Help Kati defeat Ehlers-Danlos medical expenses!

For: Kati McFarland
United States
Organizer: Kati McFarland
Help Kati defeat Ehlers-Danlos medical expenses! (Kati McFarland)
$52,267
of $67,143 goal.
Raised by 749 donors
77% Complete

The Story

My name's Kati. I live in beautiful NW Arkansas, I'm a Business+Violin Performance dual-degree student @ U of A, I'm a live music photog, I love cats, greyhounds, Russian composers, hockey, countless movies and tv shows, and I suffer from a genetic disorder called Ehlers-Danlos Syndromew/ many complications including Postural Orthostatic Tachycardia(high standing heart rate/fainting/fatigue), Gastroparesis(stomach paralysis), and I'm under eval for inflammatory arthritis and Mast Cell Activation Disorder(an immune condition that basically causes my body to treat any outside stimuli like allergens). I can barely walk/stand/eat w/o severe pain/dislocations/vomiting/blackouts.

As beautiful as the Ozarks are, EDS-savvy doctors are uncommon. Since dx, I’ve visited specialists in Dallas. With POTS/GP/arthritis/mast cell comes more travel; 4-8 week follow-ups w/ my EP cardiologist, EDS/GP-savvy nutritionist (to avoid a feeding tube), orthopedic surgeon, mast cell specialist, & rheumatologist. Last year I could afford most expenses through SSDI while living w/ my dad, but he suddenly passed away of a massive stroke last July. My mom died of cancer when I was 10, so with no other living immediate family, totally unable to work, my benefits do not cover bills and small savings from his estate only lasted about 18 months. If this fundraiser doesn't make up the difference, I WILL end up out on the street.

With your help, generosity, and signal boosting, I could pay for my medical expenses + associated travel costs through mid 2018.Though I won’t have finished undergrad by then, with any luck and the regular follow-ups I’m trying to fund-raise for, my complications will have stabilized enough that expenses after that won’t be quite as high and more manageable on my own.

