Category Archives: Kidney Disease

Kidney Disease — A Quiet, Sneaky Epidemic. Are You At Risk?


By Bob Aronson

You are what you eatAs I did the research for this blog, I “Cherry Picked” information from a great many sources.  I am not a medical professional, but made every effort to ensure that the information I used came from experts.  I have identified sources where possible. 

This is a blog, it is made up of a good many opinions.  You should not make decisions about your health based on this or any other posting or even your own research. Only a highly skilled, educated and experienced physician can do that.  Blogs like this can only offer you general information.  As you read this remember that no two people are exactly alike.  What works for one person may cause serious damage to another even though they share similar characteristics.  Your health is too important to be left to chance.  It should be managed by a qualified physician who can focus on your specific condition, examine you, call for appropriate tests, diagnose and then develop a treatment program to meet your unique needs.

Kidney disease is disabling and killing us and no one seems to be paying attention.   To get yours I am going to start this post with some startling, even shocking facts.

  • Chronic kidney disease can lead to kidney failure, heart attack, stroke and death. In factkidney graphic, kidney disease is the nation’s ninth leading cause of death
  • 26 million Americans have kidney disease (many of whom don’t yet know it) and an additional 76 million are at high risk of developing it.
  • Of the 122,000 people on the national organ transplant waiting list about 100,000 are waiting for kidneys and there are not enough to go around.
  • Nearly a half million Americans are getting dialysis and the number is growing rapidly.
  • Diabetics are in the greatest danger of developing kidney disease and The American Diabetes Association says 25.8 million of us have it, that’s 8.3 percent of the U.S. population. Of these, 7 million do not know they are diabetic.
  • And – a final startling fact.  Kidney disease kills 100 thousand Americans a year, that’s more than prostate and breast cancer combined, but kidney disease gets nowhere near the publicity or concern of those two malignancies.

 

Got your attention?  Ok…there’s a lot more to come but first let’s define the topic. – just exactly what do kidneys do and what is kidney disease?  Here’s what the National Kidney Foundation says:

The kidneys are bean-shaped organs, each about the size of a fist. They are located just below the rib cage, one on each side of the spine. The kidneys are sophisticated reprocessing machines. Every day, a person’s kidneys filter about 120 to 150 quarts of blood to produce about 1 to 2 quarts of waste products and extra fluid. The wastes and extra fluid become urine, which flows to the bladder through tubes called ureters. The bladder stores urine until releasing it through urination.”

 So what is kidney disease?  The Mayo Clinic offers this explanation:

Chronic kidney disease, also called chronic kidney failure, describes the gradual loss of kidney function. Your kidneys filter wastes and excess fluids from your blood, which are then excreted in your urine. When chronic kidney disease reaches an advanced stage, dangerous levels of fluid, electrolytes and wastes can build up in your body.

In the early stages of chronic kidney disease, you may have few signs or symptoms. Chronic kidney disease may not become apparent until your kidney function is significantly impaired.

Treatment for chronic kidney disease focuses on slowing the progression of the kidney damage, usually by controlling the underlying cause. Chronic kidney disease can progress to end-stage kidney failure, which is fatal without artificial filtering (dialysis) or a kidney transplant.”

Causes of Kidney Disease

What causes Kidney disease?  First let’s define terms.  There’s ESRD (End Stage Renal Disease or Kidney failure), where the organs just quit working and there is CKD (Chronic Kidney Disease) which can lead to kidney failure.  The causes could be many but the most common are diabetesDiabetes and High blood pressure.  There are concerns, too, that some environmental factors may also contribute to both CKD and ESRD.  Sri Lanka, for example, has banned Monsanto Corporation’s “Roundup” herbicide on the grounds that it causes both kidney maladies.  Monsanto says its studies offer convincing evidence that the charges are not true.

What to do about it

Much is known about who faces the greatest risks of developing chronic kidney disease and how it can be prevented, detected in its early stages, and treated to slow or halt its progression. But unless people at risk are tested, they are unlikely to know they have kidney disease; it produces no symptoms until it is quite advanced.

Even when it is not fatal, the cost of treating end-stage kidney disease through dialysis or a kidney transplant is astronomical, more than fivefold what Medicare pays annually for the average patient over age 65. The charges do not include the inestimable costs to quality of life among patients with advanced kidney disease.

Much is known about who faces the greatest risks of developing chronic kidney disease and how it can be prevented, detected in its early stages, and treated to slow or halt its progression. But unless people at risk are tested, they are unlikely to know they have kidney disease; it produces no symptoms until it is quite advanced.  And…it appears as though it is quite common that many physicians overlook simple tests that could save lives.  For example, high blood pressure, is a leading cause of kidney failure yet many physicians don’t check to see how well vital organs are functioning.  Patients, then, have to be their own advocates and insist on tests to see what effect diabetes and/or high blood pressure are affecting their organs. For some reason kidney disease often is not on the medical radar, and in as many as three-fourths of patients with risk factors for poor kidney function, physicians fail to use a simple, inexpensive test to check for urinary protein.  So, our message to you is simple…make sure your doctor checks the amount of protein in your urine at least once a year.

A study published in April online in The American Journal of Kidney Disease demonstrated how common lifestyle factors can harm the kidneys. Researchers led by Dr. Alex Chang of Johns Hopkins University followed more than 2,300 young adults for 15 years. ParticipantJohns Hopkinss were more likely to develop kidney disease if they smoked, were obese or had diets high in red and processed meats, sugar-sweetened drinks and sodium, but low in fruit, legumes, nuts, whole grains and low-fat dairy.

Only 1 percent of participants with no lifestyle-related risk factors developed protein in their urine, an early indicator of kidney damage, while 13 percent of those with three unhealthy factors developed the condition, known medically as proteinuria. Obesity alone doubled a person’s risk of developing kidney disease; an unhealthy diet raised the risk even when weight and other lifestyle factors were taken into account.

Overall, the risk was highest among African-Americans; those with diabetes, high blood pressure or a family history of kidney disease; and those who consumed more soft drinks, red meat and fast food.

Dr. Beth Piraino, president of the National Kidney Foundation, said, “We need to shift the focus from managing chronic kidney disease to preventing it in the first place.”  And one of the ways to prevent kidney disease is to live healthier.  I know, no one wants to hear those words, “Live Healthier.”  Ok, I won’t use them again, but if you eat right and get the right kind and amount of exercise you can avoid kidney problems.  Want some good recipes and ideas for weight control?  Try this link  http://www.kidney.org/patients/kidneykitchen/FriendlyCooking.cfm

You are at greater risk of having kidney disease if others in your family have it or had it, genetic factors are important, but in addition you should know that African-Americans, Hispanic Americans, Asian-Americans and American Indians are more likely than white Americans to develop kidney disease.  I have been unable to find out why.  One Doctor said that prevention is the key and that it is not very complicated.  “I wouldn’t have to work so hard if they didn’t smoke, reduced their salt intake, ate more fresh fruits and vegetables, and increased their physical activity. These are things people can do for themselves. They involve no medication.”

Physicians also urge patients with any risk factor for kidney disease to be screened annually with inexpensive urine and blood tests. That includes seniors 65 and above, for whom the cost is covered by Medicare. Free testing is also provided by the National Kidney Foundation for people with diabetes.

