When Your Doctor Can’t Help You

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When Your Doctor Can’t Help You

When Your Doctor Can’t Help You.

Been there done that. More than once.

When you seek medical attention with your local doctors and they can’t figure out what’s wrong or how to help you – this is often the case for many people seeking answers and resolution for their health issues.

  • Part 1: Why Can Your Doctor Not Help You?
  • Part 2: Higher Level Care
  • Part 3: Making the Most of Traveling for Medical Care
  • Part 4: Medical Travel Financial Assistance Resources

When you have mysterious symptoms or a serious, chronic, or rare disease, you often must travel to higher level specialists and university/research medical centers or specialized clinics.

I’ve flown out of state twice for medical care. I continue to drive five hours round-trip for my higher level care.

Part 1: Why?

Most local doctors, specialists included, do not usually have expertise in complicated, hard to diagnose, or rare disorders. Not every disease is covered in medical school.

Part 2: Higher Level Care 

As an example, the chronic illness that I have, vasculitis, is most often treated by a team of specialists, as it is systemic, affecting many different organs. At the helm of the team is usually a rheumatologist, but not all rheumatologists specialize in or have any experience treating vasculitis.

Among specialists in every field, only a percentage have expertise in certain complicated and rare disorders. I call them higher-level specialists. They provide my higher level care. They studied certain conditions/diseases/disorders in addition to their specialized MD requirements.

Most rheumatologists specialize in arthritis. But higher level rheumatologists specialize in various systemic rare diseases as well.

Higher level specialists are often professors. In order to receive the care we require, we often have to travel to the university medical centers or specialized clinics where they research, teach, and practice.

Local doctors will sometimes team up and consult with your higher-level specialists regarding your care. It’s wonderful when your local doctor joins your medical team to monitor your health between your distance appointments!

But in the beginning – for diagnosis and treatment – and during flares, we often must travel to the facilities and higher-level specialists who can effectively help us get better.

If you are undiagnosed and your local doctors are unable to diagnose or help you, go to the nearest university/research medical center.

Google the higher level/university/research medical centers and/or specialized clinics in your state, or closest to you. But keep Cleveland Clinic in mind. More on Cleveland Clinic below.

Part 3: Making the Most of Traveling for Medical Care: The silver lining!

When you have to travel to appointments and your health allows, take advantage of what the area has to offer, especially if children are involved: parks, beaches, museums, ethnic/specialty restaurants, specialty shops, etcetera.

I often had to take my kids out of school for my distance appointments and always turned it into an adventure or field trip!

A few tips for traveling with children 

For those long distance trips with children, entertainment in the car or on a flight, and in waiting rooms, is a great way to optimize happy travels -for all- and with today’s electronics, it’s easy. But there’s also the old fashioned travel games such as magnetic chess and checkers and age appropriate toys. And Books! Each child with their own backpack full of entertainment, snacks and water bottles helps with those long trips. Don’t forget pillows.

When I went to Mayo Clinic in Arizona, we did a road trip between appointments! I had appointments the end of one week and beginning of the next week so over the weekend, we had three days to kill, we rented a car and saw the Grand Canyon and other fabulous sites and experienced some of the local culture and history that area has to offer! We packed a lot into those three days! We even surprised our boys with a Diamondbacks-Yankees Game!

And if you find yourself at the Cleveland Clinic – which I highly recommend if other doctors and medical facilities fall short, no matter where you live, go there. People from all over the world arrive there everyday to get the help they can’t get anywhere else. I was one of them. Go in though the ER/ED if you need to.

When you get out, take in the Rock and Roll Hall of Fame, and treat yourself to some Buckeye Balls! Ohio has its own state candy! And they’re wonderful! They might carry them in the Cleveland Clinic Gift Shop by now, on my request! And If you have time, Niagara Falls is roughly 3 1/2 hours away! Go! Schedule an extra day! Check it off your bucket list! If it’s out of the question, take in the zoo or the R&R Hall of Fame and Malley’s for some wonderful buckeye balls! The R&R Hall of Fame is great and they sell discount tickets at the Cleveland Clinic! Or take in a game: Indians, Browns, Cavaliers!

Or take advantage of the free stuff like parks, museums, or other venues unavailable near home! Google what’s available.

One of the coolest free venues we ever did were ghost towns! Fun, interesting, and very cool, for all ages.

Bonus: travel is scientifically proven improve your health! And it’s enlightening and educational which is silver lining especially for children. Watch for more on the health benefits of travel in a future blog post.

Part 4: Medical Travel Financial Assistance Resources

  • Some insurance providers cover gas expenses or shuttles for distance appointments, but they don’t tell you, call and ask! 
  • For free/discounted medical flights:
  • Air Charity Network @ aircharitynetwork.org
  • National Patient Travel Center @ patienttravel.org
  • If you’re hospitalized and need to be transferred to a specialty clinic, Cleveland Clinic provides global transport. They have their own fleet of medical transport aircrafts. Your insurance may cover it. Contact the Cleveland Clinic Medical Transport Department.
  • Transfers from local hospitals to upper level hospitals in your own state are often covered by insurance. But if not, contact the National Patient Travel Center, above, or google for resources outside the US.
  • Go Fund Me is another resource.

Get the care you need. You may have to travel. But you deserve proper medical care ♥️

Author: cconlowolsen

I’m a mom with a background in nutrition, teaching, child and human development, photography, health, travel, outdoors, animal rescue, mentoring, business ownership, cooking, navigating traditional health care and alternative health care, writing, and more. I have a chronic illness I’ve been managing for decades while raising a family, homeschooling my kids and enjoying life to the fullest. I want to share my experiences both good and bad, to help others!

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