Wheelchair Series - Part 4 - Seating Clinic Disappointment
Today was my wheelchair fitting appointment and also my yearly visit with my amazing specialist. Before you go any further, it's been a crazy day and I'm having a POTS flare now (high heart rate and lowest BP I've had in a long time)… so please go easy on my writing tonight.
Here's how today went: (Buckle up! It’s a long one)
7:00am
Wake up and get out of bed, pay bills (because it's payday)
7:30am
Realize that I completely forgot to feed the animals and they're GLARING at me and yelling to be fed. Feed them and begin panicking about the time. I wanted to have left already. And I also need to take my meds. Done!
7:45am
Drop my dog off with our friend so she can play with his doggo while I'm gone. Super thankful he offered last minute (because I completely spaced about the fact I'm a dog mom and she would need watching while I'm at my appointments).
8:00am
Get in the car and realize I'm 20 minutes behind my intended departure time… and I'll barely be on time for my appointment. There's no way I have time/energy to pack my wheelchair in the car and make it to my appointment on time
8:42am
I'm three minutes early to the parking garage but now I have to find the right building. And I realized I parked in the wrong parking structure. The tachycardia begins and something feels off today. Keep trucking along.
8:52am
Arrive at the check-in desk…after realizing I could have taken a much shorter route. They tell me I have to go down a long hallway and have my vitals taken… and then come back
9:03am
Back at the original desk - checking in for the second time. Oh, my vitals this morning: Heart Rate 96 & BP 107/71. Not terrible, but not feeling great
By 9:15am (this is supposed to be a 2 hour appointment, followed by another appointment)
I'm back with the provider and the DME Rep.
Provider asks me what I'm hoping for in a chair. I'm honest and tell her that I'm looking to be able to function outside of my home. Things that require endurance/long periods of standing/walking - concerts, festivals, all the fun summer stuff that happens in the Milwaukee area. She kindly tells me that insurance will only cover a chair for use within my home. They will deny a claim for a chair for use that I'm looking for.
We dig a little deeper into what my needs would be at home - I can tell it isn't enough. She tells me basically that we can try to submit a claim (she's willing) but it will most likely be denied by insurance because they'll only cover it if I'm basically bedbound at home. Welp, that isn't what I need.
She offers me resources for secondhand chairs that I've already been searching for a couple months now. I ask for my measurements so I know what I'm looking for in a used chair at least.
The DME guy takes a few measurements and emails them to me by the end of the appointment (and gives me his card that has a 5% off coupon for SpinLife.com).
I mentioned wanting some sort of power assist (they told me insurance will not cover it unless you've been using a manual wheelchair for at least a year) so they let me try out the different options.
Two different types of add-on power assists (smoov and smart drive) and One with smart wheels (navione).
I love the Navione wheels, but WOW are they heavy when they're dead. One wheel wasn't charged and the other one was, so that made it difficult to try.
The two power assist options (smoov and smartdrive) work pretty similiarly to a fully powered chair.
It isn't what I'm looking for, you basically just steer. I just want an extra boost while I'm pushing but those Navione wheels are roughly 15 pounds each. So if I don't want this assist on, that's a lot of extra weight.
9:58am
I have found my way back to my car (after a really confusing elevator ride to find the ground floor of the parking garage - the ground floor isn't "1" … it's "LL") and I text my wife about my disappointment and how crappy my insurance is. She's supportive and says that we can beef up my current chair and continue to search (even in neighboring states) for another chair that's the right size. She continues to ask if I'm okay and I let her know I'm bummed, but I'm alright - that I'd rather be disappointed now, than get measured and excited for a chair and wait several months to be let down. At least I can game plan and figure out my next steps.
11:04am
Arrived home and picked up my pup from our friend.
Began furiously searching online for used chairs that are more fitted to the size I've been measured for. No luck on Facebook marketplace, Katy's Kloset (local lending closet for medical equipment), or Craigslist.
Went to SpinLife to mock up a chair, just to figure out what the actual cost might be (base model Ki Mobility Rogue ALX - without wheels is normally $2204 but as of today, is on sale for $1,543).
After adding wheels, the type of footrest I want, brakes, etc - total is $2,916.
I'm not a 100% on all of the terminology used on the website and all their image descriptions say "coming soon" so I called their customer service number. I spoke with a friendly lady that said they have a team of experts that can do my measurements over the phone! They transfer me, I'm on hold and realize the time. I've gotta get moving to my next appointment!
12:35pm
Drop my pup off with our friend for her second play date of the day!
Get to my car and make my way to my appointment
12:55pm
Check in at the desk for my appointment. Still not feeling great (random hot flashes and heart palpitations from tachycardia. At 36 years old, I'm beginning to wonder if it's a POTS flare… or if it's perimenopause).
1:20pm (ish)
Taken back to a patient room
Orthostats taken after laying down for a bit
My BP is running way lower than what it normally does on my adderall. Most of my readings within the 10 minute timeframe are close to 98/62. That's my normal on days I haven't taken any medication. Usually, on medication, it's at 110/65.
