Andrea’s story
I started not feeling well in the summer of 2021. I started feeling intermittent nausea and occasional pain in my abdomen. A week before my son was to be married, I was admitted to John Muir Concord. Numerous tests were done. My white cell count had skyrocketed, intense pain but no answers. I underwent an ultrasound because my marker for ovarian cancer was high and continued to rise. I released myself against medical advice because doctors wanted me to undergo more testing. I told them, that I would NOT miss my son’s wedding for any reason. I left not feeling good and worried that I might have cancer. The doctors told me that they would watch the marker but that needed to take a backseat to the pressing stomach issue.
I attended the wedding and was filled with an overwhelming joy that I was brought to tears most of the day. Wild horses would not have kept me from seeing him marry his perfect, beautiful soul mate Sydni. By Monday, I was back in John Muir.
All of a sudden, my stomach stopped draining. I had 2 bowel obstructions. I was in the hospital for 3 weeks to drain the fluid which was very painful, each time they had to drain fluid and 2 1/2 liters of fluid and mashed potatoes which is what I was surviving on. I somehow contracted H Pylori and MRSA and was given 32 bags of Vancomycin to kill these infections. I needed blood transfusions. The nausea and pain became so intense that I could no longer eat or even sip on water. I was hospitalized over and over again.
I underwent over 15 endoscopies and more ct scans and MRIs than I can count. To help my stomach drain, 2 large stents would be placed in my stomach to get it to drain. The stents were never meant to be permanent yet my body kept rejecting them and they would migrate. Each time a stent is placed there is a hole created. To replace meant another endoscopy. I became known as the case that could not be solved. So many doctors would consult with each other only to find out that no one had ever seen a case like mine. My GI team even flew to a conference at John Hopkins in Maryland with my thick file only to hear that they had never seen a case like mine.
The chief of staff in Concord heard about my case, I had a video appt, and she took one look at me and said you are in a serious state of malnutrition. I had been to the ER and was admitted for IV fluids and to get some nutrition in me. The chief ordered a PICC line stat with TPN nutrition. I was withering away and losing weight fast. A retired doctor friend of ours suggested getting into Stanford for a second opinion. One of their top GI docs reviewed my file and declined treating me due to being too critical, serious, and complicated. With that denial, I resolved that my case was hopeless. I begged God to take me out of my misery. I begged daily for this. I would go from my bed to the couch. One miserable day ran into another with no answers only more and more stents…I started receiving nutrition and my weight started to stable. Still with the nausea, I couldn’t eat anything. The stents caused even more nausea and pain.
I was growing more and more weak, my husband took one look at me and we called the Chief again. She said my case was too complicated even for her and advised that she was sending a Stat referral to Dr. Jonathan Carter at UCSF. I made a video appointment and gave his office permission to gather each and every report from John Muir.
On my first appointment, Dr. Carter took one look at me and told me that he could see that I was failing fast. The malnutrition had attacked my organs and hit my brain hard. He had never seen a case like mine. He told me that he would research, figure out how to help me. I became so weak that I couldn’t make it even off the couch, I knew that I was dying. My husband came home from work, took one look at me, and said we are going to the ER at UCSF. I was admitted in a very critical state. My PICC line had gotten infected and the infection had gotten into my bloodstream. Dr. Carter had a plan for surgery but I would spend the next 3 weeks in UCSF getting strong enough to survive the large surgery. I had very low blood pressure and ended up blacking out twice. Understandingly the DMV took my license for what was to be 1 month - I was advised that with a clear bill of health, and normal blood pressure that it would be automatically reinstated.
On December 1, 2022, I underwent a 5-hour surgery (which was expected to be 2 1/2 hours) The placement of multiple stents almost made the surgery impossible. My abdomen had so many holes in it, that my entire anatomy had to be changed all around. A majority of my stomach was removed as well as my Pyloris muscle and a small portion of my small intestine. Dr. Carter was able to save a small portion of my stomach and attach it to my esophagus. A Peterson’s hernia was also repaired. I had nothing by mouth for a week, and started walking and gaining strength. After a month, I was able to return home. I was home fighting to get my license back, all of my vitals were strong. I had a clear bill of health from my doctor and I fought a battle with the DMV like no other. The month turning into a long 9 months!! As I was recovering, gaining strength, and building my immunity up, in March 2023, I developed pain like I had not experienced before, my husband took one look at me and we left for the ER. I had developed an intussusception which if left, can quickly become fatal. I went into surgery, and another week in the hospital. On May 26th, I developed another intussusception. I was admitted again and spent 5 days at John Muir. No surgeons were comfortable with my history. I was transported by ambulance to UCSF, 3 days later I went into surgery and ended up having a revision to the large surgery I had had. After a week in the hospital, and experiencing a couple of scary complications I am home building my strength all over again. That made 3 major abdominal surgeries in less than 5 months. I feel very blessed to still be alive. My doctors have told me that my body went through a lot. Complete healing will take quite some time.
I will need to make healthier choices. My body will not ever be able to process sugar, carbohydrates, and starches as I once did and LOVED!!! Each time I ingest them, I will be immediately sick. I was counted out of this game of life on more than a couple of occasions. With God by my side, it is not my time yet. I am privileged to share my story.
I want to offer hope and encouragement to you. As I continually got knocked down, I asked God to help me get back up, get back in the fight with one health obstacle thrown my way after another all the while proudly wearing my Grit clothing!
