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Why Some Docs Won’t Prescribe Narcotics no Matter How Bad the Pain


Having Trouble Getting Pain Killers?  Here’s why.

Some Florida physicians are mighty gun shy  about prescribing narcotic painkillers for their patients and many of us who need them are being made to suffer unnecessarily.lots ofdrugs

I have osteoarthritis in my neck, back and a few other places.  Osteoarthritis is very painful.  I also get severe muscle spasms in my neck and shoulders.  The pain from the arthritis and the spasms is so intense it is beyond description.  It is get on the floor, pound your fists and scream pain…the kind that makes you cry and beg for relief, but for a lot of us here in Florida there is no relief.  Some physicians will go to almost any extreme to avoid prescribing drugs like Oxycontin, Oxycodone, Dilaudid  or almost any other controlled substance.

The drugs I mentioned are very powerful and addictive narcotics. Oxycontin is a time release drug, Oxycodone (the same drug) acts immediately and Dilaudid acts immediately and is said to be more powerful than morphine.  They are heavily controlled substances and should be.  They are dangerous drugs.

Florida used to be the place that prescribed those drugs for the rest of the nation.  In 2010, 90 of the top 100 oxycodone-purchasing doctors in the United States resided in Florida but then the Drug Enforcement Administration (DEA) cracked down — hard and many of the major clinics overreacted.  (read the full story on Florida’s narcotics prescription problem here http://articles.orlandosentinel.com/2013-04-06/news/os-prescription-drug-epidemic-2013-20130406_1_prescription-drugs-central-florida-certain-drugs )

Deaths attributed to opioid analgesics now exceed those involving heroin. By 2010, enough opioid analgesics were sold to medicate every American adult with a typical dose of 5 mg of hydrocodone every 4 hours for 1 month – See more at: http://www.pharmacytimes.com/news/Is-Floridas-Oxycodone-Problem-Under-Control#sthash.1sMZdorU.dpuf

It wasn’t only physician who were a problem, the monster drugstore chain Walgreens was involved, too.  http://tinyurl.com/l2t7ohc   The U.S. DEA said, corporate officials at Walgreens implemented bonus programs that incentivized pharmacists to sell oxycodone and ignore “red flags” that customers were abusing the popular painkiller, which leads us to our current dilemma.walgreens

Chances are if you are post-surgical, need a root canal, have cancer or a broken leg your physician will prescribe whatever you need.  But if you have chronic back pain, arthritis, muscle spasms or any other kind of pain that is not easily verifiable you are likely going to have trouble getting narcotics in some clinics.

I should point out here that I despise narcotics.  I am, since 1982, a recovering alcoholic.  I have to be extremely careful about addictive substances but I have tried virtually everything that modern medicine has to offer and narcotics seem to be the only way to get some relief from the absolutely debilitating pain I suffer on a daily basis.  My doctors, specialists in my particular ills have so far refused to provide me with any pain relief other than various forms of aspirin or Tylenol.  They are always careful to add that I can get pain relief from my “Primary.”

In fairness I must agree with their assessment that narcotics only hide the pain, they do not cure it.  I agree that physicians should look for the root cause and attempt to treat the pain by other means including physical therapy but in the time between the diagnosis and the ultimate treatment narcotics can provide relief.  No one should have to live with almost unbearable pain.  It is in that period between diagnosis and cure or treatment that narcotics have a legitimate place.  And…sometimes, however rare that may be, sometimes narcotics are the only answer to chronic pain.  Physicians have the training and the diagnostic tools to determine who has real pain and who is seeking to feed a habit or to sell prescription drugs illegally.

When a person has surgery or breaks a leg it is quite obvious that pain killers are needed and they are most often given…that is not the problem.  The problem lies with those who suffer from chronic pain…pain that cannot always be seen on an x-ray, CT scan or MRI.  Their pain is just as real as that suffered by someone with broken bones but getting relief from the discomfort is far more difficult because of the irresponsible behavior of a very small number of physicians and companies like Walgreens.

So what do you do if you are in pain and need a painkiller?  Well, you can get relief but it will take some legwork and it won’t be easy.

In order to get a prescription for a pain killer now in Florida you first have to convince a physician you need it and that is not easy.  Pain is one of those symptoms that is hard to measure.  Most physicians won’t prescribe narcotics for new patients…they’d like to get to know you first.  The real tragedy, though is that if you go to a major medical center like Mayo and need a powerful painkiller they will likely tell you to get it from your primary care physician.pain  Mayo is mostly a specialty clinic and while they have a few primary care physicians the number is small.