The urine test can pick up abnormal levels of protein, which is supposed to stay in the body, compared with the amount of creatinine, a waste product that should be excreted. The blood tUrine testest, called an eGFR (for estimated glomerular filtration rate), measures how much blood the kidneys filter each minute, indicating how effectively they are functioning.

If it is determined that you have kidney disease you should be referred to a nephrologist.  If you are not referred, ask for a referral.  The Nephrologist will work closely with your family physician to help control the disease.

There are two medications commonly used to treat high blood pressure that often halt or delay the progression of kidney disease in people with diabetes: ACE inhibitors and ARB’s (angiotensin receptor blockers). Careful control of blood sugar levels also protects the kidneys from further damage.

As I conducted the research for this blog I found that one of the most comprehensive websites for factual, understandable information about Kidney Disease is India’s “The Health Site.” It also contains a good deal of advertising and other questionable material, but its information on the kidneys and kidney disease is backed up by solid research.  What follows is some of it.  http://www.thehealthsite.com/

12 Possible Kidney Disease Symptoms

Even an unhealthy lifestyle with a high calorie diet, certain medicines. lots of soft drinks and sugar consumption can also cause kidney damage. Here is a list of twelve symptoms which could indicate something is wrong with your kidney:

  1. Changes in your urinary function: The first symptom of kidney disease is changes in the amount and frequency of your urination. There may be an increase or decrease in amount and/or its frequency, especially at night. It may also look more dark coloured. You may feel the urge to urinate but are unable to do so when you get to the restroom.
  2. Difficulty or pain during voiding: Sometimes you have difficulty or feel pressure or pain while voiding. Urinary tract infections may cause symptoms such as pain or burning during urination. When these infections spread to the kidneys they may cause fever and pain in your back.
  3. Blood in the urine: This is a symptom of kidney disease which is a definite cause for concern. There may be other reasons, but it is advisable to visit your doctor in case you notice it.
  4. Swelling: Kidneys remove wastes and extra fluid from the body. When they are unable to do so, this extra fluid will build up causing swelling in your hands, feet, ankles and/or your face. Read more about swelling in the feet.
  5. Extreme fatigue and generalised weakness: Your kidneys produce a hormone called erythropoietin which helps make red blood cells that carry oxygen. In kidney disease lower levels of erythropoietin causes decreased red blood cells in your body resulting in anaemia.  There is decreased oxygen delivery to cells causing generalised weakness and extreme fatigue. Read more about the reasons for fatigue.
  6. Dizziness & Inability to concentrate: Anaemia associated with kidney disease also depletes your brain of oxygen which may cause dizziness, trouble with concentration, etc.
  7. Feeling cold all the time: If you have kidney disease you may feel cold even when in a warm surrounding due to anaemia. Pyelonephritis (kidney infection) may cause fever with chills.
  8. Skin rashes and itching: Kidney failure causes waste build-up in your blood. This can causes severe itching and skin rashes.
  9. Ammonia breath and metallic taste: Kidney failure increases level of urea in the blood (uraemia). This urea is broken down to ammonia in the saliva causing urine-like bad breath called ammonia breath. It is also usually associated with an unpleasant metallic taste (dysgeusia) in the mouth.

10. Nausea and vomiting: The build-up of waste products in your blood in kidney disease can also cause nausea and vomiting. Read 13 causes for nausea.

11. Shortness of breath: Kidney disease causes fluid to build up in the lungs. And also, anaemia, a common side-effect of kidney disease, starves your body of oxygen. You may have trouble catching your breath due to these factors.

12. Pain in the back or sides: Some cases of kidney disease may cause pain. You may feel a severe cramping pain that spreads from the lower back into the groin if there is a kidney stone in the ureter. Pain may also be related to polycystic kidney disease, an inherited kidney disorder, which causes many fluid-filled cysts in the kidneys. Interstitial cystitis, a chronic inflammation of the bladder wall, causes chronic pain and discomfort.

It is important to identify kidney disease early because in most cases the damage in the kidneys can’t be undone. To reduce your chances of getting severe kidney problems, see your doctor when you observe one or more of the above symptoms. If caught early, kidney disease can be treated very effectively.

http://www.thehealthsite.com/diseases-conditions/12-symptoms-of-kidney-disease-you-shoulnt-ignore-world-kidney-day-special/

Kidney Disease Prevention

Ten Steps you can take

 Our kidneys are designed such that their filtration capacity naturally declines after the age of 30-40 years. With every decade after your 30s, your kidney function is going to reduce by 10%. But, if you’re going to increase the load on your kidneys right from the beginning, your risk of developing kidney disease later in life will definitely be higher. To be on the safe side, follow these few tips and take good care of your kidneys to prevent the risk of developing kidney problems.

1. Manage diabetes, high blood pressure and heart disease: In most of the cases, kidney disease is a secondary illness that results from a primary disease or condition such as diabetes, heart diseases or high blood pressure. Therefore, controlling sugar levels, cholesterol and blood pressure by following a healthy diet, exercise regimen and medication guidelines is essential to keep kidney disease at bay.

2. Reduce the intake of salt: Salt increases the amount of sodium in diet. It not only increases blood pressure but also triggers the formation of kidney stones. Here are a few tips to actually cut down your salt intake.

3. Drink lots of water every day:  Water keeps you hydrated and helps the kidneys to remove all the toxins from your body. It helps the body to maintain blood volume and concentration. It also helps in digestion and controls the body temperature. At least 8-10 glasses of water a day is a must.

4. Don’t resist the urge to urinate: Filtration of blood is a key function that your kidneys perform. When the process of filtration is done, extra amount of wastes and water is stored in the urinary bladder that needs to be excreted. Although your bladder can only hold a lot of urine, the urge to urinate is felt when the bladder is filled with 120-150 ml of urine.

So, if start ignoring the urge to go to the restroom, the urinary bladder stretches more than its capacity. This affects the filtration process of the kidney.

5. Eat right:  Nearly all processes taking place inside your body are affected by what you choose to eat and how you eat. If you eat more unhealthy, junk and fast food, then your organs have to face the consequences, including the kidneys. Here’s more information on the relation between unhealthy diet and kidney damage.

You should include right foods in your diet. Especially foods that can strengthen your kidneys like fish, asparagus, cereals, garlic and parsley. Fruits like watermelon, oranges and lemons are also good for kidney health. 

6. Drink healthy beverages: Including fresh juices is another way of drinking more fluids and keeping your kidneys healthy. Juices help the digestive system to extract more water and flush out wastes from the body. Avoid drinking coffee and tea. They contain caffeine which reduces the amount of fluids in the body. So, the kidneys have to work harder to get rid of them.

If you’re already suffering from kidney problems, you should avoid juices made from vegetables such as spinach and beets. These foods are rich in oxalic acid and they help in the formation of kidney stones. But you can definitely have coconut water.

7. Avoid alcohol and smoking: Excess intake of alcohol can disturb the electrolyte balance of the body and hormonal control that influences the kidney function. Smoking is not directly related to kidney problems but it reduces kidney function significantly. It also has an adverse effect on heart health which can further worsen kidney problems.

8. Exercise daily: Researchers believe that obesity is closely linked to kidney related problems. Being overweight doubles the chances of developing kidney problems. Exercising, eating healthy and controlling portion size can surely help you to lose extra weight and enhance kidney health. Besides, you will always feel fresh and active. Here’s more about how obesity and kidney disease are linked.

