Dialysis Patient Quotes

A dialysis patient's life is hard. Laugh harder.

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Some older or very ill patients may not be suitable candidates for fecal transfer. Colonoscopy is an invasive procedure, especially for those patients who are too ill with other conditions like cancer, heart failure, dialysis, or Alzheimer’s.

Another possible solution would be to think about kidney exchange in a global way. There is virtually no kidney transplantation, and little or no access to dialysis, in places such as Nigeria, Bangladesh, and Vietnam, where kidney failure is a death sentence. Presumably, many kidney patients there have willing donors, but in a country such as Nigeria, for example, where fewer than 150 transplants occurred from 2000 to 2010, that willingness doesn’t do patients any good. But suppose we were to offer them access to American hospitals, at no cost? That may sound expensive, but it wouldn’t have to be—indeed, it could be self-financing. Remember that removing an American patient from dialysis saves Medicare a quarter of a million dollars. That’s more than enough to finance two kidney transplants, as well as postsurgical care and medicines. That money could pay for an exchange between an American patient-donor pair and, say, a Nigerian pair.

Robert had been under the care of a nephrologist for years prior to reaching end-stage kidney disease but didn’t hear about kidney transplant as an option until months after starting dialysis. Now in all fairness, few nephrologists would begin a conversation about kidney replacement options before the patient’s kidney function—their estimated glomerular filtration rate or eGFR, how fast the kidneys filter the blood—had fallen to 25 milliliters per minute, and the patient cannot be placed on the kidney transplant waiting list until kidney function reaches 20. The medical world tends to simplify the explanation of eGFR to patients as “percent function,” though 100 percent function of normal kidneys in a young person can be closer to 125 milliliters per minute, so a more accurate and easier-to-understand explanation would be that we start out with about half a cup, or 25 teaspoons, of blood flowing through our kidneys’ filters every minute. Using this analogy, nephrologists usually start talking about kidney replacement options when it has dropped to 5 teaspoons a minute, and a patient can be placed on the waiting list once his kidney function has dropped to 4 teaspoons a minute.

In December 2014, the Kidney Allocation System implemented a new rule that turned the key in the steerage lock: the waiting list date would be backdated to when the patient started dialysis rather than at the time of transplant evaluation. This was an important step toward minimizing the effect of human error on access to kidney transplantation.

But it didn’t go far enough. It didn’t go far enough because most people start dialysis when their eGFR is somewhere between 5 and 10. The difference between an eGFR of 20 and 10 alone can be several years for many patients. Years that could be spent accruing time on the kidney transplant waiting list. Sometimes so many years that a patient could potentially get a preemptive transplant—a transplant without ever having to go on dialysis.

It wasn’t until cyclosporine was discovered in 1976 that the balance between preventing rejection and avoiding infection greatly improved. That plus simultaneous efforts to figure out how to better match donors to recipients and the discovery of newer, better drugs over time has created the current reality in which more than two-thirds of all kidney transplants are still working after five years, while little more than a third of dialysis patients are still alive in that same time span. Some kidney transplants last twenty, thirty, forty, even fifty years.

When I think of Mr. Madani now, I am reminded of a joke I heard sometime after I was involved in his care: An oncologist walks into a funeral home, looking for his patient. The casket is closed. He opens it and is surprised to find it empty. “Where is my patient?” he asks the attendant. “I wanted to give him one more round of chemo.” “Oh, they took him to dialysis,” the attendant replies.

Though I wasn’t aware of it at the time, a small but growing body of research supported my intuition. It showed that patients similar to Mrs. Lee—over seventy-five and with serious medical problems in addition to advanced kidney disease—were as likely to live as long without dialysis as with it and often with a better quality of life. This research comes mostly from the United Kingdom, where about 15 percent of elderly patients with end-stage kidney disease die without ever starting dialysis. They have programs in place to provide conservative management—treatment aimed at minimizing symptoms of kidney failure while maximizing the quality of life remaining without dialysis.

A 2009 study published in the New England Journal of Medicine showed that almost two-thirds of elderly nursing home patients were in worse shape—either less able to take care of their own basic needs or dead—within just three months of starting dialysis, suggesting that treating such patients with dialysis was in direct violation of one of medicine’s guiding principles: primum non nocere, first do no harm.

As a fellow in the pre-dialysis clinic, what I observed for how to have discussions with patients approaching end-stage kidney disease seemed consistent with the monolithic, unquestioning agenda implied by the clinic name. The response to patient hesitation toward dialysis or outright refusal of it often felt threatening, coercive, even bullying to me. “Start dialysis or you’ll be dead in two weeks.” “You have a responsibility to your grandchildren to be here.