My primary care physician is not a Mayo Doc so when I tell him “Mayo says you should prescribe the narcotic,” the primary care doc says, “Why me?  They have all the fancy diagnostic tools, they came up with the diagnosis and they have all of your medical records, they should also prescribe the drugs.”

And to me that makes perfectly good sense.  Why should the Primary care doc put his license on the line?  Fortunately my primary, a first class professional who I have known for a long time has agreed to take care of me but the way the law is written, monitored and enforced makes him very nervous.

First the physician has to see and examine you to determine if the claim is legitimate.  Then he/she has to write the prescription.  They cannot call or fax the prescription in to a pharmacy as they can with most other drugs. When narcotics are involved the patient must hand deliver the script to the pharmacist and there are no automatic refills.  When you run out and need more you have to call your physician again for an appointment, have him or her write another prescription and again take it to the pharmacy.prescription

I understand completely why the law has to be so tough.  People were making millions of dollars on prescription drugs and thousands, maybe millions of people were becoming addicts as a result.  But for those of us who only want pain relief it’s a different story.  Somehow there should be an accommodation for patients who really are in pain…and especially those of us who are not quite as agile as others and sometimes have to depend on others to get us to the doctor and to the pharmacy.

This is a very important issue and should be dealt with in a reasonable way but when the DEA is breathing down your neck and lawsuits are possible the medical profession retreats and patient care becomes a secondary issue.  That’s not right.

I want to pause here for a moment to point out that Mayo has saved my life more than once.  It was at Mayo in Jacksonville that I got a heart transplant in 2007 and my care there is beyond reproach.  I have nothing but respect for the Mayo team and the manner in which they practice medicine but being as it is the place where I get 99.9% of my care they become part of this story.  When I have had surgery there or was seen for an injury there was no hesitation in providing me with the narcotics I needed to aid in the healing process.   It is when you have pain like mine that you hear the words, “See your primary (meaning see your primary care physician).”

Recently in a clinic visit I asked a physician who was intimately familiar with my condition if he could write me a prescription for a narcotic painkiller being as nothing else was working and it would be some time before I could get into physical therapy.  His terse response as he walked out of the room was, “I can’t do that, see your primary.”  The fact is he can do that…he didn’t want to.

Sometimes the arrogance of physicians is beyond belief.   They deny you pain relief and schedule physical therapy three weeks later.  What do they expect will happen in those three weeks?  Don’t they understand or even care that it will be three weeks of sanity challenging pain?  My sense is they don’t care about your pain — they are far more worried about protecting their licenses.

If the Hippocratic oath really says, “First do no harm,” the physician who denies relief to someone in real provable pain is violating his/her oath because by denying medication, they are doing great bodily and psychological harm.  Shame on them.  As far as I know there is no law, rule or restriction that requires narcotics prescriptions be written by primary care physicians only.  “See your primary” is code for, “The best way to stay out of trouble is to avoid writing any prescriptions for narcotics by passing the buck to primary care physicians in private practice.”

Physicians should have the guts to say, “My patient is in pain and I’m going to prescribe something to help him.” My experience, though, is that many of them would rather pass the buck to another physician who is also afraid of losing his or her license.

Have you had an experience like this?  If so I’d like to hear from you. I fully intend to write more on this issue and will do so not only from my experience but will also draw on what I’m hearing from other patients like myself who have provable, medically verifiable pain and are candidates for narcotic pain relief but are being denied treatment.

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

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

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

If you want to spread the word personally about organ donation, we have another PowerPoint slide show for your use free and without permission. Just 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.

En Espanol

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

Por favor, consulte nuestro nuevo video musical “Dawn Anita The Gift of Life” en https://www.youtube.com/watch?v=eYFFJoHJwHs YouTube. Este video es libre para cualquier persona que quiera usarlo y no se necesita permiso.

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

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

Transplants — With An Emphasis on Recovery (by organ)


The organs most commonly transplanted are Heart, Kidneys, Liver, Pancreas, Lungs and Intestines.  The entire process of organ transplantation is traumatic, from the time you are diagnosed  through the evaluation process, your time on the waiting list and finally recovery from the surgery.   If you are told you are going to need an organ transplant you are also being told that your life is about to change dramatically.

THE DIAGNOSIS

When you are diagnosed as needing a transplant you are being told that there are no good recovery alternatives for your disease.  It is likely that most of them have been tried.  While the physician is unlikely to tell you that your days are numbered you will probably hear that you that you have an end-stage disease.  That’s Dr. talk for, “You are dying.”  Getting that news is a traumatic event and you may need to discuss it with someone or even get professional help.