9. Avoid self-medication: All the medicines you take have to pass through the kidney for filtration. Increased dosage or taking medicines that you are not aware of can increase the toxin load on your kidneys. That’s why you should always follow dosage recommendations and avoid self-medication. Read more about how drugs affect the kidneys. 

10. Think before you take supplements and herbal medicine: If you’re on vitamin supplements or if you’re taking some herbal supplements, you should reconsider your dosage requirement. Excessive amount of vitamins and certain plant extracts are linked to kidney damage. You should talk to your doctor about the risk of kidney disease before taking them.

Dialysis and Transplantation

By Ed Bryant

(I could find no additional information about Mr. Bryant other than the following website.  His information, though, is sound).

https://nfb.org/images/nfb/publications/vod/vow0006.htm

Dialysis

Dialysis is not an “artificial kidney.” A person undergoing hemodialysis must be hooked up to a machine three times a week, three to four hours per session. A normal vein cannot tolerate the 16–gauge needles that must be inserted into the arm during hemodialysis, so the doctor must surgically connect a vein in the wrist with an artery, forming a bulging fistula that will better accommodate the large needles needed for treatment.dialysis

Like the kidney, a hemodialysis machine is a filter. Where it uses tubes and chemicals, the kidney uses millions of microscopic blood vessels, fine enough to pass urine while retaining suspended proteins. Long–term high blood glucose can significantly damage the kidney’s filters, leading to scarring, blockage, and diminished renal function. Diabetes is the leading cause of kidney disease. Long–term diabetics often have cardiovascular and blood pressure problems, and the added strain of hemodialysis, with its rise in blood pressure straining eyes and heart function, can be too much for some. The diabetic dialysis patient spends, on the average, 33% more time in the hospital than does the non–diabetic dialysis patient, according to 1999 USRDS figures.

Some patients choose CAPD (continuous ambulatory peritoneal dialysis) or its variant, CCPD (continuous cycling peritoneal dialysis), both of which can be carried out at home, without an assistant. Unlike hemodialysis, which uses a big machine to remove toxic impurities from the blood, peritoneal dialysis works inside the body, making use of the peritoneal membrane to retain a reservoir of dialysis solution, which is exchanged for fresh solution, via catheter, every four to eight hours. CAPD is carried out by the patient, who simply exchanges spent for fresh solution, every four to eight hours, at home, at work, or while travelling. CCPD, its variant, makes use of an automated cycler, which performs the exchanges while the patient is asleep. Although more complicated and machine–dependent, it does allow daytime freedom from exchanges, and may be the appropriate choice for some. Though the risk of infections is heightened (as it is with any permanent catheterization), these two processes have advantages, one being that insulin can be added to the dialysis solution, freeing the patient from the need to inject, and giving good blood sugar control.

Transplantation

Kidney transplantation is a logical alternative for many. It substantially improves a patient’s kidney transplantquality of life. Although the transplant recipient must be on anti–rejection/ immunosuppressive therapy for life, with the inherent risk from otherwise nuisance infections, a transplant frees the patient from the many hours spent on hemodialysis procedures each week, or from the periodic “exchanges” and open catheter of CAPD, allowing a nearly normal lifestyle. For those ESRD patients who can handle the stresses of transplant surgery, the resulting gains in physical well–being add up to real improvement in quality of life and overall longevity.

“Fifty percent of all kidney transplantations taking place today are into diabetics,” states Giacomo Basadonna, MD, PhD, a transplant surgeon at Yale University School of Medicine, in New Haven, Connecticut. He reports that success rates are identical with kidney transplants performed on non–diabetic ESRD patients. “Today,” he advises, “average kidney survival, from a living donor, is greater than 15 years.”

One of the areas where we are seeing rapid improvement is immunosuppressive medication. The traditional mix of immunosuppressants: cyclosporine, prednisone, imuran, is giving way to more targeted medications that may have fewer side effects. Cellcept, by Roche/Syntex, and Rapamycin (Rapamune), by Wyeth/Ayerst, have been approved by the FDA, and others are being tested. The risk of organ rejection is always present, but each new development increases the chances of success.

I and others knowledgeable in kidney transplantation advise you to pick the best transplant center possible. Once you have read their statistics, ask your prospective center the following questions. If they don’t answer to your satisfaction, you should consider going to another center.

1. Do you have an information packet for prospective donors and recipients?

2. Can you put me in touch with someone who has had a transplant at your center?

3. What is your “graft survival” (success) rate?

4. Who will my transplant surgeon be? If a fellow or resident, will he/she be supervised by a practicing transplant surgeon?

5. How long have your current surgeons been doing kidney transplants? How many have they done? That your center has 35 years experience with kidney transplants is of little consequence if my surgeon has only done ten in his or her career.

6. What is the average post–operative stay in your hospital?

7. When I come for my transplant, or come back for follow–ups, will there be any affordable housing for me and/or my family? (Ronald McDonald House, or other lodging with discount rates…) or will I get stuck in a luxury hotel for $125 a night?

8. How often will I need to come back to the center for follow–ups? Can my nephrologist do the blood tests and send you the results?

9. Can you recommend a nephrologist in my area?

10. Do you have a toll–free number to call for after–transplant information?

11. What is your policy on people with insufficient health insurance? Will you work with an uninsured patient? What will it cost?

12. Are you prepared to satisfy my doubts? Will you show me the documents that answer my questions? Will you guarantee the price quoted?

Conclusion

Kidney disease can be manageable if caught early and treated appropriately.  The information contained in this blog should allow you to make good decisions that can provide you with the quality of life you seek and deserve.  For more information about kidney disease and treatment here are some additional sources.

  • The National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK)

http://tinyurl.com/qfna7f2

 

 

 

 


My new hat April 10 2014Bob Aronson of Bob’s Newheart is a 2007 heart transplant recipient,
 the founder of Facebook’s nearly 4,000 member Organ Transplant Initiative (OTI) and the author of most of these donation/transplantation blogs. You may comment in the space provided or email your thoughts to me at bob@baronson.org. And – please spread the word about the immediate need for more organ donors. There is nothing you can do that is of greater importance. If you convince one person to be an organ and tissue donor you may save or positively affect over 60 lives. Some of those lives may be people you know and love.

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Kidney Disease — What You Need To Know


kidney cartoon 2

Blog by Bob Aronson

My last blog was about kidney disease and so is this one.  “Steering Toward Hope” told about Johnny Racine the Canadian father of 16 year old twin boys and how they turned their 2007 Ford Mustang into an 800 horsepower fire breathing showpiece named “The Kidney Hope Car.”  Racine, his boys and the rest of the “Steering” team will travel the width of Canada to promote organ donation and to raise money for kidney research.

This post will take a different but complimentary approach.  The law of supply and demand applies to human organs as it does to many other commodities.  While we must work harder than ever to increase the supply we must concurrently do everything we can to reduce the demand.  It is the only way we will ever arrive at anything even close to resembling a balance of the two. 

The following paragraphs will examine kidney disease from several angles — from listening to how patients describe their illness to prevention, treatment and what the future holds.

Before I get into the real life, real people part of this blog, let me first lay out the facts about Chronic Kidney Disease (CKD).  It is a major health problem that affects more than 26 million Americans.  It is the ninth-leading cause of death in the U.S.   While the numbers are different elsewhere every country is having the same experience.  Whether you are from Singapore, New Zealand, Canada or Peru you will find that kidney disease is on the rise and there are not enough organs for the number of people who need transplants.