We get paid much more to keep someone on dialysis than to keep them off of it. If we don’t achieve dialysis metrics—like avoiding dialysis catheters or providing a certain dose of dialysis—known to best result in long-term benefits, we are financially penalized. But create a fistula in a little old lady that usually requires interventions to make it work and keep it working and make her stay on the dialysis machine as long as it takes for the numbers to look right, then essentially get a bonus. If we see an in-center hemodialysis patient four times in a month, we stand to make 50 percent more money than if we only saw her once. And the nephrologist really only has to see the patient once each month—if a physician assistant sees the patient the other times, we still get paid. We would have to document a comprehensive medical history and examination over the better part of an hour with a patient returning to clinic twice to see the same money—and good luck trying to justify why that was clinically necessary to do. The second, third, and fourth in-center hemodialysis patient visits can be more like drive-bys—a simple documentation that we (or the physician assistant) “saw” the patient, with no notation of time required. Private insurance companies and the Medicare ESRD program pay top dollar for dialysis care, not clinic visits. It’s profitable to build another dialysis center, but we haven’t figured out how to build comprehensive outpatient palliative care services.

It is our inability to accurately predict when people will die that usually keeps us from preparing patients for death. In one survey of dialysis patients published in the Clinical Journal of the American Society of Nephrology in 2010, less than 10 percent reported that any doctor had ever discussed prognosis with them.

While tools to estimate prognosis among dialysis patients and tools to estimate prognosis among patients with advanced kidney disease are in development, without a crystal ball it is doubtful that any tool will ever have enough precision for nephrologists to feel assured of accuracy for the patient before us. However, since the vast majority of patients and families only have their experience with illness up to the present moment, our clinical knowledge and experiences with similar patients about what the future may hold are invaluable—and should be shared.

Yet published research studies suggest that patients and family members want to be given information about life expectancy, even if prognosis is poor. Others have shown that those engaged in shared (as in with input from their doctor), informed decision-making are more likely to make decisions about dialysis and end-of-life care consistent with their personal values—often resulting in preferences for less aggressive care and more conservative management.

For every five of our dialysis patients, one will die within the year. Yet we often don’t bother spending the time it takes to have conversations about what patients would want their care to be like at the end of their lives. Since dialysis can be a life-saving treatment in many circumstances, we develop a false sense that sudden bouts of illness serious enough to land our dialysis patients in the hospital are temporary when, truth is, dialysis cannot change the reality that the path of kidney failure is a continuous one toward death. A path that is littered with sudden illnesses and setbacks, and recovery is never back to the level of function that the person enjoyed before.

Fifteen years ago, Israeli scientists published a study in which engineers observed patient care in ICUs for twenty-four-hour stretches. They found that the average patient required 178 individual actions per day, ranging from administering a drug to suctioning the lungs, and every one of them posed risks. Remarkably, the nurses and doctors were observed to make an error in just 1 percent of these actions—but that still amounted to an average of two errors a day with every patient. Intensive care succeeds only when we hold the odds of doing harm low enough for the odds of doing good to prevail. This is hard. There are dangers simply in lying unconscious in bed for a few days. Muscles atrophy. Bones lose mass. Pressure ulcers form. Veins begin to clot. You have to stretch and exercise patients’ flaccid limbs daily to avoid contractures; you have to give subcutaneous injections of blood thinners at least twice a day, turn patients in bed every few hours, bathe them and change their sheets without knocking out a tube or a line, brush their teeth twice a day to avoid pneumonia from bacterial buildup in their mouths. Add a ventilator, dialysis, and the care of open wounds, and the difficulties only accumulate.

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Please understand, Conception of a Dialysis Patient (the untold truths), is for those who have never crossed over, and experienced this world first hand. Tethered to a machine for survival, takes an emotional toll, yes on the patient, but family and friends as well. Anyone who draws breath needs to take this expedition. Dialysis patients, unfortunately, know their untold truths, so this may simply be confirmation of sorts, acknowledgement of their not being alone. This is the point of view of one patient, not a physician. I ask that you and others hear our voices. As the creator of the opus, I have firsthand experience. Removed from the machine, with my second transplant of a lifetime, I am certainly blessed. My objective is to open everyone’s eyes and minds, especially those of you who never been tethered to a dialysis machine. From my perception, you will value the emotional charge, and destruction dialysis forces upon patients, and their families. Again, the goal is to enlighten, in a manner that is sure to linger, and have you examining your own predicaments. I so appreciate you passing the word, Please take that breath with us… -Fayton

