KIMBERLY KAYE DOESN'T FIGHT ALONE
HONEYMOON FROM HELL
In May 2016, Kim and Ray had a legendary wedding at Kajuns Pub in New Orleans. It was the joyous, delayed party for their tearful legal wedding in 2013 when Ray carried Kim, fully disabled by a severe Crohn's Disease "flare" plus a life-changing shingles infection, into City Hall to prove how serious he was about the "in sickness and in health" part of partnering.
In June 2016, before the honeymoon for the real wedding could finally be had, a misdiagnosis of a simple UTI landed Kimberly in serious decline with a drug-resistant kidney infection.
This preventable infection did permanent, traumatic damage to the tissues of Kimberly's bladder and pelvis, partially paralyzingly her bladder and leaving her with an agonizing, incurable condition called Interstitial Cystitis (IC) . Kim's IC is defined by bleeding in the bladder walls, inability to urinate without medical intervention, constant urgent need to urinate, disabling pain, and incompatibility with the Crohn's Disease already attacking Kim's colon and small intestine.
The combination of Crohn's and IC has left Kim (formerly a competitive jiu-jitsu blue belt and volunteer women's self defense instructor) now 20lbs lighter, infertile, and totally bedridden in a handful of weeks. Instead of a honeymoon, Kim and Ray began a still-continuing odyssey of invasive tests, hospital visits, weekly bladder injections, weekly surgical procedures, physical therapy, malnutrition, and pain management interventions. As they exhaust their health insurance through Leg One of treatment, they approach the obstacle of Leg Two of treatment--the $10K price tag attached to Hyperbaric Oxygen Therapy (HBOT), the ONLY available treatment in the United States that can put both IC and Crohn's Disease into remission at the same time. Without HBOT therapy, Kimberly's clinical prognosis for recovery is just 30%. With HBOT therapy, she could see a reversal of some organ damage and attain full remission in just 7 weeks.
If you keep reading, you'll understand why Kimberly both needs and deserves to get her life back as a patient advocate, mixed martial arts educator, and scrappy creator.
MEET A REAL FIGHTER
I first met Kim in 2008. She was a rising star reporter for Broadway.com. Over the next year or so, I watched her catch the attention of highly respected journalists like David Carr and Terry Teachout, both of whom recognized her fierce talent and encouraged her desire to speak for those who cannot. I watched her work appear in national publications like The Economist and NY Observer, and blossom in her own writing (The Trouble With Poet) and playwrighting--while still managing to climb the arts journalism ladder to Creative Director of Editorial for Theatermania.com at 29. At the same time, she found her voice (literally) as co-lead singer in Loose Cattle, the country band we began as a lark and have since taken from friends' living rooms to stages at Lincoln Center, New Orleans' Jazz Fest, Mountain Stage in West Virginia, and clubs all over New York and Louisiana. In all those years, Kim was a dynamo of energy and productivity, able to write through the night and work a full day at the office, attend a play and rehearse with us deep into the night again. You'd have thought she was unstoppable.
But even then, Kim was fighting a covert battle. In her teens, she was diagnosed with Fibromyalgia and Immune Dysfunction . With specialist medical help and, crucially, good health insurance, she was able to go into remission not long before we met. She was ready to take on the world and she was already making her mark, big time.
Then in 2013, her illness woke with a vengeance, landing her in the hospital with a severe kidney infection, shingles and Chron's complications all at once. Her recovery took a year with the effects so debilitating she could no longer work, becoming "Legally Disabled" --a classification she was determined to unqualify herself for as fast as she could get back on her feet. She drastically modified her diet, took up jiu jitsu in lieu of physical therapy (under the guidance of husband and professional coach Ray), and sought help from every traditional and non-traditional therapy she could find and afford.
Once again, she seemed to be beating the illnesses attacking her diminutive frame. She married Ray, and they moved to the city she had years earlier fallen in love with, New Orleans. It was a much deserved (and hard fought for) chance at a fresh start in the city they both loved.
