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.
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."
"When my weight hit 95lbs. for the first time since middle school, a month before being moved to Cleveland Clinic, I asked photographer Edward Carter Simon to help me document where my body had decayed to so as I work to recover, even small progressions would be easier to see and place faith in. With 22% of my total body weight lost, the ribs protruding pulled my skin so tight it felt like my torso would tear open. My tailbone was chronically bruised from sitting on skin and bone only, and the skin pulled over the visible hip bones had become so thin and papery from malnutrition it would split and bleed like dried out fingertips during a brutal winter. We replaced my underwear and pants with children's sized clothes so they would stop falling off when I stood up.
Tonight we leave home again for 6 more weeks of testing, treatment, and the hope doctors can find and fix why my body stopped accepting and digesting food. I'm 10lbs heavier than the day this photo was taken. My skin has stopped tearing and the bruises are gone, but we still have no solid answers and no treatment plan. It is daunting to leave home, be isolated, and not have an idea of when or how this will end, or if there will be a life and people to come home to.
I am so grateful for this photo, and the others that Edward documented. In the editing, he managed to capture and make visible to others what hides under clothes and closed doors, the fire of nerve and organ pain that cannot be seen or controlled, the isolation of stumbling alone in what seems like infinite darkness searching for a way to survive, and the moments that swing between warm hope and the silent terror that comes from being awake, alive, and alert for every moment of literal starvation.
To all the friends we didn't get to see this trip home, know we did want to see you--heart willing, flesh weak. For those who aren't friends, I hope Edward's remarkable work as an artist continues to educate us all that we never know what is hiding in a person's body, behind their clothes or smiles or makeup, what a fellow human being and those they love may be fighting this lifetime.
Be kind to each other and strangers. Avoid labels and anger that make empathy for strangers impossible. Life is too short and difficult as it is. And...someone give Edward Simon a gallery show already. His work is important, beautiful, painfully real, and deserves to be seen."
#fighton #invisibleillness #gastroparesis #totalgutdismotility #autoimmune #wellness #portraiture #kindness #lifeanddeathinAmerica #patmalfoyleaves #medicalrefugee #ClevelandClinic
So. This is the state of things, presently. One choice from here would be going somewhere else—Kim’s Power Fairy Godmothers B.A. and P would be advocating for Kim to stop being neglected. The issue with transferring, of course, is that by the time Kim got a bed and got up to speed with another specialist and new hospital, it would probably be the same week or month her treatment is (finally) now scheduled to start in Cleveland. So, staying might be the better first option (but with concerted efforts to get the Clinic to stop failing their patient). If they continue to mess things up in March, then Kim would rethink the whole plan, CC should be scrapped and at that point she would go to NYC or Mass or Mayo if she can.
Of course, all this comes with a cost, so we will continue to leave the GoFundMe appeal open, deeply grateful for everything that has been contributed so far, but also acknowledging that there are a lot of travel expenses and medical costs that will continue to mount for some time to come. If anyone has air miles to offer, they could be a great help. And continuing to share this appeal and extend its reach would be very welcome. ALSO, if anyone needs or can suggest work that Ray, an accomplished graphic designer, could do remotely while continuing to be Kim’s Primary Caregiver, that would be an enormous help. He’s a very hard worker and grateful for any kind of work.
Here's a breakdown of why money problems and idiopathic gastroparesis--a failure of the intestines and vowel so painful it is described as on par with labor pains and cancer--are so challenging. Treatment is two-pronged: Kim must start a dangerous "prokinetic" drug called Propulsid to try and jump start her small intestine. The medication can cause such serious cardiac side effects that she must be evaluated and checked every 6-8 weeks, in Cleveland, by the Gut Rehab and Nutrition teams. She is only allowed to be check IN Ohio. The medication is also so controlled it can ONLY be picked up in Ohio from CC, which means every time it's time for a refill, Kim will have to drive or fly to Ohio to collect it. At the same time, she has been placed on the review list for intestinal surgery by CC's Gut Restoration and Transplant Team. When her number is called for surgical review, which can happen anytime in the next 4 months, she needs to immediately report to the surgical team at CC for at least a week's worth of grueling GI, motility, nutrition, and psychological testing. Surgical options could range from as "simple" as a gastric pacemaker being installed, or as complicated as small intestine amputation, intestinal re-sectioning, or eventually even intentional transplant. If surgery is the correct option, Kimberly and Ray will both need to live in Cleveland for the surgery and all subsequent rehab. The combination of the medicine and surgical tracks mean Kim could be required to live in Cleveland for weeks or months at a time with little notice, every few weeks...requiring funds to travel, find short or long-term housing, pay for food and transportation to and from the hospital's numerous centers, cover those medical equipment and medicine costs that are not covered by insurance, and maintain their monthly health insurance premiums. And the hospital bills themselves as well. It adds up to tens of thousands of dollars in the first 6 months. After that, IF she responds to medicine and nutritional treatment, she will still be required to fly or drive to Cleveland every 12 weeks for the next year for monitoring.
On her own, Kimberly still needs to find and pursue mental health counseling, non-medication pain management, and holistic health support to balance the many treatments and chemicals being thrown into her system while she is unable to eat--CC inexplicably offers no support groups or mental health counseling for chronically and critically ill patients.
If she does not pursue all medical and surgical options until a solution is found, TPN can keep Kimberly alive for 10+ years--but she will remain 30something and unable to eat, drink, urinate, move her bowels, engage in sexual intercourse, work, start a family, live a single day pain free, or wean off the 14-hours of DAILY bagged nutrition infusions which keep her attached to an IV pole and put her at risk for sepsis and stroke. In other words, she will have no way to live anything approaching a life she wants to live, with little opportunity to contribute to the world in a way that she could find meaningful.
I’m sorry the news is so bleak. This is not the update Kim, Ray or I wanted to be writing now. And frustrating as it is for all of us to read and hear, it’s that much worse, of course, for Kim. She finds it profoundly difficult to continue to be asking for the help and kindness of friends and strangers and is grateful beyond expressing for all that people have done. Please don’t feel bad if you’ve given all you can, and know it is more than kind. And if you find you can give again at any point, know that the need continues to be great and the gratitude continues to be profound.
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.