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Post Transplant Depression, It’s Common and There’s Help!


By Bob Aronson

gloomy gusHaving suffered from post transplant depression myself, I know of what I speak.  It hits you like a sledge hammer and keeps pounding away.  The pain isn’t physical, it’s emotional and it can be intense, so intense that some consider taking their own lives. Worst of all, few if any of your family and friends understand and some become impatoemt. dsksdddddddddddddlkkkkkkkkkkkkkksddddddddddddddddddddddddddddddddddddddddddddddddddlddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddccsssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssjnnnnnnnnnnnnnnnnnnnnnnnnnnnnnnnssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssss with your continued mood swings. They don’t even have the most basic understanding of the disease. While their intentions are good, their advice usually isn’t. They will say things like, “Buck up, My God your’re alive, you got a new heart and you’re alive.” To that I can only say, “I would be happy to buck up if I could, but I can’t. Noone would choose to live like this You can feel useless, unnecessary, irrelevant and totally without purpose.  Some patients even feel suicidal, but it doesn’t have to be that way.  There is help.

If there’s one  message you should take away from this blog, it is this.  Depression is not your fault, you did not cause it and therefore you alone can not fix it. “Cheer up, look at the bright side,” may sound like good advice but it isn’t because it assumes you decided to feel lousy.  Who on earth would choose to be depressed?  It is sad, but true that sometimes even the people closest to you don’t understand.  They continue to hold on to the belief that you can snap out of it if you really want to.  The reality of depression just isn’t that simple.  Frankly, it is very, very complex and takes highly skilled and trained professionals to help you find your way back to the sunny side of the street.

Unfortunately if you have had or if you are going to have an organ transplant, chances are good that you might fall victim to post transplant depression. Estimates of how many patients become depressed following an organ transplant range from 10 percent all the way up to 50%, but no matter what the percentage the fact is that some people will have serious emotional struggles following their transplant.

One can easily ask, “Depression? Why on earth would anyone be depressed after their life has been saved by the donor/transplantation process?”  Well, there are a number of reasons, chief among them is the haunting feeling that someone had to die in order for you to live.  The fact is, the person who died, would have died anyway whether they were an organ donor or not and if they were, someone might gain new life as a result, but that’s logic and logic alone cannot solve the problem and help the patient. Besides, there are other issues that contribute to depression like:

  • Living with the psychological highs and lows that are sometimes not okcaused by immunosuppressives such as corticosteroids
  • The steroids you take can have the effect of a mood amplifier. In the first few weeks, especially, when the doses are highest, the medicine will wind you up and make it hard to sleep. The sudden changes in the family — and in your behavior — can be extreme.
  • Managing a complex post-transplant regimen that encompasses: (1) multiple meds and schedules, (2) monitoring vital signs, (3) exercise and dietary requirements, (4) regular medical evaluations and lab tests, and (5) lifestyle restrictions on smoking, alcohol, and other potentially harmful substances
  • Major life alterations such as transitioning from being critically ill or dying patients and family caregivers to roles that are more wellness-focused)
  • Coping with new and taxing financial and economic issues like the cost of transplant surgery, hospital stays, follow-up care, cost of drugs and health insurance.

To some that list of changes is so overwhelming as to be nearly impossible to manage.  Some have been seriously ill for such a very long time and so focused on dying that they cannot adjust to an attitude that centers on life and living.   What is even worse is that unless the patient is getting professional psychiatric help he or she may not be able to identify a single stressor that brought on their depressed state.

What is Depression?depression

Simply put, depression is a mood disorder that causes a persistent feeling of sadness and loss of interest in those things that had been of great importance.  It affects how you feel, think and behave and can lead to a variety of problems. Day to day activities become ponderous and boring and patients sometimes feel their lives are not worth living.

Depression isn’t just feeling “down” and you can’t just “snap out of it.” It can require long-term treatment with either medication, psychological counseling or a combination of the two. Above all you must know that suffering from depression is not a personal weakness.  You didn’t bring it on and will power alone cannot defeat it.

Depression can occur once or several times in a lifetime and according to the Mayo Clinic (http://tinyurl.com/ouory9u) the symptoms can appear all day, every day and may include:

  • Feelings of sadness, tearfulness, emptiness or hopelessness
  • Angry outbursts, irritability or frustration, even over small matters
  • Loss of interest or pleasure in most or all normal activities, such as sex, hobbies or sports
  • Sleep disturbances, including insomnia or sleeping too much
  • Tiredness and lack of energy, so even small tasks take extra effort
  • Changes in appetite — often reduced appetite and weight loss, but increased cravings for food and weight gain in some people
  • Anxiety, agitation or restlessness
  • Slowed thinking, speaking or body movements
  • Feelings of worthlessness or guilt, fixating on past failures or blaming yourself for things that aren’t your responsibility
  • Trouble thinking, concentrating, making decisions and remembering things
  • Frequent or recurrent thoughts of death, suicidal thoughts, suicide attempts or suicide
  • Unexplained physical problems, such as back pain or headaches

For many people with depression, symptoms usually are severe enough to cause noticeable problems in day-to-day activities, such as work, school, social activities or relationships with others. Other people may feel generally miserable or unhappy without really knowing why. http://tinyurl.com/lgsq8hm

Health Concerns

(Material gathered here comes from several sources primary among them is UNOS (the United Network for Organ Sharing).

What happens after transplantation depends on the organ transplanted and the recipient’s specific medical situation. Most patients recover fully, return to work and resume a normal, active life after receiving a new organ. However, there is a possibility of developing unrelated health problems after transplantation. That’s why it is important to work closely with your doctor concerning your overall wellness, as well as regarding the following health concerns:

Anxiety and Depression

anxiety symptomsPatients and their families face a new lifestyle after transplantation that may cause them to feel nervous, stressed or depressed. Because emotional and psychological support is a continuing process, ask your social worker about counseling services that can help you and your family deal with these changes. Professionals can help you work through concerns about your self-image; mood swings; job planning; rehabilitation; family stresses, such as parent-child conflicts, marital conflict or changes in sexual functioning; and financial concerns, such as questions about Medicare, disability or insurance.  Any and all of the following can contribute to your depression and/or anxiety.

Diabetes

Some anti-rejection medicines are known to cause high blood sugar. Although it is typically a temporary condition after transplantation, it is more common in patients who have a family history of diabetes and patients who are overweight. It can be controlled by reducing the dose of a patient’s anti-rejection medicines or changing medications all together.

GI Upset

GI (gastrointestinal) or stomach upset is also a common complaint after a transplant. Patients on steroid therapy may be at an increased risk of developing ulcers due to increased hydrochloric acid from the stress of the procedure. Treatment of GI upset may include one or a combination of drugs that reduce acid production. In addition, people with GI upset should take several steps to reduce symptoms, including:

  • Reducing the intake of caffeine, alcohol and over-the-counter medications that cause GI upset.
  • Eliminating carbonated drinks can help
  • And it sometimes helps to take your meds with food to decrease irritation.

Gout

Gout is a painful and potentially disabling form of arthritis. Diagnosing gout can be difficult and treatment plans vary based on a patient’s existing medical problems and medications.  Often Gout will show up in the big toe and it is very painful.  Sometimes even a bedsheet touching the Gout area will result in extreme pain.

High Cholesterol

Many immunosuppressant drugs can contribute to high cholesterol. This condition therefore affects many transplant recipients. When a patient develops high cholesterol, blood vessels, including the ones attached to the transplanted organ, become clogged, which affects the flow of blood. This slowing of blood flow can affect the success of your transplant and may even lead to heart disease. It is important to talk to your doctor about how to reduce the risk factors of heart disease, including controlling your cholesterol.

Hypertension

Hypertension, or high blood pressure, is common immediately after
transplant. Certain anti-rejection medications, as well as the original disease, all can contribute to hypertension. Treatment of hypertension may include one or a combination of drugs, and often, as anti-rejection medicines are tapered to a maintenance dose, hypertension may decrease. Talk to your doctor about what’s right for you and how to avoid high blood pressure.

Sexual Relations

Sexual concerns after transplantation are commonly experienced, yet seldom discussed or addressed during evaluation. It is therefore very important to talk with your doctor about your sexual history and concerns.

However, sexual function and interest can be related to how well your body has accepted your new organ and how realistic your expectations were for life after your transplant. A counselor can also help a couple understand the difference between pre- and post-transplant problems. Often, support groups can be very helpful in this regard.

Additionally, in sexual relations, as in all issues, recipients must remember that they are immune suppressed and subject to many kinds of infections. In fact, some infections in recently transplanted patients can be potentially life threatening. Consequently, it is important to consider the following points:

  • The sharing of saliva during kissing can expose both partners to active diseases, such as colds or other viruses.
  • Condoms don’t prevent diseases that are spread by contact between the area surrounding the penis and external genitals.
  • The risk of contracting infectious diseases though oral sex is possible, especially if ejaculation occurs or if there are any sores or wounds on either partner.

Shingles

People with weakened immune systems, such as transplant recipients treated with immunosuppressive drugs, risk developing shingles. Shingles is a painful infection of the central nervous system caused by the Varicella virus that causes a blistering rash and severe burning pain, tingling or extreme sensitivity to the skin and is usually limited to one side of the body. The severity and duration of an attack of shingles can be significantly reduced by immediate treatment with antiviral drugs.  You should also ask your doctor about getting the Shingles vaccine.

Sometimes our own irresponsible behavior is responsible for feelings of depression or inadequacy.  It has been established that noncompliance appears to be relatively common during the first several years after transplantation. That means some patients just don’t take the right amount of medication at the right time, if they take it at all. Furthermore, compliance in most areas of the medical regimen worsens over the first year after the transplant just as it does for most patients who begin new medical therapies.  For example:

  • Up to 20% of heart transplant recipients and 50% of kidney transplant recipients have been found to be noncompliant with prescribed immunosuppressant medications during a given 12-month period in the early post-transplant years
  • 5% to 26% of heart transplant recipients smoke at least once after being transplanted; no study has determined what proportion of these patients become regular smokers.
  • 11% to 48% of liver transplant recipients return to some level of alcohol consumption during the first year post-transplantation.
As a result of noncompliance patients are likely to experience rejection symptoms or actual rejection and, of course when this happens patients experience anxiety and/or depression.   http://tinyurl.com/qjlc48n

Treatment options

time to healResearchers at Henry Ford Hospital have found that emotional closeness between transplant patients and their caregivers helps reduce depression and anxiety after surgery.  While this study was about liver transplant patients, it is likely that the conclusions probably have universal application.

