3 posts tagged “self-advocate”

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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How to be your best health advocate

Posted October 3rd, 2017 by

PatientsLikeMe is pleased to announce a new collaboration with Cathy Chester, a wife, mother, advocate and the voice behind her blog, “An Empowered Spirit: Living a Healthy and Vibrant Life After 50.” You might’ve already seen Cathy’s #MoreThan story about her diagnosis and how she’s much more than MS. Here, Cathy dives into the importance of being your own best health advocate and how you can take charge of your health.

Self-advocacy has become a critical part of the doctor-patient relationship. It’s no longer enough for patients to relate their symptoms to their physicians and accept the response. Patients need to ask questions; they must act like detectives solving a mystery in order to find the answers they’re looking for. If you can’t find the answer you need quickly, you may end up shuttling between specialists and wondering if the professionals will ever figure out what ails you.

For example, let’s say you’re experiencing digestive issues. You start with your internist and undergo testing, but it’s inconclusive. Your doctor refers you to a gastroenterologist who performs invasive tests that produce a diagnosis. A medication is prescribed and you feel better in a few days. Weeks later your digestive issues return. Again, you call the gastroenterologist who suggests more invasive tests, or perhaps refers you to another specialist. You wonder if there are natural or holistic options because you’re hesitant about taking more prescription drugs.

What do you do? Will traditional medicine cure you? Is complementary medicine safe and reliable? Which websites provide credible information? Which doctor is trustworthy?

For me, there was nothing more important than seizing control of my health. It was a priority I couldn’t ignore. Being involved in the decision-making process can reap numerous benefits.

No one knows your body better than you, and no one has more at stake.

Here are a few steps you can take to become your own best health advocate:

Listen to your instincts – Your body is brilliant and gives you clear messages when something is wrong. Make an appointment to see a doctor if you feel something is awry.

Lists – Create a list of your health issues. Include how long you’ve been experiencing the problem, the severity of it, and list any questions you’d like to ask the doctor. Having a list to lean on is both necessary and important.

Research – Medical websites are great resources, but not all sites are reliable. Trustworthy sites should cite an article’s author and the medical credentials for the preparer or reviewer. (Examples of authoritative sites are American Cancer Society, Centers for Disease Control and Prevention, familydoctor.org, HealthyWomen.org, WomenHeart.org, National Institute on Aging, American Diabetes Association, American Stroke Association, National Center for Complementary and Integrative Health, National Multiple Sclerosis Society, National Institutes of Health, PubMed/National Library of Medicine, Mayo Clinic, Medlineplus, and healthfinder.gov.)

Use your voice – Speak up for yourself and insist doctors answer all of your questions. Make sure you give them thorough information and that they are listening. If you’re unhappy with your medical team find another one. Do not allow yourself to be rushed.

Understand how your health insurance plan works.

Review your medical bill for errors. Ask for an explanation if there’s an entry you don’t understand.

Get a second opinion when necessary. Ask for referrals from your doctor or people you trust.

Maintain your own health records. Learn from others who have experienced similar health issues. This can help you emotionally and provides you with the confidence to find what works for you.

Be persistent – If your doctor doesn’t return your call, call again. Insist on getting the answers you need.

Be organized – Never leave an office visit without a follow-up appointment or referrals and labs in hand. Use a written or computerized calendar to keep on top of your schedule. Take advantage of phone apps to keep you organized.

Get answers – If a doctor isn’t providing you with the answers you need find another one. Keep searching until you find what you need. Always keep your eye on the prize of wellness.

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