OCTOBER 6, 2023
Nova Combian: Looking into the future.
Our goals at Nova Combian are big and bold. Our main goal is to build a better and brighter future for patients with connective tissue diseases.
Connective tissue diseases have been kept in the dark for long enough; not enough physicians have the knowledge that they should regarding this class of illnesses. Not only does the average physician not have the knowledge necessary to diagnose and treat a connective tissue disease, but the co-morbidities that come along with these illnesses are also venturing into the unknown.
It is time to tackle these challenges with connective tissue diseases and the co-morbidities that accompany them and find answers for patients that have been searching all their lives for help.
Nova Combian hopes to accomplish this by looking into the future. There are a lot of things needed to help accomplish our goal of improving the situation for connective tissue disease patients and currently we are focusing our funds on:
1.) Education: By educating physicians via whatever resources we can get out there, we are making it possible for more diagnoses to happen. The more physicians that are aware of connective tissue diseases and their co-morbidities the less patients get ignored and labeled as a mystery.
2.) Conducting research: Through conducting research, we are able to learn. We are able to learn new ways to help patients and how to help them. Research is so important because it is the gateway into answers. At this point, we all need answers. There are so many areas that research can be aimed at. Genetics research, treatment research, case studies, etc…
3.) Funding patients to get the treatments they need: Currently Dr. Brock is the main physician at Nova Combian and she is advising all patients and their physicians. She is open for phone consultations and will be more than helpful with anything you ask of her. Traveling to see Dr. Brock in person is expensive and something that Nova Combian eventually wants to help families with. Treatments are also expensive.
Nova Combian wants to help patients with Connective Tissue diseases and their co-morbidities. Our goal, looking into the future to tackle challenges patients with connective tissue diseases face.
Please check out our go fund me page!
https://www.gofundme.com/f/researching-connective-tissue-diseases
SEPTEMBER 26, 2023
How to save a life
It is hard to believe that October, 20th, 2022 was almost a year ago. Although it was the worst day of my life; I am still happy I got bed that morning because this story wouldn’t be possible had I not.
Everything that I have been through since that day. Every breath I have taken, every move I’ve made, every decision I’ve fallen upon, everything I have done in my existence has changed since October, 20th, 2022. I will never be the same person that I was on October, 19th, 2022. October, 20th, 2022 marks the beginning of a story.
October, 20th, 2022
My eyes began to open naturally to the rising sun; I tried to force them shut again and fall back asleep again. I wasn’t stupid… I knew what day it was today. I didn’t want today to have to be today. I didn’t want to have this stupid test done because I knew the doctors would never let me eat again in my life and I would have to increase my feeding tube.
I wasn’t stupid and I knew that the results of the study were going to be really very bad and I loved taking a few bites of food here and there… I knew that was not going to be a possibility after this test; to make matters worse my husband was coming and he wouldn’t let me cheat on my “diet” either.
So, I shut my eyes again and I tried to fall back asleep.
Probably one of the best decisions I have ever made was to go to my favorite restaurants before the test. The doctor’s appointment was later on in the day so I insisted on eating before we went; I had about four bites of my favorite Mac and cheese and it was so good.
The test that I was dreading is called a FEES study; also known as Fiberoptic Endoscopic Evaluation of Swallowing. A FEES study is a highly specialized test that evaluates the patient’s ability to swallow. The process involves…
- Numbing the nose for the endoscope (a little worm looking thing with a camera on the end)
- Insertion of the endoscope into the nostril to look at the throat giving the physician of the trachea (where the air goes into the lungs) and the esophagus (where the food goes into the stomach).
- Different liquids are stained with food coloring and patient is asked to swallow these. In a normal person all liquid and food goes down the esophagus into the stomach and that is what you would see. In patients that suffer from aspiration, you will see some amounts of liquids going into the trachea, which leads to the lungs.
The first thing the doctor said during the study was “when was the last time you ate?” I still had two noodles stuck on my throat from when I had my “last supper” about two hours beforehand. I felt like I was caught red handed, but we all kinda laughed about it, but then the study started… I aspirated on everything…
The purpose of the test is to see if the patient is aspirating and what types of consistencies they are aspirating on. My test was stopped as I aspirated large volumes on all consistencies. About a week later I read the actual report of the study and I was heartbroken.
I knew that October, 20th, 2022 was going to be a bad day, but I didn’t think it was going to be the day that I learned I was probably not going to live for very much longer.
I was only 23 years old; I wasn’t ready to say goodbye to my family or my friends or this beautiful world.
I wanted to travel, I wanted to see things and go places and touch the sky. I wanted to have a long and happy marriage, I wanted to have children, I wanted to experience places and things; there is everything to do all around us and I suddenly wanted it all. There were more things I wanted to do than I didn’t want to do and I didn’t know how to react at all when they told me my approved diet was “ice chips and small sips of water for pleasure.” I knew I had a feeding tube, but I also knew what “ice chips and small sips of water for pleasure.” Meant with a stomach that could only tolerate a certain amount of feeding formula per day.