Cost Breakdown:
  1. $2220 for TiLite Aero T Rigid Aluminum Wheelchair- Unfortunately due both to the severe joint pain/fragility/subluxations from EDS and the fainting/fatigue of POTS, even a walker is tiring to use to get around. I can’t go shopping without days of recovery, walk across campus without fainting or nearly, and require golf cart accommodation in order to get between classes. Also unfortunately, due to joint fragility and fatiguability, I can't "self-propel" a heavy wheelchair - any chair over 15lbs does just as much damage as walking, and using hospital-style chairs in museums and airports have resulted in injury, fatigue, and pain - so my only option is an "ultralight” TiLite titanium alloy chair. This would give me my independence and mobility back, but 2 attempts to have insurance cover it have failed.
  2. $5990 for SmartDrive Power Assist by Max Mobility- due to joint fragility and my history of shoulder and neck problems (with already one shoulder surgery and c4-c5 disc herniations) I can't self-propel even an ultralight wheelchair without damage and pain. My car can’t haul a powerchair, so the only alternative is a power assist device - this SmartDrive power assist recommended by my physical therapist and surgeon would basically turn a ti-lite into a powerchair.  Combined with the wheelchair, this device would give me independence and mobility in my life and especially University of Arkansas' large, hilly campus, but again, 2 attempts to get it covered by my insurance have failed.
  3. $13,171dental procedures and $9183oral surgery- Due to EDS-inflicted “enamel hypoplasia" (thin enamel) I've had bad teeth all my life despite fastidious dental hygiene (I buy floss in bulk, for God's sake!), with fast-growing cavities appearing in many teeth and reappearing after fillings. I had 5 teeth extracted in preparation for implants, but during the healing time (probably due to my fragile EDS tissues), my sinus cavities collapsed. Placing the implants will require $8000 sinus lifts, bone grafts underneath, not to mention the implants and anesthesia themselves. Without this surgery, my gastroparesis sabotaged nutrition could be further jeopardized, as it's pretty hard to chew your food properly without enough teeth. In addition to this first oral surgery costing $9000, my dentist is working with my surgeon to perform extensive fillings and crowns required on my incredibly fragile teeth, a treatment plan that will total $13,000.  My hypermobile dad had dentures by 35 and if I don't get oral surgery, I'll be headed the same way. Almost none of it is covered by insurance.
  4. $10,024.56 for 18 months of COBRA premiums @ $556.92/month.Before my dad’s death I was covered under his employer’s health plan. After he died, his beneficiary package paid for 6 months of COBRA for free. After those free months, this may seem like a big expense, and there’s several glaring omissions like my wheelchair, power assist, splints and oral surgery, but it also gives me a low ER copay, 20% copay on everything else, $1200 deductible, great vision, and cheap prescriptions, so this one large expense helps keep my other expenses lower. Unfortunately, it’s so large I can’t sustain paying for it from savings/benefits, so I’ve included 18 months worth here to give me time to find a cheaper exchange plan/medicaid supplement (though I haven’t been able to find a cheaper equivalent in the past, I’m hoping with more diligent searching I can look into reimbursements/credits for one).
  5. $8,820 for travel expenses for 4 day medical visits to Dallas every month for 18 months. - In the past year, I've gone to Dallas every 2 to 8 weeks, and usually spend 2 to 6 days there per trip.  Looking to the rest of 2016 and 2017, I'll probably need to go every 4 weeks (I already have taken one trip in early November and have one scheduled for mid-December and have/will spend 4 nights in Dallas each trip).  At avg $60/night ($240/4 days) for a cheap motel in McKinney, $25/day ($100/4 days) for catsitting while I'm gone, $100 in gas money, and $50 in food money, this amounts to about $490 per trip, or $8,820 for trips every 4 weeks/1 month (9 trips total) for the next 18 months.
  6. $1,775.35 for ER copays owed - $1,083.47 for the ambulance and $unknown for the ER bill for a visit in December 2015, $15 in clinic billing for a Washington Regional ER visit in May 2016, $676.88 for a Mercy ER visit in May 2016
  7. $1,065.60 for owed copays and bloodwork for my EP cardiologist and $24.72 for 1 year of followups every 8 weeks at $4.12 each (office visit cost after insurance adjustments)- this Dallas-area cardiologist was recommended to me by my diagnosing geneticist.  He specializes in Ehlers-Danlos and POTS, and my copays for him are so high because he diagnosed me with 4 days of incredibly thorough testing that usually costs over $4,000 without insurance (so my 20% was about $800).  In addition to the copays from testing, he's tried me on 5 different medications requiring follow-ups every 2-4 weeks since April, though he's since deemed my POTS refractory/treatment resistant so my follow-ups in future will be every 2 months.
  8. $292.70 for owed copays to orthopedic surgeon and $1,794.77 for my shoulder surgery- an EDS knowledgeable high-risk orthopedic surgeon I was referred to by my geneticist, this surgeon operated on a shoulder impingement after months working to discover the cause of a decade of pain that prevented me from playing violin, revealed to me C4/C5 (neck) disc herniations that dozens of doctors had missed, and since has worked diligently uncovering the cause of debilitating spinal pain and referred me to the rheumatologist I'm waiting to see when the scans he ordered uncovered large-bone arthritic inflammation.
