Diabetes buddies: Voices of experience and hope

Mary's diabetes story:

     I've been involved with the Outreach Program for JDRF (formerly known as the Juvenile Diabetes Research Foundation) for about 10 years.   A family lives near me in a MetroWest suburb of Mass. and I visited them with one of our Bags of Hope, a care package designed to encourage children and their adult caregivers, help ease the transition of a new diagnosis of type 1 diabetes, and introduce the family to JDRF.  You go to the home and bring the bag with you and meet the child who was just diagnosed, and their parents.  The bag has a lot of information about diabetes, Rufus the Bear with Diabetes, a blood glucose meter…

     This family had a son, Joe, who was six.  My son Nick was diagnosed with diabetes at age 8.  Nick, who was 12 then, was just there with me.  There wasn't a lot of connection right then, but the young boy later wrote Nick a thank you note.  It meant a lot for Nick to get that.  Nick had just gone onto an insulin pump at age 11 or 12, and Joe was interested in learning about the pump.  So Nick went to visit again and showed Joe his pump; that interaction fostered more of a connection between them.

     When Joe got older, he went to Camp Joslin (now part of the Barton Center for Diabetes Education), where Nick was a counselor.  Nick had been on his high school football team, which Joe, who was in middle school by then, was very interested in.  They had this history in common, so they talked, and Nick told him about hiding his glucose tablets in those tight football pants.  

     When Nick was in college, he met another boy in our town, Mike, who'd recently been diagnosed with diabetes, who was about the same age as Joe.  The mothers arranged for Joe and Mike to go out for lunch with Nick, to ask about drinking and drugs and whatever.  That happened several times.  So the buddying about diabetes rippled out from that.  

     I ran into Joe two weeks ago.  He's now a senior in high school.   Joe is interested in delivering Bags of Hope to newly diagnosed children and in becoming a diabetes mentor for JDRF and being that voice of experience.  It's all circled around.

     The boys' mothers saw Nick's mentoring as a source of support, encouragement, and chance to see an older boy who was doing well living with Type 1 Diabetes.  They both also mentioned that for them as mothers it was comforting and helpful to see an older boy negotiating through the teen years and college well.

     That circled around another way, too.  Joe's mother is a captain of a large Walk Team in Boston [for the annual Walk to Cure Diabetes, JDRF's biggest fund-raising event].  That all started from that first Bag of Hope delivery.  As people get more comfortable with the disease and how to manage it, they get more involved with JDRF and its fund-raising side.  Building engagement like that is a process that takes some time.  For some families, it’s immediate; for others it takes a year or two; with others, it doesn't happen at all.  

     Read another story about how buddies help others with diabetes, and see the JDRF's New England Chapter - Bay State Branch website.  Thanks to Lauren Shields of JDRF for arranging the interview with Mary.

Peer support for living with diabetes: She was my second brain

Part 1 of Jo Treitman's story:

I was diagnosed eight years ago, at the age of 14, with Type 1 diabetes.  I had a pretty easy time settling into life as a Type 1 diabetic in high school, as my parents were very helpful, and I was very responsible.  But in leaving for college, it was a really difficult transition.  My health definitely took a turn for the worse.  I didn't have any serious complications but I was definitely headed in that direction if I kept it up.

One of my main issues was that I wasn't remembering that I was a diabetic. Back in high school, I lived in my parents' house, where my being diabetic was normal. When I was with new friends who didn’t diabetes or know much about it, I'd eat the way they did, and do what they did. This obviously took a toll on my health.

The summer after my sophomore year, I decided to work as a counselor at a summer camp for children with diabetes.  There, diabetes was normal for the first time in my life and it was a really good feeling.  I made some great friends there and my numbers were fantastic since we all were taking insulin at meals, and checking our blood sugars all the time.  It was three weeks of paradise!

Unfortunately, when I went back to school, I just didn't keep it up. A couple years later, in my senior year, I was at a table with friends and I met Natalie, who was also Type 1.  We hit it off immediately, and asked each other about the food we ate, exercise, etc.  We both wanted to gain better control of our diabetes, and we decided to do it together, so we  become “diabesties”.  

