I am the first person in the world to be diagnosed with Idiopathic Autonomic Neuropathy. Here is my story:
My symptoms started when I was twenty and my symptoms were normal, so nobody was expecting my illness to progress to something worse. I had my two kids and the doctors said it was female’s problems, so I had a hysterectomy by the age of 25. In the mean time, I was losing functions of my body, such as my bladder and colon. That’s where some of the other diagnoses started coming in place. The symptoms started growing rapidly and the doctors were clueless. The doctors were in complete awe because no matter how many times they tested my organs, the tests always came back stating that, in fact, they weren’t working properly, and soon, my organs were going to be paralyzed. In the meantime, the disease continued to spread to my small and large intestines and esophagus. By this time, they removed my appendix and gallbladder. I was sent to specialists all over California to be studied in hopes for answers and a cure. My medical files were put in a database for doctors all over the world to study, since I was such a unique case.
My diagnosis is Idiopathic Autonomic Neuropathy. And to date, I am the only person in the world known to have it. The way it was explained to me was IDIOPATHIC= it is unidentified, and AUTONOMIC= everything that is supposed to work without me thinking about it. Over the years, my organs started slowing down their functions until eventually they were paralyzed.
One thing all the doctors agreed on, was people with Autonomic Neuropathy typically are born with type A diabetes, and have lived with it their entire life, struggling to keep their blood sugar under control. It certainly doesn’t happen to someone such as me, where I don’t have type A diabetes.
The doctors started suggesting going on a ‘scavenger hunt,’ removing my bladder, colon, and cutting out more than half of my intestines. Finally, I saw a doctor at UCLA and he made a promise that he wouldn’t let anybody take any other organs from me, unless it was proven to be a life-and-death situation.
I had put too much trust in doctors, and they were taking body parts out, left and right just to see if, by chance, that was what the problem was. Honestly, I felt like an old damaged beat up car taken to a scam-artist mechanic; they tell you, “Oh, it’s your alternator,” so you pay for a new alternator thinking your car is going to be fixed. NOT! Then, they say it’s a battery, so you do the same thing, but that’s not the problem, either. They rip out all the computer components in the car and fuel injection, yet they keep promising you after they do this, that your car will be “healed,” but the truth is that it gets “sicker.”
I withdrew from everyone, and became distant because everyone thought it was all in my head. It made me question my sanity, “Is this in my head?” People called me a drug addict, because I took so much medication.
My doctor at UCLA wanted to try something new and promised me he wouldn’t cut anything out of my body. He said he would put a pacemaker in; I was going to be the very FIRST person to have this procedure done! I knew it was a trial and error procedure. The way I saw it was that I had nothing to lose and everything to gain if it worked; I would have a new beginning. If it didn’t work, then the doctor would simply go in and detach the pacemaker and I would be exactly in the same situation as I was before the surgery. Granted, I might not be as normal as the next person might, but who can really say what normal really is.
I was thrilled that I didn’t have to use a catheter up to five times a day or use an enema 2 to 3 times a day. Things are still sluggish on my insides and I still have episodes where I get septic poisoning and have episodes of major pain, but, I’m managing and it’s something to work with. I’m glad to be part of history, because I am the very first person to receive such a pacemaker for this purpose. Within the eight years after my procedure, doctors have performed 50 others.
Right now, after eight years after my pacemaker was inserted, it stopped working, so doctors are getting ready to put in a new one. I’m looking forward to getting my new pacemaker because I’m ready to be back, good as new. It’s truly been a blessing for me.
Since my procedure, doctors have called me from all over the world asking me questions about my symptoms, treatments and their effects. My doctor shared my contact number with other patients like me, so we can exchange our stories to see if we have similar symptoms. The people I have talked to are at the end of their wits, just as I was. Other people like me have been scammed into medical ‘treatments,’ and are burned out, with no hope. They could talk to me, the girl who threw her hands up and said, “I’m all yours doctor, and I promise I will not let another knife-happy doctor start cutting away parts body parts that I really need.” I put my trust in my doctor at UCLA, and promised him that even though I’m an experimental case, I wouldn’t make any decisions without him.
Technology has come a long way. It’s hard to believe that I’m actually the first person in the world to have this disease, much less be the first one to have a doctor experiment by putting a pacemaker in my intestines to shock my organs, so I can live the best life I possibly can.
It took YEARS and YEARS to come up with my medical label, so I want to share with people because if it helps one person, I feel like I’ve accomplished something. I don’t mind sharing my experience because I’m hoping my story may touch someone and help inspire doctors to do more research to help others.