The Tale of a Zebra (EDS) and POTS

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Wheelchair Series - Part 2

Why do you need to be fitted? Can’t you just order a wheelchair online?

  • Sure, I could order a generic chair online for a couple hundred dollars that isn't fitted to me - but it wouldn't function the same as on that is customized to my body. I already have a chair that will not work for me long term (but is so much better than not having a chair).

    • Because of the armrest angle and the height of the backrest, my arms rub when I push myself - I will not be able to go long distances before needing to be pushed by my wife.

    • The footrest stuck out an extra 18 inches beyond my chair (it made the chair feel super long, and I bumped into everything), so I removed it and put a rope sling - this sling will not last forever and is not flat - making my knees and ankles stick together.

  • There are several different measurements required - and I don't know how each one will impact how I feel in the chair. I cannot visualize it - I have to experience it. I need it to be explained to me by the experts that do this and let me try out different chair models.

  • This is going to be a big investment. I'm looking for an Ultralight rigid chair with some sort of power assist (either the wheels themselves or added underneath - so I'll still be pushing, but it will make my pushes go farther/longer). A quick google search shows the average cost of power assist is $3,000 to $8,000 (or MORE).

    • I'm not willing to make an investment like that without more information.

    • I don’t want to purchase secondhand, because you have no idea what shape the equipment is in and there’s no warranty.

    • Also, my insurance will cover it (…after I meet my deductible), so if I'm going to make this big investment, I might as well get a discount! You also cannot return a custom chair to most manufacturers without a hefty restocking fee (average of 10 to 20% restocking fee, if they do returns).

How do I schedule?

If you're looking to be fitted for a wheelchair, WOWZA it's a p-r-o-c-e-s-s! This is the path that I took - hopefully you can shortcut the process better than I did.

Scheduling - Here's how it went:

April 8th 2024 (Monday)

  • I reached out to my specialist via the MyChart app to see how I would go about getting a fitted for a custom wheelchair.

April 9th 2024 (Tuesday)

  • Provider's team quickly responded and said they had written the prescription that I could come and pick up

  • I wrote back asking where I would go for a wheelchair fitting

April 10th 2024 (Wednesday)

  • Provider's team provided the information for the Wheelchair Clinic I would need to attend to be fitted for/prescribing a wheelchair. They said the team would reach out to me for scheduling and also provided the number I could call.

  • I called the number provided - unfortunately, the clinic was closed. Their website had incorrect hours listed and it was closed at least 30 minutes prior to the listed time.

  • I called and spoke with my insurance to make sure this facility was In-Network. They said they would call the clinic the next day and asked permission to leave a detailed message if I was unable to answer. I said "Yes! Absolutely!"

April 11th 2024 (Thursday)

  • My insurance team called me back and confirmed the location and the DME (Durable Medical Equipment) company they use is also In-Network with my insurance.

    • Woo!! We're making progress, right?

  • I reached out to the clinic and found out their next Wheelchair Clinic is not until mid-June (roughly 2 months away). They only run their wheelchair every other month for 1 day.

    • Now, I'm back to square one.

  • I called my insurance back to confirm which locations were In-Network with my insurance and I already knew which DME provider was covered

  • I proceeded to call 5 different locations. I was transferred at least 4 times on each call to get to the right department

    • Main number --> physical therapy or sports medicine --> occupational therapy --> person that specializes in wheelchair fittings/appointments

    • 3 locations: after being transferred several times, went to voicemail

    • 2 locations: I spoke with the right people. Both clinics confirmed they had availability in early May.

      • I called the one wheelchair clinic back that I got a better vibe from (they were ready and willing to help and really seemed to know what they were doing) and they confirmed their fax number AND their DIRECT phone number (YESSSS! No more being transferred so many times!!).

  • I called my provider's office to have them fax over the information needed to schedule my appointment and gave them the clinic's direct information. They faxed the information over shortly after.

April 12th 2024 (Friday - Specialist Office is closed but Wheelchair location is Open)

  • I called the clinic to confirm if they received the information they requested - A referral to Physical Therapy and an order for A Wheelchair. They confirmed they received the order for the wheelchair but not the referral to physical therapy.

April 15th 2024 (Monday)

  • Things were super busy and I did not make the time to make phone calls.

April 16th 2024 (Tuesday)

  • I called the wheelchair clinic to confirm if they accepted my insurance - they do! I also requested them to confirm what documents are needed again.

April 19th 2024 (Friday - Specialist Office is closed but Wheelchair location is Open)

  • I called and spoke with the wheelchair clinic to confirm if they received my documentation to schedule. They stated they need a referral to Physical Rehabilitation  (NOT Physical Therapy).

  • I sent another message in the MyChart portal to my provider team because they are closed on Fridays.

April 22nd 2024 (Monday)

  • I called and spoke to the clinic. They confirmed receipt of the correct referral for Physical Rehabilitation and the Wheelchair Clinic. FINALLY, we were able to schedule. I am on the schedule for May 16th!

    • I have two separate appointments - The first states "Wheelchair PT New" and the second states "Wheelchair PT New"… and both are for the "Rehabilitation Medicine Clinic, Specialty Clinic". So I have zero clue what to expect. The only thing they said was that the entire appointment will take place in "the gym".

    • Should I wear sweatpants? Workout clothes? I'm going to do some research and see what I should expect.

The countdown is 23 days!

  • Timeframe from my initial question to the date appointment was made:

    • 14 Days

  • Timeframe from initial question to appointment date:

    • 38 Days

 TL;DR:

  • Check with your insurance provider for Wheelchair Clinic locations that are in-network with your insurance AND their approved DME suppliers

  • Check with the wheelchair clinic with exactly what verbiage is needed on the 2 referrals they'll need

  • Get the direct wheelchair clinic phone number and fax number