We instantly started texting each other to get “back on course”.  Every time we checked our blood sugar, we'd text each other the result.  It didn’t matter what the number was because the more times you check, the more data you have and diabetes is one big, difficult, ever-changing math problem. That reminder, from a Type 1 diabetic, was pure support. My relationship was different with her than it had been with my parents because I couldn't get frustrated with her for calling me out on anything since she was diabetic too!  She was the one I'd call when I needed a second opinion, which happened a lot, as there's a lot to pay attention to and a lot to tinker with.  She was my second brain. It was nice to have two brains coming together on this, because my mind would always be spinning with questions like:  If I bike really hard, will my blood sugar go high or low?  If I have fries with ketchup, do I need to take more insulin?  We'd text each other about those things in addition to our blood sugar levels.

A few days after meeting Natalie, we connected with a classmate of mine, Sam, who was also diabetic.  Sam immediately joined in and the three of us texted constantly.  We'd wake up to text messages, and would eat a lot of meals together. We even began to notice trends in each other, since diabetes is different in different people. Certain foods may work for some and not for others. Even certain exercises may cause one person to have a low blood sugar and another person’s levels to rise. 

When your blood sugars are low, you feel shaky and really out of it.  Sometimes if I was studying late, and Natalie was around, she would bring me a juice box at 2 am.  Those lows are really annoying, so that meant a lot.  Having someone by your side who knows how it can be was pretty awesome.  

The three of us went about texting each other, and realized we wanted every single person living with diabetes we knew to know about this because it was so unbelievable, and we felt so much healthier.  I was with Sam and Natalie, sitting in a room, when we made the Facebook group Diabesties and invited every single person living with diabetes that we knew.

Read a story about support for diabetes in the e-book, Getting Your Best Health Care:  Real-World Stories for Patient Empowerment, and see the Diabesties Facebook group.  Thanks to Jo for the interview. 

They stopped me from saving her life: Patient partnership and E.R. treatment

Lee's story:
I live here in Arlington, Massachusetts. For several years I was dating a woman named Elizabeth. She was a Type 1 diabetic from when she was 12 years old. She hadn't taken good care with her insulin when she was young because she was angry and felt adults didn't understand her. Her mom was divorced several times during her childhood, and that added to what she rebelled against by eating sugar when she shouldn't. She also feared gaining weight if she took as much insulin as she should. Most type 1 diabetics became diabetics as children, and have inner psychological battles. There's a very private inner painful world – they could die if they don't do what they're supposed to do. Some kids rebel….

When I met her, Elizabeth's condition had advanced to the point where both of her kidneys had failed, and she had received a transplanted kidney from her mother. She had had five eye operations, and was legally blind in one eye. She had neuropathy [a nerve problem] in her feet and hands, and couldn't balance well. She was an adorable, absolutely lovely and loving person, the most amazing person I ever met.

Due to side-effects of the immunosuppressive drugs she was on to prevent rejection of her transplanted kidney, her vascular condition had degenerated to that of a typical 95-year old woman (though she was only 43). At the time of her kidney transplant, the immunosuppressive drugs used caused calcium to leach out of bones and deposit in the walls of her arteries, so she had atherosclerosis, and plaque deposits in her arteries.

During 2008 she had four minor strokes, and recovered completely from each. She also developed arterial spasm events in her brain which could give stroke-like symptoms. She'd have to go the E.R. when a brain artery spasm happened, and the spasm could be immediately relieved with Compazine.

On New Year's Eve Day last year, she called me at 6 am in the middle of one of these brain arterial spasms; I rushed to her house and drove her to the E.R.