Please understand, Conception of a Dialysis Patient (the untold truths), is for those who have never crossed over, and experienced this world first hand. Tethered to a machine for survival, takes an emotional toll, yes on the patient, but family and friends as well. Anyone who draws breath needs to take this expedition. Dialysis patients, unfortunately, know their untold truths, so this may simply be confirmation of sorts, acknowledgement of their not being alone. This is the point of view of one patient, not a physician. I ask that you and others hear our voices. As the creator of the opus, I have first-hand experience. Removed from the machine, with my second transplant of a lifetime, I am certainly blessed. My objective is to open everyone’s eyes and minds, especially those of you who never been tethered to a dialysis machine. From my perception, you will value the emotional charge, and destruction dialysis forces upon patients, and their families. Again, the goal is to enlighten, in a manner that is sure to linger, and have you examining your own predicaments. I so appreciate you passing the word. Please take that breath with us -Fayton

If you’re reading this you’re already blessed, not that you’re receiving something special, it’s more that you have the existence of sight aiding you. Take a moment to be thankful for what you’ve received, and I’m not speaking in the materialistic vain, but rather for what we undervalue. Be grateful for your ability to take that first breath every morning, to place both feet on the ground and stand, be thankful… Be thankful for the people in your life right this very moment, and those that communicate with you via the internet. Be thankful for the time already spent on this planet, and for what’s to come. I’d like you to stop whatever it is you’re doing this very second, and take a moment for self reflection. That unexpected jolt of reality that life hit’s us with during a crisis or when accolades are given is powerful. None of that is happening right now, so this is the time to show gratitude, and share a moment with no one else but you. Just take a moment and be thankful. What am I most thankful for?... I’m most thankful for doing the best I can with what I’ve got, because I’m cradled in blessings.

Dialysis facilities were another site where vulnerable patients congregated and where the impact of COVID was especially brutal. Dialysis patients suffered a higher rate of hospitalization for COVID disease than any other group in the Medicare program.

It is truly a miserable process. In addition to being confined to a chair for four hours three times a week, many patients feel lousy during and after the sessions, with symptoms that include fatigue, coldness, headache, and muscle cramps. After dialysis, patients will often spend the rest of that day lying in bed. As many patients have described it to me, dialysis keeps you alive but is no way to live. But then again, what’s the alternative?

contamination of foods with heavy metals and include the intentional inclusion of toxic substances in products for mass consumption. “The result is what you see unfolding around you right now: mass insanity, incredible escalations of criminality among political operatives, clinical insanity among an increasing number of mainstream media writers and reporters, widespread infertility in young couples, skyrocketing rates of kidney failure and dialysis patients, plus a near total loss of rational thinking among the voting masses,” he said.

[...] For me Mr. Madani was a lesson in how peculiar medicine can be. It is a place where we fool ourselves into thinking that we can somehow get out of life alive and where dialysis is a means to no end. It is a place where the teaching of dialysis practice becomes more permissive within a two-year fellowship stint, more variable from nephrologist to nephrologist. Dialysis has gone from a miracle to something mundane but to be avoided at all costs to the thing we Americans-no matter if rich or poor, Black, Brown, Yellow, or White-cling to, because it holds the promise of more time. We-providers across specialties, patients, and families-begin to expect it, feel entitled to it, demand it, and we won't let go of it, even when it doesn't make sense, even when all it really guarantees is more suffering.

As a fellow in the pre-dialysis clinic, what I observed for how to have discussions with patients approaching end-stage kidney disease seemed consistent with the monolithic, unquestioning agenda implied by the clinic name. The response to patient hesitation toward dialysis or outright refusal of it often felt threatening, coercive, even bullying to me. "Start dialysis or you'll be dead in two weeks." "You have a responsibility to your grandchildren to be here." "If you refuse to start dialysis, then you will be discharged from this clinic.

That very month, at the St. Louis Children’s Hospital, two young patients experienced strange and alarming symptoms. As they underwent dialysis, a lifesaving procedure to filter blood for those whose kidneys don’t work properly, the patients’ eyes started swelling, their heart rates escalated, and their blood pressure dropped. These were signs of a life-threatening allergic reaction. Dr. Anne Beck, the director of the nephrology unit, directed her staff to wash out the tubing with extra fluid before hooking the children back up to the dialysis machines. For the next two months, everything seemed fine. But in January 2008, the symptoms struck again. Beck contacted an epidemiologist specializing in children’s infectious diseases who immediately assembled a command center where a team worked around the clock to uncover the cause of the strange reactions. But as more children succumbed and the staff grew frightened, the epidemiologist notified the Centers for Disease Control and Prevention. The CDC immediately contacted dialysis centers in other states and learned of similar reactions elsewhere. As the CDC and the FDA began a joint investigation, their efforts pointed to a common denominator: all the sickened patients had been given heparin made by the brand-name company Baxter, the nation’s biggest heparin supplier. It was a drug that patients took intravenously during dialysis to ensure that they didn’t suffer blood clots. Within weeks, Baxter—at the FDA’s urging—began a sweeping series of recalls, until finally the allergic reactions stopped. Yet