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
The 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 an 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
- Hemodialysis and
- 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
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.
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 email@example.com for more information and direct links to discussed sites.
Once you have determined the treatment track you will take the next big 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 .
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)
Jay 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
Everyone 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 kidney 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:
- 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.
- 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.
- 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.]
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
Bob 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 firstname.lastname@example.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.