She had been through the same situation in that E.R. four or five times before, so it was all in her records what needed to be done, including a letter with specific directions from her stroke specialist; all they had to do was give her a short I.V. [intravenous, i.e., into the vein] of Compazine. But the E.R. doctor decided to review her whole case first. So she continued retching, and her retching caused a cerebral hemorrhage. Because of the cerebral hemorrhage she was taken off Plavix in the ICU [intensive care unit]. Before she completed her recovery from the hemorrhage in the ICU, she had a severe stroke – because she'd been taken off the Plavix - and she died.

During the whole time in the E.R., I was telling the nurse, "You need to give her the Compazine! Here's a letter about that from the stroke [physician] specialist!" I asked the nurse, "Can't you just give the IV?" She said, Not without a doctor's order. The letter from the stroke specialist wasn't good enough.

So she didn't get the Compazine in time. That review by the E.R. doctor effectively killed her – because of the time he spent on it.

I knew more about her condition, much more, than the E.R. doctor because I'd read hundreds of pages of information about it. The nurse asked him to come into the room and talk to me, but he did not come in until after her hemorrhage, and by then it was too late.. Doctors assume that someone who's not an M.D. is an idiot; it's not the case. Sometimes we are better educated about a condition than the doctor.

With the computer system at that hospital, there's no way for a standing order to be placed in the system to dictate what to do during an E.R. visit with a particular problem. So someone with a recurring condition (as most stroke patients have), cannot take advantage of their stroke specialist's prior knowledge of what has to be done.

I've called every major vendor of healthcare software in the U.S. No system has a feature allowing it to hold a standing order for the E.R. If such a feature existed, Elizabeth would be alive.

Back up four months: When we learned first about the brain arterial spasm problem that Elizabeth had, and how critically she'd need Compazine, I asked if I could have a vial of Compazine and a syringe to use in an emergency. Their answer: the standard dose is by I.V. and not syringe injection. Our policy is that we don't allow people to have Compazine at home. I had specifically tried to be responsible in a way to save her life, and they stopped me, like they did later in the E.R. too.

I'd tried to save her another way, too. When we were in the car on the way to the E.R., I called ahead, and asked them to please get the Compazine ready. They answered, "No, you’re not an ambulance."

I don't want to pursue a legal case unless that is necessary to change their system. Not every doctor will be good; the guy that was on duty in the E.R. was horrible. I want a capability so a person can prevent damage from the stupidity of an inadequate doctor by acting ahead of time.

This business of preventing people who are highly responsible for their health from helping themselves and the ones they love is insane!

The hospital wouldn't let us have a Compazine for an emergency they knew would predictably occur. What do you mean, she can't have a syringe?! She gave herself insulin about four times a day!

I could be trained. I'm a very competent person. I taught at MIT and I designed medical equipment for years at Hewlett Packard. If I'd known a spasm could kill her, I'd have done whatever it took to have that Compazine at home. If I had to, I would have stolen the stuff.

Lee's Advice: If you or someone you love has a recurring condition that needs to be treated at the E.R., write a letter to the hospital urging them to put in place a standing order at the E.R. for how to treat your condition. Urge them also to put in place a policy of preparing for your arrival based on a phone call from you. If there is a treatment you should be trained to give at home, push to be trained to administer that treatment.

Please feel free to send a copy of this along with your request, and please let the writer of this blog know what response you get.


Thanks to Lee Weinstein for sharing Elizabeth's story.

Read about a near-miss in matching a patient’s home medications with hospital medications [“medication reconciliation”].

Don't tell my wife: Stretching prescriptions

Martin Schwarzenberger, a 56-year-old accounting manager for the Boys and Girls Clubs of Greater Kansas City, s stretching out his prescriptions. Martin, who has Type 1 diabetes, is not cutting his insulin, but has started scrimping on a variety of other medications he takes, including Lipitor.

"Don't tell my wife, but if I have 30 days worth of pills, I'll usually try to stretch those out to 35 or 40 days," he said. “You're trying to keep a house over your head and use your money to pay all your bills."

Advice: Ask your doctor which of your prescriptions you can stretch with the least harm.

Read another story of access to care.

Thanks to Stephanie Saul for the source article in the Oct. 22 issue of the New York Times.