In order for your medical team to determine if you need a transplant you will have to undergo a thorough physical and mental evaluation.  Before they do that, though, there is a critical questions that must be answered,  “Do you have the financial resources to pay for a transplant should they find that you need one?”  If you cannot answer that question affirmatively a hospital social worker might be able to help but your chances of getting a transplant will be delayed until that single question gets a positive answer.  Once answered, though, the evaluation process begins and you will embark on an unprecedented medical voyage.   Among other things they have to determine  that you are a good surgical risk.

In addition to assessing  your physical condition, the team will consider  your attitude and psychological state among other factors. Donated organs are a rare commodity, so doctors don’t want to proceed unless they are sure that a patient is physically and mentally prepared for both the procedure and for life following it.  Your transplant team will also want to ensure that you have a competent caregiver,  someone you can depend on to watch over your recovery.  This is a key element of the process, you simply must be able to show that you have a caregiver who will make a significant investment of time as you regain your strength so you can return to a “normal” life. 

And…a caution if you smoke or are addicted to either drugs or alcohol chances are you will be told you must quit or there will be no transplant.  Generally you have to show that you have abstained from the two for at least six months.   Again, organs are precious and there aren’t very many available so medical facilities want transplant candidates that can prove they will take good care of them.

When the tests are complete and show clear medical evidence that you need an organ transplant, your physician will present your case to the medical center transplant committee.  If they approve, you will be added to the national transplant list at the United Network for Organ sharing (UNOS).  Then the wait begins and that, too, is traumatic.  Some people never get an organ, others wait a long time and some, like me are luckier and have a short wait.  Mine was only thirteen days but it took twelve years after my diagnosis before I was sick enough to get on the list.

THE SURGERY

Once the transplant committee approves you for the procedure you will be placed on the national transplant list and then you wait…you wait for “THE CALL.”    When it comes  you will be asked to get to your medical center rather quickly where they likely will perform additional tests in preparation for the surgery.  Prep includes giving you something that will “relax” you.  In reality it will knock you out.

You will awaken in intensive care, surrounded by beeping, chirping monitors, IV bags hanging from chrome stands, electrodes attached to your body and perhaps a ventilator.  Awakening from the surgery can be scary, because you may not be fully aware of what happened or where you are, and because of the ventilator you will be unable to talk. Most often they remove the “vent” as soon as possible.  In my case it was gone when I awakened.

Usually the medical staff will try to get you on your feet and moving around as soon as possible but depending on the transplant and your condition hospital stays can range from a week or so to a much longer period of time.  Then there is the recovery process and having gone through it this blogger strongly advises you to do everything your physicians suggest because that’s what will keep you alive.  

As I mentioned earlier, the organs most commonly transplanted are Heart, Kidneys, Liver, Pancreas, Lungs and Intestines.  Recovery from these surgeries is sometimes difficult and for a while following surgery you will make many return trips to see your coordinator and physician.

THE RECOVERY

Critical Information You Need To know

Below I have listed the recovery process for all six of the organ transplants I listed earlier.  I chose to use a different transplant center for each organ to show that while centers may differ a little in the recovery process the bottom line is always the same and that is to ensure that the patient has a sound recovery and can then lead a healthy and satisfying life.  

Kidney Transplant Recovery

Cleveland Clinic

http://tinyurl.com/bh9jp4o  

Frequently Asked Questions

Now that I feel better, when can I return to my regular activities?

You can resume your previous activities as soon as you feel better — and you might even feel good enough to add some new activities. A daily exercise program will continue to improve your health and help you maintain a positive attitude.

You will not injure yourself or your new kidney if you follow some of these general guidelines:

  • Avoid lifting heavy objects and strenuous physical work for at least six to eight weeks following surgery. It is important that you also do not lift anything heavier than 20 pounds for two to three months, and nothing heavier than 40 pounds for four to six months from the date of your surgery.
  • Avoid driving for at least six weeks following surgery. Plan ahead so a friend or family member can help out during this time. When you are in a moving vehicle, always use your seat belt.
  • Exercise is encouraged, and we recommend beginning with stretching exercises and walking. Other excellent exercises include jogging, hiking, bicycling, tennis, golf, swimming, and aerobics. All of these can help you regain your strength and may be started gradually after your incision has healed.
  • As a general rule, rough contact sports should be avoided since they might cause injury to your transplanted kidney. If you have doubts about any activity, please ask the Transplant Team.

When will I be able to return to work?

Many kidney transplant patients are able to return to work within a few months following a successful surgery. However, various aspects of the recovery process can effect the timing of your return.

You will need to discuss returning to your job with the Transplant Team. When the time approaches, a “return to work” letter will provided. This will let your employer know when you may begin working and what limitations, if any, you have.

How soon can I take a vacation?