I stayed alive by forcing myself to choke on baby food. I did a lot of coughing, but I stayed alive and although it wasn’t safe, I am alive because of newborn Gerber. The rest of my nutrition was supplemented with my feeding tube.
In December, my stomach became paralyzed. I couldn’t tolerate the feeds anymore so they had to put me on a form of IV nutrition called TPN and I had A LOT of problems with TPN.
I have almost a non-existent immune system, meaning I am very immune compromised. My body doesn’t make enough immunoglobulins to support itself the way a normal body would and so I get infections frequently and I am high risk for any sort of tube or foreign body entering my body. Unfortunately, that is exactly what TPN is. TPN requires a central line that can easily cause a blood infection and to make matters worse it contains a lot of sugar so it feeds the bacteria as well. I got sepsis again and again and again while I was on TPN and we finally decided that either the TPN was going to kill me or I was going to die of starvation.
I did not want to keep ending up in the hospital with sepsis from the TPN and so I made the decision to go on hospice at 23 years old. My doctors were supportive and kind, but they had given up and there was nothing they could do to help me.
I was more than ready to give up… I had suffered so much in my life… But there was still some light inside of me that kept me moving forward and I survived for 6 months on hospice. During these 6 months, I continued to decline as I was starving to death. Again, I stayed alive by aspirating on ensure and Gerber baby food. I was bed bound and didn’t leave the house. I was alive, but I wasn’t really.
And then came the day. My mother came to me and said that she had heard from one of my doctors that there was a treatment center in Sri Lanka (yes halfway across the world) that could maybe help me. I basically laughed in her face and said “yeah and how much money is that going to cost us?” I thought the whole idea was a scam and that it was the stupidest thing I had ever heard of. EDS specialists working with Eastern medicine doctors to cure an issue that one of the best ENTs in the world could only fix by removing my voice box? Oh… Not to mention my paralyzed stomach… Even if they could help my aspiration, how could they get my stomach to move again? EDS is a genetic disease there is no “fixing” it. I looked at her and I said…
“They all say I’m going to die… Just let me die… I’m so close if I go to Sri Lanka I’ll probably die there anyways.”
I think that might have been the worst thing I have ever said to anyone, and I realized it right away. Tears streamed from her eyes like the waters Niagara Falls and she said something to me that I will never forget.
“If you die there… I will know in my heart that I tried everything to save your life.”
It was in that moment that my mother gaslighted the undermost bit of hope that had somehow survived through all the sadness and resurrected it from the depths of disparity.
As she injected my medications into my PICC line with those Titanic tears and boogers coming out of her nose I looked at her in admiration. I was so inspired by her in that moment. Because I had given up, but she hadn’t; it made me feel ashamed. I wasn’t crying because I didn’t care about life; she was crying because she saw something worth fighting for. If she still had hope I guess I should too; if she was brave enough to say that to me, then I should respect it.
I apologized in my own sort of way for what I had said and I promised her that I would try to get better… Even if it meant flying halfway across the world.
It took my mom about an hour to tell everyone that I was going to Sri Lanka to get the medical treatment I so desperately needed. We started a GoFundMe and we tried to get things together as soon as possible. I left the United States only a week later. The reason for this was that I had completely stopped eating, I kept having episodes of unconsciousness and desaturation and if I wasn’t sleeping, I rarely knew where I was or why I was there.
July, 4th, 2022
I got on the plane to Dubai and the flight attendant asked my husband if I was still breathing. Thankfully I was, but there was a high probability that I may not have been. When my husband and I arrived in Sri Lanka I didn’t know where we were. I had brought my own wheelchair, but because I was so confused I
thought that the airport’s wheelchair was my own and I actually left my wheelchair behind. It was a two hour drive from the airport to the treatment center and when we got there only then did I realize I did not have my wheelchair. My husband had to carry me to the room because I couldn’t walk more than a few steps without falling flat on my face.
When we finally got to the room he laid me down on the bed and that is all I remember about arriving in Sri Lanka.
A few hours after our arrival, I began having seizures and episodes where I couldn’t breathe. Almost all of the physicians were in my room including the “EDS expert” who in this case knew exactly what to do.
After having read through hours of my medical records to become familiar with me as her new patient, Dr. Isabelle Brock sprung into action. She told one of the other physicians to grab a “hydroquatersone injection.” I was already on a lot of IV medications and so I had a central line still.
There I was… On the bed, de-saturated into the 70s, shaking like a leaf of a tree during a hurricane, and completely unconscious.
There was Dr. Isabelle Brock… Hoping that she was right in regarding what was happening to me and hoping that this medication would save my life and I wasn’t going to die in that moment.
