My journey began sometime around the age of 20 when I began having pains in my abdomen. Months and tests later, a tumor was discovered in my liver. It was noncancerous, so they decided to monitor it for about a year to see what would come of it. Well, the tumor was growing off of hormones and developed to the size of a grapefruit! I met with many surgeons who told me it was inoperable, that I would bleed to death and this tumor shouldn’t be causing me pain. Well it was. So I found a top liver transplant surgeon who was willing to “fix” me all up! He said after the tumor was removed, I would no longer have pain!
He was wrong. When they went in, they discovered it could not be done laparoscopically due to the fact that it could turn into cancer and they didn’t want to take chances. On March 13, 2009, at age 22 I had half my liver removed, my gall bladder and the tumor. Recovery was a gruesome process, but I pulled through!
For about two years following this surgery, I noticed I developed constant nausea, and I couldn’t tolerate foods that had been fine in my past. Doctors just said it was because of the gall bladder removal. They put me on some antacids and zofran and sent me on my way.
In September of 2011, I started getting awful migraines. My PCP said it was just anxiety because I was graduating college and had to face “real life” as an adult. I took her advice and within a month started having dizzy episodes and passing out. About three hospital trips later, I finally got my doctor to send me to a cardiologist because the palpitations I had developed had kept getting worse.
More tests and hospital stays, which caused me to lose my job. Then on February 14, 2012 my cardiologist diagnosed me with Dysautonomia— Postural Orthostatic Tachycardia Syndrome (POTS). And at the same appointment, I was released from his care because he had no knowledge of this rare and awful condition that had no cure.
A few months later I had found myself a good team of doctors at the Mayo Clinic in Scottsdale, who later (April of 2012) diagnosed me with Gastroparesis (I will explain all these words shortly).
Then in November, when I turned 26, I was dropped from my dad’s insurance policy– meaning no medicine, treatments, etc.
This left me with no choice but to try and work again. I got a part-time job, which lasted three short weeks. I was leaving work one day and, as I pulled out of a parking spot, I completely blacked out. No more driving for this girl (just another thing taken from me from this awful illness).
A month later, I was admitted to Maricopa County Hospital from what I had thought was a bad Gastroparesis flare up. I was wrong. And here is where the surgeon was wrong as well. After a few tests the surgeon team came in extremely concerned. When I had that surgery (since it was so intense and apparently caused weight loss), I had developed superior mesenteric artery syndrome. An obstruction, this syndrome needs to be fixed but cannot until I put weight on (before I was sick I weighed 135 pounds; I am now at 113 and can’t gain a pound for the life of me).
So that is my journey thus far! Now who is ready to learn and become aware?!
Dysautonomia literally means dysregulation of the autonomic nervous system. The autonomic nervous system is the master regulator of organ function throughout the body. It is involved in the control of heart rate, blood pressure, temperature, respiration, digestion and other vital functions. Dysregulation of the autonomic nervous system can produce the apparent malfunction of the organs it regulates. For this reason, dysautonomia patients often present with numerous, seemingly unrelated maladies. The form I have is called Postural Orthostatic Tachycardia Syndrome.
Gastroparesis literally means paralyzed stomach. It is one of the most severe and complicated gastric motility disorders. It can be caused by a number of factors and is commonly seen in the diabetic population. Often the cause is unknown. It is more prominent among females than males. Approximately 5 million Americans, including children, suffer from gastroparesis. In some instances, it appears for a brief time and goes away on its own or improves with treatment. Many cases are refractory and do not respond well to treatment. Gastroparesis is complicated to treat and treatment options are limited. There are few medications available, mostly geared towards symptom control rather than dealing with the underlying problem. For this reason, they are often ineffective. Additional treatment options include diet changes, certain surgical procedures, and in severe cases, nutritional support through feeding tubes or IV nutrition.
Superior mesenteric artery syndrome is a rare digestive system disorder. The superior mesenteric artery provides blood to the small intestine, cecum and colon. It crosses over the first part of the small intestines.
I am very open about my conditions because they are all RARE, and the only way that a cure can be found is by educating others and spreading awareness! So if anyone has questions for me, feel free to ask! And thank you for joining my fight!