Hello, it is my hope that my story may help educate, motivate, and or reassure others.
As a preface to my aortic dissection, it was known that I have Marfan syndrome, and have had a previous aortic arch aneurysm repair.
It was a typical Sunday morning for me. Coffee, a morning bowel moment and then onto some home repairs. I had just started on the final installation steps of a new dishwasher; when my son offered me a beef stick. Since I was already working, I ate it very quickly and continued on my task. Very shortly after I had abdominal discomfort and headed to the bathroom for another sit on the toilet.
To my dismay, I was unable to alleviate the abdominal discomfort. Then my lower back began to hurt. I've made my living as a roofer, carpenter, and as a mason. Back pain was nothing new to me, in fact after all the past slipped and hemorrhaged disks, it was common place.
But the abdomen pain did not subside. It felt like I had the beef stick "stuck sideways" in my intestines. I tried the toilet again, but to no avail. The pain was an uncomfort I had never felt before and I had my wife call 911.
With the pain severe enough to cause my body to perspire, I stripped down to my underwear and lied on the floor wriggling in pain not sure what was wrong, but something definitely was not normal.
While waiting for the rescue squad, and my wife on the phone with dispatch, it was suggested that I take a few baby aspirins. So I did.
First the police arrived, and since I have lived in my small community for many years, I was on a first name basis with the officer. While ruling out an opioid overdose, the medics arrived. They did their standard once over, checking vitals and gathering information including past medical history.
"It felt like I needed to poop, and needed a back rub" "I think I have a beef stick, lodged in my abdomen" was the only thing that I could tell them. They draped me with a blanket and away I went to the hospital.
Upon arrival, the pain was overly intense I squirmed in the hospital bed like a worm out of dirt. I rolled over onto my knees, then back again onto my back. I sat up, lied down, there was no position I could find to make the pain go away.
Based on my symptoms appendicitis, or obstructed bowels was suspected. I was sent to the CT machine. I wasn't even completely out of the machine, and the techs, nurses and doctors knew what was wrong. My aorta had dissected from the arch all the way down to my iliac arteries. They gave me a shot of fentanyl and I was comfortably numb.
Back to the emergency room I went, where my wife was waiting for my return. They informed her of the prognosis and told her to hurry back home and bring my children back to say good bye. I probably wouldn't survive the helicopter ride to the nearest major hospital.
After a tear filled, telling of my 6 y.o son that he was going to now have to take care of his baby sister and mother by being the new man of the house, and telling him I had taught him everything I could, I was heavily sedated and loaded into a helicopter. Half naked in below zero temperatures. I remember the biting cold, swirling snow, and the deafening roar of the engine and blades.
Three days later, I awoke in a quiet, light filled hospital room with my wife sitting at my bedside. I asked what had happened, and she replied "you took a long nap". What really happened was the medical staff had kept me in a coma and monitored my vitals until they stabilized.
After a conference with the top surgeons, I was transferred to another hospital to meet with a specialist regarding the dissection. After another CT scan the specialist told me that "I have nothing to sew to" my tissues were severely damaged to a point of basically liquification. "Go home for a few weeks" he said. "If you make it, we may be able to make a repair".
So home I went, with a bag of medicines.
These were not normal medicines, these were the type of medicines they say "take with food", in the fine print they should say eat first because you will pass out before your finished with your meal. These medicines were so strong that I couldn't finish a peanut butter and jelly sandwich. They were so strong that I would experience hallucinations, and have conversations with myself while in another time space dimension. My wife would video record a few of these. The children would ask "what's wrong with dad"?
After about 3 weeks of oblivion, I went for another CT scan. The surgeon decided that he may have enough to sew to, so we scheduled the surgery for a few days out. The abdominal aortic repair.
The morning of the surgery started off ok. I spent the night in a hotel across the street, had another CT scan and was prepped. Hospital gown, fresh shave (everywhere except the hair atop my head), and an iodine bath from my neck to my knees.
On the gurney I went and wheeled into the surgical room. The ambient temperature is kept right around the freezing point. So when my bare, but sweating (from fear) posterior hit the ice cold stainless steel table, I was happy they had already removed the hair.
74 exterior staples and approximately 300 interior stitches it took to close me back up. I had been cut from just below my left shoulder blade down diagonally to below my belly button, and rolled open like an egg roll on the cold steel table.
