Life-changing second opinion stories: “I decided to get a second and third opinion…”

Posted January 3rd, 2018 by

Stories showing the importance of second opinions have been popping up in the media and on PatientsLikeMe. Check out the recent news headlines, hear a remarkable story of a PatientsLikeMe member who received a life-saving lung transplant after getting a second (and third) opinion, and share your own experience of piecing together your health puzzle.

Extraordinary second opinion stories

The Washington Post recently featured two powerful pieces related to second opinions — one about a man who got a second opinion at his mother’s urging (and received life-saving treatment for metastatic testicular cancer), and another about a woman who did not seek one and underwent unnecessary major surgery (removing her breasts and uterus). “I am damaged for the rest of my life,” the woman said.

PatientsLikeMe member Theresa (Pipersun) recently shared her “whirlwind experience” and remarkable second opinion story in the forum.

After two bouts of severe pneumonia earlier in 2017, a CT scan in June confirmed Theresa had a serious lung condition, idiopathic pulmonary fibrosis (IPF). While the diagnosis was correct, her doctors did not believe her condition was as advanced as she suspected.

“My pulmonologist was terrible,” she says. “He would not prescribe me oxygen, and would not sign a referral for pulmonary rehabilitation, stating it would do me no good, that if I had COPD he would. We talked about my life expectancy and lung transplant. He thought I had about 5 years, and I stated then how come I feel I am going to die in 3-5 months. He also made a derogatory statement, [he sat on the lung transplant review committee for the Northeast region] he stated ‘why would I put you on the list when there are so many children that need a lung.’ I responded that I didn’t think I was in the same [transplant candidate] group. But his attitude kick started my drive to find out as much as I could about organ donation regions, stats, etc.”

When her doctor denied an oxygen prescription, fellow members with IPF urged her to seek another opinion.

“I decided to get a second and third opinion,” she says. Consultations with two specialist groups in August – and her rapidly declining condition (which landed her on life support in September) – resulted in her receiving a lung transplant. “They admitted me to ICU and that’s the last I remember for 9 days,” she says. “I became conscious with a new set of lungs on Sept. 28.”

“I had to advocate for myself all the way and believe in what my body was telling me versus specialists in Oregon,” she says. “Even my GP thought I was in the early stages. If I would have listened to them, I would not be here/alive today. I am 57 years old, they said I have a new birthday, September 28.”

Pointers on second opinions

Steven Petrow, the writer who shared his second opinion success story in The Washington Post, offered some tidbits and tips for other patients in his Op/Ed piece:

  • 10 to 20 percent of all medical cases nationwide are misdiagnosed, affecting at least 12 million people, according to a Mayo Clinic researcher who has studied misdiagnoses
  • Don’t be talked out of a second opinion — doctors should support and encourage them (as PatientsLikeMe members have noted, “A good doctor will not be offended”)
  • “Be upfront and respectful with your doctor” — this can help ease the process of sharing records, and help you maintain a relationship if you stick with your original physician
  • Everyone has a right to a second opinion, and they’re usually covered by private insurance, Medicare or Medicaid (but check with your own insurance)
  • “Not all second opinions are created equal” — find a doctor who’s board-certified in their specialty and (ideally) affiliated with an academic medical center with a strong reputation (avoid only relying on recommendations from friends or a referral from your doctor, because there could be some bias)
  • Consider all your options, including online second opinion resources(Petrow mentions examples like Dana-Farber’s online oncology programCleveland Clinic’s MyConsult and SecondOpinionExpert)

More members chat about second opinions

On PatientsLikeMe, there are more than 4,000 mentions of second opinions in the forums (trend-spotting: you often encourage each other to seek them, as member Peggy recommended in her blog post about self-advocacy). Here are some of the communities that have talked the most about second opinions in the forums — join PatientsLikeMe to see what folks say:

  • Multiple sclerosis
  • Fibromyalgia
  • Mental health
  • Parkinson’s disease
  • ALS
  • Epilepsy
  • Cancer and lung cancer

What’s your second opinion story? Share it in the comments.

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“It just makes sense to give back”: How PatientsLikeMe employees volunteered their time this year

Posted December 28th, 2017 by

Volunteering is a big part of the culture at PatientsLikeMe. Inspired by PatientsLikeMe members, who have made our online community a place to find support and answers about health, we do our best to give something back to our local community, too. This year, many of our staff members pitched in and gave their time to organizations all over the greater Boston area. Here’s what we’ve been up to this year…

  • 50 PLMers (that’s what we like to call ourselves) volunteered during PatientsLikeMe’s service month in November
  • Those individuals volunteered a total of 260 hours
  • …and supported 18 different organizations in the greater Boston area

Check out some of the places we volunteered our time this year, and see these PLMers in action…

PatientsLikeMe staff members volunteer at Rosie’s Rosie’s Place

Rosie’s Place is a women’s shelter in Boston that was created to service poor and homeless women. They not only provide shelter, but also support 12,000 women a year with a wide range of services including housing and education.

Tori, Katie, Kim and Rebecca volunteer at Community Servings

Community Servings is a not-for-profit food and nutrition program whose mission is to provide services throughout Massachusetts to individuals and families living with critical and chronic illnesses. They provide home-delivered meals and nutrition services that are medically-tailored to the individuals receiving them, based on their condition. Right now, they deliver to 20 cities and towns across Massachusetts, and are beginning a pilot program in Rhode Island.

Jeremy, George, Jenni and Amber volunteer at Healthcare for the Homeless

Boston Healthcare for the Homeless program supports more than 12,000 homeless men, women and children, and provides access to comprehensive healthcare, from preventive dental care to cancer treatment.

Extending our mission from online to offline

Maria Lowe, Co-chair of the PatientsLikeMe Social and Volunteer Committee, helped organize and coordinate these volunteer efforts in 2017. “I think it’s so important to take time to think about how others around us might not have some of the things we take for granted,” she said. “To me, it just makes sense to give back in whatever ways that I can.” In fostering a culture of volunteerism at PatientsLikeMe, Maria says it fits with our core message. “We’re all about putting patients first and we have our “give something, get something” philosophy, so I think giving back to our local community however we can is just a natural extension of that.”

Here’s to another year of building stronger communities, together.

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