Kimberly had already dedicated herself to NOLA through years of work on "Nine Lives," a vibrant and moving musical that songwriter and friend Paul Sanchez had enlisted her to write using his songs. She and Ray threw themselves into their new life, Kim writing the wonderfully demented A Christmassacre Story, recording and making videos with our band, joining the Theatre at St. Claude Players, acting in the highly praised Killing Of A Lesbian Bookie, and, with Ray, putting their MMA training to generous use through their Wülfpack MMA and Tactical Self Defense 'donation only' community training sessions, open to all, but especially the most vulnerable citizens of New Orleans. To all appearances, she was a tiny Wonder Woman.
Secretly, though, Kimberly was powering through a drastic reversal of her progress against disease.
A drug resistant kidney infection and new Interstitial Cystitis (IC) stole her mobility and strength. As she began treatment for IC, four undiscovered ovarian cysts ruptured inside her little pelvis, reversing progress from her earlier treatments. The Crohn's Disease combined with IC mean both her colon AND bladder are not functioning correctly, requiring medical interventions so painful her doctors have been forced to utilize opiates, narcotics, cannabinoids, and nerve blocks just to quiet her nervous system enough to give the treatments a chance to work. Despite the fact that she now has a team of some of New Orleans most extraordinary doctors on her case, she is in great pain, becoming dangerously malnourished and making only sporadic progress.
Of course, Kim insists on facing even her agonizing nerve block sessions with a sense of humor and a message to her doctors on the day of surgery:
And then, of course, there's the bill.
Three months into the treatments that have been the only thing keeping Kim from sliding into a truly dire state, their insurance and live savings are maxing out. Ray has been providing round the clock care at home, catheterizing her bladder when it cannot drain, managing pills and doctors appointments, driving Kim to specialists and hospitals, unable to apply for full-time employment. Because they are fighters and survivors, they have done all they can do, but it's not seeming to be enough. But there's hope.
Kim's doctors explain that Hyperbaric Oxygen Therapy has shown dramatic results stopping, and even reversing tissue damage from both IC and Chron's and a host of other previously untreatable ailments. Fortunately, New Orleans is home to a hyperbaric chamber on the West Bank. Unfortunately, Kim's insurance, for whatever reasons they have invented, won't cover the treatment.
This is where I'm hoping you can help. Along with a host of Kim's friends, relatives, colleagues and admirers, I am trying to raise money for this treatment. Ideally, we could raise more to supplement all the costs that have exceeded their resources so far, and give them a chance to get ahead and stand on their own as they have meant to all along. Kim continues to fight using a dark sense of humor and a tube of liquid liner--as followers of her Instagram Account know. But first Kim has to get well, and this hyperbaric therapy seems the best bet she has at the moment.
Kim and Ray are hard working people, with so much to offer New Orleans and all the people they encounter. They've already demonstrated their desire to contribute to their community and to extend lifelines to others, others who have had their lives changed by Kim's deep well of empathy and her ability to cut through to say things that need saying. They are young and so full of life and possibility. And they are proud and want so much to be self sufficient, so asking for help is very hard. And that's why I'm asking if you might be able to help them in a profoundly meaningful way by donating to this campaign, and by sharing it with everyone you know who might have the ability and the generous heart to help my dear, dear friend.
Kim's gifted team of doctors, led by Dr. Carin Sanchez , have encouraged her to write a book for other chronically ill patients and their families, saying her "wild sense of humor, creativity, and resilience in the face of bad news is a model for patients of any kind."
We want to make sure she gets the chance to write that book someday.
Thank you sincerely for anything you can do.
For everyone who has been following my dear friend Kimberly Kaye's story, here's a lengthy, Two Part update. Included are: some good news, tough realities, a LOT of detail and, as always, more than a little irreverent humor (see her new doctor's poop pillow photo).
The not so excellent news:
The cost of this leg of the journey has been catastrophic—Medicare/Medicaid will not pay for her specialist ($600 an hour), medications ($1300+ a month), CBT ($400 a month), or pelvic floor therapy ($400 a month). Obviously the cost of airfare and lodging to see her specialist in Chapel Hill, as well as the cost of feeding supplies, are not covered. Additionally, the kind of stem cell transplant Kimberly needs is not available in the United States, is not covered by insurance, and can cost upwards of $50,000-$70,000USD, which is why is it not currently an option for her.