Of the 26 million Americans with kidney disease, about half a million face kidney failure, the condition that requires dialysis. Dialysis, though, is not a cure and in many cases is a stop gap effort while the patient awaits an organ transplant — but transplants are hard to get. 

At this writing in November of 2013 there are almost 100,000 people on the list awaiting kidney transplants but 5-6,000 of them die while waiting because the supply of organs not only does not meet demand it is falling farther and farther behind.  Unlike other transplants though, one can also get a kidney from a living donor but there aren’t enough of them either in fact the number of living kidney donors has fallen steadily for the past several years, to 13,040 in 2012, despite the growing need.  Regardless of the source the average wait time for a Kidney Transplant in the U.S. is 1,121 days. 

I’m hoping this blog will help people understand two things. 1) how to prevent kidney disease and 2) what to expect if you get it.  But first, I think it is important to discuss what causes CKD.

Causes of Kidney Disease

The two main causes of chronic kidney disease are diabetes and high blood pressure, which are responsible for up to two-thirds of the cases. Diabetes happens when your blood sugar is too high, causing damage to many organs in your body, including the kidneys and heart, as well as blood vessels, nerves and eyes. High blood pressure, or hypertension, occurs when the pressure of your blood against the walls of your blood vessels increases. If uncontrolled, or poorly controlled, high blood pressure can be a leading cause of heart attacks, strokes and chronic kidney disease. Also, chronic kidney disease can cause high blood pressure.

Other conditions that affect the kidneys are:

  • Glomerulonephritis, a group of diseases that cause inflammation and damage to the kidney’s filtering units.
  •  Inherited diseases, such as polycystic kidney disease, which causes large cysts in the kidneys that damage the surrounding tissue
  • Repeated urinary infections.
  • Pregnancy problems. Sometimes a narrowing of the womb can occur that prevents normal outflow of urine causing it instead to flow back up to the kidney causing infections and kidney damage.
  •  Lupus and other immune system diseases
  • Obstructions caused by kidney stones, tumors or, in men, an enlarged prostate gland.

High risk groups include those with diabetes, hypertension and family history of kidney failure.  African Americans, Hispanics, Pacific Islanders, American Indians and senior citizens are at increased risk.

Before we get into the details of kidney disease and what to do if you have it, let us first discuss how to avoid it.  While there is no sure fire way to prevent kidney problems there are many very effective steps you can take because lifestyle can be a great contributor to the development of all diseases.

Avoiding Kidney Disease

national kidney foundation logoThe National Kidney Foundation has the following guidelines to reduce the risk of developing kidney disease:

  • Reduce sodium intake: Americans consume too much sodium (salt)
  • Limit red meat: Diets high in protein – especially those with animal protein – may harm the kidneys. Red meat is also high in saturated fat.
  • Avoid soda: Sugar-sweetened drinks, like sodas, are high in calories and contain no nutritious value. Additionally, colas have phosphorus additives which can damage kidneys.
  • Give up processed foods: Potato chips, crackers, cheese spreads, instant potato mix, and deli meats are all examples of processed foods that are high in phosphorus additives and sodium – both of which can have a damaging effect on the kidneys.
  • Reduce sugar intake: Consuming too much sugar can result in diabetes or obesity – both linked to kidney disease.
  • Sit less and stand more: Recent research has linked sitting for 8 hours or more a day with developing kidney disease.
  • Exercise and lose weight: Diabetes is responsible for 44 percent of all new cases of kidney failure. Obesity and Type 2 diabetes are on the rise and can often be treated and reversed.
  • Manage high blood pressure: Both considered silent killers, many people don’t realize high blood pressure and kidney disease are linked. Controlling blood pressure levels can prevent kidney damage and failure.
  • Avoid long term use of kidney-toxic drugs: Over-the-counter (OTC) pain medications, nonsteroidal anti-inflammatory drugs (NSAIDs), such as ibuprofen brand names (Motrin, Advil, and Nuprin).
  • Get tested: Ask your doctor for an annual urine test to check for protein in the urine, one of the earliest signs of kidney disease, and a blood test for creatinine

But…there’s a whole lot more to preventing kidney disease.  The Correct Diet Can Help Avoid Kidney Disease  http://www.medicalnewstoday.com/articles/259203.php (See this link for the full story.)

Bad diet choices and habits like smoking and obesity are linked to ajkd logoan increased risk for kidney disease, suggests a new study published in the American Journal of Kidney Disease.

A group of investigators, led by Alex Chang, MD, of Johns Hopkins University, discovered that people with regular kidneys whose diet quality was bad – high in processed and red meats, sodium, and sugar-sweetened beverages, and low in fruit, nuts, legumes, whole grains, and low-fat dairy – were more likely to develop kidney disease.

Just one percent of people without unhealthy diet or lifestyle choices developed protein in their urine – an early sign of kidney damage. On the other hand, 13% of participants who had at least three unhealthy factors such as obesity, smoking, and poor diet developed protein in their urine.

Obese people, i.e. those with a body mass index (BMI) of at least 30, were twice as likely to develop kidney disease, the authors reported. A poor diet independently influenced risk for chronic kidney disease after adjusting for weight and other influential factors.

In total, those who ended up with kidney disease were more likely…

  • to be African American
  • to have high blood pressure
  • to have diabetes
  • to have a family history of kidney disease
  • have a higher intake of soft drinks, fast food, and red meat compared to those who did not have kidney disease.

How it Feels to Have Kidney Disease

Now let’s get to the disease itself. The medical profession can describe it in terms no one can understand but I prefer to hear from patients.  What does it feel like to have kidney disease, how does your body change?  That’s a tough question to answer because so many people have no symptoms or symptoms that are so mild they don’t notice them but we did find some clear, understandable and frightening explanations.

We are going to look at symptoms of kidney failure from two perspectives. First the little tell-tale signs that something might be amiss and secondly the more specific complaints as told by patients.  Fist the little signs that indicate you might have kidney disease but don’t diagnose yourself.  See your physician.  You might have kidney disease if you:

  • feel more tired and have less energy
  • have trouble concentrating
  • have a poor appetite
  • have trouble sleeping
  • have muscle cramping at night
  • have swollen feet and ankles
  • have puffiness around your eyes, especially in the morning
  • have dry, itchy skin
  • Need to urinate more often, especially at night

Now let’s look at more serious conditions. If you are feeling anything like any of the following people you probably should see your doctor as soon as possible.

