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Taking Care of My Life and My Medical History

My story is one of ongoing medical errors resulting in two life-threatening issues. 

It began in 2000, when I suffered a ruptured appendix with mild peritonitis, inflammation of the stomach lining that can be fatal. Over time, scar tissue from the surgery caused adhesions that led to a small intestinal blockage 14 years later in 2014.

In late April 2014, I visited my primary care physician with abdominal pain and vomiting, actually waiting two days to call him thinking I had the flu. He wanted more tests to confirm a diagnosis. I wound up at a large academic medical center late on a Friday afternoon. The emergency doctors ordered an ultrasound, pointing to possible swelling of my pancreas and ignoring the notes from my primary care physician.

They diagnosed dehydration and pain and kept me in the hospital.

Three days later, with no improvement, a CT scan was ordered. After not eating or drinking much over the last 3 days, I had to drink two large bottles of barium. Even though I questioned this procedure, the nurse told me: “This is what the doctor ordered.”

After vomiting during the scan, dizzy and unable to bend over due to excessive bloating (twice my normal size), I needed help from the nurse to dress in my hospital room. Then, the next thing I knew, a group of 6-10 doctors appeared and started asking questions. My husband John arrived at the same time to see this young nurse crying.

The doctors explained my oxygen levels were very low. Soon, everyone scrambled to get me to the ICU ASAP. I had later acquired Acute Respiratory Distress Syndrome, a life threatening lung condition that prevents enough oxygen from getting to the lungs and into the blood.

On April 29, I was put in an induced coma to help my lungs recover. The next day was my birthday.

Until my lungs were stronger, the doctors could not operate on the intestinal blockage, which was identified as the problem from the CT scan. While in the coma and on a ventilator, I became twice my normal size because my intestines had burst (we found out later). My husband told the doctors they had to do something about my condition. Thanks to his urging, they did operate at that time but they told him I may not come through the operation and to be prepared. I was given last rites on May 13. My husband began planning my funeral.

During this entire process, I

  • Remained in the coma for 15 days
  • Recovered for another 3 weeks in the hospital with a breathing tube and IVs in place;
  • Had four surgeries and a temporary ileostomy (reversed by surgery) due to ruptured intestines;
  • Could not eat or swallow food until June 1; and
  • Spent the month of June in rehabilitation.

And - I lost my ability to speak and walk because of the complications and 30+ days spent in the hospital.

My surgeon told me later that the intestinal blockage should have been diagnosed within 24-48 hours after appearing in the ED. It took them 3 days to even take a CT scan.

I still worry about more adhesions. The more abdominal surgeries I have, the greater the chance for development of more adhesions.

I have switched all of my doctors to another hospital system. Yet, this new hospital group asked for paper medical records. Why? The previous hospital system can’t electronically transfer my records.

#IHeartHIT because it will give care providers my medical history and allow the team of doctors to connect for an integrated approach as I continue my care. I also will be able to take ownership over my own care because of mobile technology as I will never leave my care up to just the doctor again. I plan on being very much a part of the care team.

 

 

Keywords: 
Health ITPatient careEHR