Can you support CaringBridge during our Fall giving campaign? Generous donors like you ensure that CaringBridge remains ad-free, private and protected.
Aug 8, 2017
Hi my name is Amie which when researching the meaning of my name I discovered "Amie" is supposed to mean beloved. My entire life I knew I was different, I just didn't know how different, lol. I think that joy and laughter is just as important, as is your medical team and medications are for diagnosis or disease process. The most important though is God and know He is the true source of life, love, and prosperity. I found out that I have a rare genetic disorder called Familiar Adenomatous Polyposis or FAP in April of 2016. Since that time I have spent many hours educating and researching my diagnosis and the other conditions I have which most likely are linked to it. I purposely waited to find out if I was the parent that predisposed my only two living children to this Colorectal cancer causing predisposition, as they were both diagnosed within the same week in October of 2014. My daughter was first diagnosed after spending one week in ICU two blood transfusions and a mixture of IV antibiotics. My son was having the same exact symptoms as my daughter and was himself on the verge of having transfusions as well. He was able to use the pictures obtained from my daughter's colonoscopy to obtain his referral from his PCP to a gastroenterologist. And was scheduled for his colonoscopy within days of his referral to the GI. With all that being done my daughter was transferred from Lufkin TX St. Luke's to Houston St. Luke's where she received a battlery of tests for her GI team. It was there that we met her GI oncologist Dr. Avo Artinyan. He in all rights is a wonderful doctor and did an amazing job and is very patient and kind towards his patients and their family. However if there was one thing he could have done differently for my daughter was to code her surgery as preventitive or mandatory and not elective. Within one week from my daughter's discharge from the hospital my son had his surgery to go thru preformed by Dr. Thomas at Scott n White in Temple TX. An absolutely extraordinary doctor and surgeon. He has a wonderful bedside manner with his patients and their family. However on the day of my son's surgery (and by their surgeries I mean colectomy with temporary ileostomy) as I was with him driving him to Temple my daughter had to be rushed back to Houston for issues related to her surgery. As a mother I was torn and wanted to be in both places but how could I be. I had to trust that my children's father (whom I am divorced from) would get her to Houston as quickly as possible to determine what was causing her set backs. Dehydration, inability to eat or drink or even hold anything down she tried to eat or drink. All the while at this time I'm sitting in the surgery lobby all by myself praying to God not one but both of my children would be okay and make their way through surgery and the unknown causes of her issues. As a mother I can not tell you how agonizing it is to wait on a surgery waiting room by yourself praying for good results and outcomes all the while watching the hands on the clock move as slow as molasses and time drag on and on. I remember the relief I had as soon as I was called to each of the desks for the updates that I was given and even more relieved when I got to see my precious babies as they came into and out of recovery. The joy I felt in my heart was and is indescribable while at the same time being dismayed that they had to go through this kind of surgery and the affect and stigmatism it could cause them. Then two weeks after my son's surgery he was being rushed back to Temple for dehydration, inability to eat or drink and intolerable pain. Upon arrival and after testing it was found that he had a hepatic infarction. As a nurse I had never seen anyone in such severe pain before ever. Not being able to console or soothe my son's pain was so gut wrenching. I remember not knowing what else to do, so I dropped down to my knees right there in his room placed one hand on my son's chest and the other toward God and begged, pleaded, and prayed that God would deliver him from the agony that he was suffering and it was at that moment I left my son in God's hands. Three months after both my children's initial surgeries their. Colectomies and temporary ostomies they were able to have their take down surgery to connect their anastomosis to their j-pouch. They are adjusting well and still have issues from time to time, and have a hiccup here or there but for the most part are doing well. Now they still have to have their annual check ups bc they will always be at risk a higher risk than the average of developing colon cancer the second most common place to develop colon cancer is the deuodum and the stomach. So now it's 2017, I have managed to pay all of my deductible and 75% of my out of pocket expenses when I was scheduled to have my initial surgery, btw my first choice was to use my daughter's surgeon, but because he choose to code my surgery as elective verses mandatory or preventive, I could not afford my surgery. Two days prior to my initial surgery date my employer which whom I had my insurance through decided to fire me, she claimed it was due to neglect but in all reality it was due to neurological issues induced by my uncontrolable hypertension. Up until this point my employer had no problem with my work performance what so ever, however they did know I had an upcoming invasive surgery which I believed caused them to want to not continue my employment with them. In between my consultant with my first choice of surgeons, after he told me it would be an elective surgery I reluctantly filled out an inquiry to be seen at MDA Houston. Within minutes of completing the inquiry I received a call from Geetha the Social service representative for the GI patients. Geetha then circulated my medical history within the GI team. At which time Elizabeth Wolfe PA for Dr. Messick picked me up as their patient. You must understand from the first conversation on the phone to the in office consult both had been absolutely amazing. Dr. Messick actually listened to me and all my symptoms and did not dismiss them as other doctors previously had. As I told you in the beginning I knew I was different just didn't know how different. Well upon listening to all my symptoms Dr. Messick immediately went to looking at all my transferred medical records. He told me that I in deed had a tumor on my left adrenal gland, cysts on or in both over is, and kidney stones to both kidneys. You see I thought I was going crazy or making myself believe I had things wrong with me and didn't. And to have a doctor confirm that it was not in my head was like a moment of pure relief and suddenly I was able to connect the dots, or put the puzzle together that had no picture to which begin with.