You may travel as soon as you are feeling better, but always let the Transplant Team know when you plan to go and provide a phone number where you can be reached. By remembering these traveling tips, your vacation will be worry free:

  • Always take all of your medicine with you and make sure you have enough medicine to last throughout your trip.
  • If you are traveling by plane, carry your medicine with you. Never check them with your luggage.
  • Make sure you have your Transplant Center’s phone number.
  • Check to see if there is a medical laboratory or transplant center nearby where you can have your blood work completed. This lab will need to report your results to your Transplant office.

Heart Transplant Recovery

Mayo Clinic

http://tinyurl.com/bf6692s

Because I got a heart transplant at the Mayo Clinic in Jacksonville Florida in 2007 it is the one with which I am most familiar.  I was in the hospital for 9 days and experienced little discomfort other than feeling weak.

What you can expect

During the procedure
Heart transplant surgery usually takes about four hours — longer if you’ve had previous heart surgeries or if there are complications during the procedure. The surgeon will open your chest and connect you to a heart-lung machine to keep oxygen-rich blood flowing throughout your body. The diseased heart is removed, and the donor heart is sewn into place. The new heart often starts beating when blood flow is restored. Sometimes an electric shock is needed to make the donor heart beat properly.

You’ll be in pain after the surgery, which will be treated with medications. You’ll also have a ventilator to help you breathe and tubes in your chest to drain fluids from around your lungs and heart.

After the procedure
After you’ve had surgery to place your donor heart, you’ll likely remain in the hospital for a week or two, and then you’ll be closely monitored at your outpatient transplant center for about three months. While at the transplant center, you’ll have regular tests on your donor heart, including blood work, echocardiograms, electrocardiograms and heart biopsies.

There are also several long-term adjustments you’ll need to make after you’ve had your heart transplant. These include:

  • Taking immunosuppressants. These medications decrease the activity of your immune system to prevent it from attacking your donated heart. Because your immune system will most likely never get used to the new organ, you’ll take some of these medications for the rest of your life.

These medications may cause noticeable side effects. With taking some post-transplant drugs, such as corticosteroids, your face may become round and full, and you may gain weight, develop acne or facial hair, or experience stomach problems. Some of the effects are more noticeable when you first start the drug regimen, but decrease in severity later on.

Because immunosuppressants make your body more vulnerable to infection, your doctor may also prescribe antibacterial, antiviral and antifungal medications. Some drugs could worsen — or raise your risk of developing — conditions such as high blood pressure, high cholesterol, cancer or diabetes. Over time as the risk of rejection is reduced, the doses and number of anti-rejection drugs can be reduced, but you will need some immunosuppressant medications indefinitely.

  • Managing medications and therapies. After a heart transplant, taking all your medications as your doctor instructs is important. It’s a good idea to set up a daily routine for taking your medications so that you won’t forget. Keep a list of all your medications with you at all times in case you need emergency medical attention, and tell all your doctors each time you’re prescribed a new medicine.
  • Cardiac rehabilitation. After your transplant, you may find it difficult to adjust to new lifestyle changes, such as diet and exercise. Cardiac rehabilitation programs can help you adjust to these changes so that you can regain your strength and improve your quality of life.
  • Emotional support. Your new medical therapies and the stress of having a heart transplant may make you feel overwhelmed. Many people who have had a heart transplant feel this way. Talk to your doctor if you’re feeling stressed or overwhelmed. Transplant centers often have support groups and other resources to help you manage your condition.

Lung transplant Recovery

Duke University Medical Center

http://tinyurl.com/ajp7n8h

Use these patient resources to understand steps you need to take after your lung transplant procedure at Duke.  Click on the links for full details.

Infections in a transplant patient can be quite serious, even life-threatening. Good hand washing, along with a few other practices will help prevent infection.

After lung transplant, your health will be constantly monitored to ensure that your lungs are healthy and not being rejected .

Learn what symptoms may signal infection and find out what steps to take to maintain your health and prevent infection.

After transplant, your body is more susceptible to infection. Learn how to avoid and manage common infections.

Rejection of your transplanted lung(s) can occur at any time following your surgery. Discover steps to take to avoid rejection or ways to manage your health if you do experience rejection of your new lungs.

Learn what to expect in regards to pulmonary preparation and rehabilitation before and after lung transplant.

Diet and nutrition are very important aspects of everyday care after a lung transplant. Find guidelines to keep you healthy after transplant.

Sexual activity doesn’t have to be avoided after lung transplant. Following a few simple guidelines will ensure that you stay healthy while enjoying sex.

When patients show signs that their new lungs are being rejected, we have a number of ways to combat that rejection including steroids, RATG, and Campath.