  • “I feel like I have the flu and am cold most of the time and. When I take my temperature, it is normal. I feel sort of dizzy, have a loss of appetite, food doesn’t have any taste, I have shortness of breath, no energy, and am nauseous.  It’s pretty miserable.”
  • “When I first got sick I really thought it was a normal cold. I had a fever, was sneezing, runny nose etc. Then it got worse to where I was throwing up, had blood coming out in spits, vomit, urine, etc. Then it became really hard to breath and I couldn’t lay down anymore as it would cause me to suffocate. I ended up in the hospital where they told me both my kidneys failed and liquid was pushed up to my lungs which was causing me to suffocate. I don’t want to scare anyone but please learn from my mistake of not going to the hospital for about 3 weeks after I first got the cold like symptoms. Get a check up even if you think it is a cold!”
  • “My kidney failure was discovered by accident through routine blood work at the time of my yearly physical. The first red flag was a high potassium level on two different blood draws over a two month period of time. I had observed several symptoms too,  The first symptom strangely was an “itchy back,” another one was an “ill feeling” — not being very hungry – sweating — breathlessness — a rapid heart rate — and discomfort (pain) in the location of the left kidney. These “symptoms” did not appear all at once or I would have seen a doctor. I now know that all of these are symptoms of chronic kidney failure. It is vital to be informed and educated.” 
  •  “I was diagnosed about three years ago with stage 3 kidney failure. I had no signs that I was aware of as I also have congestive heart failure.  Now, I itch alll over my body, perspire excessively and have extreme pain in my back, neck,shoulders and legs, as well as increased ankle swelling.”
  • “I did not realize I had quit urinating until my husband and I went on a long road trip. I didn’t feel the need to stop to urinate at all. I paid no attention at the time but now I remember that I was very nauseous, vomiting, and had horrible leg cramps. On the third day I went to the ER and was admitted to the ICU. After five dialysis treatments I started to recover.   I now measure my output just to be sure.”

For the sake of education let’s assume you have been diagnosed with kidney disease. What are your options?  There really are only two.  1) you can choose to allow your medical team to treat it with medication and ultimately dialysis.  2) a kidney transplant but you must qualify and only a medical team at a transplant center can determine if you are a candidate for a transplant.

If Dialysis is Ordered

Chronic kidney disease continually gets worse and eventually leads to end-stage renal disease, also known as kidney failure.

\Your doctor might recommend you begin dialysis treatments once you reach the point where you have only 10 to 15 percent of kidney function left.

With kidney failure, the toxins and excess fluid that your kidneys should be releasing begin to build up in your body. People suffering from kidney failure begin dialysis to help their bodies remove these wastes, salts and fluid.

Two kinds of Dialysis

  1. Hemodialysis and
  2. Peritoneal dialysis.

Hemodialysis is typically performed at dialysis centers or hospitals but some clinics offer smaller devices for home use.

Hemodialysis, patients generally have an access point  in their arm to which the dialysis machine is connected.  On average It takes aobut four hours for the blood that is drawn from your body to be cleansed and returned.

Peritoneal dialysis is more likely to be done at home after you have a catheter placed in your stomach (a minor surgery).

There are two kinds of Peritoneal dialysis, 1) continuous ambulatory and 2) continuous cycling

Continuous cycling peritoneal dialysis is usually done at night. Before retiring you attach the dialysis machine tube to your catheter which pumps a solution into your stomach.  It stays there for a few hours so your stomach can act as a filter allowing waste and other fluids to pass through it into the solution.

Continuous ambulatory peritoneal dialysis is much different because you don’t need a  machine. You simply run dialysis solution into your abdomen through the catheter and after 4k to 6 hours drain it into a bag.  A physician can tell you how often during the day you need to do this

Risk Factors

There are several.  They include anemia, bone disease, high blood pressure and depression. Some patients on hemodialysis might have also have problems with low blood pressure.

Patients undergoing peritoneal dialysis are at risk of developing peritonitis which is an infection in the stomach lining. Your doctor will likely prescribe antibiotics to treat the problem.

 Got questions?  Many answers can be found here.

http://www.nwkidney.org/dialysis/startingOut/basic/faqs.html

 A Kidney Transplant

If it has been determined that a Kidney transplant is your only option this information may prove to be invaluable. 

KidneyBuzz.com encourages patients to stay as healthy as possible by managing stress, eating well, and staying active. It is important for patients to remain as well as possible during this time, so they are ready for kidney transplant surgery as soon as a donor organ becomes available. For patients who have a living organ donor, scheduling transplant surgery can take into account the health status of the recipient as well as other factors.

Manage your stress. Many patients constantly worry about their treatments, blood work results, future surgeries, etc. Education and support groups both online such as KidneyBuzz.com, and offline provide patients with tools and support to manage their stress and cope with the challenges associated with their condition. Recommended Reading: Will You be Ready when Your Time Comes for a Kidney Transplant? (this link and links below from KidneyBuzz)

There are other strategies that you can employ to expedite obtaining a Kidney Transplant including listing at more than one transplant center (Multi-Listing). Research has consistently shown that patients who are strategically Multiple Listed will greatly increase their chances of receiving a Kidney Transplant faster.   Nevertheless, only a mere 4.7% of individuals with CKD utilize the Multiple Listing technique.

KidneyBuzz Recommended Reading: “Ins-and -Outs” of Increasing your Chances of Getting a Kidney Faster

There are also website resources available that assist people with CKD to find Kidney Transplant Centers with the lowest average wait times that are the closest to where they live. These free user friendly website tools can be particularly helpful to people who are on a Kidney Transplant Waiting List in a high wait time area because it can significantly increase their access to  Kidney Transplant Centers options with far lower wait times. You can email KidneyBuzz.com at contact@kidneybuzz.com for more information and direct links to discussed sites.

Once you have determined the treatment track you will take the next logobig question most people have is, “How do I pay for the it?”  Well, if you have regular health insurance that might cover it.  If not the National Kidney and Urologic Diseases Information Clearinghouse (NKUDIC) http://kidney.niddk.nih.gov/kudiseases/pubs/financialhelp/ offer this information”

In 1972, Congress passed legislation making people of any age with permanent kidney failure eligible for Medicare, a program that helps people age 65 or older and people with disabilities pay for medical care, usually up to 80 percent. The remaining 20 percent can still pose a significant financial burden on patients. Fortunately, other public and private resources can help. Anyone with permanent kidney failure who does not have adequate insurance coverage should seek the help of a certified or licensed social worker. Every dialysis and transplant center has a social worker who can help people with kidney failure locate and apply for financial assistance. Social workers who specialize in helping kidney patients are called nephrology social workers.

Patients can also enlist the assistance of the State Health Insurance Assistance Program (SHIP). The SHIP is a national program that provides free counseling and assistance to Medicare beneficiaries on a wide range of Medicare and supplemental insurance matters. Patients can find a state program by visiting shipnpr.shiptalk.org/shipprofile.aspx click to view disclaimer page.

Medicarecms logo

To qualify for Medicare on the basis of kidney failure, a person must require regular dialysis or have had a Medicare-covered kidney transplant and must have paid into Social Security through an employer-or be the child or spouse of someone who has or have worked under the Railroad Retirement Board, or as a government employee-or be the child or spouse of someone who has or already be receiving Social Security, Railroad Retirement, or Office of Personnel Management benefits.

The Original Medicare Plan has two parts: Part A is hospital insurance, and Part B is medical insurance. Part B covers most outpatient services, including kidney dialysis, doctors’ services, outpatient hospital services, and many other health services and supplies. While Part A has no premiums, most Part B services require premiums, deductibles, and coinsurance.

Some people who are not eligible for Medicare because they have not worked at a job that pays into Social Security may still be eligible to buy Medicare coverage by paying premiums for Part A.

For more information check with the NKUDIC (link posted above)

935503_10201217871274032_357839664_nJay Robare is a friend and a member of my Facebook group Organ Transplant Initiative.  He is the talent behind the design of the OTI logo.  Jay is legally blind and has been on the kidney transplant list for about four years.  He wrote this about two years ago when he lived in Fort Lauderdale, Florida.  He is now a resident of Philadelphia, Pennsylvania.  Here’s Jay’s story….he’s still waiting.

