A patient advocate: This is her partner

Dr. Suzanne Koven's story:

     For many years I've provided primary care for two women in their 70s who have lived together for decades.  Perhaps because of the era in which they came of age, they'd never identified themselves to me as a couple, though it seemed clear that they were.  They finished each other's sentences, took notes at each other's medical visits, and, when I called to discuss one of their test results, both got on the phone.

     I sometimes wonder whether I should have encouraged them to be more open with me about the nature of their relationship, but I sensed this was not what they wanted. I'm still not sure I was right.

     Once, one of the women became critically ill and required months of hospitalization outside of Boston.  The other was at her bedside all day, every day.  The doctor on the case called periodically to update me - progress was at times discouraging - and her companion also phoned regularly.  She always left messages that began by identifying herself as the patient's "roommate" or 'friend."  

     Eventually, because of excellent medical care and, no doubt, the "friend's" loving attentiveness, the patient recovered and was able to return home.  When I got the call with this news, the message was slightly different:  "This is her partner...", it began.

     A small word, a subtle shift, and yet I couldn't help but read volumes into it.  I imagined the woman, after months by her partner's side, after decades of denying their relationship, finally saying to herself, "Dammit, I've earned the right."

     Of course I don't know for sure if that's what she said to herself.  But I do know this:  I received dozens of phone messages every week, thousands very year - and I can't remember one that moved me more.

     Read another story about the healing power of love in a glamorous younger couple.  Thanks to Dr. Koven for this story, reprinted from today's G section of the Boston Globe.

Out of the closet: Second opinions on Radiology tests

Dr. Greg Goldstein's story:

One of my patients, a relatively young woman I'll call Lauren, had had pain in her calf, with swelling, so she went to the Emergency Room to get an ultrasound.  They told her they saw a clot in the scan, so she'd need a few days of hospitalization, to be on blood thinners ["anti-coagulants"].  That treatment isn't benign, as there's a risk of bleeding as a side effect.  She called me and asked me to look at the ultrasound.  I looked, and didn't see a clot, so I suggested she have another ultrasound to confirm it.  She went to a vascular surgeon, who repeated the ultrasound, and also found nothing there.  She could've been put on Warfarin for a period of time, maybe indefinitely, so we prevented that.  That was good for her, and was also good from a public health perspective, as the money for the unneeded anti-coagulant drug was saved.

As my own Radiology practice grew, I learned about the importance of communication between the primary care doctor and the radiologist, and providing a high level of service.  I thought, Why shouldn't radiologists talk to patients?  Why be only behind the scenes, when we're in a unique position seeing doctors and patients from all specialties?  We're coming out of the closet.  That's important because patients are getting very frustrated, saying, "My doctor didn't have time to go over the film with me, and didn't explain things clearly enough to me."  

Coming up with a medical diagnosis is like putting a complicated puzzle together.  The radiology exams are a critical piece of that puzzle - its "centerpiece."  The radiologist's unique perspective puts them in the valuable position of knowing about each specialty and can therefore help patients navigate the health care "web'."

See another story of a falsely positive scan, and see Dr. Goldstein's MetisMD website.

Thanks to Dr. Goldstein for the interview.

Recovering from facial disfigurement: We inspire them

Lesia Cartelli’s story:

     A girl from Colorado, I’ll call her Sarah, was in a car, hit by a drunk driver at age 13.  Her father and her twin sister, sitting next to her, were killed in the accident.  She had incredible facial trauma, with one side of her face paralyzed, so that only half her face could smile.  She spent a week with us at Angel Faces, and we helped her with a lot of role playing on staring and teasing, art therapy, and goal setting.  She went back and started speaking to all the drunk driving classes.  She was 15 at the time, and had aligned with really good, strong people, so she was able to take her trauma and make a real difference.  Now she has just graduated from high school.  For her, it wasn’t just about having her face disfigured by trauma, as she has lost her father and sister.  But she stopped being buried in grief.  