Pancreas Transplant Recovery

Vanderbilt University Medical Center

http://tinyurl.com/avkgyhe

You will be encouraged to get out of bed as soon as possible– usually the first or second day after surgery. This is an important way to prevent pneumonia. We will encourage you to walk around your room and down the hall at least three times a day. Walking increases your blood circulation, helps relieve gas pains, and helps maintain your muscle tone.

Each morning, we will draw blood to follow your progress and adjust your daily medicines. The most important blood tests to measure your kidney function are B.U.N. and CREATININE.

Another way to watch your new kidney’s progress is to accurately measure how much fluid you drink each day and how much urine you put out. At first the nurses will measure this for you. Eventually you will be taught to do this for yourself.

You will be weighed daily before breakfast. It is important to weigh at the same time each day on the same scales with the same clothes on. This is a habit you’ll need to continue after you’re sent home. Weight gain can be a sign of rejection of your new kidney.

Once you and your nurse feel you are able to care for yourself outside the hospital you will be sent home. If you live out of town you may want to stay at the Guest House Inn near Vanderbilt for a short period of time after discharge. During this time you will be coming back to Vanderbilt for outpatient evaluation two to three times per week.

Liver Transplant Recovery

University of California San Francisco

http://tinyurl.com/bxbfptz

After surgery, you will go directly to the intensive care unit (ICU), usually for one or two days. Immediately after surgery, a breathing tube will be inserted to help you breathe. In most cases the tube can be removed within 24 hours after surgery. Many monitoring lines also will be attached; these, too, will be removed as you become more stable. When you are ready to leave the ICU, you will be cared for on the 14th floor of the hospital if you’re an adult. Children are cared for on the sixth or seventh floor. Everyone recuperates from liver transplantation differently. Depending on your condition, you will be hospitalized for two to eight weeks following the transplant.

After the Hospital

After you are discharged from the hospital, you will be seen in the liver transplant clinic at least once a week for the first month. As you improve, you will be seen less often; eventually, you will be seen once a year.

If you are not from the San Francisco area, you probably will need to stay close by for the first month after discharge. After that, your doctor or a specialist near your home will provide follow-up care. Laboratory blood tests are obtained twice a week following transplantation. Gradually, the frequency of blood tests will be reduced.

You will be notified about any adjustments in your medications. Complications can occur with any surgery. Patients undergoing organ transplantation may face additional complications. The life-threatening disease that created the need for your transplant may affect the functioning of other body systems. Other risks, such as rejection, also may occur.

Some possible transplant complications and medication side effects include:

  • Hemorrhage — One function of the liver is to manufacture clotting factors. When a liver fails, the ability to produce clotting factors is impaired. To correct this problem, you will receive blood products before and after surgery. It is expected that your new liver will start working very quickly to help prevent any excessive bleeding, but it is possible that you may be returned to surgery to control the bleeding, particularly if it occurs within the first 48 hours after transplant.
  • Thrombosis — This is a serious complication that may require a second transplant. If a blood clot forms in a vessel leading to or from your liver, this may injure your new liver. You will receive special anticoagulation medication to prevent thrombosis.
  • Rejection — Your body’s defense system, the immune system, protects you from invading organisms. Unfortunately, it also views your new liver as foreign and will try to destroy it in an attempt to protect you. This is known as rejection. To prevent this from occurring, you will be given special immunosuppressive medication that must be taken for the rest of your life. Rejection can be diagnosed early by performing weekly liver biopsies during the first few weeks after liver transplant. Although rejection is common, with early diagnosis and treatment the situation can be controlled in more than 95 percent of cases.
  • Recurrent disease — Many liver diseases may come back after your transplant. Hepatitis C is the most common disease that can reoccur following a liver transplant. Your doctors will discuss this further with you.

Intestinal Transplant Recovery

Georgetown University Medical Center

http://tinyurl.com/a48grko

The Healing Process

After your small bowel transplantation, there are two challenges. First, you must manage the pain and recover. Second, you must learn to manage living and eating with a transplanted small bowel.

Will I be in pain?

Immediately following surgery, you will experience pain. We will do everything we can to make you as comfortable as possible. Most transplant patients have a significant reduction in pain several weeks after surgery. Some people continue to have some discomfort for a longer time.

Where will I spend my time in the hospital?

Immediately after surgery, you will be transferred to the intensive care unit. You will spend several days there as the Transplant Team monitors you very carefully.

After your stay in the intensive care unit, you will be transferred to the General Transplant Unit, where you will be instructed on how to assume responsibility for your everyday care. You will be encouraged to get out of bed at least three times a day and walk around your room and the halls. This increases your circulation and aids in healing.

What are the possible risks and complications?