  9. $720 for $90 nutrition consultations with a Gastroparesis, POTS, and EDS knowledgeable nutritionist in Dallas every 6 weeks for the next year- in addition to the proven effectiveness of dietary treatment for POTS, I have severe Gastroparesis (stomach semi-paralysis) with an emptying rate of 5% after 30 minutes, when normal should be 50%.  I've lost over 20lbs in 3 months, am currently clinically underweight, and in August was in the ER for week-long vomiting/gastric irritation.  The only treatment for gastroparesis (short of a gastric tube or IV nutrition) is diet and medication. All medications I've tried didn't work or can cause nerve damage long term, so this nutritionist, while not covered by insurance, is very important to keep my weight stable, prevent vitamin or nutrient deficits, and prevent muscle wasting.
  10. $576 for PCP copays - my local EDS-savvy PCP helps coordinate care between local and out of state doctors and refers me to local specialists, such as neurology and gastroenterology, when the need arises.
  11. $634.19 for various specialist copays - in addition to the individually listed specialists, I also see a pain doctor locally for medication and joint injection management of the severe chronic pain involved with Ehlers-Danlos, Gastroparesis, and my as-yet unidentified arthritis; a local gastroenterologist for medical (vs nutritional) management/monitoring of my Gastroparesis; a local neurologist for medication management required of some of my POTS medications and evaluation for some of the neurological side-effects of EDS itself and certain medications; a local psychiatrist for management of the severe anxiety and depression that I experience as a result of over a decade of severe chronic pain, as well as for the PTSD from witnessing my dad's death; a DFW-area rhuematologist I'll be seeing for eval of the large bone and joint inflammation recently revealed by a bone scan; and a DFW-area allergist I'm seeing for evaluation for Mast Cell Activation Disorder/Syndrome.
  12. $1,145.81 for Physical Therapy copays owed and expected for wheelchair evaluation ($253.06), wheelchair skills training, shoulder rehabilitation ($102.73 owed, $430.92 expected), and cervical herniation (slipped disc) treatment ($359.10 expected)- after my shoulder surgery I went to rehab PT for about a month off and on, which was interuppted by a worsening of my POTS.  Owed copays for this are $102.73.  Fortunately the nature of my surgery means I can restart again at any time, but 18 sessions (what my PT said were left) to complete my surgical rehabilitation would be an expected $430.92 extrapolating from copays owed at $23.94/appointment (from combined $20.37 exercises and $3.57 stim/ultrasound), and PT at the same practice for my recently discovered cervical disc herniations (an average 15 session treatment course, again according to my PT) would be an estimated $359.10.  In addition, to get my wheelchair prescribed I had to go to a separate PT to evaluate and decide on the best chair ($126.53 once in 2015 and once recently to update the prescription for a total of $253.70), and once I get the prescribed chair I'll have to attend sessions with the same PT for "wheelchair skills" training and to establish a home program to prevent muscle wasting (though I have left this off and will update the amount to include it once I know what it would be).
  13. $110 for Occupational Therapy copays owed, $120 for copays expected, and $1,284 for splints still needed - though my GoFundMe last year was blessedly successful in raising funds to pay for Silver Ring Splints to prevent hyperextension of my fingers and joint degeneration that causes, the worsening of my symptoms means over the past year it's become apparent I need more.  Specifically, I'll need: 2 3D Stable Thumb Splints(1 per thumb) @ $395 each for $790 total minus the $242 refund for my unfortunately painful & ineffective Thumb MCP Splintw/ bracelet and PVX, for $548 net total; 5 more Swan Neck Splints(1 each per thumb IP joint and 3 for currently unsplinted finger joints) @ $86 each for $430 total; and 2 EDS splints, or 1 per hand @ $153 each for $306 total; for a full total of $1284.  Though Silver Ring Splints are unfortunately not covered by insurance, to get them properly fitted and ordered I still have to go through an occupational therapist who has copays/patient portions like all my other practitioners; I currently owe my OT $110 and expect to obtain the needed splints over 6 more appointments (1 each for fitting/ordering, then 1 each for evaluation of the received splints, for each of the 3 kinds I still need to get) at an expected copay of $20/appointment for a total of $120.
  14. $734 for Prescriptions not covered by insurance - despite great prescription coverage through COBRA, there are several medications that are so new they're not covered, or medications that I have to buy OTC (primarily the high-dose antihistamines I have to take for Mast Cell Activation Disorder) at great cost.  First of these is Deplin, a prescription form of folic acid formulated to cross the blood-brain barrier that I have to take due to a genetic mutation that makes it difficult for my body to access dietary folate or other folate that's not formulated in this way - I'm ordering soon and will update this total once I know how much it is for a 90 day supply.  For MCAS/MCAD, I have to take 2 180mg Allegra gelcaps and 2 150mg Zantac per day (no generics due to MCAS/MCAD-caused chemical sensitivities): at 2 tabs per day and 547.5 days in 18 months, or 1095 tablets per 18 months, an 18 month supply of Allegra at $0.43/tab via Amazon Subscribe & Save is $471; an 18 month supply of Zantac at $0.24/tab via Amazon Subscribe & Save is $263.
  15. $1500 for imaging (MRIs/CTs/Bone scans done over the past 5 years)