“People with close networks and good support recover faster after liver transplant and have less depression and anxiety at six months after transplant,” says Anne Eshelman, Ph.D., Henry Ford Health System Behavioral Health Services, lead author of the study.

“These findings suggest caregiving relationships as a target for psycho-therapeutic intervention among patients with end-stage liver disease.”

Study results were presented at the International Congress of Behavioral Medicine in Washington D.C., held by the International Society of Behavioral Medicine and the Society of Behavioral Medicine.

The study looked at 74 liver transplant surgery candidates and their primary caregivers. Transplant patients were surveyed before surgery and at a six-month follow-up. Caregivers rated the degree of closeness they felt in their relationship to the patient.

The sample was divided into groups with caregivers reporting maximum closeness or less closeness.

For patients with end-stage liver disease, depression and anxiety improve after liver transplant, but the study found that these changes are not as great for individuals with emotionally distant caregiving relationships.

“If you live with someone who loves you, the quality of care they provide may be much better, they may be more encouraging, you may want to please them and recuperate faster so you can spend quality time with them,” says Dr. Eshelman.  “Caregivers who are not close, may provide the basic requirements, but don’t help give someone a reason to live and look to the future.”

The study results also suggested that emotional closeness was critical for affective improvement in men, but less so for women, though interpretation is limited by a small sample size, explained Dr. Eshelman.

“Men who had adequate number of support people, but did not have close support, were still depressed and anxious at follow up, compared to those who had closer support,” says Dr. Eshelman. “Other literature shows that women have wider support, more friends and family they are connected to than men, and if the primary support person is not that close, they probably rely on the other people such as girlfriends.”
The study was funded by Henry Ford Transplant Institute. http://tinyurl.com/q4bwqzs

Treatments for Depression

From Web MD

If you are diagnosed with depression, here’s some good news: Excellent treatment options are available to you.

Many people use a combination of treatments, such as medication and psychotherapy. For depression that doesn’t respond to standard treatment, non-drug approaches can be effective, either alone or used with other treatments.

Learn more here about the most common approaches to treating depression.

Talk Therapy for Depression

Talking with a trained therapist is one of the best treatments. Some people choose to be in therapy for several months to work on a few key issues. Other people find it helpful to continue in therapy for years, gradually working through larger problems. The choice is up to you and your therapist. Here are some common types of therapy:

  • Cognitive behavioral therapyhelps you see how behaviors and the way you think about things plays a role in your depression. Your therapist will help you change some of these unhealthy patterns.
  • Interpersonal therapyfocuses on your relationships with other people and how they affect you. Your therapist will also help you pinpoint and change unhealthy habits.
  • Problem-solving therapyfocuses on the specific problems you face and helps you find solutions.

Medicines for Depression

Medicines are the other key treatment for depression. If one antidepressantdepression meds doesn’t work well, you might try a similar one or a different kind. Your doctor might also try changing the dose. In some cases, he or she might recommend taking more than one medication for your depression. There are now many different antidepressants that your doctor can choose from. The entire listing can be seen here: http://tinyurl.com/p4yaq4b

Just keep in mind that recovery is a process that may need constant adjustment and takes time.

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All the views

Thank you donors and donor families

Bob Aronson of Bob’s Newheart is a 2007 heart transplant recipient, the founder of Facebook’s over 4,200 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.  You can register to be a donor at http://www.donatelife.net.  It only takes a few minutes. Then, when registered, tell your family about your decision so there is no confusion when the time comes.

Clinical Depression. You Can Defeat Your Demons!


By Bob Aronson

loneliness cartoonDepression, what is it? Why can’t you just snap out of it? Many people including family and friends who have not experienced depression have great difficulty understanding it much like people who are not addicts can’t understand addiction. In both cases we often hear advice like, “Snap out of it, you’ve got things pretty good. There’s no reason to be depressed.” Or, “You made the choice to start drinking or using drugs so choose to stop.” Oh, if it were that simple.

Here’s a cold slap in the face to bring us into reality. Depression is a mental illness, like the common cold is a physical illness. There has long been a stigma associated with mental illness held over from the days of Insane Asylums and “Crazy” people. That stigma is rapidly disappearing because so many people suffer from depression which is often a chemical imbalance that is quite treatable. Your mental health is every bit as important as your physical health and one can affect the other.

Here are some shocking statistics from the National Institutes of Mental Health (NIMH).

Major Depressive Disorder

  • Major Depressive Disorder is the leading cause of disability in the U.S. for ages 15-44.3
  • Major depressive disorder affects approximately 14.8 million American adults, or about 6.7 percent of the U.S. population age 18 and older in a given year.1, 2
  • While major depressive disorder can develop at any age, the median age at onset is 32.5
  • Major depressive disorder is more prevalent in women than in men

Major or clinical depression is an awful feeling. It is a gnawing at the pit of your stomach, in your gut that makes you feel hopeless, helpless and alone. It is as though someone locked up your ability to reason, your sense of humor and your will to live in a windowless, dark, solitary confinement jail cell from which there is no escape. It is a constant feeling of impending doom combined with a profound sadness and even fear. It can steal your energy, memory, concentration, sex drive, interest in activities you used to love and…it can even destroy your will to live. Depression may not be as common as the common cold but it is much more common than ever before. Nearly 20 percent of Americans suffer from it at one time or another.

Logic says that you should be able to “Will” yourself out of this mood, but will power alone cannot give you tStop being sadhe boost you need to get your life’s engine started again. Mental illness is not unlike physical illness. You cannot use will power to eliminate depression any more than you could use it to stop cancer. No one wants to be depressed, no one,. Think about it. If will power would work as an anti-depressant there would be no depression because again, no one wants to feel like what I described.

Let’s get to the medical description and symptoms as offered by the Mayo Clinic. http://www.mayoclinic.org/diseases-conditions/depression/expert-answers/clinical-depression/faq-20057770

“To be diagnosed with clinical depression, you must have five or more of the following symptoms over a two-week period, most of the day, nearly every day. At least one of the symptoms must be either a depressed mood or a loss of interest or pleasure. Signs and symptoms may include:
• Depressed mood, such as feeling sad, empty or tearful (in children and teens, depressed mood can appear as constant irritability)
• Significantly reduced interest or feeling no pleasure in all or most activities
• Significant weight loss when not dieting, weight gain, or decrease or increase in appetite (in children, failure to gain weight as expected)
• Insomnia or increased desire to sleep
• Either restlessness or slowed behavior that can be observed by others
• Fatigue or loss of energy
• Feelings of worthlessness, or excessive or inappropriate guilt
• Trouble making decisions, or trouble thinking or concentrating
• Recurrent thoughts of death or suicide, or a suicide attempt
Your symptoms must be severe enough to cause noticeable problems in relationships with others or in day-to-day activities, such as work, school or social activities. Symptoms may be based on your own feelings or on the observations of someone else.
Clinical depression can affect people of any age, including children. However, clinical depression symptoms, even if severe, usually improve with psychological counseling, antidepressant medications or a combination of the two.”

The National Institutes of Health (NIH) has this to say about depression.

What causes depression?

Several factors, or a combination of factors, may contribute to depression.
• Genes—people with a family history of depression may be more likely to develop it than those whose families do not have the illness.
• Brain chemistry—people with depression have different brain chemistry than those without the illness.
• Stress—loss of a loved one, a difficult relationship, or any stressful situation may trigger depression.
Depression affects different people in different ways.
• Women experience depression more often than men. Biological, life cycle, and hormonal factors that are unique to women may be linked to women’s higher depression rate. Women with depression typically have symptoms of sadness, worthlessness, and guilt.
• Men with depression are more likely to be very tired, irritable, and sometimes even angry. They may lose interest in work or activities they once enjoyed, and have sleep problems.
• Older adults with depression may have less obvious symptoms, or they may be less likely to admit to feelings of sadness or grief. They also are more likely to have medical conditions like heart disease or stroke, which may cause or contribute to depression. Certain medications also can have side effects that contribute to depression.
• Children with depression may pretend to be sick, refuse to go to school, cling to a parent, or worry that a parent may die. Older children or teens may get into trouble at school and be irritable. Because these signs can also be part of normal mood swings associated with certain childhood stages, it may be difficult to accurately diagnose a young person with depression.

get out of bedOk we’ve defined the malady and we know how clinicians determine if patients have it so the next logical question is, “What can you do about it.” Well, the answer is simple, but it will take a major commitment on your part to make the answer work for you, we can start by identifying some hazards, potholes on the road to good mental health.

Depression: Ten Traps to Avoid

Dr. Stephen Ilardi, author of “The Depression Cure,” has identified several things that can make depression worse. First, know this. Depression is a serious medical condition and should be treated by a doctor or licensed therapist. Having said that, here”s what Dr. Ilardi suggests.

Trap 1: Being a Couch Potato

When you’re feeling down, it’s tempting to hole up in your bed or on the couch. Yet exercise – Even moderate activityclinical depression image like brisk walking – has been shown to be at least as effective against depression as antidepressant medication. It works by boosting the activity of the “feel-good” neurochemicals dopamine and serotonin.
For an “antidepressant dose” of exercise, try at least 40 minutes of brisk walking or other aerobic activity three times a week.

Trap 2: Not Eating “Brain Food”

Omega-3 fats are key building blocks of brain tissue. But the body can’t make omega-3s; they have to come from our diets. Unfortunately, most Americans don’t consume nearly enough Omega-3s, and a deficiency leaves the brain vulnerable to depression. Omega-3s are found in wild game, cold-water fish and other seafood, but the most convenient source is a fish oil supplement. Ask your doctor about taking a daily dose of 1,000 mg of EPA, the most anti-inflammatory form of omega-3.

Trap 3: Avoiding Sunlight

Sunlight exposure is a natural mood booster. It triggers the brain’s production of serotonin, decreasing anxiety and giving a sense of well-being. Sunlight also helps reset the body clock each day, keeping sleep and other biological rhythms in sync.

During the short, cold, cloudy days of winter, an artificial light box can substitute effectively for missing sunlight. In fact, 30 minutes in front of a bright light box each day can help drive away the winter blues.

Trap 4: Not Getting Enough Vitamin D

Most people know vitamin D is needed to build strong bones. But it’s also essential for brain health. Unfortunately, more than 80 percent of Americans are vitamin D deficient. From March through October, midday sunlight exposure stimulates vitamin D production in the skin – experts advise five to 15 minutes of daily exposure (without sunscreen). For the rest of the year, ask your doctor about taking a vitamin D supplement.

