of food currently consists of baked potatoes, mashed up with butter, scrambled eggs, spinach, yogurt, canned pears, oatmeal, some cheese, ice cream, tuna salad (tuna and mayo only), and water. My naughty list….cinnamon, applesauce, cranberry juice, chicken noodle soup, Gatorade, pepper.
I’m currently trying to maintain consuming about 900 calories a day, eating five or six small meals. Last week was trying with all the episodes of heartburn. I’m certain I’ll be back to 1200 calories soon. I’m just like a baby, trying one new food and seeing what reactions may occur.
THE NEXT STEP
For the future, I will continue to stay on phase 3 foods and trying options on that list. We return to Cleveland later this year for a detailed follow-up lasting three days. I’d like to share a few thoughts if you will allow me.
1. Please don’t assume that just because a person looks fine on the outside, they are. They could be dealing with serious struggles that aren’t visible to the naked eye.
2. Appreciate what you have, again even those things you can’t see. They can be taken away from you through no fault of your own.
3. Waiting on direction from God is the best insurance policy you can have. You cannot put a price tag on peace.
AN ARMY OF SUPPORTERS
Another blessing in my journey was the friends and family who called, sent cards, brought gifts or food, texted, and more. Some were so out of the blue, for example, my husband’s co-workers sent a card signed by nearly fifteen friends the day before we left. I was so touched. The clerk at the hotel had learned of my impending operation and sent James with a card for me.
The next day she sent a gift basket full of food and other gifts. She has continued to minister to me almost on a daily basis. I told her she was Jesus’ hands and feet that week.
My son flying in to help us; our Uber driver who carted us around every day for seven days; my grandkids decorated my house with their art and balloons and their Mom stocked my cabinets full of phase-approved meals. My group of prayer warriors I had on a group text. My neighbors and my daughter who watched over our house. And those who prayed.
It was an orchestra of love and peace and prayer surrounding me and filling my heart and soul with peace and assurance and confidence. To each of you, I am eternally grateful.
But for my husband, I am most grateful. My husband was the best. I could not have asked him to be any more than he was. This was the first time one of us has had a serious medical condition and didn’t have anyone else to rely on except each other since we are now empty nesters. It all fell on him and he never complained.
Thank you for joining me on this journey. I hope you have learned some eye-opening information that you can share with others should the situation present itself. God bless you. Count your blessings. Peace to each of you.
