DX R62.7 Healthcare Travesty

Recently a young friend’s husband died and she felt as if she was living on the edge of two lives. One where she was pretending she was doing fine and one where she could barely get out of bed. People moved about their lives as they should be, however she felt as if she was surrounded by a dark veil of sorrow. Places that he had touched; the television, the radio, the telephone, the alarm clock; all fell silent. Deafening stillness – almost unbearable. He fought Myelodysplastic Syndrome briefly yet those months seemed like a year or merely minutes. The chemo drugs did nothing but made him sick and his blood counts were no better after all that misery. His demise was quickened by the entanglement of mismanaged healthcare and the corporate bottom line without regard for his precious human life.

It’s a tough lesson and you are on an island alone and humanity is just within reach. We just don’t know what others have been through. What is their personal dilemma? What anguish have they experienced? All we know is our own page in this book that hasn’t yet been penned. We know this is agony and we wonder when the distress will end.

The pain and fear and longing for our lost loved ones will remain forever; and sometimes our loved ones are alive as we the family endure their illness together while the healthcare system, a dysfunctional bureaucracy bungles their care.

Those of us fighting against the survival clock not only for our family member, but for our own sanity wear our sorrow like a badge and linger through our existence with determination, resentment, anger, regret, and even surrender. The idea is not to apologize for this major glitch in our lives. Our people; co-workers, extended families, and friends must accept us as we are; naked in our vulnerability. In the absence of acceptance we must walk away because our survival and stability are limited only to ourselves and those who cling to us, supporting us, holding back the tsunami of fear, rage, and intense loss. We are self-absorbed in our grief and we own it making no excuses for it. This is not a negotiable process.

This dialogue is intended for those of us on the fringe of patient advocacy, and caregiving for those diagnosed with Myelodysplastic Syndrome (MDS), a complicated, evil blood disease whose victims suffer with or without treatment or transplants. The experience is surreal as we watch our beloved husbands, wives, children or friends succumb to this disease. It’s not so much the disease, but the treatment, the chemo burrowing through the body, and the stem cell or bone marrow transplants may be successful but what follows is like a living bereavement; Chronic Graft versus Host Disease (cGVHD). The cure can kill. And in the morass of this disease are medical professionals and so called “specialists” who understand less about the protocol than the advocates about how MDS and especially cGVHD should be treated.

As advocates and caregivers we feel as though we have been propelled into an upside down world after diagnosis. When my husband Lester received his MDS diagnosis, I felt as if someone had punched me in the stomach. Suddenly all voices were inaudible, the examining room was glaringly bright and the doctor’s embroidered name on his white coat seemed to be animated. I excused myself from the room because I could feel my intestines ready to give way and rushed to the bathroom where I stood for several minutes staring into the mirror hoping this was happening to someone else.

Since that January day in 2014 I have learned much about MDS and cGVHD from my exhaustive research, speaking with patient’s family members and physicians who are specialists as well as from Facebook support groups and the MDS Foundation at www.mds-foundation.org.

I am not a doctor, but one should know that cGVHD is insidious in the sense that it can come on gradually in some patients causing breathing problems leading to Bronchiolitis Obliterans (popcorn lung), it may cause sores in the mouth, it can affect the liver, stomach, intestines and in Lester’s case it affected not only his skin and turned it sclerotic, he developed severe dry eye and now can barely see due not only to the dry eye issue, but also because the heavy chemo he received right before transplant resulted in cataracts.

Many patients will be prescribed high doses of steroids to thwart cGVHD and then slowly wean off the steroids as symptoms improve. Sometimes they never improve and the patient continues having mild symptoms or devastating symptoms as in Lester’s case. The cGVHD affected his ability to swallow and he hasn’t eaten solid food in over a year and has been receiving nutrition through a j tube inserted into the intestine. Also, because his skin became so thin he developed stage 4 decubitus bed sores infected with bacteria found in soldiers who return from war. That bacteria known as Acinetobacter is notorious for wiping out whole populations. In order to prevent reinfection of his bedsores, he was fitted with a diverted ostomy designed to prevent contamination. Patients like Lester must be isolated and anyone coming in contact with him must wear gloves and gown.

