I recently experienced a trip to the emergency room that could have been prevented. I have been diagnosed with indolent systemic mastocytosis (ISM) since 2000. I am prone to getting pancreatitis, so I know the symptoms involved with those attacks, but I had been noticing for months that my abdomen was hurting and something was just not right.
I had a CT scan with contrast about six months prior to my ER visit, and it came back normal. I continued to feel bad off and on for six months. No test ran showed anything wrong with me, so my family doctor thought it could be diverticulosis. I started eating lighter food, and I thought that I was getting better.
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Worsening symptoms with no answers
On the way to Utah last month to see my ISM doctor I started having extreme pain in the left side of my abdomen. I could not even touch my stomach due to the pain. My doctor in Utah called my family doctor here in my home state of Louisiana and requested he order a CT scan for me as soon as I arrived home that same day. It took three more days and me calling the office two times to find out that the order had not gone through. They said they were still working on it.
That evening, as I was driving my granddaughter to gymnastics, I started feeling chest pains and pain in my left arm, left shoulder and the left side of my neck. I called my stepmother to see if she could pick up my granddaughter, and I went to the ER in a different city.
I had never been to that ER because I normally use the local hospital where I live. The doctors in the ER near my home have history with me as a patient. They know how to treat me, and I have no worries about my ISM being treated appropriately.
In the new ER, the nurses took me back to a room, and a doctor came in and spoke with me. I was hurting and scared that I was having a heart attack, but he was so interested in my history living and being diagnosed with ISM. It seemed he wanted to know my life story, including how I was able to get into a trial in Utah. He was nice, but I was scared and ready for all the tests to be run on me to figure out what was going on.
By this point not only was I still having chest pains, but I began having mast cell flare ups in my bones, and I was itching all over. My blood oxygen dropped, and I was put on a nasal cannula. I hadn’t had symptoms this bad in over four years since starting the drug avapritinib. I was scared, in pain and just miserable.
Coping with disappointment in my treatment quality
When the doctor came back with the test results, I learned my blood work, EKG and chest X Ray all looked good, which was great news.
Finally, the doctor ordered the CT scan with contrast. It came back showing that I had diverticulitis–an infection in my gut. I had been living with this pain for five days at this point. I was given some antibiotics and was told to do a follow up with my regular doctor. My next test will be a colonoscopy as soon as I heal from this ordeal.
If I had received the CT scan that my doctor in Utah originally ordered, I would not have had to go through all this pain and suffering, scaring my family and myself. The swelling in my abdomen and the gas produced is what was making me think I was having chest pains. My stomach was so swollen and hard.
Sometimes, the medical community fails you. I don’t know if this test denial was insurance related this time, but in the past, there have been several times that I was denied a test the doctor ordered and ended up in the ER. This should not have to happen.
Now, the one test that could have been conducted days prior turned into me spending significantly more time and money for all the tests run during this ER visit. Additionally, I would have been on the antibiotics several days earlier and never would have been this sick. I am still recovering from all of this today.
I hope I never have to go through this again, but knowing what I do about living with ISM, I likely will. It’s only a matter of time. I just pray that one day, none of us will have to endure this. I wish I could help everyone in the healthcare system understand that when a doctor orders a test, it’s for a reason. Approve the test.
