A home at HIStalk

Early in the morning of Monday, April 13, I walked across the McCormick Center in Chicago.  I headed toward the exhibition floor.  I had an exhibitor’s pass, so even at that early hour I was allowed into the mammoth room. I passed glorious booth after glorious booth.  Many venues were filled with plush carpets, large flat screens, food kiosks and even fine art.  I walked through isle after isle until I arrived at the 5300’s.   Then I turned, dragging my art supply case behind me.  I walked up the isle toward the HIStalk booth. 

The HIStalk booth was modest in the extreme.  The booth itself was a 12-foot by 12-foot space.  The carpet thin, the back drapes were a simple white. Two standing panels explained that HIStalk was the site for up-to-date news in HIT and the place to build your brand.  In the center was a foam core cut out of the Tim’s avatar from HIStalk.  A table with one chair graced the entrance of the booth.  The booth may have seemed austere, but I assure you HIStalk spares no expense where it really matters.

I attended my fourth HIMSS conference April 12-15, 2015 because of HIStalk.  This conference is one of the largest in the field of healthcare.  Over four short years, I have seen it begin to transform.  I used to be one of the few self-described patient attendees.  Now there are many of us.  I almost did not attend this year due to costs, but HIStalk came to the rescue.

In the spring of 2014, I did an interview with Tim from Histalk.  In that interview I bemoaned the lack of patient representation at HIMSS and explained that few patients could afford to attend the event. Tim offered to help create a scholarship for patients.  This year I reached out to Tim so we could make that scholarship a reality.  Of the many patients who applied, five were chosen to receive scholarships.  HIStalk also offered me a scholarship to cover most of my air travel and most of my hotel costs. I was still homeless at HIMSS on Tuesday night, but Kourtney Govro from Sphere 3 Consulting came to my rescue (as she did in 2014) with a last minute room.  

When I arrived in that modest booth on April 13, 2015, I began to set up my easel and paint jackets for The Walking Gallery.  Every few minutes a vender would come by and thank HIStalk profusely for what it does.  I would explain that I was working with HIStalk on their scholarship campaign and would give the HIStalk team the messages.  I heard the phrase “We are your biggest fans!” at least a hundred times.  Almost every vender that came by left swag and small gifts for the HIStalk team to give away. 

Lori and Jenn from Histalk arrived around 11 and received many accolades and I continued to paint.  Soon the patient scholars began arriving.  There was Carly Medosch, who speaks on behalf of so many patients with chronic illness.  Tami Rich who advocates for both her aging parents and her son with a heart condition.  Melanie Peron who after loosing her life partner, created The Butterfly Effect: a social enterprise to improve care transitions using art, story telling, and technology.  Amanda Greene who advocates on behalf of the Lupus community. Kim Witczak was the final scholarship recipient, but sadly could not attend due a time conflict at home. 

As each fellow patient arrived we embraced in joy.  Then each patient began the exhausting process of going to vender booth after vender booth and talking about technology from the patient perspective.  I stayed in the HIStalk booth and painted.  I listened to the attendees praise the work of HIStalk as they eagerly spoke about the HIStalkapalooza party on that Monday night.

Of all the parties that happen at HIMSS, HIStalkapalooza is the golden ticket event.  Each year it has grown and grown.  This year it was hosted in the House of Blues. The event was standing room only.  I and the other patients attended the festivities and Melanie even wore a French couture ball gown!  I am not one for crowds, so I stood in a quiet corner by the bar and listened to Jonathan Bush, co-founder of Athena Health and Walking Gallery member, get a pie in the face.  Everyone in the room was so jolly.  It was a lovely evening and I thank HIStalk for inviting us.

On Tuesday, I painted Carly Medoch’s jacket “My Medicine.” In that painting pills that treat pain through chemicals morph into the bunnies that treat pain through cuddles within the swirling cacophony of Carly’s life.  I finished it in time for her to gather in the HIStalk with the other members of the Walking Gallery at HIMSS.

I also painted a canvas for HIStalk.  It is entitled “We are your biggest fans.”  It is painted with the bright hues of the House of Blues.  In the center of the painting is the pie that would soon adorn Jonathan Bush’s face.  A winning sash like a beauty contestant would wear falls from the ceiling emblazoned with the words: “We are your biggest fans.”

I’m not sure who is saying that phrase. Is it the hundreds of attendees that visited this nondescript booth in the hinterlands of the trade-show floor?  Or is it the staff of HIStalk who loves their readers and knows money invested in a fancy booth is money that is not spent on people, patients and parties where we all embrace each other. 

Rolling the Dice

I paint the patient story.  Many people know that.  Others who closely follow my work know that my focus in advocacy is patient data access and the patient/caregiver role in the implementation and use of HIT (Health Information Technology).

Last March, I was honored to do and interview with the elusive Tim from HIStalk about the current landscape in HIT. Tim is known only through his avatar and his writing. I met Lorre Wisham during the process of conducting the interview.  She is the public face of HIStalk. She attends conferences and oversees the day-to-day operations of HIStalk as the Chief Operating Officer.  She also has an avatar and that avatar is lovely.  The image is based upon her real face.  She almost seems like a Disney princess, the image in the looking glass, the fairest of the land. 

Lorre asked if she could join us in The Walking Gallery.  I read her story of pain and cried.  This is her jacket painting “Rolling the Dice.”  Here we see the other side: the mirror’s flipped reflection. Here the princess cries for all that are lost.