Trap 5: Having Poor Sleep Habits

sleepChronic sleep deprivation is a major trigger of clinical depression, and many Americans fail to get the recommended seven to eight hours a night. How can you get better sleep?

Use the bed only for sleep and sex – not for watching TV, reading, or using a laptop. Turn in for bed and get up at the same time each day. Avoid caffeine and other stimulants after midday. Finally, turn off all overhead lights

Trap 6: Avoiding Friends and Family

When life becomes stressful, people often cut themselves off from others. That’s exactly the wrong thing to do, as research has shown that contact with supportive friends and family members can dramatically cut the risk of depression. Proximity to those who care about us actually changes our brain chemistry, slamming the brakes on the brain’s runaway stress circuits.

Trap 7: Mulling Things Over

When we’re depressed or anxious, we’re prone to dwelling at length on negative thoughts – rehashing themes of rejection, loss, failure, and threat, often for hours on end. Such rumination on negative thoughts is a major trigger for depression – and taking steps to avoid rumination has proven to be highly effective against depression.

How can you avoid rumination? Redirect attention away from your thoughts and toward interaction with others, or shift your focus to an absorbing activity. Alternatively, spend 10 minutes writing down the troubling thoughts, as a prelude to walking away from them.

Trap 8: Running with the Wrong Crowd

Scientists have discovered that moods are highly contagious: we “catch” them from the people around us, the result of specialized mirror neurons in the brain. If you’re feeling blue, spending time with upbeat, optimistic people might help you “light up” your brain’s positive emotion circuits.

Trap 9: Eating Sugar and Simple Carbs

Researchers now know that a depressed brain is an inflamed brain. And what we eat largely determines simple carbsour level of inflammation. Sugar and simple carbs are highly inflammatory: they’re best consumed sparingly, if at all.

In contrast, colorful fruits and veggies are chockablock with natural antioxidants. Eating them can protect the body’s omega-3s, providing yet another nice antidepressant boost.

Trap 10: Failing to Get Help

Depression can be a life-threatening illness, and it’s not one you should try to “tough out” or battle on your own. People experiencing depression can benefit from the guidance of a trained behavior therapist to help them put into action depression-fighting strategies like exercise, sunlight exposure, omega-3 supplementation, anti-ruminative activity, enhanced social connection, and healthy sleep habits.

So you think you’ve avoided all the traps, but you are still depressed, now what? According to the National Alliance on Mental Illness (NAMI) here are the options. (http://www.nami.org/Content/NavigationMenu/Mental_Illnesses/Depression/Depression_Treatment,_Services_and_Supports.htm)

Treating Major Depression

pillsAlthough depression can be a devastating illness, it often responds to treatment. The key is to get a specific evaluation and a treatment plan. Today, there are a variety of treatment options available for depression. There are three well-established types of treatment: medications, psychotherapy and electroconvulsive therapy (ECT). A new treatment called transcranial magnetic stimulation (rTMS), has recently been cleared by the FDA for individuals who have not done well on one trial of an antidepressant. For some people who have a seasonal component to their depression, light therapy may be useful. In addition, many people like to manage their illness through alternative therapies or holistic approaches, such as acupuncture, meditation, and nutrition. These treatments may be used alone or in combination. However, depression does not always respond to medication. Treatment resistant depression (TRD) may require a more extensive treatment regimen involving a combination of therapies.

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Bob Aronson of Bob’s Newheart is a 2007 heart transplant recipient, the founder of Facebook’s nearly 4,000 mmagic kindom in backgroundember 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.

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.

Post-Transplant Depression — What It Is and What To Do.


This is a compilation of information from various sources.  It does not constitute medical advice.  Please consult your physician about your condition and base your treatment decision on his or her advice, not on what you read here.

Post-transplant depression is real.  There are no statistics of which I am aware that indicate the percentage of organ recipients that suffer from the malady but there are enough reports of the problem to suggest it is no small number.

The extent to which your emotional health is affected by a transplant depends on a complex interplay of your health status and personality, genetic factors, social support, financial situation, and other concerns.

For most people, emotions about their experience change and evolve over time. Typically, feelings of sadness or anxiety are transient. For some, however, these feelings may persist and interfere with daily life.

According to the Mayo Clinic Depression is more than just a bout of the blues.  It isn’t a weakness, nor is it something that you can simply “snap out” of. Depression is a chronic illness that usually requires long-term treatment, like diabetes or high blood pressure. http://www.mayoclinic.com/health/depression/DS00175

Depression is a complex disease and sometimes it is difficult if not impossible to find a reason for the problem.  One that I hear most often is guilt.  Some recipients feel guilt because, they say, someone had to die in order for them to live. Others feel guilt because they are doing well while other transplant recipients may not be so fortunate.  Those feelings sometimes proves to be a very heavy burden for many transplant recipients but it may be only one potential cause of their feelings. There are some other factors that may contribute to post transplant depression as well:

  • Anger or depression, because they don’t feel better as soon as they expected.
  • Frustration, because of chronic or lingering fatigue that keeps them from things they want to do or accomplish.
  • Mood changes caused by the drugs that must be taken following a transplant.
  • Dissatisfaction with old plans and goals. Identifying new priorities and making lifestyle changes may feel good, but can also be stressful.
  • Fear that the old illness might return and affect the new organ

Symptoms of depression include:

  • Persistent sad, anxious, or “empty” feelings
  • Feelings of hopelessness or pessimism
  • Feelings of guilt, worthlessness, or helplessness
  • Irritability, restlessness
  • Loss of interest in activities or hobbies once pleasurable, including sex
  • Fatigue and decreased energy
  • Difficulty concentrating, remembering details, and making decisions
  • Insomnia, early-morning wakefulness, or excessive sleeping
  • Overeating, or appetite loss
  • Thoughts of suicide, suicide attempts
  • Aches or pains, headaches, cramps, or digestive problems that do not ease even with treatment.

Despite the feelings of gloom and doom, though, there is reason to be optimistic because most people with depression will eventually  feel better with medication, psychological counseling or other treatment.

Still another reason for post-transplant depression is Post Traumatic Stress Disorder (PTSD).  Post-traumatic stress disorder is a type of anxiety disorder. It can occur after you’ve seen or experienced a traumatic event that involved the threat of injury or death.  Obviously getting an organ transplant falls into that definition. http://health.nytimes.com/health/guides/disease/post-traumatic-stress-disorder/overview.html

Symptoms of PTSD fall into three main categories:

1. “Reliving” the event, which upsets day-to-day activity

  • Flashback episodes, where you re-live the event so it seems to be happening again and again
  • Repeated traumatic memories of the event
  • Frequent nightmares of the event
  • Strong, uncomfortable reactions to reminders of the situation

2. Avoidance

  • Emotional “numbing,” or feeling as though you don’t care about anything
  • Feeling detached
  • Being unable to remember important aspects of the trauma
  • Lack of interest in normal activities
  • Hiding your moods
  • Avoiding places, people, thoughts or things that remind you of the trauma
  • Feeling as though you have no future

3. Arousal

  • Difficulty concentrating
  • Startling easily
  • An exaggerated response to things that startle you
  • Feeling more aware of negative things
  • Irritability and angry outbursts
  • Difficulty falling or staying asleep

If you have severe depression, a doctor, loved one or guardian may need to guide your care until you’re well enough to participate in decision making. You may need a hospital stay, or you may need to participate in an outpatient treatment program until your symptoms improve. http://www.mayoclinic.com/health/depression/DS00175/DSECTION=treatments-and-drugs

Here’s a closer look at your depression treatment options.

Medications
A number of antidepressant medications are available to treat depression. There are several different types of antidepressants. Antidepressants are generally categorized by how they affect the naturally occurring chemicals in your brain to change your mood. You can view the entire section on medications by following the above link to the Mayo clinic.

Types of antidepressants include:

  • Selective serotonin reuptake inhibitors (SSRIs). These medications are safer and generally cause fewer bothersome side effects than do other types of antidepressants. SSRIs include fluoxetine (Prozac), paroxetine (Paxil), sertraline (Zoloft), citalopram (Celexa) and escitalopram (Lexapro). The most common side effects include decreased sexual desire and delayed orgasm.
  • Serotonin and norepinephrine reuptake inhibitors (SNRIs). These medications include duloxetine (Cymbalta), venlafaxine (Effexor XR) and desvenlafaxine (Pristiq). Side effects are similar to those caused by SSRIs.
  • Norepinephrine and dopamine reuptake inhibitors (NDRIs). Bupropion (Wellbutrin) falls into this category. It’s one of the few antidepressants that doesn’t cause sexual side effects.
  • Atypical antidepressants. These medications are called atypical because they don’t fit neatly into another antidepressant category. They include trazodone (Oleptro) and mirtazapine (Remeron). Both of these antidepressants are sedating and are usually taken in the evening. In some cases, one of these medications is added to other antidepressants to help with sleep. The newest medication in this class of drugs is vilazodone (Viibryd).
  • Tricyclic antidepressants. These antidepressants have been used for years and are generally as effective as newer medications. But because they tend to have more numerous and more-severe side effects, a tricyclic antidepressant generally isn’t prescribed unless you’ve tried an SSRI first without an improvement in your depression.
  • Monoamine oxidase inhibitors (MAOIs). MAOIs — such as tranylcypromine (Parnate) and phenelzine (Nardil) — are usually prescribed as a last resort, when other medications haven’t worked. That’s because MAOIs can have serious harmful side effects. They require a strict diet because of dangerous (or even deadly) interactions with foods, such as certain cheeses, pickles and wines, and some medications including decongestants. Selegiline (Emsam) is a newer MAOI that you stick on your skin as a patch rather than swallowing. It may cause fewer side effects than other MAOIs.
  • Other medication strategies. Your doctor may suggest other medications to treat your depression. These may include stimulants, mood-stabilizing medications, anti-anxiety medications or antipsychotic medications. In some cases, your doctor may recommend combining two or more antidepressants or other medications for better effect. This strategy is known as augmentation.

Finding the right medication
everyone’s different, so finding the right medication or medications for you will likely take some trial and error. This requires patience, as some medications need eight weeks or longer to take full effect and for side effects to ease as your body adjusts. If you have bothersome side effects, don’t stop taking an antidepressant without talking to your doctor first.