The total monthly cost of the antibiotics, prokinetics, enzymes, neuromodulators, nutrients supplements, doctor check-ins, and therapies currently keeping Kimberly alive is around $3000-$5000 monthly depending on if she has to fly out-of-state to see her specialist that month. These costs are completely unmanageable—and due to recent INEXPLICABLE changes to the American health care system, **none** of these life-saving medical expenses are tax deductible. She receives $1190 a month to live off of from SSDI, and will still be taxed on that income. If things remain as they are, Kimberly and her family will be completely out of money to continue treatment and management by the end of 2018.
She has some very Kimberly thoughts on the situation.
“So many patients I know in my situation have died, been cut up like Frankenrats, or are currently in hospice that I need to be super clear:
I’m a lucky one right now. I’m NOT in a “you have 12 months to live situation.” I'm not eating through a tube in my heart anymore. My new doctor is like the Dalai Lama of Gut Disease—I shit you not, Lotus blossoms fell from the sky silently as he explained why my colon retired on me.
But I am in the perilous “I’m going to run out of money for meds and food by December” situation. And I’m also in a broader “progressive cell death” place where if I don’t eventually receive stem cells before too much of my ENS dies, there won’t be enough of it left for the treatment to be efficient. No one can predict if stem cells could completely reverse my illness or just halt it where it is, but I could honestly be really, really happy with it freezing where it is today.
Yeah: Occasionally, I shit myself or can’t void at all for 2-3 weeks! Yeah, I have anal-pelvic spasms that feel like when The Emperor is lightning-attacking Luke Skywalker! My girl parts are totally broken, and I live off a liquid diet...but I figure in another 30-40 years EVERYONE ELSE I know will also be shitting themselves, pissing themselves, have broken junk, and be living off puréed baby food. So, soon I’ll be in FANTASTIC geriatric company!
And despite being sick: I’m back in school for Functional Medicine Nutrition Counseling and Trauma Healing certifications, so I can work with other gut, trauma, and chronic inflammatory illness patients BEFORE their illnesses ever reach where mine got. I’m able to research and write, which has meant I’ve been able to find meaning and purpose in being a functioning patient advocate for people with less experience or limited communication skills. When I’m fasting, I can perform 2-hour sets with our Loose Cattle band—and I would NOT be the first musician to rock a diaper,
PS. I feel like I have a lot of life, drive, and work still to do.
My new doctor is just as confident as I am that, if we can slow the progression of my illness and better manage the symptoms I have currently, there is zero reason I shouldn’t be able to return to work and contribute to this community and the larger wellness community for as long as this life lets me.
(It should go without saying that if you’re a donor to this campaign your entitled to as much Functional Med coaching as you could possibly want once I graduate.)
I fully accept that we all die, and that not everyone gets to have a long life. I know a lot of people would literally kill to have the support I’ve already received in staying alive this long. My survivor’s guilt about making it this long while other patients I know keep dying or ending up in hospice is pretty crippling. I don’t know if morally or ethically I can keep asking for help. Every time I have asked for help and received it, whether it was HBOT or getting to Cleveland Clinic, my body has healed, I have regained some function, AND I’ve been able to collect information from the experts themselves to share for free with the patients of this nightmare disease who couldn’t get there themselves. Which makes me hope my body and spirit are still capable of healing and able to serve a purpose in this world.
But I struggle with whether that being true is the same as my life being worth more than the mother with cancer, or the other CIPO patient who died, or if it’s even worth the $50-70K it would cost to regrow my nervous system. Even if I do respond to treatment, complete my certification in Trauma Healing and Nutrition Counseling—will my survival and my contributions to the community that saved me be equal to what they paid to keep me alive?
I have no idea. It’s an existential crisis I’ll have to keep sorting through.
Love you all and thank you for reading if you made it this far.”
Complete Details on Where We’re At Now:
Kim's June journey to meet a specialist in North Carolina was AMAZING! There is excellent news, and not excellent news.
The new doctor, Dr. Douglas Drossman, *literally* wrote the book on integrative treatment of functional gut diseases—and on improving quality of life for gut disease patients. His decades of experience, combined with a much deeper investigation of Kimberly’s history than any other gut doctor has done, established one root cause of her CIPO, bladder dysfunction, and intestinal dysmotility: Enteric Neuropathy, a combination of dysfunction of the Enteric Nervous System (affecting mainly her intestines, heart, bladder, and gut-brain axis) and the ongoing death of neurons in that enteric nervous system. Doctors at Cleveland Clinic had previously missed that her heart was indeed being affected, making management of symptoms difficult.