     Sarah told us all about this at Through Your Voice, which is one of the programs within Angel Faces.  Girls come back here and do a presentation about what they’ve done with their trauma to try to change their world.  The girls take their trauma and make something beautiful out of it.  So we can say to the others after a horrible accident, What are you going to do about it?  

     At Angel Faces, we’re in our tenth year.  I don’t have children of my own, but I have 200 teenage girls.  We create a community here, so the girls mentor younger girls.  They go through our program, then go out and live for a couple of years, go to college, get their feet into the real world, embrace their hard knocks, and then they can volunteer as a part of our team.

     I started Angel Faces after my accident.  I was burned as a child in a natural gas explosion.  After the hospital, where you’re in this loving womb of treatment, to go into the real world, with such grief, scarring, and trauma, and then, maybe you only get to see a therapist for 45 minutes a week, it’s really not enough!  I’d been at a camp for burn-injured children, which, I realized, was failing to address the true needs the children had, to get them through their injury with knowledge and grace, not just to entertain them with camp-like games.  

     I saw that if I got the girls in a healing setting, and gave them a path to express themselves and learn about their trauma, that was what was needed.  They start to put together their story to help people, and help girls just released from the hospital, who think “my life is over.”  We inspire them; they realize all is not lost; they can be a teacher to so many.

See the Angel Faces website.  Thanks to Lesia for the interview, and to Rick Stevens of Ascot Media Group for connecting us. 

Read Chapter 11, "Living for Others," for other patient advocate heroes in Ken Farbstein's book, Getting Your Best Health Care:  Real-World Stories for Patient Empowerment [e-book is available here].

An Actos Experience: He wants his pound of flesh back

Terrence Allen is a midde-aged warehouse worker in Attica, New York, who took Actos for his diabetes.   He developed bladder cancer after taking Actos for five years.  “If somebody had told me I could get cancer from Actos, I never would have taken it,” he told Bloomberg News. “There were other products out there that could have helped treat my diabetes without putting me through all of this.”

He said in December that he has had two surgeries to remove cancerous tissue from his bladder and may be facing another after the Christmas holiday.

“To some degree, I would like my pound of flesh from the company,” he said.

Doctors often prescribe Actos to type 2 diabetes patients who need to manage their blood sugar. For that distinct task, Actos does what it is supposed to do.  But for long-term users, the drug can cause extreme and serious side effects to develop — including the potential development of bladder cancer and heart attack.

More than 10 million people have taken Actos for help with their diabetes, but there is no such thing as a typical user of Actos. That's because drugs affect people in different ways, and few people have the same medical experience.

For some Actos users, the early symptoms of bladder cancer may go unnoticed. One side effect of Actos that can indicate a more serious problem is an increased need to urinate. But that symptom, as we know, also comes just from living. It comes along with aging.  

Many times, Actos patients do not associate the taking of their diabetes drug with having to go to the bathroom more often.  They WILL take notice, though, if/when they experience pain during urination or see blood in their urine. That's when most people know that it's time to call the doctor and find out what's really going on.  (And the sooner the better. Once bladder cancer has progressed to stage 3, there is only a 50% chance of recovery.)  Once patients experience one of these symptoms, they should make an appointment with their primary care physician — often the doctor that originally prescribed the medication — for a complete medical history.  From there, the doctor can give a referral to see a urologist for tests.    

The most common theme among people who have serious Actos side effects is surprise. How, they ask, is a drug that is supposed to help me live with diabetes giving me cancer?  Shock and anger are common emotions when people learn that their cancer could have been caused by a medication that their trusted physician prescribed to them — often years earlier.

Some patients begin taking Actos, hear about its serious risks, quickly contact their physician to change medication and save themselves from future problems.  Many patients, however, only hear about the risks of Actos years later, after they have been diagnosed with bladder cancer.

About 10,000 patients are expected to sue Actos' manufacturer.   

Read a bladder cancer survivor's story, and see the extensive DrugWatch website.  

This was written by Alanna Ritchie, a writer for Drugwatch.com. An English major, she is an accomplished technical and creative writer. Thanks to Alanna and John LaGrace for this story.  Some quotations were reported by TheSandersFirm.com and Bloomberg News.