The Jay Robare Story

Waiting for a Kidney

By the time that I was approved for Medicare, I had gone through all my savings and my limited insurance coverage. I had to quit working because my endurance was gone and because I was not working, I could not afford my apartment anymore and I had to start living with others that helped me out. I lost all my furniture and most of my art equipment.

I finally got disability insurance and was qualified for Medicare but not Medicaid since I was making too much money from disability; I got enough to pay rent and had some money for paper products, which costs a lot. I have to dry my hands on paper towels to stay sterile.

I was blessed with $200 in food stamps last year but that has been decreased too; I am out of food by the third week of the month. I keep asking for rides to the various food banks but people are too busy. I am not the only one going through this; most people just can’t understand the magnitude of what we are going through in our lives and in our bodies. I know everyone is having problems for I hear that all the time but when I got sick and started working to get on the waiting list, all my doctors and nurses treated me like I was given a special gift which it is…the gift of life but many people would rather worry about their financial or relationship problem that they will outlive. We won’t outlive our problems, they are literally killing us.

****Editors note.  (When Jay lived in fort Lauderdale he was on Peritoneal Dialyisis…he is no longer but I included it because patient should know about it.)

I didn’t even talk about having to do dialysis every night. The type of dialysis that I do is called Peritoneal Dialysis where I store 2,500 milliliters of sugar saline solution for 2 and a half hour cycles 4 times which is all carbohydrates. I have gained 30 Lbs and I look very well fed; my fried Dirk said I looked like I had a beer belly…my last beer was a Heineken last Christmas. One nice thing about PD instead of hemo dialysis is that I have no liquid restraints. On hemo, I could only have 60 Oz a day or I would risk cramping and THAT was a bitch. Cramps formed in muscles that I thought I never had and the pain was so bad it made me yell out for Jesus…made my tech laugh at me.

Speaking of techs, I had clowns that would not listen to me and do the treatment their own way ending up hurting me. For you on Hemo, THIS IS YOUR TREATMENT AND YOUR BODY, don’t take any crap from these people; make sure that your nurse knows and the director knows that you do not want this person touching you again. Another thing that I like about PD is that it is robbing my body of potassium and this lets me eat things that hemo would never let me eat like bananas, mashed potatoes, spinach, hummus, vegetables and fruits. I do have to take something called a binder every time that I eat something. This medicine absorbs all the phosphorus in the food. The binder can be nasty at times, it is very dry and tastes like I am eating chalk. The chalk does a good job but sometimes it is difficult to take. The meds are a chewable but I think they are coming out with a powder soon.

Another med that I have to take because of PD and a bad parathyroid, caused by ESKD is a drug called Zemplar and Sensipar. Both keep my calcium land my PTH levels down. The only problem is that Sensipar has made me nauseous for the last 4 years; I have been throwing up every time I took this drug for 7-8 months. I guess my body has had enough. The doctors, dietitians and I have been playing games for years. I have finally decided to have a perthyroidectomy. After this surgery, I will need to start taking calcium supplements, including eating more pizza and lasagna…LOL I

I get extremely tired sometimes during the day from either walking to the bus stop and going to Publix to get some noodles or walking from the bus stop to my Davita dialysis clinic to get labs done every Monday or Tuesday; I need to send a vile of blood to my transplant hospital every week so they can keep an eye on my health and changes in my DNA.

*** Editors Note (Jay is now living in Philadelphia and is on hemodialysis which limits his liquid intake.  He is desperately trying to find a living donor.  This journey has been very hard on Jay yet somehow he manages to keep his spirits up.

The Kidney Transplant

kidneysEveryone has two kidneys, each the size of a fist and they have a very important job to do. They filter waste and remove extra water from your blood to make urine.  But…there’s more.  Your kidneys also control your blood pressure and make hormones that your body needs to stay healthy. 

During a kidney transplant

Kidney transplants are performed with general anesthesia, so you’re not aware during the procedure. The surgical team monitors your heart rate, blood pressure and blood oxygen level throughout the procedure.

During the surgery:

  • The surgeon makes an incision and places the new kidnKidney transplantey in your lower abdomen. Unless your own kidneys are causing complications such as high blood pressure or infection, they are left in place.
  • The blood vessels of the new kidney are attached to blood vessels in the lower part of your abdomen, just above one of your legs.
  • The new kidney’s ureter — the tube that links the kidney to the bladder — is connected to your bladder.

Kidney transplant surgery usually lasts about three to four hours.

After a kidney transplant

After your kidney transplant, you can expect to:

  1. Spend several days to a week in the hospital. Doctors and nurses monitor your condition in the hospital’s transplant recovery area to watch for signs of complications. Your new kidney will make urine like your own kidneys did when they were healthy. Often this starts immediately. In other cases it takes several days. Expect soreness or pain around the incision site while you’re healing.
  2. Have frequent checkups as you continue recovering. After you leave the hospital, close monitoring is necessary for a few weeks. Your transplant team will develop a checkup schedule for you. During this time, if you live in another town, you may need to make arrangements to stay close to the transplant center.
  3. Take medications the rest of your life. You’ll take a number of medications after your kidney transplant. Drugs called immunosuppressants help keep your immune system from attacking your new kidney. Additional drugs help reduce the risk of other complications, such as infection, after your transplant.]

http://www.mayoclinic.org/kidney-transplant/kidney-transplant-procedure.html

The Future

What does the future hold?  It is easy to speculate about what the future holds and absolutely impossible to be accurate.  We just don’t know.  Is there promise? Yes! There are many promising developments taking place in laboratories around the world every day.  We won’t go in to all of them because if history is any indicator most of those experiments will fail.  There are some, though, that hold some promise at least for now…like this one.

Intravenous Kidney Cell Transplant Experiments Raise Hope for Future Human Kidney Failure Treatments

May 31, 2012 — Indiana University School of Medicine scientists have successfully transplanted primary kidney cells intravenously to treat renal failure in rats, pointing the way to a possible future alternative to kidney transplants and expensive dialysis treatments in humans.

The researchers, Katherine J. Kelly, M.D., associate professor of medicine, and Jesus Dominguez, M.D., professor of medicine, genetically modified the cells in the laboratory to produce a protein — called SAA — that plays an important role in renal cell growth, embryonic kidney development and kidney regeneration after an injury. Modified cells found their way to the appropriate locations of the damaged kidneys, resulting in regeneration of tissue and improved function in the kidney.

The researchers’ work has been accepted for publication in the American Journal of Physiology — Renal Physiology, which published an advance online version of the paper on May 16.  You can read more here http://www.sciencedaily.com/releases/2012/05/120531135645.htm

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Bob_Aronson at Mayo Jax tight shot 2008-01-30DJH--02Bob Aronson is a heart transplant recipient.  He got his new heart on August 21,2007 at the Mayo Clinic in Jacksonville, Florida where he now lives with wife Robin and their two dogs Reilly, a soft coated Wheaten, and Ziggy a Mini Schnauzer.

For some 25 years before his transplant Bob was an international communications consultant and owner of the Aronson Partnership which became the  Aronson Communications Group after the surgery.  Today he is semi retired and also assists his artist wife Robin with her Jinglers Jewelry art show business.

Prior to starting his consulting firm in the 1980s he served as the Communications Director for a Minnesota Governor;  was the first Anchor of Morning Edition on the Minnesota Public Radio Network; worked as a journalist at several Midwest broadcast facilities and from 1965 to 1974 was one of the first radio talk show hosts in the country.   