As Lester was having surgery for the j tube feeding he was intubated and was never off a ventilator again as his lung function diminished quickly. He also contracted pneumonia and a pseudomonas strain of bacteria which is equally as deadly. Miraculously he survived.

I also learned that it is important to have the stamina one needs to run this marathon to either recovery or demise. As an advocate I keep ahead of the medical arena in which I am not a victim, but rather a warrior. Shalimar and I have fought a battle for Lester’s survival since this all began in 2014.

We are warriors against DX R62.7. This diagnosis code represents a “failure to thrive” and the City of Chicago from which Lester retired after 30 years of devoted service, believes this diagnosis is reason enough to end Lester’s life. The City of Chicago’s bottom line is money, and the high cost of Lester’s healthcare is a burden on their books and the medical services advisor that contracts for the city, Telligen, located in West Des Moines Iowa does their dirty work in accordance with Blue Cross/Blue Shield Blue Option.

Blue Cross, the City of Chicago and Telligen are attempting to terminate Lester’s care which will prematurely end his life. We recently received a denial of care letter stating a diagnosis of R62.7, failure to thrive as justification to condemn Lester to death in order to save costs for the City of Chicago. My daughter and I interpret this as illegal euthanasia. These are harsh realities when bureaucrats try to override a physician’s treatment plan for a patient.

Over the past 3 years, we have fought with the City, the insurance and those who believe they can make life and death decisions based on spreadsheet data without ever knowing the patient, particularly in Lester’s case, as he is medically complex and unique in his healthcare requirements.

Refusing to allow his care to be compromised in the interest of cutting costs, we will take this fight to the doors of City Hall, the Chicago Benefits office, and at Telligen’s headquarters in Iowa. We are exhausted from the dozens of telephone calls, emails and letters written to Illinois Congressman, Senators, the State’s Attorney’s office, local Chicago television outlets, Telligen CEO, Jeff Chungath, the Illinois Department of Public Health, The Illinois Insurance Commission and even President Trump as well as other government officials as we plead for help and support in this matter of Lester’s continued care. Last year we established a Go Fund Me page to raise funds to cover costs to hire a private attorney to file appeals due to denials of care from Telligen. Unfortunately the campaign did not attract many contributors and we paid thousands in out of pocket attorney’s fees. Our reach out efforts has resulted in nothing; no response. Dead air. My cynical self believes that if Lester were a 10 year old child suffering from the same illness, more people would be crawling out of the woodwork to assist him in his crusade. It is what it is I suppose and we must carry on.

Shalimar and I have won some major battles yet the war against this healthcare travesty continues and most of it is without my husband’s knowledge. He too is waging his own war in an attempt to recover, and he refuses to let anyone mandate his departure from Earth. It’s in God’s hands he says and I will not dispute that belief because where there is God, there are miracles.

When it all slows down and there is quiet we feel the wrenching pull between two realms – illness/grief and hope/recovery. We will not let down our guard for fear of missing a beat in Lester’s care. We search for the “normal”. What was that again? Normal? The skewed sense that balance is imminent, waiting in the wings, just out of reach.

For those of us whose loved ones haven’t passed into the next world, we still grieve for the life not shared. Even though Lester is surviving, he is not living the life we knew together. In fact, to me, it feels like death. A living death is what I call it. I’m married to a man who is not in my presence, not holding my hand, not comforting me, not killing spiders, taking out the garbage, washing the dishes, folding the laundry or bringing in the mail. I don’t hear him shuffling cards in the next room as he plays solitaire (which I always jokingly accused him of cheating). I miss his mishaps with the Mr. Coffee maker as scalding hot liquid would spill over the counter’s edge onto the floor when he would forget to replace the carafe on the burner. The Keurig solved that problem. He’s not sitting on the edge of the bed reading me to sleep and most importantly to him, he is not attending daily mass nor praying the Stations of the Cross in the St. Hyacinth Basilica in Chicago’s Logan Square area.