In the 40+ years and over 1200 surgeries the doctor had performed, only 3 people had ever spoken while under anesthesia. I was one of them! "Roll me over, or I'm going to die" I had said. My wife had already received word that the surgery went well, they were closing me up, and that she would be able to see me soon.
4 hours later, I finally left the operating room. What was supposed to be a 9 hour procedure turned into 13 during the last 15 scheduled minutes.
What divine intervention interrupted the surgical team and possessed me to speak, will forever be unknown. What I do know, is that after uttering "roll me over, or I'm going to die" the medical team could not find a pulse in one of my legs. What went wrong will also forever be known to only a few individuals with scalpels and thread in their hands. As this portion of the surgery was left out of the medical notes.
After a slow warming of my body and revival from anesthesia, I tried to pull out my breathing tube yet again. A few years prior, during my arch repair I learned that I become very hostile and violent when the anesthesia wore off. The charge nurse on duty contacted my surgeon, who made the decision to assist me in the removal of the tube. I was having difficulties, because they had my wrist and ankles bound tightly to the bed with a waist belt across me as well.
Complications and difficulties after the surgery included liquid on the lungs which solidified causing atelectasis and reduced lung capacity. Pain management was the major factor during my recovery. There is a fine line drawn between the narcotics needed to take deep breaths and get up to walk, and the amount it takes to stay comfortably sedentary with shallow breathing.
While in the hospital, they kept me numb. I walked regularly, and used the breathing tools given as directed and with no trouble. Once home, that was a different scenario. Tylenol doesn't cut it. I wasn't getting off the couch. Recovery was slow but, I was able to finally get a prescription for pain medicine, that I self regulated, and was able to again start activities and breath deep again. However, the pain didn't go away.
After a month of agony, I made an appointment to meet with my performing surgeon. We discussed the exacts of the procedure and we were able to pinpoint what was giving me aggravation. During the procedure they use a tool similar to a pair of scissors or pruning shears to cut through your ribs. The bottom 3 ribs all get wired together for healing causing a lump of bone that the incision rides on top of. Your abdominal muscles are cut through, not separated, and any connecting nerves are severed as well.
This quite brutal trauma and pain associated, is amplified in those of us who are thin of build. A year later, I still have nerve pain, a lump of rib bone and a "clicking" rib.
Four months later, after my abdominal aortic procedure, (the Friday before the 4th of July) I went in for a routine CT scan. I told my son I would return that afternoon. After the scan, I was told that in fact, I was not going back home. My ascending aortic dissection had became much, much worse.
However, because of the holiday, surgery wouldn't be until the following Tuesday. With the surgeons skepticism, my promise of no exertion, and against medical advise, I went home anyway. If I was going to die, it was going to be at home with my family. I was going to keep my word to my son.
The following Tuesday I returned to the hospital for my ascending aortic replacement. Surgery went without any complications. 5 days later while in recovery, and with the family visiting me bedside, the medical team found that I had "fluid" on the heart. A quick glance at his watch and the surgeon said I have time to do it today. Get him ready, and I'll have him back in an hour. My young son patiently waited in the hallway outside of the operating room. Within the hour he was yelling down the hallway "mom, here he comes"!
The pericardial procedure went fine and within a few days I was home again.
Back to the recovery process... Walking, deep breaths, sitting to shower, and having my young son make me peanut butter and jelly sandwiches while on his first grade summer vacation. After a few weeks we were able to walk to the park where dad sat down and watched him play.
It's been 13 months since my initial dissection. I will never be the person I was prior to the acute event. But, I can do quite a bit again. I can go fishing, rake leaves, and use a tractor. I can shovel very small amounts of snow, carry in groceries, and give good hugs again.
In closing, and with tear filled eyes I leave all with this... We know our bodies better than any doctor. If something isn't right speak up. Get the scans for proper diagnosis, find the specialist for the surgeries needed.
Doctors, please listen to the patients. If they say they can't breath get them a lung doctor for consultation (I had to have a pleurodesis) after my arch repair. If they say something hurts take the time to explain to them why and figure out what they need to manage the pain. I still have half a bottle of Percocet left. And patients, please be patient. Recovery takes a lot longer than what "google" or the doctors say.
Through prayer, I say thanks to all of those involved with my story. But of utmost importance and thanks, is to the greater governance of all that exists.
- Justin Woods