2 posts tagged “empowered patient”

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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PatientsLikeMe Teams Up With The National Kidney Foundation Serving New England

Posted May 11th, 2010 by

We are proud to announce a new partnership between PatientsLikeMe and the National Kidney Foundation serving New England.  In the beginning stages of developing the PatientsLikeMe Transplant Community, we worked together with the National Kidney Foundation serving New England to give interested patients an opportunity to share their transplant journey and help shape this new community.  During this beta phase of the community development, kidney recipients alongside lung, heart and liver transplant recipients,  became incredibly engaged and were excited to share their experiences.  Thanks to all those patients who stepped up from the start, as well as those who have since joined our site!  With more than 1,300 members (to date), the Transplants Community is creating new knowledge about patients’ real-world transplantation journeys.  A special thanks also goes out to the National Kidney Foundation serving New England for partnering with us early on to spread the word.

Through this exciting partnership, we will continue to work with the National Kidney Foundation serving New England to find ways for everyone to “give back.”  PatientsLikeMe will be giving back through its PatientsLikeMeInMotionTM program designed to support members participating in offline fundraiser events.  Similarly, we will be joining forces (as an official t-shirt sponsor) with the “Team Mid New England” at the 2010 U.S. Transplant Games to help raise awareness of organ transplantation.  Stay tuned for more details to come.

To kick off the partnership, Molly Cotter (who manages nonprofit development at PatientsLikeMe) sat down with Andrea Savisky, President of the National Kidney Foundation serving New England, to ask a few more questions about their organization, their upcoming events and our partnership.

– – –

2271 (Molly) What is the mission/goal of the National Kidney Foundation?
me-on-bday (Andrea) The National Kidney Foundation, Inc. (NKF) is a voluntary health agency dedicated to preventing kidney diseases, improving the health and well-being of individuals and families affected by these diseases, and increasing the availability of all organs for transplantation. 2010 marks the Foundation’s 60th anniversary, and it’s 20th year as organizer of the U.S. Transplant Games.
2271 (Molly) PatientsLikeMe is proud to be official t‑shirt sponsor for “Team Mid New England” at the 2010 U.S. Transplant Games in Madison, Wisconsin.  How and why do patients get involved? Can any organ transplant patients get involved?
me-on-bday (Andrea) The National Kidney Foundation U.S. Transplant Games® is a national, Olympic-style competition presented every two years. More than just a sporting event, the Games unite thousands of people from across the country, who have been touched by organ donation and transplantation, and offer social and support programs for recipients, donor families and living donors.  As the single largest event promoting organ, eye and tissue donation, the Games serve to foster the health and fitness of its participants, while showcasing the success of transplantation, highlighting the vital need for more organ and tissue donors, and honoring donors and donor families. To receive information on Team Mid New England, email me.Competitive events are open to ALL recipients of life-supporting transplants, as well as to living donors, who are eligible to compete in selected events in their own division.
2271 (Molly) Your 2010 Boston Kidney walk is this upcoming weekend (May 16, 2010).  What is that event all about and how has National Kidney Foundation used those funds raised to help patients?
me-on-bday (Andrea) The National Kidney Foundation’s Kidney Walk is a non-competitive walk focusing on education and prevention of kidney and urinary tract diseases, and awareness of the need for organ donation. The Kidney Walk presents an occasion for dialysis patients, organ transplant recipients, donor families, living donors, the medical and business communities, and the general public to celebrate life and create lasting community advocacy and long-term support for the Foundation’s mission.While raising funds for the National Kidney Foundation’s programs and services, the Kidney Walk provides an opportunity for family, friends and colleagues to participate in an inspiring, community-based event.  To register for the Boston Walk, create a team or to make an online donation and support the mission of the NKF visit our website.

(Note:  If you’re a member of PatientsLikeMe participating in this year’s event, check out how to be sponsored through the PatientsLikeMeInMotionTM program)

2271 (Molly) Some of your U.S. Transplant Games team members were the first to join our Transplants Community (launched in March 2010).   Why were you so willing to work with us to spread the word about this new community?

me-on-bday (Andrea) Transplantation can allow people to live healthy and happy lives. While it is true that some important problems are behind clients once they are transplanted, many new challenges will arise. To stay healthy, one has to adapt and pay attention to the various changes to their health, while planning for and responding to them accordingly.Although the NKF’s “People Like Us” movement brings together transplant recipients, living donors, potential donors, people with chronic kidney disease, donor families and caregivers to be empowered, educated and encouraged to be their own best advocate, we felt that PatientsLikeMe aligned with our vision and empowered patients to take an active role in their health and helping others who are traveling along the same path.
2271 Thanks Andrea.  We’re looking forward to working with the National Kidney Foundation serving New England to help patients share their experiences with their transplant journeys and have a voice in advancing research.