Antidepressants and pregnancy
If you’re pregnant or breast-feeding, some antidepressants may pose an increased health risk to your unborn child or nursing child. Talk to your doctor if you become pregnant or are planning on becoming pregnant.

Antidepressants and increased suicide risk
Although most antidepressants are generally safe, be careful when taking them. The Food and Drug Administration (FDA) now requires that all antidepressant medications carry black box warnings. These are the strictest warnings that the FDA can issue for prescription medications.

The antidepressant warnings note that in some cases, children, adolescents and young adults under 25 may have an increase in suicidal thoughts or behavior when taking antidepressants, especially in the first few weeks after starting an antidepressant or when the dose is changed. Because of this risk, people in these age groups must be closely monitored by loved ones, caregivers and health care providers while taking antidepressants. If you — or someone you know — have suicidal thoughts when taking an antidepressant, immediately contact your doctor or get emergency help.

Psychotherapy
Psychological counseling is another key depression treatment. Psychotherapy is a general term for a way of treating depression by talking about your condition and related issues with a mental health provider.

Through these talk sessions, you learn about the causes of depression so that you can better understand it. You also learn how to identify and make changes in unhealthy behavior or thoughts, explore relationships and experiences, find better ways to cope and solve problems, and set realistic goals for your life.

Hospitalization and residential treatment programs
In some people, depression is so severe that a hospital stay is needed. Inpatient hospitalization may be necessary if you aren’t able to care for yourself properly or when you’re in immediate danger of harming yourself or someone else. Getting psychiatric treatment at a hospital can help keep you calm and safe until your mood improves.

In this blog we have attempted to give you an overview of depression and its causes along with known effective treatment options.  Please remember, this is only a blog, it is not medical advice and we strongly suggest that you take no action based on what you read here.  See a qualified physician, ask a lot of questions and then make a decision.

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.

Are Profits More Important Than Cures?


By Bob Aronson

A Treatment for Almost Everything but Few Vaccines & Even Fewer Cures — Why?

Fair and balanced journalism is a very nice catch phrase but the stated goal is more than illusive, it is almost non-existent and that’s because there are never just two sides to a story.  There are often several sides so no matter how hard a reporter might try to be objective, there is no way you can cover every angle.  I do not pretend that this post is the endeavor of an investigative journalist, nor do I contend that this is an objective report.  What I offer here represents some observations and a few links to help illuminate the information.  I hope you find it useful.

According to the U.S. Census Bureau, the average life expectancy at the beginning of the 20th century was just over 47 years. A century later, that number had increased to nearly 78 years, due largely to the development of vaccinations and other treatments for deadly diseases.  We are living longer because medical science has provided us with treatments, medications, devices and surgeries that cure little but keep most threatening diseases at bay…and often at a phenomenal cost.

As a communications consultant specializing in healthcare I have worked with several pharmaceutical companies.  I know many researchers and I am aware of the dedication they bring to their jobs and to providing help to patients.  I know, too, how expensive it is to develop new drugs and all too often I have seen those efforts fail resulting in the loss of millions of hard-earned investor dollars.  In short, I have at least a passing acquaintance with the pharmaceutical industry and the financial risks they take to bring new drugs, treatments, procedures and devices to the marketplace.

At the same time I also understand the desire and the necessity to be profitable.  Without profitability no business can survive.  It is only fair to point out that the pharmaceutical industry (Big Pharma) has been incredibly profitable, despite the investments and even the losses.

Here is the list of the five biggest pharmaceutical companies based on 2010 revenues, in billions of dollars.

1.Pfizer                                                        $58,523,
Read the rest of this entry

Hepatitis C, Peter and Ashley. A Love Story.


For the past week or so I’ve been writing about Hepatitis C, mostly in clinical terms.  Today we begin to tell the human side of the story, the side that shows how devastating this disease can be and how it can bring out the very best in people.  It is the story of a Boston couple — each has the disease.  One far more seriously than the other.

Peter and Ashley Curran are my friends as a result of Facebook and Organ Transplant Initiative .  They are two of the dearest people I know not only because of how much they love each other but also because they are friends to all who are suffering from Hepatitis C, their caregivers and to everyone else in the donation/transplantation community.  These are two genuine, kind and loving people who face incredible adversity on a daily basis and never ask for anything.

The story you are about to read was written by Ashley at my request about her beloved Peter.  She writes only of Peter’s disease but doesn’t even begin to touch on the many other hardships they have faced nor those they are facing on a daily basis.  Ashley and Peter don’t have much,  but they have each other and by God in my book that makes them the richest people on earth.

If ever there was a story of love and compassion and of giving yes, giving (Ash and Peter give till it hurts) it is the Curran story.  Please, if you pray, say one or two for Peter and Ashley.  God gets distracted once in a while with all that’s going on in the world so let’s give him a nudge and remind him that Peter and Ashley could use a little of his grace.  It is people like Ashley and Peter who will get left behind as our national safety net gets ragged, torn and frayed.

More people in the United States now die from hepatitis C each year than from AIDS, according to a new report from the Centers for Disease Control and Prevention. More than 3.2 million Americans are currently infected with hepatitis C and the really bad news is that most people who have it don’t’ know it.

Let’s start with a definition.

According to the Mayo Clinic Hepatitis C is an infection caused by a virus that attacks the liver and leads to inflammation. Most people infected with the hepatitis C virus (HCV) have no symptoms. In fact, most people don’t know they have the hepatitis C infection until liver damage shows up, decades later, during routine medical tests.

Hepatitis C, Peter and Ashley.  A Love Story.

Written by Ashley Tenczar Curran

“You are going to need a transplant, your liver function is at about 10 percent”. I heard the words over the phone as my husband Peter and I were having our morning coffee. He had gestured for me to come over to the phone to listen in, and the words will never be extinguished from my mind.  I did not know then, in my shock and disbelief, that a shadow had fallen.

Peter and I met in 2000, a year that I was finally leaving my devastating drug addiction behind, and starting over. I had moved into a rooming house in South Boston, where Peter had been a tenant for about 7 years.  I wasn’t looking for love, especially in THIS wrong place. An overcrowded, “6 adults sharing the same bathroom” illegal “sober house” as it was advertised had enticed me because it was in good old “Southie”.

As I moved in, and was trying to carry my computer with one hand, doing a disastrous job of it, I heard a voice say “need some help?”  I realize how stupid this sounds, but I married Peter that instant.  He was 20 years older than me, and not my type at all. Laid back, calm, patient, and not overly talkative. I am the opposite.  He helped me plug in my computer, and left. I had been hit by some type of Divine thunderbolt, and I had not felt that feeling in a very long time.   We were facing insurmountable odds. He was just getting clean, tired of being “sick and tired”, and I was fresh out of a treatment program.
By all reasoning, we should have spent one week together and never seen each other again.

We should have died when we relapsed one time, several months after we met, to “try it one more time”, as if we had not destroyed out lives enough.  All I remember is waking up with a needle in my arm, and seeing Peter on the floor , with a needle in his arm.  We talked the next day, and loved each other enough to realize that we would lose each other if we used even one more time.  We finally, after some 15 years pursuing recovery, were unselfish enough to lay it down, and never return.

But the past always comes into the present, it is inevitable. I had been diagnosed with Hepatitis C, like most people I know, young and old, who have ever used a needle while doing drugs.  It is an epidemic of unimaginable proportions.
My virus was “undetectable” and remains that way to this day, 12+ years later.  Peter did not fare so well.

When we first started dating, I was amazed to listen to stories from other addicts, both active and in recovery, telling me that Peter is the kindest and most patient person they have ever met. I say this NOT for the purpose of this story, but my husband has some kind of way about him that instantly puts people at ease.  When my best friend Michelle overdosed in the room above ours, we tried to bring her back, and I wanted to kill the man who had given her the dope. Everyone who was there wanted to hang this man.   Everyone except Peter. He got the man some soda, gave him a cigarette, and sat him down to ask him what exactly had happened.

I remember the guy saying “Why are you being so nice to me?”

I have tried to model my behavior after my husband’s, being honest almost to a fault, and at the same time I am angry that I am not the one who is sick, that he , the patient and loving one has to be the one to go through the horrors of 22 medications several times a day, 3 years so far on the transplant list, (UNOS), and very little family support  (They were attentive and supportive at first, but now that the drama has settled, and they know it could be many more years before Peter gets his Gift of Life, they have gone on with their lives, and do not even invite him to family events anymore)
Peter does not get angry.

This is how I know that God will give him a transplant. This is not wishful thinking, because if you knew Peter, truly knew him, then you would know this also. He has a higher purpose, and God is not done with him yet.  He met a nurse, albeit a “disgraced” one, (me), who is 20 years younger than him, and who loved him from the first time she clamped eyes on him. He is my “Brad Pitt”, even in his weakened state.  I find I love him more , the sicker he gets.  The fight he puts up, the appointments, 4 in the past 2 weeks, and the humility he shows, the polite character he prides himself on, causing doctors and nurses to say over and over again “I wish I had 100 of HIM!”

Hepatitis C is overlooked. That is a FACT. So many young people are being diagnosed right as I type this, and the organ transplant lists, particularly the liver, are getting longer and longer. People are dying from a disease that is completely preventable, and that has a vaccination available!  Soon we will find that our young people are gravely ill, (we can see it now), and that scares me.  Peter said if he had a choice, he would give his liver transplant to a young person, as he has lived his life.

A lot of people think that “junkies” don’t deserve transplants, because “they did it to themselves!”

Well, to that I say “so cancer patients who chain smoked for years don’t deserve chemo and radiation, and costly experimental procedures because THEY “did it” to themselves?  So many diseases ARE the result of something “we have done wrong”.

The real shame is the stigma that society attaches to drug addicts. One person told me “taking pills is ONE thing, but putting HEROIN in your ARM with an IV? That is ridiculous!”   More people die from a combination of narcotic pills and another type of pill, typically a “benzo” like Valium than do from a heroin overdose (I.E. Oxycontin).

I don’t know what the future holds for my husband, or, for that matter, for me. But every day I remind him that God loves him, and I love him. We tell each other every day. Though we did that before he got sick, it resonates even louder now, because I could, in reality, be counting down the days that I get to hear his voice, and see his chest rise and fall, knowing he IS breathing, as I do so often.

Please consider being an organ donor.  There are so many people suffering like this, and putting their best foot forward to patiently wait for their turn. My husband, I believe, is the most patient “patient” that Beth Israel Hospital has ever had.