My specialist is absolutely amazing! And incredibly thorough.
We talked about other options for meds and land on stopping the adderall and trying out Strattera.
It's still an ADHD medication but is also known to help with orthostatic hypotension and brain fog.
We're starting at low dosage 18mg capsules. We'll see how this goes (hopefully well!) and potentially either increase the dosage, discontinue, or go back to adderall if it's ineffective.
We're also going to try florinef again, but not yet. But before I can start it, we need to have my blood drawn to check my Potassium level (there's a known risk for it reducing potassium).
Backstory: The first time I tried it was when I was initially diagnosed (about a decade ago) but the cardiologist had also put me on a betablocker (my specialist was absolutely BAFFLED that the cardiologist (that diagnosed me) put me on that with how low my heartrate and blood pressure can drop). I was on the combination of the beta blocker and florinef for about a month, until I started throwing up within an hour of taking them. So we very quickly stopped both when we realized how low my BP was getting (and causing me to get sick).
We also talked about the possibility of trying to get insurance to cover an infusion of Erythopoietin (Procrit) to help increase my blood pressure. Again, we won't do this one yet. We're going to implement 1 thing at a time and see how it goes.
We talked about a whole host of things from the letter I got from Patch Adams and the free hospital I hope to one day build to how crazy my labs have been in the past, and at one point she said "you probably know more about dysautonomia than half the clinicians here."
If you want to read more about common medications for Dysautonomia or more about Dysautonomia in general, I strongly suggest you pick up a copy of "The Dysautonomia Project". Link (HERE)
It was wonderful feeling truly understood by a provider and being able to work as a team to come up with new treatment options. I'm incredibly lucky to have her in my corner and to have a Dysautonomia clinic this close to home.
2:47pm
Leave my specialist's office and head to the pharmacy to pick up my medications
The pharmacy was nice and let me know my insurance wasn't helping much and they ran them through GoodRX (if you aren't already doing this, it's FREE - highly recommend to check any medication you're on with their coverage).
3:30pm
Arrive home after picking up my pup from her playdate
I call SpinLife back to be measured over the phone
I'm transferred to a long hold that allows for a callback - I select that option and wait for a call
I speak to a man and tell him what I'm looking for - he says he can't do measurements over the phone and the best way is to use the measurements from my current chair as a guideline. That if I can get the serial number on it, it'll have all of the measurements listed on the Ki Mobility website. I let him know I have the seat width, depth measurements from my seating appointment from today and a few others. He says we should be able to walk through the order form together if I'd like to. I said Yes! I'd love a quote so I can talk it over with my wife.
We go through the entire order form together and he explains the things that I was unsure of (there are a LOT of measurements/placements/etc that are very unclear what they're talking about). I didn't want to place an order for a couple thousand dollars on something I'm unable to return if I got it wrong on my own.
He sends me the quote afterwards.
When my wife got home, we looked at my chair together and managed to find the serial number. If you want to check it out, you can look mine up here (LINK) with this serial number (RG010644) so you can see what I'm talking about.
I made some minor adjustments to the quoted order I received earlier - now that I had working measurements that I could tweak (ever so slightly). I was worried about the seat height being too high with the cushion I added, and it was off by at least an inch or two compared to the current setup with the same cushion.
After talking it over with my wife, we decided to get the Ki Mobility Rogue ALX, the Axiom SP Visco cushion (same one I have currently but an inch narrower to fit my new chair), and the Axiom G (as a backup cushion, just in case). The color I chose is Silver because if it gets scratched, you're way less likely to notice it. My current chair is blue, and any scuffs - chip the paint.
Grand total (with a 10% off coupon thanks to the Honey app - "save10") with tax and everything included: $2591.28.
My wife's reaction: "That's not bad at all! I thought it was going to be upwards of $5k or $6k". I absolutely love how supportive my wife has been on my wheelchair journey. It would be a lot more difficult to manage this if she wasn't.
Let's just say there's someone else in my family that has said "I don't know why you think you need that." People that don't need a wheelchair, don't think about how freeing it is to have one. People who don't need a wheelchair, think about how cumbersome they are to get around.
When I'm in my chair, I don't have to worry about getting POTSie while I'm out grocery shopping. I don't have to rush my wife while she's looking at clothes because I can't stand still for long periods without getting nauseous. I understand that some people won't get it, but I'm new to this. My wife has been my #1 supporter because she's around me all the time; she knows the struggles I go through to be able to fake being well. She knows that a wheelchair helps me gain more independence and freedom. Thank you wife for looking out for me and cheering me on.
Estimated time for my chair's grand entrance from the website: "Custom ultra-lightweight wheelchairs will take 2-5 weeks to arrive depending on the manufacturer. "
Also, taking name suggestions :) Looking for something gender neutral-ish (not girly).