Fundraiser Updates

Posted on October 28, 2017

Posted on October 28, 2017

***FINANCIAL EMERGENCY, PLEASE HELP AND SHARE***

The good news: through your combined generosity, this fundraiser has raised $51,222 to date, peaking in March! The bad news; with no other money but my negligible SSDI, and costs I’ll outline in a second, I’m now left with $300-some in my bank account, 2 months behind on rent as of November 1st, and facing a $250 upfront charge for an unmissable appointment a 10-hour roundtrip drive away on Monday, which itself means needing gas money and somewhere to stay, on top of needing almost $400 out of pocket to cover wheelchair add-ons my insurance didn't cover (push-rim covers, luggage rack, etc). Specifically, with rising rx costs and copays, my $556/month insurance premiums (I still haven't found as high quality a plan on the exchange with cheaper premiums), necessary trips to see specialists in Dallas every few months, 7 ER visits since July at a $100 copays each+20% bills after the fact, 20% copays on expensive tests, doctors' visits up to 6 times a month, 4 surgeries since April, and all this on top of living expenses and emergencies like rent (I’m on a 600+ family waiting list for subsidized housing, but until then, I’m left paying rent on the house I shared with my father before his death, unable to find accessible housing in a college town even after literal years of looking), utilities, car insurance, car insurance deductible for a recent minor accident, all of which can’t even themselves be covered by my SSDI have depleted this fundraiser; basically, your generosity was not enough to sustain me indefinitely and my condition has deteriorated to the point I can't find any kind of employment to supplement my benefits enough to cover even living expenses.


Again, the funds needed to get me to and from this appointment, and cover living expenses on an emergency basis for the next month, would ideally be $3000-4000 (my $2000 overdue rent, $300 utilities, car insurance, my $600 insurance premium, $250 for the appointment and $100 for gas to and from the 5 hour away doctor, possibly $75 for a motel so I could stay there without having to drive 10 hours on top of the doctors’ appointment, and a few hundred of wiggle room to pay for those push-rim covers, prescription copays, and any extra appointment copays in November).


So if everyone could reach deep and find it within their hearts to be generous once more; even if everyone who donated to this fundraiser gave only $5-10 each, that would go a long way to avoiding homelessness, keeping my health insurance paid, my car insured, my prescriptions paid for, and getting me to this essential appointment and back Monday. I’ve raised the goal amount to reflect this needed emergency $3-4k, but I also will be raising it in the coming days to reflect another surgery coming up - a gastric pacemaker that we hope will get me off my recent feeding tube surgeries, but costs $120,000+ average out of pocket and therefore will cost me a 20% copay of $24,000+.


Additionally, if anyone wants to help out by helping with household expenses and OTC medical expenses, I have an Amazon wishlist with things like pet food, flea and tick products, over the counter medications, etc here http://a.co/6MmzS9L. Thank you again everyone for your generosity thusfar; I'm sorry it didn't go further, and I'm sorry to have to ask you to draw upon it once more, but I thank you all in advance for anything you can do to help.


Posted on March 9, 2017

Posted on March 9, 2017

Hello, all!  I've been meaning to post an update since Wednesday of last week (Ash Wednesday), and DEFINITELY need to post one now, but the longer eloquent thank yous will have to wait.  Instead, a short explanation - yesterday, I woke up to an email asking if I'd like to be on CNN again with Jeff Jeans.  I was running on little sleep, thanks again to hip dislocations and spinal arthritic pain in the night, but agreed - what better than spreading awareness again?  I talked to Jeff, a lovely and eloquent man, in the afternoon over the phone and finally went on, while some friends who had come over to help me with housework while I read up on the new bill in preparation played scrabble out of frame 😁.  There are many things I wish I could have said, such as replying to Paul Ryan's assertion the ACA is dying because his congress refused to fund it correctly, but unfortunately I just had to focus on shoehorning in the link to this fundraiser (probably to Don Lemon's chagrin), but you gotta do what you gotta do when medical bills are involved.

