Hello, I’m Kimberly and I want to share this story so that other patients who have chronic anemia and intestinal bleeding and are not getting better may find an answer. I don’t want what happened to me happen to another patient. I am a mother, wife, and rare disease advocate as my teenage twin sons have rare diseases. One has a brainstem angioma & one has Crohn’s Disease. I am a GIST Sarcoma & Thyroid Cancer survivor. I love my life and my children. I almost lost all of it due to years of misdiagnosis. I want to help others and I am dedicating my heart to improving legislation for patients and restoring compassion for patients. It’s important that those within the medical community think outside the box of common diagnoses for anemia when you have a patient with prolonged symptoms like I had. Just because a condition can be rare does not mean a doctor should discount it. Keep GIST Sarcoma (gastrointestinal stromal tumor) in your mind. GIST Sarcoma is a rare, soft tissue cancer. It does not respond to traditional chemotherapy or radiation. It is believed there are more GIST Sarcoma patients out there with the same symptoms I had and they are being misdiagnosed as well. This is sad, because often, sarcoma patients are misdiagnosed for so long then it is too late to save them. This has to change! And it begins with educating the medical community. When you have a patient, or you are a patient, with chronic, unresolved anemia, please consider GIST Sarcoma tumor that could be hiding in the intestines.
I was sick for five, long years. I was chronically, sometimes severely anemic, had life threatening gastrointestinal hemorrhages from my small intestine. Doctors could not find the cause of the internal bleeding. I recall waking up in an ICU with a hematologist at my bedside saying to me “Well, we almost lost you.”
This was only the beginning of a 5 year journey of hospitalizations and procedures… I had every single sign and symptom of GI bleeding and a GIST tumor. The hallmarks of GIST tumors are anemia and GI bleeding yet every single physician who attended me in Jacksonville, Florida missed the tumor in my small intestine. Every gastroenterologist, hematologist, internal medicine doctor, ER physicians, radiologists. The tumor was found via double balloon enteroscopy after 5 years of illness and misdiagnosis by physicians who had tried to find the source of my hemorrhages. I endured approximately 7 endoscopies & colonoscopies, bleeding scans, camera pill studies, angiogram and 5 years of chemotherapy for hours of intravenous iron that my body could not keep due to the internal bleeding–and probably procedures I don’t remember. I was in chemo units surrounded by cancer patients and my cancer was overlooked or misdiagnosed. I look back on this and my heart breaks every time.
It was Memorial Sloan Kettering in NY who questioned why doctors did a double balloon enteroscopy when my tumor was obvious to them on a CT Scan on first sight when they did their own scan. This is baffling to me to this day as I had had two CT Scans and the previous doctors had missed the tumor on those. Maybe it had grown? I will never know this answer. I had been (mis)diagnosed with arteriovenous malformations (AVM’s), or ulcers which no one could locate and even told that my gastrointestinal bleeds were heavy menstrual periods when I was actually having GI bleeds in a hospital.
This is the common, go-to diagnosis when women have anemia. I was hospitalized many times over the five years. A couple of hemorrhages almost took my life. It is a miracle I am alive today. To add to the symptoms of severe anemia I also had an undiagnosed rare cell form of Thyroid Cancer. I had asked doctors to please look at and ultrasound the lumps on my thyroid found by my family doctor and they were dismissive and the large medical facility I was a patient at would not approve me for new care. They had already misdiagnosed the first cancer so when the second cancer of the thyroid was confirmed by a doctor outside that facility they terminated my care to avoid liability. This was heartbreaking, humiliating and terrifying that a well-known, highly touted medical provider who claims “the patient comes first” sacrificed me to the purpose of protecting themselves, not me. I was a good patient. I was a compliant patient. I was a well-insured patient and my insurance paid this clinic a lot of money.
They had no compassion for me. I have never felt so low & uncared for. They were not concerned with the outcomes of my cancers or my life. But, I found great care at the best cancer hospital in the world at Memorial Sloan Kettering Cancer Center in New York City. I found a GIST Sarcoma specialist there and a great head and neck surgeon for my thyroid cancer. I was treated with compassion and I felt safe there. They still follow my care today even though I live far away. This experience has led me to become a patient advocate and took me all the way to Capitol Hill in Washington, D.C. where I shared my story with congressional representatives and I lobbied for compassion for patients, sarcoma awareness and am asking for better legislation to protect patients as much of this has been legislated out in many states.
We put our trust, faith and our lives in our doctors and when we are not getting better and we are very sick, we have the right to seek another opinion or care elsewhere. We should not be punished for the provider’s mistakes and we certainly should never be kicked to the curb like we are garbage. We must restore compassion in healthcare and reduce diagnostic errors.