Aronson founded Bob’s Newheart and Facebook’s Organ Transplant Initiative (OTI) on November 3, 2007.  OTI is a 3,000 member transplant patient, recipient, caregiver and donor/donor family support and education group. 

Readers are welcome to Join OTI with the only requirement being that you support our mission which can be found in the “About” section of OTI.  We seek to grow our membership because by so doing will have more influence with decision makers as we pursue those issues which would most benefit our members.

Please view our music video “Dawn Anita The Gift of Life” on YouTube https://www.youtube.com/watch?v=eYFFJoHJwHs.  This video is free to anyone who wants to use it and no permission is needed. 

Thank you for reading our Bob’s Newheart blogs and please leave a comment or contact Bob directly at bob@baronson.org.  We intend to continue to expand the number of issues we cover and the availability of information to the public.  You’ll find scores of other posts on Bob’s Newheart, just check the index for topics, click and read.

If you are an organ donor we thank you.  If not you can become one by going to www.donatelife.net it only takes a few minutes.  Then, tell your family what you have done so there is no confusion later.

 

Jay Robare Needs a Kidney. Will You Help Him?


By Bob Aronson

Video and cartoons by Jay Robare

jay cartoon 9My friend Jay Robare has kidney disease and at age 55 he is dying.  Jay needs a kidney soon.  He is  a very talented graphic artist and also a massage instructor…well he was those things.  Now Jay spends his time going to dialysis, recovering from it and then going to it again.  It’s not much of a life.  He deserves better than this.

Jay is looking for a living donor, someone with two healthy kidneys who is willing to give up one of them.  He knows that’s asking a lot but he’s desperate.  Please take a moment and watch this video.  It’s Jay talking about his disease and what he needs. http://www.youtube.com/watch?feature=player_embedded&v=y8kIoYEGzts

If you are interested you probably have a lot of questions. You can get some answers here at the Hospital of the University of Pennsylvania (HUP) in 935503_10201217871274032_357839664_nPhiladelphia where Jay is registered as a transplant candidate

http://www.pennmedicine.org/transplant/patient-care/living-donor-programs/living-kidney-donor-program.html

Or you can call them at 800-789-7366

You can learn more about Jay by vising his website http://jayskidney.weebly.com/index.html and you can contact Jay on Facebook, too.  He is a regular contributor to the discussions on Organ Transplant Initiative (OTI) and is also the artist who designed the logo with which you are greeted when you sign in to OTI.

Jay cartoon 7Please consider helping Jay.

Thank you

Jays Friend, founder of OTI and Bob’s Newheart

Bob Aronson

scooter half size for wordpressBob Aronson of Bob’s Newheart is a 2007 heart transplant recipient, the founder of Facebook’s nearly 3,000 member Organ Transplant Initiative and the author of most of these donation/transplantation blogs.

You may comment in the space provided or email your thoughts to me at bob@baronson.org. And – please spread the word about the immediate need for more organ donors. There is nothing you can do that is of greater importance. If you convince one person to be an organ and tissue donor you may save or positively affect over 60 lives. Some of those lives may be people you know and love.

Please view our n music video “Dawn Anita The Gift of Life” on YouTube https://www.youtube.com/watch?v=eYFFJoHJwHs.  This video is free to anyone who wants to use it and no permission is needed. 

If you want to spread the word personally about organ donation, we have another PowerPoint slide show for your use free and without permission. Just email me bob@baronson.org and ask for a copy of “Life, Pass it on.“  This is NOT a stand-alone show; it needs a presenter but is professionally produced and factually sound. If you decide to use the show I will send you a free copy of my e-book, “How to Get a Standing “O” that will help you with presentation skills. 

Also…there is more information on this blog site about other donation/transplantation issues. Additionally we would love to have you join our Facebook group, Organ Transplant Initiative The more members we get the greater our clout with decision makers.

Save Lives Now — Extend Kidney Anti-Rejection Drug Coverage


(At the end of this blog you will find a sample letter and links to your congressional and senate representatives.)

 

If someone told you that your government was willing to spend about $650,000 to save from $17,000 to $30,000 a year would you be surprised? 

Well I’m the someone, and I’m telling you that what I have described is absolutely true.  When your congress passed the End Stage Renal Disease (ESRD) law in 1972 then expanded Medicare to cover kidney transplants they bowed to pressure from the dialysis industry and limited anti-rejection medicine coverage to 36 months post-kidney transplant which resulted in the incredible expense I just described.

We can change that by putting some pressure on our elected officials to support a bill that ends this insanity.  I’ll give details in a bit, but first some medical information.

The human immune system is a marvelous mechanism that immediately attacks any foreign body it detects with its full force and fury.

A transplanted organ is a foreign object so the immune system makes every attempt to destroy it, not knowing that destroying the organ will kill the human. 

Enter anti-rejection drugs.  These powerful, expensive drugs suppress the immune system so that a transplanted organ can not only survive but will extend the life of the recipient.  The downside is that transplant patients are more susceptible to diseases because of their suppressed immune system.  Without anti-rejection drugs, though, the immune system will win and the person will die.

The U.S. Congress knew that when they expanded Medicare coverage for kidney transplants.  The law saved a lot of lives but it contains one very strange element.  It only allows Medicare to pay for anti-rejection drugs for 36 months.  After that the recipient is on the hook for from $17,000 to around $30,000 a year these very special drugs. Many patients have found that at the end of the 36 month period they simply couldn’t afford the expense and either cut back on the medication or quit taking it and went into rejection

Strangely, if the patient seeks medical help to stop the rejection, Medicare will leap back into action to rescue the patient that congressionally mandated policies put at risk and they will pay for hospitalization to stabilize the person and dialysis to keep them alive until they can get another Medicare paid transplant.  So let’s do some math, ignoring the cost of the initial transplant and the anti-rejection drugs (about $300,000).

Stabilize patient in hospital (estimate)………………….$50,000

Dialysis during 3-5 year wait for kidney…$216,000 to $360,000

Second transplant ………………………………………..$262,000

One patient gets two transplants meaning it’s entirely possible that another patient won’t get one.  Cost…incalculable.

Total: About $600,000 spent to save the $17,000 to $30,000 cost of the initial anti-rejection drugs.

The last time this issue came before congress was in 2009 and  opposition to expanding anti-rejection coverage came from a group calling itself the  Kidney Care Partners coalition which said “the kidney care community strongly objects” to the proposed changes. Oddly one of the organizations opposing this move was The National Kidney Foundation which was joined by dialysis providers, drug companies and nephrologists.

To pay for the expanded coverage, House Democrats had proposed setting a flat fee for dialysis treatments and related medications that some providers say would not cover costs. The Congressional Budget Office has calculated that the package would save the government $100 million over the next 10 years.

Dialysis providers argue that the bundled-payment mechanism may force some clinics to close. “We believe that the amendment as proposed, while helping one group of patients, would potentially put another very vulnerable group of patients at risk,” said the letter from Kidney Care Partners, which was signed by its chairman, Kent J. Thiry, the chief executive of DaVita, a large commercial dialysis provider.

The group instead proposed to pay for expanded drug coverage by delaying when Medicare would start covering kidney patients who also have private insurance.