What that means in Regular Human English:
So how does ENS damage happen? In this case, Kimberly’s mother was life-threateningly ill when she was pregnant with KK. During the 3rd trimester Kimberly’s fetal brain stem wasn’t able to drop enough neurons into the still-developing gut to establish a functional enteric nervous system (ENS). Her subsequent bladder, heart, and bowel symptoms were mild through childhood—tummy trouble, frequent bladder problems, dizziness, but nothing obvious.
Then, at 17, Kimberly was sexually assaulted and stalked by an older coworker at a summer job. The physical trauma to her pelvis, combined with the steady rush of PTSD stress signals in the brain, triggered the ongoing death of more neurons in her already fragile Enteric Nervous System. She was ill, immune system and ENS seriously compromised, but obviously still able to function. In fact, this began the most active and productive part of her life, from college at Wagner exploring performing and writing, through her careers as a theater maker with the Effable Arts theater company she helped found, and her work as a theater journalist at Broadway.com, and articles for the Observer and the Atlantic among others, eventually rising to the position of NY's youngest Creative Director at TheaterMania.com
That's when a crucial blow came, in 2013, when a massive viral infection of Shingles Zoster and Epstein-Barr Virus hit her compromised immune system, two illnesses which cause nerve damage and neuron death. At that point, Kimberly’s malformed system was too damaged to take the assault, and the damage began the decline from “this isn’t working quite right” into outright organ failure over the next 36 months. Months during which she and her husband Ray had relocated to New Orleans, gotten married and planned to start a new, productive, and positive life making things in their adopted new home. Instead, life became an uphill battle on a slippery slope, managing her failing health and trying to find doctors, answers, and treatments.
Kimberly’s other organs and the remainder of her ENS that still lives have done their best, but the symptoms she lives with daily now—namely CIPO (chronic intestinal pseudo obstruction), dysautonomia, bladder ulcers and spasms caused by the bladder being unable to void itself completely, and Levator Spasm Syndrome (uncontrolled intestinal, vaginal, and anal spasms caused by the panicked central nervous system and ENS trying to reestablish communication) are only manageable, not curable. Her Enteric Nervous System has experienced too much neuron death to regenerate, and cannot function adequately without ongoing medication, physical therapy, CBT, nutritional therapy, and close monitoring by a “neurogastroenterologist.” Without this management, Kimberly faces infection, debilitating organ and muscle spasms, malnutrition, sepsis, and death.
The Excellent news:
With continuous access to medication, physical therapy, nutritional therapy, and CBT, Kimberly can stabilize and even, possibly, return to working.
Stem cell transplant is also becoming clinically supported for both CIPO and regrowing enteric neurons, restoring function in the damaged ENS. Because Kimberly has rejected the surgical track so far (resectioning and organ transplants do not fix the enteric nervous system damage, so the dysmotility recurs in the majority of patients who survive these dangerous surgeries), she is a prime candidate for stem cell transplant. Increasingly, this intervention freezes the progression of neuron death and is capable of returning some normal function to the patient, and can remove the life-limiting financial burden of daily medications, nutritional therapy, and manual therapies. It is a comfort to know this option is out there, even if it is unattainable at this time.
But, wait, there’s more…..(see PART TWO)
It is exclusively with shame that I try to write this.
In the past year since being released from the hospital there have been some major victories: Being able to remain off my feeding tube, and regaining enough bladder function to remain off the catheter. Success over some infections. Releasing a new album with my beloved band, and performing it live. Every day I have been able to spend with friends and family. Walking the dog in the sun.
There have also been major obstacles: namely, a serious new infection as a result of the CIPO/dysmotility that cannot be diagnosed in New Orleans due to lack of resources for Medicare/Medicaid patients, and an advancement of the CIPO itself...it is a progressive disease, unfortunately. These issues have led to secondary issues, namely persistent pneumonia and drug resistant co-infections.