Lorre’s oldest daughter Danielle was a type 1 diabetic.  She was diagnosed at the age of 12.  She was a frequent visitor to emergency rooms and pediatric ICU for years. The smallest infection, like an ingrown toenail could upset her blood sugar.  The doctors and nurses seemed to be rolling the dice when it came to treatment options. Many times Lorre’s daughter was in the hospital, finally stable, and they would bring her lunch.  Lorre would tell the nurse that her daughter needed insulin if she was going to eat.  The nurse would look at Lorre with a withering glare and the nurse would say that she knew better. Unfortunately, she did not. Lorre’s daughter would say, “Mom, I think my blood sugar is high.” She was right.  Lorre had to covertly bring insulin with her to the hospital and administer it against medical advice.

Once Danielle’s blood sugar was frighteningly off. Lorre took her to the emergency department at the local hospital.  They stabilized her overnight. Lorre sat with her daughter and held her hand.  The next morning the hospital decided to transfer her to the Pediatric ICU at a nearby facility.  They removed her IV. Lorre and Danielle waited an hour for the ambulance to arrive.  Lorre asked about insulin but was told they could not administer insulin in an ambulance without a nurse present. Lorre’s prior experience with insulin was intrabolus and it lasted for hours, so she thought everything would be fine.  What Lorre didn’t realize was that when insulin is administered in an IV the effect is immediate, but ends immediately when the IV is removed.  

By the time they arrived at the second hospital and were able to admit her to the ICU, Danielle’s blood sugar was off of the charts again and she was in kytoacidosis.  They started the IV and added insulin.  She didn’t respond.  They ordered new insulin from the pharmacy.  By this time she lost consciousness, her blood gasses were off, and her brain started to swell.  There were three physicians there, including an endochroinologist.  They said they had done everything they could and she wasn’t responding.  They didn’t think she was going to make it.  She did survive that event and became conscious 12 hours later.

Lorre and Danielle were able to spend many lovely years together. If you look at Lorre’s facebook page you will see Lorre with her two daughters at Christmas time.  Sadly, Danielle died almost ten years ago in a car accident.  It was never determined if her blood sugar levels were a contributing factor.  

Lorre’s grandmother was hospitalized three years ago. When Lorre arrived at the facility her grandmother was in tears.  Lorre’s diabetic grandmother had been taking hydrocodone for pain every 4 hours at home.  She also took 16 other medications and carried a complete list in her purse.  She had arrived in the emergency department nine hours prior and still had not been given any insulin or pain medication.  Lorre and her husband both worked in Healthcare IT. They immediately went to the charge nurse and didn’t leave her side until Lorre’s grandmother received her medication.  When they talked with the nurse afterward, she admitted the emergency system and the hospital EMR (Electronic Medical Record) system weren’t integrated or interfaced.  The nurses on the floor had no way of knowing what occurred in the emergency department until the notes were entered much later.

Two years ago Lorre’s youngest daughter Brianne was in a skiing accident and ended up in the hospital in La Jolla, CA. She was diagnosed with pneumonia one month later.  Her lung was 70% filled with fluid and she wasn’t responding to the treatment.  Lorre kept telling the pulmonologist about the accident and he dismissed it.  Finally, Lorre asked Brianne to show the doctor a picture of herself purple from her neck to her buttocks and with a fractured collarbone. The doctor said, “Oh My God, there must be tissue damage.” Due to this patient reported data and accompanying image, the treatment plan changed.  Brianne was in inpatient care for 16 days and recovered.

While Brianne was in the hospital in La Jolla, Lorre’s husband learned he needed a liver biopsy in Tucson.  Lorre returned home. Her husband’s biopsy revealed liver disease.  They gave him a 50% chance of surviving for 30 days. Lorre thought of all of the reasons they could beat the odds.  They had good insurance, the ability to pay for additional attention, willingness to do whatever it takes and he was relatively young.  Lorre’s husband was admitted into the hospital on July 2, 2012.  She was very shocked by how present she needed to be just to keep everyone involved in treatment on the same page.  There were teams of physicians, new nurses every couple of days, and a rotating group of aides.  The staff was consistently forgetting his medication or mixing it up.  Lorre had to be ever vigilant about what her husband needed, but also what they were doing or failing to do. 

The physicians ordered so many tests. Lorre believed that if they did everything they were told to do, they would get through it.  Her husband contracted C-diff and hospital acquired pneumonia.  He started to suffer from anxiety and became terrified at night.  Lorre slept at the hospital and only left to shower and change clothes.  They were in the hospital for 16 days straight, when a brave nurse took Lorre aside and told her she was fighting a lost battle.  The nurse told Lorre one more hospital-acquired disease would be more than her husband could stand. He was dying. Lorre took him home and he died two days later.

On July 3, 2013 Lorre’s father was diagnosed with stage 4-pancreatic cancer.  He also lived in Tucson. Lorre took responsibility for him.  Each time he was hospitalized (always at the same hospital using and electronic medical record system), Lorre had to go through the medication list several times until they could agree that it was correct. Regardless, many, many times Lorre received a call at 6am from the hospital pharmacy asking her to clarify the orders or provide them in their entirety.  It was maddening to think that all of his information was in the system and literally a week after the prior visit they had to start from the beginning again.  Lorre’s father died in November 2013.

That is Lorre’s story of pain. I placed dice throughout this piece. A single die is placed next to everyone Lorre lost.  Each die is either pressing Lorre down or separating her from the one she loves.

I am sure that everyone who reads this can empathize with Lorre’s pain, but for those of us who work in technology and love the science behind evidence based medicine; the frustration in this tale is acute.  Though life itself can be a gamble, the protocol in medical care should never be a roll of the dice.