-0-

After three years on the waiting list, Peter and Ashley are considering looking for a living liver donor.  If you have an interest in helping this couple you may contact them directly on Facebook or leave a message here and I’ll make sure then get it.  Please everyone, if you pray,say one for Peter and Ashley.

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.

Hepatitis C — What You Need to Know


More people in the United States now die from hepatitis C each year than from AIDS, according to a new report from the Centers for Disease Control and Prevention. More than 3.2 million Americans are currently infected with hepatitis C and the really bad news is that most people who have it don’t’ know it.

Let’s start with a definition.

According to the Mayo Clinic Hepatitis C is an infection caused by a virus that attacks the liver and leads to inflammation. Most people infected with the hepatitis C virus (HCV) have no symptoms. In fact, most people don’t know they have the hepatitis C infection until liver damage shows up, decades later, during routine medical tests.

Hepatitis C is one of several hepatitis viruses and is generally considered to be among the most serious of these viruses. Hepatitis C is passed through contact with contaminated blood. http://www.mayoclinic.com/health/hepatitis-c/DS00097

According to the U.S. Centers For Disease Control (CDC) http://www.cdc.gov/hepatitis/c/cfaq.htm Hepatitis C is most commonly spread through the use of infected needles. Before 1992, when widespread screening of the blood supply began in the United States, Hepatitis C was also commonly spread through blood transfusions and organ transplants. Now we know that people can become infected with the Hepatitis C virus during such activities as

  • Sharing needles, syringes, or other equipment to inject drugs
  • Needlestick injuries in health care settings
  • Being born to a mother who has Hepatitis C

Less commonly, a person can also get Hepatitis C virus infection through

  • Sharing personal care items that may have come in contact with another person’s blood, such as razors or toothbrushes
  • Having sexual contact with a person infected with the Hepatitis C virus

***Note, the Executive Director at HCVets.com, Tricia Lupole, indicates that the CDC information may be incorrect. She made this comment on our Facebook page.

“HCV by sex is a risk if both partners experience trauma and exchange blood…. the only cells found is seminal fluids are dead cells…. confirmed by many microbiologist. http://www.ncbi.nlm.nih.gov/pubmed/15128350 There are 100s of studies that show this is the case but it is junk science that reins control of the message to control the funding. Lots of plans to make HCV the fall guy for bad behavior.“

In a second post she went on to say, “Yes, the CDC has quoted the same statement for about 15-20 years now. The study I posted is based on the CDC National Survey. Another sad point, last I checked. Even though we all know better the CDC says that there is not enough evidence to show tattoos are a risk factor.

AMA does not want to regulate tattoo parlors as medical procedures because they are responsible for guidance/ prevention. (The task has been given to OSHA).

Today Ms. Lupole issued this statement:

The Centers for Disease Control federal funding has decreased in recent decades, while there’s been increased demands for vaccination programs; resulting in limited resources for at-risk adults and other mandated priorities. The categorical nature of federal funding for HIV, STD, and viral hepatitis prevention limits the shifting of funds across program lines. In response to these funding woes, the National Center for HIV/AIDS, Viral Hepatitis, STD, and TB Prevention’s (NCHHSTP) captured HCV disease and redesign public health services to fit HIV programs, instead of critical public health needs. It’s important to note that HCV disease was previously integrated into federal research that included its viral family called Flaviviridae, whose members are Yellow Fever and Dengue viruses and transmit disease through mosquitoes. The HCV genome is almost identical to Dengue virus.


NCHHSTP’s Federal mandate is an integration of existing programs with new programs, like Viral Hepatitis, developed to mirror HIV/AIDS management model based on specific risks and disease pathology. STD and Substance Abuse programs associated with the spread of HIV/AIDS received increased attention and funding, blurring the other components of these programs.

Needless to say, NCHHSTP has meet with resistance from advocates and congressional leaders, because of this effort by public health agencies to narrowly define HCV’s pathology.


Today, NCHHSTP spends half the federal resources acquired for HCV to vaccinate patients with both Hepatitis A & B vaccines. The majority of remaining resources are directed at drug and STD intervention and prevention. The STD division must qualify for its share of funding by defining HCV a sexually transmitted disease.


Despite scientific proof that HCV is not an STD, NCHHSTP promotes HCV as an STD based on a handful of studies that bring about scientific uncertainty, working against broader public health threats. Research excluded several methods by which the virus transmits to insure standard elements comply with CDC corporate agreement requirements. Thus… junk science.
Such actions suggests this poor public health response to the HCV Disease epidemic, may be the direct result of a system in disarray – seemingly captured by special interest with legal and political agendas that have negatively influenced the response. The integration approach has created disparities in access to health care and created “social labels” that have fostered discrimination, responsible for the reduction in quality of life.

The enduring legacy of “junk science” and indifference of governments, nonprofits, advocates, political parties or economic elites, have grave and global consequences given the propensity for viral transmission in provider settings as seen in current headlines.

FY 2012 Hepatitis C transmission and prevention: latest news. Massive increase of hepatitis C incidence in HIV-positive gay men in Switzerland 30 August 2012 …http://www.aidsmap.com/Hepatitis-C-transmission-and-prevention/cat/1628/

• FY 2008- No evidence of a HCV epidemic in HIV negative gay men
Dr Turner et al. Data from attendees at a London GUM clinic suggest that there is no increase in HCV infections amongst HIV negative gay men.

• FY 2007- Injection Behavior, Not Sexual Contact, Accounts for Couples’ HCV Risk NEW YORK (Reuters Health) – Injection behavior, rather than sexual contact, accounts for the clustering of HCV virus (HCV) infection in heterosexual couples, according to a report in the June 1st issue of The Journal of Infectious Diseases.

• FY 2004 No Evidence of Sexual Transmission of HCV among Monogamous Couples: Results of a 10-Year Prospective Study The risk of sexual transmission of HCV virus (HCV) infection was evaluated among 895 monogamous heterosexual partners of HCV chronically infected individuals in a long-term prospective study, which provided a follow-up period of 8,060 person-years.

Either way, CDC or not…. junk science remains junk science. Wish the outcry would focus on piercing jewelry or the reuse of razors and personal care items verses a national message about a method that is least as likely as not. This battle over CDC junk science, goes way back and is in memory of many who passed HCV on to family members, while sacrificing pleasures of the mind, body, and soul. As you can imagine, sexual transmission is a constant worry for some. Their partner may catch/transmit this deadly virus through sex, protection or not….. yet… turn right around and share razors and other items as such.  Especially the economically depressed populations.”

Most recently, though, we’ve identified another way people may become infected and through no fault of their own. Recently in a New Hampshire hospital an employee who was a drug addict and who also had Hepatitis C was found to be injecting himself with filled syringes meant for patients, refilling the syringes with a harmless liquid non-pain killer and then replacing the needles and syringes on the tray to be used again. Below is one of the original stories on this 2012 incident.

‘Serial infector’ accused of spreading hepatitis at NH hospital

U.S. Attorney’s Office | ASSOCIATED PRESS

CONCORD, N.H. — Authorities in at least six states are investigating whether a traveling hospital technician accused of infecting 30 people with hepatitis C in New Hampshire also exposed earlier patients to the liver-destroying disease.

David Kwiatkowski, a former technician at Exeter Hospital, was arrested Thursday morning at a Massachusetts hospital where he was receiving treatment. Once he is well enough to be released, he will be transferred to New Hampshire to face federal drug charges, said U.S. Attorney John Kacavas, who called Kwiatkowski, 33, a “serial infector” who worked in at least half a dozen states.

Authorities believe Kwiatkowski stole drugs from a hospital operating room in another state, but they declined to name any of the other states, saying only that they are not clustered in one part of the country. They would not say in what hospital Kwiatkowski was being treated at so he couldn’t be contacted for comment.

This story brought new attention to hospital policies on infection control, narcotics control and patient safety and has had ripple effects across the nation if not around the world.

So…the next question is, how serious is hepatitis C? Chronic Hepatitis C is a serious disease that can result in long-term health problems, including liver damage, liver failure, liver cancer, or even death. It is the leading cause of cirrhosis and liver cancer and the most common reason for liver transplantation in the United States. Approximately 15,000 people die every year from Hepatitis C related liver disease.

What are the long-term effects of Hepatitis C?

Of every 100 people infected with the Hepatitis C virus, about

  • 75–85 people will develop chronic Hepatitis C virus infection; of those,
    • 60–70 people will go on to develop chronic liver disease
    • 5–20 people will go on to develop cirrhosis over a period of 20–30 years
    • 1–5 people will die from cirrhosis or liver cancer

The CDC strongly suggests that all baby boomers born since 1945 should get tested for Hepatitis C. http://tinyurl.com/8tg28x6Baby boomers account for 2 million of the 3.2 million Americans infected with the blood-borne liver-destroying virus. CDC officials believe the new measure could lead 800,000 more boomers to get treatment and could save more than 120,000 lives.

“The CDC views hepatitis C as an unrecognized health crisis for the country, and we believe the time is now for a bold response,” said Dr. John W. Ward, the CDC’s hepatitis chief.

Several developments drove the CDC’s push for wider testing, he said. Recent data has shown that from 1999 and 2007, there was a 50 percent increase in the number of Americans dying from hepatitis C-related diseases. Also, two drugs hit the market last year that promise to cure many more people than was previously possible.

What are the Symptoms of Hepatitis C?

Here’s what WEBMD says. http://www.webmd.com/hepatitis/hepc-guide/hepatitis-c-symptoms

Most people who are infected with hepatitis C-even people who have been infected for a while-usually don’t have symptoms.

If symptoms do develop, they may include:

  • Fatigue.
  • Joint pain.
  • Belly pain.
  • Itchy skin.
  • Sore muscles.
  • Dark urine.
  • Jaundice, a condition in which the skin and the whites of the eyes look yellow.

A hepatitis C infection can cause damage to your liver (cirrhosis). If you develop cirrhosis, you may have:

  • Redness on the palms of your hands caused by expanded small blood vessels.
  • Clusters of blood vessels just below the skin that look like tiny red spiders and usually appear on your chest, shoulders, and face.
  • Swelling of your belly, legs, and feet.
  • Shrinking of the muscles.
  • Bleeding from enlarged veins in your digestive tract, which is called variceal bleeding.
  • Damage to your brain and nervous system, which is called encephalopathy. This damage can cause symptoms such as confusion and memory and concentration problems.

What Treatment is Available?