The National Kidney Foundation, the largest advocacy group for renal patients, says it signed on to the letter because it shares the group’s concerns about bundling of payments. But Ellie Schlam, the foundation’s spokeswoman, said its support for extending coverage for anti-rejection drugs would ultimately outweigh its opposition to

The American Society of Transplantation supports the provision.  Currently there are over 100,000 Americans on the Kidney transplant waiting list a

What You Can Do

Recently Transplant living, which is a service of UNOS http://www.transplantliving.org/  recently published this information.

Support Anti-Rejection Drug Coverage Bill

The Comprehensive Immunosuppressive Drug Coverage for Kidney Transplant Patients Act, currently in the U.S. Senate and House of Representatives, will extend Medicare coverage of anti-rejection drugs for the rest of the patient’s life. This will help patients to keep their kidney transplants, shorten the transplant waiting list, and lower Medicare costs.

Call for action

Please consider contacting your Senators and House Member. To determine your Senators and House Member, go to http://www.congress.org and input your zip code under Get Involved.

Sample language

Dear Representative :

I am contacting you to request that you cosponsor important legislation for chronic kidney disease patients. H.R. 2969, the “Comprehensive Immunosuppressive Drug Coverage for Kidney Transplant Patients Act of 2011,” was introduced by Representatives Burgess and Kind to help kidney transplant recipients obtain the life-saving immunosuppressive medications that are necessary to maintain the viability of their new kidney.

Individuals with chronic kidney failure require kidney dialysis or a transplant to survive, and are eligible for Medicare regardless of age or other disability. There is no time limit on Medicare coverage for dialysis patients. However, transplant recipients who are not aged or disabled retain Medicare eligibility only for 36 months following their transplant. After their Medicare ends, they often face the challenge of obtaining group health insurance or other coverage, greatly increasing the risk of organ rejection if they cannot afford their required medications. If the transplanted kidney fails, they return to dialysis or receive another transplant, both of which are more costly (Medicare spends more than $77,000 annually on a dialysis patient and about $19,100 per year for a kidney transplant recipient, after the year of the transplant).

H.R. 2969 would extend Medicare Part B eligibility, and only for immunosuppressive medications. Coverage for any other health needs would end 36 months after the transplant, as under current law. The legislation also requires group health plans to maintain coverage of immunosuppressive drugs if they presently include such a benefit in their coverage. Lifetime immunosuppressive coverage will improve long term transplant outcomes, enable more kidney patients who lack adequate insurance to consider transplantation, and reduce the number of kidney patients who require another transplant. Nobody should lose a transplant because they are not able to pay for the drugs to maintain it. On behalf of thousands of transplant recipients, I respectfully request your support of this legislation.

Sincerely,

 

In order to help you write to your representative in congress Bob’s Newheart has provided the following resource. 

To find your U.S. Senator’s address click on this link http://www.senate.gov/general/contact_information/senators_cfm.cfm

To find your congressional representative click on this link.

http://www.house.gov/representatives/find/

Bob Aronson of Bob’s Newheart is a 2007 heart transplant recipient, the founder of Facebook’s nearly 2,500 member Organ Transplant Initiative and the author of most of these donation/transplantation blogs.

You may comment in the space provided or email your thoughts to me at bob@baronson.org. And – please spread the word about the immediate need for more organ donors. There is nothing you can do that is of greater importance. If you convince one person to be an organ and tissue donor you may save or positively affect over 60 lives. Some of those lives may be people you know and love.

Please view our video “Thank You From the Bottom of my Donor’s heart” on http://www.organti.org This video was produced to promote organ donation so it is free and no permission is needed for its use.

If you want to spread the word personally about organ donation, we have another PowerPoint slide show for your use free and without permission. Just go to http://www.organti.org and click on “Life Pass It On” on the left side of the screen and then just follow the directions. This is NOT a stand-alone show; it needs a presenter but is professionally produced and factually sound. If you decide to use the show I will send you a free copy of my e-book, “How to Get a Standing “O” that will help you with presentation skills. Just write to bob@baronson.org and usually you will get a copy the same day.

Also…there is more information on this blog site about other donation/transplantation issues. Additionally we would love to have you join our Facebook group, Organ Transplant Initiative The more members we get the greater our clout with decision makers.

 Espanol

Bob Aronson Newheart de Bob es un receptor de trasplante cardiaco 2007, el fundador de Facebook, casi 2.500 Iniciativa miembro de Trasplante de Órganos y el autor de la mayoría de los blogs de donación / trasplante.

Puede comentar en el espacio proporcionado o por correo electrónico sus pensamientos a mí en bob@baronson.org. Y – por favor, difundir la palabra acerca de la necesidad inmediata de más donantes de órganos. No hay nada que puedas hacer lo que es de mayor importancia. Si usted convence a una persona de ser donante de órganos y tejidos puede salvar o afectar positivamente a más de 60 vidas. Algunas de esas vidas pueden ser personas que conoces y amas.

Por favor vea nuestro video “Gracias desde el fondo de mi corazón Donante” en http://www.organti.org Este video fue producido para promover la donación de órganos por lo que es libre y no se necesita permiso para su uso.

Si quieres correr la voz acerca de la donación de órganos personalmente, tenemos otra presentación de PowerPoint para su uso libre y sin permiso. Sólo tienes que ir a http://www.organti.org y haga clic en “Life Pass It On” en el lado izquierdo de la pantalla y luego sólo tienes que seguir las instrucciones. Esto no es un espectáculo independiente, sino que necesita un presentador pero es profesionalmente producida y sonido hechos. Si usted decide usar el programa le enviaré una copia gratuita de mi libro electrónico, “Cómo obtener un pie” O “que le ayudará con habilidades de presentación. Sólo tiene que escribir a bob@baronson.org y por lo general usted recibirá una copia del mismo día.

Además … hay más información sobre este sitio de blogs sobre otros donación / trasplante temas. Además nos encantaría que te unas a nuestro grupo de Facebook, la Iniciativa de Trasplante de Órganos Cuantos más miembros que obtenemos mayor será nuestra influencia con los tomadores de decisiones.

                               

Finally, The Ability to Compare Dialysis Centers


ATTENTION DIABETICS! If you need or will need dialysis you must visit this site. Through the Freedom of Information Act (FOIA) a journalistic group has lifted the veil of secrecy surrounding dialysis mortality, transplant listings and more and allows you to compare facilities in every state.

Normally my blogs go into some detail on an issue but this time the posting will be short because the link I provide will give you all the information you need and you can personalize it for your individual needs.  Pro Publica Journalism in the Public Interest, got this information through diligence and patience. 

 This is one of the most important stories to come out in a long time and so far it has been virtually ignored by the mainstream media. 

Please visit this link and comment.  http://projects.propublica….org/dialysis/ 

And…don’t forget the Arizona 98 campaign.  there is more information on this blogsite and you can offer futher support by visiting www.savethearizona98.com.  You can also visit and join my Facebook site, ORGAN Transplant Initiative http://www.facebook.com/group.php?gid=152655364765710  OR — my Facebook home Page http://www.facebook.com/?sk=messages&tid=10150094667020070#!/ . 

 The more members we get the greater our impact on increasing life saving organ donation

Please comment in the space provided or email your thoughts to me at bob@baronson.org.  And – please spread the word about the immediate need for more organ donors.  There is nothing you can do that is of greater importance.  If you convince one person to be a donor you may save or positively affect over 60 lives.  Some of those lives may be people you know and love.

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