She injected the 100mg vial of hydroquatersone into my PICC line. My bodies tremors began to slow, my saturation level began to slowly climb into the 80s and then the low 90s and then I regained consciousness.
It is truly remarkable that a physician I had only known for 3 hours had read my medical records well enough and more importantly knew my condition well enough to recognize that I was having an adrenal crisis.
As I regained consciousness, a wave of confusion washed over me. I didn’t know where I was, or why I was there, I didn’t know who I was, I was beyond confused.
Dr. Isabelle Brock kneeled by the bed and took my hand and began talking to me to get my brain back…
“Hey. You’re back. Do you know what happened?”
“No.”
“That’s okay. Can you tell me where we are?”
“No. But I hear the ocean are we near the ocean?”
“Yes, we are near the ocean. Do you know where?”
“No.”
“You are in Sri Lanka and everyone in this room is here to help you. You have just had an adrenal crisis so its okay if you’re confused. Do you know who I am?”
“Yes, I think I remember now, you are my doctor.”
“Everyone in this room is a doctor and we are all here looking after you.”
“Okay”
I was still confused, but I saw my husband, I saw Isabelle and I felt my body begin to return to planet Earth.
After years of misdiagnoses, after years of mistreatment, in less than 20 minutes, Dr. Isabelle Brock was able to save my life. She took into account all of my conditions, and all of my circumstances on that day. With all of her knowledge in Ehlers Danlos Syndrome and its co-morbidities (one of which is adrenal insufficiency) she was brave and took action. She didn’t freeze and she didn’t panic… She did what was best for the patient. She remained calm and did the best that she could do; she saved my life.
I had never in my life had such a positive encounter with a physician. I continued to have seizures, but they were reversed with the hydroquatersone through my PICC line. Now that my body had some level of cortisol in it, I was actually able to function and this included one very exciting thing… I could eat again.
For the first time in years I was eating. The doctors in the United States had been wrong, and Dr. Brock had been right. It wasn’t the screws in my spine that were causing aspiration and preventing me from eating, it was my muscles lacking the energy to produce a swallow that was preventing me from eating.
From the first day I became her patient, Dr. Brock has brought nothing besides answers to my doorstep. When I came to Sri Lanka I was a 23 year old on hospice… Ready and waiting to die. As I write these words, thanks to Dr. Brock, I am a 23 year old writer… I have places to be and I have people to see.
SEPTEMBER 24, 2023
My Star by Audrey Sasseville
I write these few words to you with a heart full of gratitude and love. You have arrived on my path and like a star shines brightly in the night’s sky, you have shined brightly in my life. There are millions of starts in the universe, but it is YOU that has guided me here.
Our story begins in this conference room in Quebec. In the midst of a crisis of dystonia, subluxated vertebrae and adrenal crisis. You did what no other physician had done before and you corrected the subluxation in my spine. I then went to the hospital and you accompanied me in the ambulance to the hospital. You explained adrenal insufficiency as well as my spine (something that doctors never knew about me before we met). You gave me all of your love and all of your kindness during that ambulance ride.
You took my hand tightly and said “Audrey, what you are going through is extremely difficult, but what you have is physical and you are going to get out of it. I’ve been there too.”
You spent hours in the Emergency Room by my side trying to show the doctors what was going on, but they wouldn’t listen to you. I thanked you for your help, then you headed back to your hotel.
I went on living in a horrifically miserable state for 5 months following this incident; I had enough. The doctors completely abandoned me and I had no way out. The one doctor I trusted came to the emergency room to relay the message that the director of the hospital was exploiting me from his establishment because all of my symptoms were psychological and there was no reason for me to be there.
I had visited all the hospitals in the city more than thirty times, I had contacted private consultants, and according to all the doctors, there was nothing more to do with me; I was a psychological case. The psychiatrists had nothing to offer and did not help my situation at all. Eventually, I lost hope and I saw no way out.
I wanted to live a life, but not a life like that. It was no life to be in constant pain and convulsions. I remembered you and consulted you and you agreed to meet me and try to help me. You told me to go to Sri Lanka and joined me in April.
Since I have arrived, you have spent hours and hours helping me, talking to other doctors, and doing research. You have put together the missing pieces of the puzzle that the other doctors (and myself) were trying to understand. Thanks to everything that you have diagnosed and discovered, my condition has improved dramatically and I am able to live a normal life.
Thanks to you…. Your time… Your effort… Your love… Your kindness… And most importantly your medical knowledge in my medical condition, I am finally well.
I can walk, I can eat without vomiting and pain, I no longer suffer from severe dystonias, I have energy to function, I have much less pain throughout my body and I am on less medications. I am a success.
I consider myself very lucky to have had you as my star; my guiding light. Please never doubt the good that you do for others whether it is in your personal or professional life. What you did for me cannot be put into words, but now I get to live a life that I never thought I would be able to live before. You saved and changed my life… Forever and for the better.
Sincerely,
Audrey Sasseville