So if you have Hepatitis C, then what? There are a number of options and there might even be a cure before too long. Standard state of the art treatment today for Hepatitis C is with Peginterferon and Ribavirin which achieves a “sustained response” up to 54% of people, which means that the virus has been eliminated from their blood after stopping treatment. People with hepatitis C types 2 and 3 have sustained response rates of about 80%; people with type 1 have rates of up to 50%.

While hepatitis C treatment has come a long way, there are still drawbacks. For a person who’s newly diagnosed, a 54% cure rate may not sound great. After all, it means that about one out of two people won’t respond to treatment.

Also, hepatitis C treatment is less effective in some populations. For reasons that no one understands yet, African-Americans are less likely to benefit from treatment. And the treatments may not be safe for people with other medical conditions — such as kidney failure, heart disease, or pregnancy. Interferon can also be expensive; according to the American Academy of Family Physicians, it can cost $6,000 per year. http://www.medicinenet.com/script/main/art.asp?articlekey=52451

It is important to note again, that while liver transplants can be very helpful to Hepatitis C patients, the procedure is not a cure but rather a delaying action and an effective one. There is some evidence that a transplant from a living donor to a patient who has been receiving the Interferon treatment could represent a cure. http://www.youtube.com/watch?v=3kOElXz0vVg

A Possible Medicinal Cure

Gilead Science is performing multiple studies to test an experimental drug, but the trial that is possibly the most intriguing looks at a combination therapy that rolls two medicines into a single pill. Gilead hopes to advance tests of its lead hepatitis drug GS-7977 in a combination with another company medicine, GS-5885.

Bristol Myers Squibb had a promising drug but clinical trials resulted in some negative results so the company has sent the project back to the drawing board. http://www.nytimes.com/2012/08/24/business/bristol-myers-ends-work-on-hepatitis-c-drug.html?_r=2&

Finally, Gilead Sciences, mentioned earlier, has a drug that combined with another from Bristol Myers Squibb could be a cure, at least clinical trials seem to offer that indication but the two companies, according to Hepatitis C activist Margaret Dudley can’t seem to cooperate. She is circulating a petition to get the “cure” on the market. http://hepc-cured.com/

October is National Liver Awareness month. We hope you have found these blogs helpful and offer these links for further information.

http://www.liverfoundation.org/

http://www.nlfindia.com/index.asp

http://www.mayoclinic.com/health/liver-problems/DS01133

http://tinyurl.com/92bjlup U.S. Government Link

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.

Prison’s Deadliest Inmate, Hepatitis C, Escaping


In our continuing series on Hepatitic C we offer this story from NBC and the Associated Press  3/14/2007

Public-health workers warn of looming epidemic of ‘silent killer’

Marcio Jose Sanchez  /  AP

VACAVILLE, Calif.  — The most dangerous thing coming out of prison these days may be something most convicts don’t even know they have: hepatitis C.

Nobody knows how many inmates have the disease; by some estimates, around 40 percent of the 2.2 million in jail and prison are infected, compared with just 2 percent of the general population.

Eventually, when they are released, medical experts predict they will be a crushing burden on the health care system, perhaps killing as many people as AIDS in years to come. At the same time, they will be carriers, spreading the disease.

Hepatitis C can be treated, but many prisons do not test for it. Among the reasons: Budgets are tight, and treatment is expensive. So prison officials close their eyes to the gathering emergency and pass it along to the outside world.

“Right now there’s a golden opportunity to bring solutions to this problem before it hits,” said Dr. John Ward, director of viral hepatitis at the National Center for HIV/AIDS at the Centers for Disease Control and Prevention in Atlanta.

Hepatitis C is already the most common disease of its sort in the United States — a chronic, life-threatening, blood-borne infection. It is most commonly linked to infected needles used for drugs, though prison tattoos and body piercing with non-sterile equipment are also risky.

‘Silent killer’
What makes this virus particularly insidious is that as many as half of the people who have hepatitis C don’t even know they have it. The “silent killer,” already considered epidemic by the World Health Organization, often remains dormant for decades.

Some of the infected are lucky: One in five people who get hepatitis C will clear it out of their system naturally. But without treatment, one in four will suffer liver failure or develop liver cancer. Last year liver cancer was the only one of the top 10 fatal cancers in this country to increase, in large part because of hepatitis C.

More than $1 billion is already spent each year on this country on hepatitis C, and those costs are expected to soar unless prevention and treatment are expanded.

Without those changes, researchers project that liver-related deaths will triple from around 13,000 in 2000 to 39,000 by 2030. It’s also estimated that 375,000 Americans with hepatitis C will develop cirrhosis by the year 2015.

Anita Taylor, 48, is already there, in end-stage liver disease. Taylor speaks very slowly and moves with care. She often finds that she can’t say the words she wants to — they just won’t come out. Her body hurts most of the time. Her nose bleeds a lot.

‘Doctor gave me a death sentence’
A mother of two and former heroin addict, Taylor said she learned she had hepatitis C when she was jailed in Nevada in 1991 for being under the influence of drugs.

“They tested me and told me I had hepatitis C. They didn’t tell me there was a treatment and a cure,” she said. “And I didn’t know to ask.”

Taylor’s experience is not unusual.

“The doctor gave me a death sentence, recalls Leslie Czirr, a 36-year-old parolee. “He told me, ’There’s no cure for this and you will die from it unless you are hit by a truck first,”’

Czirr learned she had hepatitis C during a prenatal examination in 1996, at a time when she wasn’t in prison. Czirr has been arrested 10 times for drug possession and served almost eight years in prison on various drug possession and dealing charges.

She has started to suffer exhaustion, brain fog and aches. She recently enrolled in a county program to be treated — treatment, she said, she was denied at California’s Norco State Prison.

“I asked and asked, but they barely want to give you a Motrin,” she said. “I really want to get well, not just for myself, but so I’m not putting anyone else at risk.”

Limited studies indicate that fewer than 10 percent of prisoners who have contracted hepatitis C are treated. The reason vary. Medical staff have other priorities, and not all are well-informed about the disease. Prisoners with short sentences are often excluded because they won’t be able to complete treatment, and drug addicts who are inclined to return to risky behavior are often turned away because it is assumed they will simply reinfect themselves.

No funding for treatment
Usually, though, it comes down to money. Prison officials say that even if they wanted to provide the treatment, it is extremely expensive — about $9,500 per patient per year — and no federal funds have been earmarked to pay for it.

“It’s a hard sell to convince taxpayers why additional resources should be spent on the health care of the incarcerated when there are a lot of people who aren’t incarcerated who don’t have adequate health care,” said Dr. Joseph Bick, chief medical officer at the California Medical Facility at Vacaville.

Many of the inmates in Vacaville’s hospice unit — reserved for those given six months or less to live — are dying from hepatitis C-related ailments. Bick said half of the prison’s 3,200 inmates have a history of having been infected with hepatitis C, and at any given time about 40 of those men are receiving the intensive drug treatment to cure it.

“I’m pretty sure this is how I got it,” said Anthony Harris, an inmate at Vacaville. He rubbed his forearm hard, as if trying to remove the prison tattoo bearing his children’s names.

Harris, 51, is a former barber serving a life sentence for second-degree murder. In 2003, a doctor at another prison told him he had Hepatitis C; he researched the disease in the prison library and has sought treatment ever since.

“They gave me shots for Hep A and B, got rid of them. I’d like to get rid of the C too,” he said. “I’m entitled to that. But some docs will give you the treatment and others won’t. I keep making appointments. I keep asking.”

The course of treatment can take a year, and involves taking pills twice a day and weekly injections. Side effects are like those associated with chemotherapy — nausea, exhaustion, depression, debilitating aches and pains — and the cure only works about half the time.

But Bick said the high cost of treating prisoners for hepatitis C is a bargain compared to the bill that would come due if these cases are left untreated. “It’s a tremendous opportunity for us to have an impact on the larger health of the community,” he said.

Dr. Lynn Taylor, an assistant professor of medicine at Brown University’s medical school, agrees that prison is “perhaps one of the best setting for treatment of high-risk individuals.”

‘Window of opportunity’ for public-health efforts
“Prison can be a window of opportunity to reduce the reservoir of infection,” she said.

But there are no federal rules about testing and treating hepatitis C. Federal guidelines, issued by the CDC in 2003, said correctional facilities should “become part of prevention and control efforts in the broader community.” But they don’t recommend screening for all inmates.

Instead, the CDC urged medical staff to ask new inmates about their risk factors, and only those prisoners who seem likely to be exposed should undergo screening, which costs $5 to $10.

The CDC guidelines fell short, said Dr. Josiah Rich, a professor at Brown who directs the university’s Center for Prisoner and Human Rights. Rich’s studies confirm that convicted criminals are almost always willing to be tested for hepatitis C, but will often lie to prison authorities about their past drug use.

“We already know that more than one in three people coming through corrections has Hep C, so by definition everyone coming in is high risk. It’s absurd that they’re not testing everyone,” he said.

Rich concedes that testing every inmate will “jack up costs” for prisons.

“An individual is going to say, ’Hey, you tested me, you said I was positive, and now I want to be treated, and I’m going to sue you if I don’t get treated,”’ he said.

Lawsuits on the rise
Lawsuits are, indeed, on the rise.

The first significant case came in 1999, when officials at the Luther Luckett Correctional Complex in La Grange, Ky., refused to allow inmate Michael Paulley access to free hepatitis C treatment. Paulley, who was serving a 25-year sentence for rape and burglary, sued and won.

But the treatment came late and he died in 2004, the year he would have been eligible for parole. The litigation prompted broader testing and treatment in Kentucky, but Paulley’s physician, Dr. Bennet Cecil, a Louisville, Ky.-based hepatitis C specialist, said prisoners still die “all the time” for untreated hepatitis C.

“I think it’s immoral if a country, a state a society is going to incarcerate somebody and then deny them necessary medical care. I think that’s an outrage,” he said.

Prisons in at least a dozen states — Alabama, California, Delaware, Florida, Georgia, Idaho, Michigan, Mississippi, Nebraska, New York, Oklahoma and Virginia — are being sued over failure to treat hepatitis C.

But it’s tough going, said Oregon civil rights attorney Michelle Burroughs. Although she’s won a settlement that mandated testing for at risk inmates and treatment for those who are eligible, five of the 10 inmates she’s representing in a class-action lawsuit have died while the litigation proceeds.

5-year wait
“It’s appalling, horrendous, horrifying. Prisoners wait five years just to be evaluated,” she said.