To that end, this is an update to let everyone know that I have updated the goal amount again based on fees, something I overlooked when I first set up the fundraiser.  While youcaring is a free platform, the payment processor, wepay, takes 2.9% and a flat $0.30 per transaction.  At the original $61,185 goal and an average of $100 per donation so far, this means an added $1774.89 to make up for the 2.9%, and $183.56 to make up for the $0.30 per donation.  I've updated the total to reflect, and will make a real update soon.  Again, thank you so much to everyone who has donated; while I feel like somewhat of a failure as an advocate for having to self-promote this fundraiser during every appearance at the probably expense of time I could spend talking about the importance of the ACA, your kind comments sooth my soul and are just as much blessings as your monetary generosity.  Don't quit donating and sharing - no donation is too small and no social media post is unappreciated.  Loudest of love to all y'all 💞

Posted on February 26, 2017

Posted on February 26, 2017

Hi y'all! First off, apologies for not updating sooner, but I had to skip the IV hydration I require for my drug-resistant circulatory condition POTS for other appointments for 2 weeks, so I’m significantly dehydrated on top of everything else going on, and it's made writing an update slow-going.
Speaking of everything else going on...I write this on the eve of my 26th birthday and though I'm in tremendous pain from the past few days of exertion on top of that dehydration, I truly have no words for the birthday gift that’s been the unprecedented outpouring of support and generosity here since Wednesday.  Last week, this fundraiser was at around $500 when I reached out to friends with social media reach in hopes of raising just another $1000, enough to keep a roof over my head and utilities turned on.  When I wheeled/walked on my walker (despite what some outlets have reported, it wasn't the wheelchair that I desperately need but hadn't been able to afford) into Senator Cotton's town hall Wednesday night, it was still shy of $1000 total and I had no hopes it would raise more in time to save me from homelessness.  I was sure that either my healthcare premiums, rent, or utilities would go unpaid.  Perhaps that frustration and bone-deep fear infused me with determination, or caught the universe's attention in some way, because while I asked Senator Cotton (who, to his credit, at least showed up) my question as nothing more than a constituent who wanted a straight answer, it set off something I couldn't ask for or imagine.  This fundraiser is now at $23,822, over a third of the way to the total goal of $61,185.
Of course, a third of the way is not all the way.  I still have almost $40,000 ($37,363 to be exact) to raise, and after my upcoming consultation with my GI surgeon for the gastric pacemaker without which I’ll starve, the goal may increase further (the pacemaker device alone costs $30,000 out of pocket).  But never in my dreams did I think I'd get this far this fast, if at all - I've been praying, thanking the Lord and the universe for their generosity, every waking hour since this started, and with more feeling every time.
I will continue praying, giving thanks, not just for the abstract of this welling up of generosity, and not just for you all and your monetary generosity individually, but, most of all, for the stories that have come with your donations.  Money helps, it's true, and I still have almost $40,000 more to raise to pay for all my out of pocket expenses.  But what helps the most, what I truly believe will change the most hearts and minds, is people's stories - for every single one of you that reach out with an open telling of your life and struggles in response to me telling mine, the more I'm convinced we can change the hearts and minds of those who would take away the protections that keep those struggles from getting worse.  Maybe that's a pipe dream, but in any case, your stories and generosity show me that the American people will not take the dismantling of our rights lying down, and that's as valuable to me as the surgeries and the medical devices your generosity will fund.
So keep sharing on Facebook, Twitter, even telling your friends the URL (youcaring.com/katieds!), not only because it's the only hope of meeting my fundraising goal and that’d make a heck of a birthday present, but so I can continue to be blessed with and gain hope from the stories that come with that.

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