Instead he suffers from post-transplant cGVHD which has attacked his skin, eyes, lungs and ability to swallow and is in and out of hospitals and rehabilitation facilities and now is receiving 24/7 home care while Shalimar advocates for him in our Chicago home. As lives turn upside down, hers has turned inside out and backwards all at the same time. Between us both we have kept this ship afloat while scrambling to bail out after each storm of hospitalization or near death calamity mainly due to bureaucrats interfering with Lester’s care.

We both deal with this chaos as we continue to live our lives as best we can at our jobs, advocating, managing a family, and running a business. I work in Grand Rapids Michigan and travel back and forth 300-500 miles every weekend in rain, wind, sun or snow just so that I can spend a few hours holding Lester’s hand and laughing about what happened that week at work.

Patient advocacy is an uphill climb when it involves your own family member. When one advocates there are constant questions demanding answers seeking to solve the daily issues that arise for a medically complicated patient which Lester is. He is unique in the sense that his illness robbed him of his strength, eyesight, lung reserve, skin elasticity, movement and speaking and eating. As his advocates, Shalimar and I are in combat for his life every single minute of every single day. We won’t give up and we will never give in to the cure which deprived him of his freedom. And we will never give in to Telligen, the City of Chicago or the insurance provider.

When I say I am not a doctor, I mean it in the sense that I have no formal training; however, as an advocate for just one patient, both my daughter and I became experts in the care and treatment of our patient. And so have many others become experts; at times they know more than the physicians do. I learned that one must always ask questions and when there are no answers from the professional expert, go research it yourself and don’t stop until you have the answer you believe to be the best one for your patient.

I often inquired of those who have a loved one who experienced a tragic blood cancer and it after effects and what was the outcome. One friend told me that it was a personal journey. She said we come into this world one at a time and she thought God controlled it all, but her youngest daughter taught her otherwise; that God gives us free will and in that will is born our will to live, to thrive, and yes, and even to die.

She stated that a person’s will is respected by the Lord, he doesn’t go back on his promise to have given that will to us. She said doctors thought her daughter wouldn’t survive more than a few hours, a week at the most. She knew her daughter had other plans as she told her as much. She told the doctors that she was not dying yet. Her daughter lived for 9 more months in a manner that some shunned her for supporting because she was in a great deal of pain, discomfort, maybe even outright agony, but she wasn’t in despair. She had hope that she would pull through it, that healing would prevail.

Until the moment that she chose to surrender her life to the Lord, she lived here on earth, alive, on a ventilator and IV’s, with tubes, with bed sores and pain. But she left this earth on her terms. For her, there was no Telligen or municipality dictating how she was going to die. She said her daughter was the strongest woman she ever knew. She believed that one’s will is a durable choice, a personal contract between them and the creator. In other words, it is for no one else to choose or decide what’s best.

From Lester’s perspective, he believes his suffering is redemptive and I will not argue that point with him. His faith remains intact and even though he cannot walk 4 feet without assistance, he still can pray in the confines of his mind; for the sick and suffering in the world. I wonder if that was God’s plan all along.

So this wise woman told me that even though he is in physical misery, I should not mourn him while he is here on Earth and don’t pity him for his condition, just love him every minute I can despite the despicable intrusions and denials of care for a man who paid into the system for 30 years and was promised healthcare until he reached the age of 65.

So much insight is available on various support groups and most are on Facebook. That’s one bright spot in social media that one can reach out and find someone who is experiencing the same challenges. It’s not face to face support, but then again, when one is thirsting for a drink of sanity in spite of the chaos, virtual support groups are helpful.

Finally human life is not disposable and Lester’s life is a gift to all who know him, a celebration of endurance, love and and will continue to be so with my daughter and me at his side. We will defy this healthcare travesty. We challenge DX R62.7