Failure to ThriveSeptember 6, 2022
Failure to Thrive. Those three words jumped off the page at me as I made my way through the hospital doors to be admitted. After countless followup visits, IV hydration treatments, banana bags full of nutrients, endoscopies, swallow tests, shots, and ER visits the decision was made to re-admit me to the hospital. I was scared, alone, and all I knew is that whatever day I would discharge, I would be leaving with a feeding tube down my nose.
For the past seven weeks, my body was on a descent to a level of malnutrition that was no longer safe to just monitor. Intervention was now needed.
The first night in the hospital, there literally was no bed for me. I was placed in a surgery recovery area. No bathroom, no privacy, and this weird illuminated ceiling tile of a cherry blossom tree to stare at as I lay there in anticipation of a battery of tests and procedures that would soon come. I remember thinking the last day I felt any hope was August 22, 2019…the day before my gastric bypass surgery. These first 49 days post-op would bring me to my breaking point physically and mentally. The fog of depression descended on me like a cement slab and it brought with it fear, anger, loneliness and despair as its companions.
The irony wasn’t lost on me. Seven weeks ago, a morbidly obese woman climbed onto the operating table, and here I was 49 days later being admitted for starvation. My bloodwork results revealed critically low levels that without intervention could lead to death. My vocabulary would soon expand with words and meanings I would need to get through the next chapter, but wish I never had to learn.
The first one was re-feeding syndrome. A condition first recorded in the 1940s when prisoners of war were released from concentration camps. After spending countless days starving, if they ate too much too fast they would die. My first several days in the hospital I was on 10ml of enteral feeding an hour….2 teaspoons of food dripped into my body over the course of an hour. Two teaspoons.
Transport came to get me from my temporary “housing” and brought me to interventional radiology first thing in the morning. I was groggy, scared and had no idea what was involved in placing a feeding tube down my nose. The radiologist explained that they would lead the tube down my nose and then it was up to me to swallow against my natural gag reflex to get it into place. Four feet of tubing had to go into my stomach via my nose, and I would have to fight against the “danger” signal trying to force it up to get it down. It was HORRIBLE. My nose bled, my throat was sore, my heart was racing, and I was so exhausted already, but this event took away all remaining energy I had.
I had two teams of doctors visiting me on a daily basis; the surgical team and the digestive health team. They collaborated and developed a treatment plan for me. After I got to my room I remember staring at my IV pole and was taken aback by how many things were hanging from that pole to keep me alive. I knew I needed it all, and it was also a tangible reminder of how sick I really was.
Failure To Thrive Took Over My Identity
During the pre-op appointments you hear about complications, but you never think you are going to be in that 1%, yet here I was on the wrong side of the bell shaped curve and in a fight for my life. My sense of personhood suddenly seemed to be reduced to symptoms, reactions and serum levels. ICD-10 code R62.7-Failure to Thrive took over my identity and it scared me. I was in a story war of who I knew myself to be and the person who stared back at me in the mirror. I didn’t recognize her, and yet her face revealed the depletion I felt in my body and spirit. She had no energy, no coloring, and was desperate for answers. The woman I knew in my bones was a conqueror of hard things who had a quick wit and a wicked sense of humor. She is the one who checked into the hospital carrying her dress clothes for the wedding of one of her closest friends in a garment bag, even though her surgeon had insisted that there was absolutely no way she would be discharged in time to go to the wedding.
From the moment I arrived, I drove every staff member nuts telling them I had a wedding to go to on Sunday, so much so that they finally put it on my activity board. I think mostly in an effort to appease me while simultaneously not believing it would ever happen. Who gets permission to be let out of the hospital on a day pass in my condition?
Complications, big or small, require you to pivot, and that pivot is often jarring. The recovery process I had anticipated was not the one I was living, nor could I just will my way out of it. Buyer’s remorse is very common in the early stages of recovery and/or when facing a setback. In the midst of so much unknown, what I did know is that my surgeon didn’t do anything wrong, I didn’t do anything wrong, and there was no way to know this was going to happen. I needed those handholds to make it through the desperate moments.
Even though I felt so lifeless, I was still plotting a way to make it to this wedding. I convinced the feeding tube company to ship my unit to the hospital instead of my home. I got a nurse to bring me a hairdryer, and another nurse to program my unit for me in order to present my case to the surgical team. I had a cheering squad and co-conspirators. The last thing I needed to do was get permission from the lead on my surgical team.
The Morning Of The Wedding
The morning of the wedding, I told the surgical lead that there are people you apologize to for missing their wedding, and there are others you move mountains for. This friend is one you move mountains for. I was able to leave the hospital escorted by a friend and attached to my portable unit long enough to see the ceremony. I was given the cellphone number of the charge nurse and had strict orders to return before the shift change. We all knew that while my physical health was fragile, so was my mental health, and it was clear to my team that I needed this to lift my spirits. Forever grateful for the fighter in me and all those who fought for me in order to make that moment possible.
As I approach my three-year surgery anniversary, I look back at what these past three years have held with a sense of awe. The terrain I have had to traverse to move out of failure to thrive into a season of thriving has required a kind of grit you don’t know you have until you need it. My first two years were harrowing, to say the least.
Setbacks, emergency surgeries, teaching my body to eat again, and so much more. This past year has been the most “normal” year post-op. In some ways, it was also the hardest for me as a bariatric patient. When sickness and crisis defines you for so long, it is hard to actually believe you are okay. It was the first year without the feeding tube as my backup when I encountered setbacks with eating.
Every stomach ache created anxiety at first. What most people learn in their first year post-op, I have just started learning now that my body isn’t in crisis.
This journey has forever changed me. Far more than just my pant size and the number on the scale. I have lost friends who walked away during my suffering. I have gained an appreciation for the simple things, like being able to eat, which I used to take for granted. I have achieved athletic accomplishments like running and climbing mountains.
Aspects of my recovery brought me to my knees, begging for mercy. I have grown vigorously and against the odds. While this journey has left no part of me untouched, I have zero regrets. The path to recovery looks different when you encounter complications, but I can say from my own experience that this incredibly tough road I have traveled on has been worth it. I am now thriving and I am encouraging others who also find themselves in the 1% to hold on to hope on their own journeys as well.
Melanie Lindell, MA, is a Licensed Mental Health Counselor
ABOUT THE AUTHORMelanie Lindell, MA, is a Licensed Mental Health Counselor and will be 3-years post-op in August from weight loss surgery. While she had a tumultuous surgery recovery, Melanie believes we need witnesses to the beautiful and shattered parts of our stories as humans. She has a Master’s in Counseling Psychology and helps survivors of sexual assault, child sexual abuse, and fellow bariatric patients move towards more health and recovery.