You team is watching for the following possible complications:

  • Increased ostomy output
  • Fever
  • Nausea and/or vomiting
  • Blood in stools/ostomy output
  • Change in appetite

Please do not be scared or anxious about possible complications. Our team has many solutions for possible complications. All transplants carry risk and we will do everything we can to minimize those risks.

How long will it take to know if the new small bowel is working?

There may be a delay in the function of your transplanted small bowel. This may increase the length of your stay in the hospital as well as the risk of complications. There is also the possibility your transplanted small bowel will not function. You would be relisted in the highest priority category allowed.

What about the possible risk of infection?

Infection is always a concern following any major surgery. The Transplant Team will monitor you for signs and symptoms of an infection.

How long before I can leave the hospital?

You must remain in the local area (within two to three hours of Washington, DC) for four to six weeks post discharge for monitoring

While the information you just consumed is general in nature you will likely find that with a few modifications it is the process most transplant centers will follow.  If you have more specific information needs you should call your transplant coordinator, social worker or physician.

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.

“His” Heart, My Life, My Story


I wrote this account of my life since receiving a heart transplant in hopes that others will benefit from my experiences.  Most of you who will have transplants will have a far easier time of it than I did.  You must remember that I was 68 years old when I had mine and that alone can make a huge difference in recovery time and other factors as well.  If any of you have any questions after reading this please contact me personally at bob@baronson.org.

Being a transplant recipient is an amazing experience.  I simply cannot describe what the feeling is like knowing that one of the parts you were born has been discarded and replaced with one belonging to someone else who in all likelihood died…except for the organ that is keeping you alive.

I don’t know who my donor was.  I only know he was about 30 years old when he died and he was from South Carolina.  I have written to my donor family but not heard from them so I assume they prefer to remain anonymous and I understand and accept that.

Everyone who has ever had a transplant has had a unique experience that nothing else in life can match.  Each day I am struck by the awareness that the heart I was born with, that kept me alive for 68 years no longer beats within my chest.  It died.  I didn’t.  Wow!

Often when I lie in bed I feel the rhythmic thumping that kept someone else alive for 30 years is now doing the same for me.  “His” heart is my life.  “His” heart pumps my blood, in my body to my brain and allows me to think, to live, love and enjoy life. “His” heart, not mine.

My donor has given me a lot but his greatest gift is allowing me the extra time to be with my wonderful wife Robin.

In 1995 after collapsing in a parking ramp am rushed to a hospital, I was diagnosed with dilated idiopathic cardiomyopathy and was told that someday I might need a heart transplant.  As the owner of a communications consulting business I was very active and travelled a great deal both domestically and internationally, but slowly my health began to deteriorate.  Always the optimist I adjusted and slowed down a little but not so anyone would really notice.

Then in 1996 my wife was diagnosed with lung cancer and I ignored my condition while we dealt with hers which included many chemotherapy and radiation sessions.  After a long and courageous battle with that terrible disease she succumbed in November of 1998.  We had been married for 35 years.  It was a devastating time and at age 59 I felt lost, alone and without hope as I began to feel the effects of my own condition.

About a year later I met Robin Diffie and as we got to know each other I felt my life just might come back together after all, but my version of the sword of Damocles, cardiomyopathy, continued its swing through my life as my heart function continued to fall with a resultant decrease in my ability to function.

In 2000 Robin and I were married in Eagan, Minnesota but by then the condition which would later require a heart transplant was becoming debilitating, when I travelled I began to ask for wheelchair service in airports and Robin began traveling with me to make sure I got one and to act as my “pusher.”

Cardiomyopathy kind of sneaks up on you and kicks your butt softly at first but then harder and harder.  The effect of the disease is measured by ones “Ejection Fraction” (EF).  A normal heart will pump out about 60% of the blood it contains every time it beats.  As the disease progresses the EF keeps going down and the heart enlarges in order to store the blood that doesn’t’ get ejected.  My heart was getting very large and by 2006 my EF was around 10% and decreasing.  Clearly I was dying and too sick to work.  Sometimes I could barely walk a few feet without having to stop to rest.  My heart was just barely pumping enough blood to keep me alive.  Reluctantly I made the decision to retire.

It was then that we decided to move to Jacksonville, Florida and we did so for two reasons.  1) Moving there offered the greatest likelihood of getting a heart.  My research indicated that the Mayo Clinic in Jacksonville had a wonderful record in organ procurement and transplantation.  2) It was an easy decision because Jacksonville is Robin’s home town and her entire family is there.  I still question Robin’s sanity in marrying a dying man but no matter I am grateful for whatever bug struck her and caused the instability.