For all the victories and gratitude I have daily, I was not prepared for Medicare/Medicaid’s refusal to cover nearly everything that keeps me alive—blood tests, CT scans, rectocele and manometry testing, medications, physical therapy, nutritional supplements as I cannot get much of my nutrition from solid food anymore, all of it has been denied by insurance. I have had to pay out-of-pocket for almost all of it, at a cost that monthly SSDI doesn’t come close to covering. I have been unable to find a job that will accommodate the level of disability I experience to supplement these costs, something which brings me daily shame. The state of Louisiana also does not offer one Intestinal Dysmotility specialist versed in CIPO and covered by Medicare/Medicaid, which has meant all my treatment and maintainence has had to take place via Skype with Cleveland Clinic in Ohio.
After 12 months, I have declined too much and cannot continue to manage without face-to-face testing and treatment back at Cleveland Clinic in Ohio. The cost at this time is—again, and I’m positive anyone still reading is tired to hearing about—catastrophic. Medicare/Medicaid will not cover the majority of the blood and intestinal testing up front, and due to the rareness of the illness does not recognize the most essential diagnostic testing as “medically necessary”—when your illness effects 9 out of every 1,000,000 people, it becomes impossible to make a government employee in an office 100 miles away understand why “advanced radiological motility testing” or “mycotoxin” diagnostics are actually essential to keeping you alive, bs being a fancy medical extravagance for rich folks who want to live to age 180. Air fare to travel to the doctors in Ohio, shipping my feeding supplies and supplements to Ohio, transportation to and from the hospital once there, all of it far exceeds what our family would make in 3-5 years, let alone this month.
I find myself in the situation, again, of having to beg for money in order to be tested, treated, and returned home. I find myself begging a community instead of contributing to one, something that has become so routine it has eroded my any self-confidence I used to have.
The plan is for me to travel and stay in Ohio for care alone to keep costs to a minimum, and to allow my husband to continue his important work teaching here in New Orleans. Beyond that, long term, the reality is that I will have to leave New Orleans to survive. Access to up-to-date hospitals, diagnostic tools, non-prescription drug treatments, as well as Medicare/Medicaid programs which are inclusive vs brutally discriminatory toward the poor are essential parts of living, working, and contributing with a chronic illness...and Louisiana, for all we love about New Orleans, does not offer any of this to its residents.
I know much has already been given to me, at a time when most people feel marginalized and deprived. My survival the last 18 months has been a miracle made possible entirely by generosity and community. I hope that anyone reading this will hear and believe this is not the life I wanted or am working for, and that I will do anything to heal and contribute in whatever way this world will have me, if it will have me.
A consideration: Hiring enables the disabled. Hiring the disabled can take some reframing of what a “work day” or “work week” looks like, and it can admittedly require creativity and compassion not talked about in business management seminars, but it can be a life-changing shift for a disabled but CAPABLE individual. If you cannot donate but can hire, or consider hiring, a differently-abled person with a body that is sometimes very capable and a mind that always works overtime for part-time/gig work (remote, digital, or in New Orleans), please don’t hesitate to contact me. Paying my way and contributing to my community has always been the goal. It was what I did until the day my body physically gave out.
with more than a little embarrassment, but mostly just thanks and deep gratitude
"From IC to "The Suck It (CIPO) List"
It feels necessary to both apologize for and explain the continued asking for help here. Asking for help, since the beginning of this campaign, has been deeply difficult and often felt downright wrong--we've had so little time as adults to serve others before asking for things back. But last week, Cleveland Clinic gave us sobering instructions to start doing and seeing all the things we, our family, and our friends wanted to see and experience together ASAP. My original case of IC has been diagnosed as part multi-system organ failure. Specifically Chronic Intestinal Pseudo-Obstruction (CIPO) with Intestinal Failure and Global Gut Dysmotility. My case is so rare I've been entered into a CC study--my one shot at long term survival--and the results will influence how the next decades of CIPO and GGD patients are treated, rehabbed, and hopefully someday cured. It also takes my life, plus the lives of my family and caretakers, and surrenders them to the hands of a team of physicians I'm still learning the names of.
The study and treatment work like this: I remain here in Cleveland until late April, undergoing a barrage of tests (ranging from generally unpleasant to downright torturous) and entering an intense, highly specialized 8-hour-a-day pain management clinic in preparation for beginning the treatment. Only then does the FDA release a small portion of experimental medication to Cleveland Clinic to the only doctor in the country they have authorized to perform this treatment--all this in an effort to restore some of my intestinal function and delay the need for organ transplant. We try it. I fly to Cleveland every 6 weeks for the next year for checkups and testing, and to pick up refills.