Rep. Barbara Lee, D-Calif., recently reintroduced legislation that would mandate prison testing and treatment of hepatitis C. Earlier similar proposals in recent years have failed.

“The plain fact is that prisoners do not stay in prison. With more than 90 percent of incarcerated persons returning to their communities, it is clear that when a prisoner is infected, we are all affected,” Lee said.

In North Dakota, it didn’t take legislation, court orders or new regulations to prompt medical services director Kathleen Bachmeier to begin screening every inmate for hepatitis C after a methamphetamine epidemic tripled her state’s prison population in about a decade. As the intravenous drug addicts arrived, so did the hepatitis C.

“It became obvious to me that these people are going to cost the state a lot of money if we don’t do something about it,” she said.

North Dakota now treats anyone who meets certain medical criteria, whose sentence is long enough to complete the course of treatment and who is willing to try to quit using drugs.

“We look at this as a huge public health initiative,” she said.

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.

Hepatitis C — No One is Immune Everyone is Affected


More people in the United States now die from Hepatitis C each year than from AIDS  according to a new report from the Centers for Disease Control and Prevention.   More than 3.2 million Americans are currently infected with Hepatitis C and the really bad news is that most people who have it don’t’ know it.

In coming days I will publish more information and heart wrenching stories about Hep C and the patients it affects, the lives it wrecks and what it costs our society in both human lives and dollars…it is astounding.

Hep C is a disease of the liver that society likes to keep in the shadows because of some of the ways in which it is contracted, but we cannot begin to deal with a disease if it is kept secret and treated as though it was sinful and dirty.  It isn’t.  The people aren’t and they need our help and our compassion.

Hepatitis C can be treated and there are some exciting possibilities on the horizon but now there is no available cure,  not even a liver transplant is a cure because Hepatitis C is systemic.

To get us started on the road to understanding please view this video.  It says more in a few minutes than anything I can write at this moment.  Please share the video with others and then watch this space for more.  I fully intend to say a lot more on the subject of this disease that affects so many of my friends.

Thank you  http://www.youtube.com/watch?v=J4TCo-qVoKk

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.

Cystic Fibrosis — The Victims are Heroes


CF is Cystic Fibrosis. Most of us know nothing about it even though we are familiar with the term. CF is a devastating disease causing constant discomfort and requiring intense and frequent treatment.

A CF patient must start every day with an extended and sometimes agonizing period of therapy. Often that therapy has to be repeated several times during the day. I’ve known several CF patients and to me they are special because of the heroic efforts they must put forward every day just to be able to approach normal functioning. Most diseases are difficult to manage but CF patients need to get physical in order to function. They are amazing people.

CF is one of those diseases in which a Lung Transplant is sometimes necessary and quite helpful but the procedure does not cure the disease. We’ll discuss that option more later.

I don’t have CF but I do have Asthma and Chronic Obstructive Pulmonary Disease (COPD) so I can at least relate to the part of CF that causes difficult breathing.  The Clinical description of CF sounds bad enough but until you’ve experienced what it’s like to struggle for air it Is difficult if not impossible to understand.  One CF patient said, “It feels like you’re breathing through a small straw all the time.”

Difficult breathing alone is a terrible affliction but CF is much more than difficult breathing, it affects almost the entire body.   This definition from Medicine Net seems to sum up the disease in graphic, therefore understandable terms (http://www.medicinenet.com/cystic_fibrosis/article.htm).

“Cystic fibrosis mostly affects the lungs, pancreas, liver, intestines, sinuses, and sex organs. Mucus is a substance made by the lining of some body tissues. Normally, mucus is a slippery, watery substance. It keeps the linings of certain organs moist and prevents them from drying out or getting infected. However, if you have cystic fibrosis, your mucus becomes thick and sticky.

The mucus builds up in your lungs and blocks your airways—the tubes that carry air in and out of your lungs. The buildup of mucus makes it easy for bacteria to grow. This leads to repeated, serious lung infections. Over time, these infections can severely damage your lungs.

The thick, sticky mucus also can block tubes, or ducts, in your pancreas. As a result, the digestive enzymes that your pancreas makes can’t reach your small intestine.

These enzymes help break down the food that you eat. Without them, your intestines can’t fully absorb fats and proteins. This can cause vitamin deficiency and malnutrition because nutrients leave your body unused. It also can cause bulky stools, intestinal gas, a swollen belly from severe constipation, and pain or discomfort.

Cystic fibrosis also causes your sweat to become very salty. As a result, your body loses large amounts of salt when you sweat. This can upset the balance of minerals in your blood and cause a number of health problems. Examples include dehydration (a condition in which your body doesn’t have enough fluids), increased heart rate, tiredness, weakness, decreased blood pressure, heat stroke, and, rarely, death.” The Clinical description of CF sounds bad enough but until you’ve experienced what it’s like to struggle for air it Is difficult if not impossible to understand.

The Cystic Fibrosis Foundation (www.cff.org/home/) Says this about the disease.

“Cystic fibrosis is an inherited chronic disease that affects the lungs and digestive system of about 30,000 children and adults in the United States (70,000 worldwide.   An additional ten million more—or about one in every 31 Americans—are carriers of the defective CF gene, but do not have the disease. CF is most common in Caucasians, but it can affect all races”.

In the 1950s, few children with cystic fibrosis lived to attend elementary school. Today, advances in research and medical treatments have further enhanced and extended life for children and adults with CF. Many people with the disease can now expect to live into their 30s, 40s and beyond.”

The sad fact of life for the approximately 30,000 Americans who suffer from cystic fibrosis (CF) is that they must get their chests pounded at least twice a day.

Chest pounding, also known as chest percussion, loosens the thick mucus that forms in the lungs of CF patients, allowing them to cough or sneeze up mucus and consequently breathe more easily. Chest pounding is a primary therapy for treating the disease.

To achieve chest percussion, CF patients today have two main choices: they can have a respiratory therapist perform the chest-pounding or they can purchase a CF “vest.” The vest, once the patient puts it on, uses air waves to shake the whole upper body, helping to loosen mucus in the lungs.

In this video a young woman not only demonstrates the vest but has some fun with it.  http://www.youtube.com/watch?v=NEBM7ediRic&feature=related

Symptoms of Cystic Fibrosis

From the Mayo Clinic

http://www.mayoclinic.com/health/cystic-fibrosis/DS00287/DSECTION=symptoms

Respiratory signs and symptoms
The thick and sticky mucus associated with cystic fibrosis clogs the tubes that carry air in and out of your lungs. This can cause:

  • A persistent cough that produces thick spit (sputum) and mucus
  • Wheezing
  • Breathlessness
  • A decreased ability to exercise
  • Repeated lung infections
  • Inflamed nasal passages or a stuffy nose

Digestive signs and symptoms
The thick mucus can also block tubes that carry digestive enzymes from your pancreas to your small intestine. Without these digestive enzymes, your intestines can’t fully absorb the nutrients in the food you eat. The result is often:

  • Foul-smelling, greasy stools
  • Poor weight gain and growth
  • Intestinal blockage, particularly in newborns (meconium ileus)
  • Severe constipation

Frequent straining while passing stool can cause part of the rectum — the end of the large intestine — to protrude outside the anus (rectal prolapse). When this occurs in children, it may be a sign of cystic fibrosis. Parents should consult a physician knowledgeable about cystic fibrosis. Rectal prolapse in children may require surgery.

Currently, there is no cure for cystic fibrosis. However, specialized medical care, aggressive drug treatments and therapies, along with proper CF nutrition, can lengthen and improve the quality of life for those with CF.

Each day most people with CF:

  • Take pancreatic enzyme supplement capsules with every meal and      most snacks (even babies who are breastfeeding may need to take enzymes).
  • Take multi-vitamins.
  • Do some form of airway clearance at least once and sometimes up to four      or more times a day.
  • Take aerosolized      medicines—liquid medicines that are made into a mist or aerosol and then inhaled through a nebulizer.

Because CF is a complex disease that affects so many parts of the body, proper care requires specialized knowledge. The best place to receive that care is at one of the more than 110 nationwide CF Foundation-accredited care centers

Lung transplants

While lung transplants are an option for CF patients, the procedure will not cure the disease, because the defective gene that causes it is in all of the cells in the body, not just in the lungs. At this time, scientists are not able to “fix” genes permanently but they are working on it. . While a transplant does give a person with CF a new set of lungs, the rest of the cells in the body still have CF and may already be damaged by the disease. Further, organ rejection is always possible and drugs that help prevent organ rejection can cause other health problems.

Cost and available help

As is the case with most chronic diseases treating CF can become very expensive but there are programs that exist to help patients with these challenges.  Many people with CF use Cystic Fibrosis Services, Inc., a specialty pharmacy that is a subsidiary of the Cystic Fibrosis Foundation. It provides access to CF drugs, offers patient assistance programs and works to help resolve complex insurance issues. CF Services is a participating provider with more than 5,000 insurance plans and nearly 40 state and federally funded programs. Visit www.cfservicespharmacy.com or call (800) 541-4959.

In 2008, the CF Foundation launched the Cystic Fibrosis Patient Assistance Program (CFPAF) as a nonprofit subsidiary. The CFPAF helps people with CF (who qualify) who need FDA-approved medication or paired drug-delivery devices for the nebulized treatment of CF-related pulmonary disease, or an FDA-approved medication for the treatment of pancreatic insufficiency related to CF. Case managers at the CFPAF help people with CF with ways to reduce out-of-pocket costs for CF drugs. All funds distributed by the CFPAF are provided by grants from drug manufacturers. Visit http://www.cfpaf.org or call (888) 315-4154.

CF drug companies often offer a range of patient assistance programs — from giving out samples of new CF products, to providing free nutritional supplements, to accepting voucher payments for CF drugs. Find out more information in the Foundation’s archived Web cast entitled, ” Patient Advocacy: Issues and Answers for CF.”

Suggested resources

Cystic Fibrosis is a terrible disease and while progress is being made in treating it, lifespans for its victims are still relatively short.   If you’d like to help fund research or offer assistance in other ways contact the Cystic Fibrosis Foundation http://www.cff.org/GetInvolved/ManyWaysToGive/MakeADonation/

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.

Addiction — A Journey Into Hell


If you are suffering from organ failure and you are an addict you can be eligible for an organ transplant but you have to be clean and sober first and  most transplant centers require at least six months of sobriety before they will consider you.