After undergoing the battery of tests that are required to qualify for a transplant, I was finally approved and placed on the national list on August 8th of 2007.  I had resigned myself to either a very long wait or, I thought, no heart at all because of my age.  It had already been twelve very long years since I was diagnosed with a fatal heart disease.  I thought that at age 68 it was unlikely that I would get a heart and if I did it wouldn’t be anytime soon — but I got lucky.

Only 13 days after being listed I got the call from Mayo Clinic Transplant Cardiologist Dr. Jeffrey Hosenpud that he “might” have a heart for me.  He did.  I got one and August 21st 2007 goes down in history as my “other” birthday.

My recovery from the transplant was difficult to say the least.  It took four years before I finally felt good again.  I quit smoking in 1991 but the 37 year habit had already taken its toll, I had Chronic Obstructive Pulmonary Disease (COPD).  That’s a disease of the lungs that can best be described as feeling as though you are breathing through a straw…try that some time.  COPD is bad enough but when you get pneumonia on top of it you have another life threatening situation.  Well, I got pneumonia shortly after my surgery and was hospitalized again but the recovery was very slow and touch and go before I slowly regained my strength.  I now know that another bout with pneumonia could kill me so I try to be pretty careful about what I expose myself to.

I no sooner recovered from the pneumonia virus than I was stricken with indescribable absolutely excruciating pain….pain so severe that sometimes I would just sit and cry. Part of the pain, I’m told, was the result of the way I was positioned during my surgery.  Apparently your left arm is in a strange position in order to allow the surgeon unobstructed access to the chest cavity, but a transplant takes a long time and it seems that my arm needed different medical attention than was delivered.

The pain in my left arm right down to my wrist and fingers was awful but then just when I thought it couldn’t get worse, it did.  The pain spread to both shoulders, my neck and lower back for and went on for months.  Torn rotator cuffs were part of the reason but much of the pain came from unknown causes, perhaps it was the way I was sleeping or  maybe the lack of proper exercise and maybe because of an old auto accident.  We’ll never know the exact cause but it was finally resolved with a combination of physical therapy and Oxycontin the potent, addictive pain killer, and addictive it was.

I’ve been a recovering alcoholic since 1982.  I understand addiction and I understood quite well that I had become dependent on the narcotic.  I no longer really needed it for the pain for which it was prescribed, I needed it for the pain caused by the withdrawal you experience between “hits.”  When you are taking pain killers there’s a simple question you must ask yourself every time you reach for a pill.  “Am I taking this because I need it for pain or am I taking it because I want it?”  If you are truthful with yourself and the answer is the latter, you have a problem.  I had a problem.  By addict standards I wasn’t taking much Oxycontin, only about 30-40 milligrams a day, but it was enough for me to know I needed the drug, needed it not to get high…I needed it to feel normal.  That’s what happens to every drunk and junkie…they ultimately drink, shoot or take pills just to try to feel normal.  Often the first high you have, is the last one.

Having been through chemical dependency treatment in 1982 I knew what I had to do but I also knew I couldn’t do it cold turkey.  I found a highly reputable pain clinic that specialized in addiction and started going there.  They immediately took me off of Oxycontin and put me on Suboxone another addictive drug but one that is used to slowly help people through the painful withdrawal that comes with quitting.  It took several months but it worked and I was Oxycontin free but, sorry, the story doesn’t end there.

You’d think that after having survived cardiomyopathy, getting a heart transplant, beating terrible pain and withdrawing from an addictive drug I would finally feel better.  Unfortunately the light at the end of my tunnel was an oncoming train that hit me hard and almost had me down for the count because for no explainable reason I fell into a deep, dark depression that lasted for a couple of years.

Each day I would awaken, head to my favorite recliner in a corner of the den and sit there in the dark drinking coffee and watching TV.  I was nearly a zombie.  Some days I wouldn’t even shower and I didn’t want to see or talk to anyone.  That was my life day after day, week after week for a couple of years.   Depression is one of those diseases where you don’t know how bad off you are until you are no longer bad off.  The only thing that gave me any hope each day was maintaining my presence on the Facebook group I started, Organ Transplant Initiative and my blog on WordPress, Bob’s Newheart.  While I knew I needed professional help I was so depressed I didn’t’ care if I got it so I kept putting it off.  Finally with Robin’s gentle prodding I went back to Mayo and began treatment but you don’t beat depression overnight or even in a few months.  Sometimes it takes a considerable amount of trial and error before the right treatment is found.  That came right around my four year post surgery mark but not until i had lost 75 pounds from lack of appetite.  i was left weak but finally energized and optimistic again.