If I am a non-responder to the medicine, or my organs continue to fail too severely even with meds, Cleveland Clinic calls us and I immediately relocate to Cleveland until the right surgical procedure--resectioning, transplant, grafts, or Total Gut Transplant (5-6 organs all at once)--is determined and performed. Could be a 1 year relocation. Could be 2. Could be permanent. We don't get to know.
The moment we get the call to relocate for surgery, all travel, life experiences, work, family milestones, advocacy work...all of it stops indefinitely. It does not resume until I have, survive, and recover from surgery. After that, life becomes about trying to reintegrate back into a new life, and watching carefully for signs of organ rejection.
There's a lot to be positive about. I made it into a study. Mortality rates are improving each year. The world's leading authorities on THIS specific and rare and disabling disease are working together, operating out of the hospital I was placed at by a remarkable soul and enabled by the profound generosity of each of you and so many others. Mayo Clinic is MAYO CLINIC and it doesn't even do gut transplant surgery. When Mayo Clinic gets a rare CIPO patient, they send them to where I am. That's telling.
It's also the end of our lives as we have known them. To pretend testing and the medication alone aren't life changing and grueling would be a lie. We don't get to know if I have 3 months, 3 years, or some miracle eternity before "the call" comes and things change again in very dire ways. With that in mind, we've been told to "go live, now." See the things. Hold the people. Make the memories. We may need them to make it through the fight. We may need to make them now, period.
At 33 and 34, with disability abruptly stopping my career path at 29 and Ray turning full-time caretaker this year, neither of us got much time in the working world to bank for something like this. We feel now like asking for help with resources to "go, live, now" is less invasive than begging for money and food on loop.
So that's how the "Suck It (CIPO) List" was born and is now an alternative to the more death-centric "Bucket List." We don't want to cram in the sights, faces, experiences, and moments we expected to spread out across a lifetime with people we love under the acceptance of some perceived Death Clock. We fight on...but admittedly, we've only gotten this far with more than a little help from our friends and strangers. And it looks like we're going to keep needing some help, be it with airfare or ways to see loved ones or maybe even finding a path to that wellness retreat in Fiji to strengthen my spirit, so my body and way of fighting can be used to help future patients....and obviously, ideally, me?
Thank you for all the generosity, love, support, obscene coloring books, opening of hearts, visits, care packages, and hospitality that has gotten us to today. Up next: Whatever tomorrow brings."
You look like Snow White in that thing. Sending you some extra love my friend!
I read every one of these updates, and i hope you read the responses. Kim you are one of the strongest people I know. I hope everything turns around for you and you and Ray can start living the lives you deserve instead of moving from hospital to hospital. sending love and always thinking of you.
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Best wishes for Kim's treatment and recovery. As a fellow Crohn's patient, may I ask why she hasn't been started on any biologic therapy like Remicade or Humira? It's a fairly standard treatment and it would be a little odd for her GI doctors to not discuss it.
Thank you for the update, Mr.C. It is heartbreaking to read how the health insurance is putting Kim through the wringer. TPN, not covered is just plain criminal. Keep fighting, Kim. As for you , Mr. C, I'll see you at the City Winery. Stay strong, stay positive.
Kim, keep kicking ass. We love you. Mami y Papi Lopez
Happy Thanksgiving Kim, I am your Mom's cousin and am rooting for you as you battle this out. You are a strong woman with so many who love you. Hang in there, we want to see you on stage again, doing what you do best and love to do. Get well, be well, and know you are in our thoughts each step of the way.
Think of and pray for you all each and every day as the struggle continues. What a gift the opportunity for improved health is. Sending love and support always. Thank you for your updates.
life, love, and family. I'm thankful to be even a small party of yours. enjoy your holiday! xo
Poet- overcome with gratitude...yea, what he says! I'm smiling as much as you are....isn't it amazing?
Thank you for this wonderful update. I look forward to many more.
I've shared on my Facebook wall. I will share on Twitter as well.
I can't afford to donate, but I want to follow Kimberly's fight. I had no idea. Much love to all, Cerveris. I would love to be friends with Kimberly and/or her husband Ray, if possible. Be well. Sending all my love to all.
This campaign is going so well! Kimberly, your tribe of many has your back.