Yesterday I posted a blog “My Last Drunk..” about the time 30 years ago I checked myself into treatment for alcoholism.  It was not a particularly outrageous story but it was significant  to me because it was my very last drunk.

I write a lot about addiction because it is one of the primary killers of human organs and because this group is dedicated to ending the organ shortage I’m hoping that stories about addiction and recovery will  help those suffering from the disease find their way into a recovery program.  If we can do that the demand for organs will decrease and those who remain on the list will have a better chance of getting a transplant.

I realize that there are many who refuse to believe that addiction is a disease and many who think addicts even if they are in recovery should not be eligible for transplants because of what they did to themselves.  And I will be the first to admit that addicts do the damage to themselves but it’s not on purpose, it is not because they choose to destroy their organs, their families and their careers.  Who would be crazy enough to do that?  The life of an addict is pure hell and readers will just have to believe me when I say, “No one would choose to live like that, no one!”

When you are an addict you are totally out of control and you don’t set out to harm anyone including yourself but the power of the disease is so great it is irresistible.  When the demand for your drug of choice invades your body you must respond to it no matter who gets hurt along the way. You will lie, cheat, steal and in some cases even physically harm anyone who gets between you and, in my case, my bottle.

Being an addict also means you spend inordinate amounts of time trying to figure out how to feed your habit.  With alcohol money is not as much a problem as with illegal or prescription drugs.  Alcohol is easy to get and relatively cheap but you still must plan.  In most places you can’t buy a bottle of booze on a Sunday so you have to make sure that you have enough booze on Saturday to take you through Monday.  Then in many cases, especially if you have a family you don’t want to know about your addiction, you have to have a place to hide your drug of choice.  I had a secret panel in the wall of our finished basement, a cubby hole In the garage, a special place in a sand pit near my home where I could hide and then dig up my bottle, inside an old tire in the garage and the bottom of the waste basket under used paper towels in the men’s room at my place of employment.

If illegal drugs are your problem then money becomes a huge issue and you will either steal it or con your best friends or family out of it by manipulating them in any one of a number of ways.  No lie is too outrageous for the addict and in many cases no action is too outrageous.  That’s how powerful the addiction is.  You will literally sell your soul to get what you need and the worst part of it is that you can’t even really get high anymore, you use to try to feel normal but all you really get is sicker and sicker both mentally and physically until either you are hospitalized, treated or die.

Addiction will overwhelm your sense of ethics, pride, morals, self-worth and will to live.  I remember having a conversation with myself once in which I said, “Bob you have to stop drinking, you are killing yourself!”  My response without thinking and without pause was, “I don’t care.”  That’s the power of the drug.

When I drank I sometimes consumed up to two quarts of vodka a day.  I was a big man 6’4” and 250 lbs.  I could hold a lot and miraculously I functioned.  I got up every day, put on a suit threw a quart of vodka in my oversized briefcase and went to work.  I drank my way through four years as a Governor’s press secretary and appeared to many if not most to be sober, I almost never was.

In the four years I anchored Morning Edition on the Minnesota Public Radio Network I rarely drew a sober breath yet I interviewed people, had impeccable timing, read news and performed all the other duties an on-air person can do. Sometimes I struggled mightily to keep from slurring words and to walk straight but I was able to fool most  of the people, most of the time.

But it all catches  up with you and at some point you find yourself in places and with people you would not normally associate with.  It is as though the rest of the world can’t see you.  All the while you know it is wrong but you just keep sinking deeper and deeper into the bottomless pit of despair and the more you realize how you have degenerated the more you use your drug of choice to help you forget what you have become.

Addiction is a horrible disease and as I mentioned in yesterday’s blog it cannot be overcome with will power it takes help, a lot of help from a lot of people and then it takes superhuman effort and the help of those same people and even more to stay sober.

One of the toughest parts of recovery is following the Alcoholics Anonymous step that dictates that you make amends to those you have harmed.  It means you must apologize and it also means your apology may not be accepted and you have to learn to live with that.  It’s part of the soul and conscience cleansing process and it is difficult but necessary.

Recovery from addiction is on-going.  You are never recovered because one drink, just one, will send you right back into that deadly spiral into the depths of living hell.  As the expression goes, “One drink is too many and a thousand is not enough.”

I’ll close with this. If you are an addict, there is hope and there is help. It isn’t easy and it isn’t quick but it can work and you can live a normal life again but you cannot do it alone.  You need help.  You can start by calling your local chapter of Alcoholics Anonymous or Narcotics Anonymous or any accredited treatment center. In most cases insurance will cover treatment.  If you are uninsured there is still help available through AA and NA.  It is only a phone call away. You just have to take it one day at a time, sometimes, it is one moment at a time but it is always moving forward, sober!

f you are an addict, think you might be or know someone who needs help here are some resources. 

http://nationalsubstanceabuseindex.org/

http://www.addictionresourceguide.com/resources.html

http://www.drugabuse.gov/publications/principles-drug-addiction-treatment/resources

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.

My Last Drunk The Beginning of a New Life.


My name is Bob Aronson.  I went to work every day wearing a suit.  I had been a popular radio and TV personality in another market, Press Secretary to a Minnesota Governor and was now the first Anchor for Morning Edition on the Minnesota Public Radio Network headquartered in Minnesota’s twin cities.  I was a major market radio host and newsman and that’s no small feat.  For all intents and purposes I was a respected member of society.  I had one small problem; I was also an uncontrollable drunk.   Following is but one day in the life of an alcoholic.

I’m telling this story because alcoholism and addiction is one of the greatest destroyers of human organs.  My long term addiction to alcohol and cigarettes (I quit smoking in 1991) quite likely contributed to my need for the heart transplant I received in August of 2007. 

Addiction is horrible, it is a terrible existence and the addict is powerless to stop it without help.  The craving for the drug, whatever it is, is stronger than any force you will ever encounter.  It overpowers reason, common sense, logic and even the love of family.  It destroys your moral code, your sense of ethics and even your hygiene.  You begin to live your life for the drug.  It is your best friend.   

Those of you without an addiction will have trouble understanding this and I’ve heard many of you say, “Just use some will power!”  O God if it were that easy.  I remember an addiction counselor telling a group  once, “Using will power to conquer addiction will get the same result as trying to use will power to control diarrhea.”  She was so right.

Following is but one slice of a long life of alcoholism.  It is the day, 30 years ago, that I stopped drinking.  This not the worst story I could tell, those aren’t even fit to print, but rather this is the  most significant because it marked the beginning of my sobriety.

I  should point out, too, that once a drunk always a drunk its just that some of us drunks are sober.

On July 17 of 1982 I awakened early in the morning with a splitting headache and nausea.  I stumbled through the bedroom covered in my own vomit to make it to the bathroom. Kneeling on the floor before the toilet I retched over and over again but there was nothing left in my stomach.  Its contents were on and around my bed and my t-shirt and underwear. 

When the retching stopped I stripped and stepped into a cold shower that felt like a million icy pinpricks.  I thought I smelled sauerkraut in the house but none was cooking, the odor was me.  I stunk.  I scrubbed my body as hard as I could but not having eaten in several days my strength was at a minimum and taking a shower was wearing me out.  You see, I wasn’t just suffering plain old flu, mine was a special flu that I brought on myself…it came out of a bottle marked Vodka 80 proof.  This was the granddaddy of all hangovers.

Freshly showered and shaved I descended the staircase to the first floor of our home to find it empty.  A terse note on the kitchen table told me my wife had gone to see some friends.   “So what” I thought.  “I’d rather be alone anyway.” 

Descending yet another set of stairs I found my way to the basement where behind the paneled walls I had built a secret compartment that housed my best friend, a quart bottle of 80 proof cheap vodka.  You see, when you are a drunk you drink for effect not for taste so why waste money when after a couple of swallows you can’t taste anything anyway. 

I removed the bottle from its cobwebbed hiding place, cracked the seal, removed the cap and put the opening to my lips.  As the clear liquid burned its way down my throat, I felt rescued.  The effect was almost immediate, I felt good again and didn’t give a damn about anyone but me.  Another couple of quick slugs and I was even better but by the time I got to the top of the basement stairs the alcohol hit me harder than ever before.  Because I hadn’t eaten in days and was not getting rest my resistance was down and I was drunk immediately.  

 In my addled brain I thought, “Another drink will fix this,” so I made my way back to the basement, recovered the bottle and literally crawled up the stairs into the kitchen where I fell into a kitchen chair uncapped the bottle and took another long slug.  In the few brief moments I had been awake I had already consumed a half quart of vodka. 

My mind was mush but somehow I remembered the night before, when we were to entertain my boss and his wife for dinner.  My wife had never met them so she was a little anxious.  I told her not to worry and busied myself with preparing our outdoor barbecue dinner.  Our garage was detached from the house so while I was out messing with the grill, I made a few trips into the garage for a rendezvous with another hidden bottle.  About 45 minutes before our guests were to arrive I had quite a buzz going but found a way to sneak another long swallow after which I told my wife I was going to lie down until the company came. 

Flashback now to my opening sentence because that’s the next thing I remember after lying down.  I went upstairs and passed out.  My poor wife was left to entertain people she had never met and, I was told later, made up the excuse that I had gotten very sick and had to go to bed.  She entertained them for the evening while I slept the sleep only a drunk can know. 

As I sat at the kitchen table, the realization of what must have happened made me realize how low I had sunk and I polished off the quart of vodka to somehow assuage my guilt.  Here I was with my head the table, drunk again, remorseful and needing another drink but my stash was gone.  I had no more and knew I could not drive — hell, I could hardly walk.

Reluctantly I picked up the phone and dialed my brother.  I told him I needed help because I thought I was an alcoholic.  He drove me to a treatment center and that’s when my life began anew.  

I need to pause here for a moment to offer thanks to some people who gave me a much needed break Bill Kling, founder and President of Minnesota Public Radio,  Sally Pope Kling his wife, Rick Lewis, who then was the VP of News at MPR and John Merli, the News Director..  They not only allowed me time to recover but to come back to MPR and continue to work.  Thanks Bill, Sally, Rick and John.  And…of course my brother Terry who took  me to treatment.  All of you will always be in my thoughts and prayers.

Within a year I started my own communications consulting business which I am still practicing. 

If you are an addict, think you might be or know someone who needs help here are some resources. 

http://nationalsubstanceabuseindex.org/

http://www.addictionresourceguide.com/resources.html

http://www.drugabuse.gov/publications/principles-drug-addiction-treatment/resources

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. 

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