Through all of that Robin, the lunatic who married a dying man, was steady as a rock. She had her hands full running two businesses and our home plus being my caregiver.  I’ll never know how she did it and kept her wits about her but she never flinched.  She is the most amazing, compassionate and competent human being I have ever encountered.  She is an unflappable optimist who doesn’t have a selfish bone in her body.  I don’t know why I was so blessed to find this woman but  as the man said, “Somebody up there likes me.”

That takes us to today…five plus years later and I feel wonderful but most importantly I get to spend time with Robin.  If a physician could have written a prescription for love, happiness and contentment it would simply have said, “Robin.”  It is only because of my donor that I am getting to spend time with this wonderful, gracious, smart, talented, funny and super woman.  The heart of a stranger has allowed us to really get to know each other.  There is no greater gift my donor could have given me and yes, that’s selfish but in this case I think selfish is OK.

Like many recipients my life has changed in other ways as well.  Because of a transplant I’m a different person.  I hope I’m a better person.  I know I appreciate life a great deal more than I ever did before, but it is not only my life I appreciate, it is everyone’s life.  When you experience death or near death, “life” takes on a whole new meaning.  My reaction to being a transplant recipient is that I owe my donor big time.  While I can’t do anything for him directly I can honor his memory by doing everything in my power to help others live.  That’s why I am such an outspoken donation/transplantation activist.

While science generally rejects the notion, some recipients feel they have taken on some of the characteristics of their donor.  I can’t say what my donor’s characteristics were because I didn’t know him but my life has changed as a result of having his heart.  He may well be the influence behind some of the changes I have experienced which include:

  • I am much less selfish than I was before and spend as much time as I can trying to help others.
  • I am much less concerned with material things than I used to be.  “Appearances” aren’t important anymore.  I don’t have to have a new car, wear the best clothes or get recognition.  I simply don’t care about those things.
  • I am far more passionate about causes I believe in like fairness, equality and justice.  I particularly feel a need to help the economically disadvantaged, the disabled, the sick, the elderly and, of course — children who suffer so many indignities of which they should not even be aware, never mind being forced to experience them.
  • I am more of a peacemaker.  In the past I was a warrior, a bulldozer who when advocating for a cause would show my commitment by rolling over those who disagreed and sometimes belittling them in the process.  Now I believe in finding common ground and forming friendships despite serious disagreements.
  • I am much less self-centered than I used to be.  I have come to accept who I am and as a result can concentrate on the needs of others.
  • I have always enjoyed learning but it has almost become an obsession since my transplant.  My thirst for knowledge about a wide variety of things knows no bounds.  I can’t get enough information about the wonders around us like the sun and the stars and the miracles, medical and otherwise that we experience every day.
  • Working with my hands has always been enjoyable for me but since my transplant I have become addicted to woodwork.  I’m not the Michelangelo of woodworking, hell I’m not even a Barney Fife but I am determined to get better at it.  Unfortunately it is my friends and family who must suffer receiving my woodworking “gifts” and then acting as though they like them.

Being a transplant recipient is an amazing experience.  It is one of which I am always aware and I mean always that I have someone else’ heart.  There is no time in my waking hours that I am not aware that I am alive because a generous stranger give me his heart.  I owe him and his family more than I could ever repay no matter what efforts I make for the rest of my life.

If you, the reader, are an organ donor, let me thank you on behalf of the unknown lives you may save as a result of your selfless action.  If you are not an organ donor, please consider it carefully.  You can save or enhance the lives of up to 60 people just by signing up and you can do that so easily.  Just go to www.donatelife.net and follow the directions.  Then, tell your family what you’ve done so there is no chance that anyone will object when the time comes to fulfill your commitment.

Earlier in this story I mentioned my Facebook Group and Blog. Let me take just a moment to explain how they came to be.  Just a couple of months after my transplant I got a call from Mayo asking if I’d be interested in starting a Facebook Organ donation group and in writing a blog.  I knew what neither were but decided I needed something to do during my recuperation and said, “Yes.”  With Mayo’s help I got started immediately.

That was the beginning or Facebook’s Organ Transplant Initiative group (OTI) and Bob’s Newheart blog on WordPress www.bobsnewheart.wordpress.com .  OTI now has almost 2,500 members and I’ve posted 140 blogs on donation/transplantation issues that have been read by over 100,000 people in at least 20 countries.  I believe that I was given my new heart to do this and it has become my new passion.

None of this would be possible without all you wonderful people who helped to make OTI a success and who read my “Stuff” on WordPress.  By offering your kind words, thoughts and deeds you are doing a great service to those who suffer while waiting for organs and those who are recovering from receiving them, never mind the caregivers and others who are so critical to the donation/transplantation process.  Words cannot express my fondness for all of you and my gratitude for your involvement.  All I can say is, thank you from the bottom of my donor’s heart.

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.

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