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People Who Say they Can’t Quit Smoking Are Gutless Liars!


By Bob Aronson…former smoker

smoking cartoon

if that headline doesn’t get your attention I don’t know what will.

“I can’t quit smoking,” is BS.  You can quit, but you are a pansy, no guts.  You can spread that “Can’t quit” manure elsewhere.  It doesn’t work here because it’s a big lie.

Do I have your attention?

This post is aimed at smokers, whether you are just starting the habit or have smoked for a while and are thinking about quitting.  I am writing this to alert you to smoking related issues not to draw attention to myself or my condition.  I seek no sympathy nor attention.

Yes, this is a posting that encourages you to ignore the temptation to start smoking and/or to quit smoking if you already have the habit. In the interest of full disclosure let me tell you why you should read this. You should do so because I offer hope and straight talk.  No one could possibly have had a greater addiction to cigarettes than I did.  And…I know about addiction, too.  Not only did I quit smoking (1991) I also quit drinking (1982) after years as a practicing alcoholic.   I have not had a drink since.

Let me get right to the point.  Even though I quit smoking almost 25 years ago it is killing me.  When I die I would imagine that my addiction to cigarettes will be the chief cause of my demise because I have emphysema and asthma, Chronic Obstructive Lung Disease (COPD).  Had I not quit smoking when I did I would have been dead long ago.  Recently my pulmonologist told me that If I had continued to smoke,  I would have needed a lung transplant long ago.  For those of you who don’t know me I had a heart transplant in 2007 and smoking may have been a contributor to the heart failure that caused me to need that life-saving surgery.

I know how hard it is to quit smoking and I refuse to accept, “I’ve tried many times and cannot quit.”  That, my friend, is pure unadulterated BS.  You are only fooling yourself with that nonsense.  The fact of the matter is you don’t have the guts to quit.  You can’t handle a little discomfort so you light up another smoke and say, “I can’t quit.”  And again I say, “BS.”  Tough talk?  Damned right it is.  If you think the discomfort of quitting smoking is hard to handle try the discomfort a of lung cancer as an option, or maybe emphysema.

I smoked up to 4 packs a day for 37 years and I quit.  Was it easy?  Of course not!  It hurt, it was painful, I was an SOB to live with, but damnit I quit.  I used every gimmick out there to help me break the habit and finally was rescued by nicotine gum.  I probably quit smoking 3 or 4 dozen times maybe more.  You see, you don’t quit once, fail and say, “I tried, I can’t quit,” because you haven’t tried.  The way to quit smoking is to keep quitting until you quit. You never give up, you quit every day, several times a day until finally you have quit for good.

I always kept my smokes and a lighter in my shirt pocket.  Almost every day when I left home for work I would automatically reach for a cigarette and the lighter so I could get my hit of nicotine.  Finally, I got to the point where every time I reached into that pocket for the cigarettes and lighter I would pull both out and throw them out the window of the car.  I did that every day for weeks.  Later in the day I’d find myself buying another pack and a lighter and the next day I would toss them out the window. “The hell with littering,” I would say, “My life’s at stake here.”

After about a year of all this nonsense I finally had my last cigarette in January of 1991.  You see, I had just watched my father die of emphysema.  At least something good came of his death.  I was able to quit.  I was addicted to nicotine gum for two years after that and lemon drops for another year but I quit, by God, I quit.

You know why it’s so hard?  It is because you are an addict, just like any drunk or junkie.  When you hear someone say, “A cigarette tastes so good after a meal,” that’s just more BS.  The reason it feels good is because it’s been a while since your last cigarette and you are going into withdrawal.  As soon as you light up you stop the withdrawal and feel better.  It is no different than getting a hit of heroin or a good slug of booze.

From the time I was 15 years old in 1954 until 1991 (37 years) when I was 52 years old I was a smoker, a heavy smoker.  Some days when I went to work I would throw 4 packs of cigarettes in my briefcase and finish them before I retired for the night..  That’s 80 cigarettes.

There are approximately 600 ingredients in cigarettes. When burned, they create more than 7,000 chemicals. At least 69 of these chemicals are known to cause cancer, and many are poisonous as well.  Here are just a few of the chemicals in tobacco smoke, and other places they are found:

  • Acetone –nail polish remover
  • Acetic Acid –  ingredient in hair dye
  • Ammonia –household cleaner
  • Arsenic – rat poison
  • Butane – lighter fluid
  • Cadmium –battery acid
  • Carbon Monoxide car exhaust fumes
  • Formaldehyde – embalming fluid

A final note on this subject.  In 1998 I lost my wife of 35 years to lung cancer. She, too was a smoker and she died a horrible death, no one should have to suffer the way she did and the way thousands of others do every day.  Smoking is a terrible, disgusting and deadly habit.  I don’t care who you are, you have a responsibility to yourself and to those who love you to quit smoking.  You must.  After a while the urges disappear and you can live a normal life again.  You might even find that you’ll take great pride in being able to say, “I used to smoke, but I don’t anymore.”

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New heart, new life, new man

Feeling better than ever at age 73

Bob Aronson of Bob’s Newheart is a 2007 heart transplant recipient, the founder of Facebook’s over 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.  You can register to be a donor at http://www.donatelife.net.  It only takes a few minutes.

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Proposed Medicare Rule Would End Support of Anti-Rejection Drugs While We Pay More For Boondoggles


By Bob Aronson

UPDATE MARCH 10, 2014

Attention readers — Your outrage worked. Congratulations!!!!

The Obama administration said Monday that it would scrap much of a proposed plan to limit the types of antidepressants and other drugs that seniors can get through Medicare after a backlash from lawmakers and the health industry.

Original blog published February 28, 2014

This is one of the most important blogs I have published.  It is a direct appeal to you to take action.  You will find the steps you need to take at the end of this post.

here to help cartoonA government bureaucracy is seeking to change the rules that allow organ transplant recipients a broad choice of anti-rejection drugs.  If adopted it is the opinion of many medical experts that without the flexibility to select optional drugs many transplant recipients could die. 

Ask yourself, “How does it make sense to pay the cost of a transplant and then refuse to pay for the drugs that make it work? Would we train thousands of men and women to be soldiers and then send them into battle without weapons?”  It is quite likely that your answer would be, “Of course not! That would be insane.”

Unfortunately some bureaucrats are incapable of making decisions based on logic.  They waste billions of dollars and in the process hope we are fooled into thinking that wasted money represents good “investments.”  When these good “investments” go bad they don’t stop pouring money into them they cut expenditures elsewhere — and those cuts cause great harm to the citizens whose tax dollars pay their salaries.

This report is factual and intentionally biased. It is biased because I am a 75 year old heart transplant recipient who counts on Medicare to provide me with my anti-rejection drugs — drugs the government would like to take away so they can fund boondoggles.

Here is some perspective.  When you get a transplant, you must take anti-rejection or immunosuppressant drugs for the rest of your life.  Often, though, it is medically necessary to change to something different and more effective.  If the option for a life-saving change is taken away, many of us will die. 

How the rule makers can ignore that simple, medical fact is beyond me, but they also ignore reality when they say making these cuts will save $1.9 billion over several years.  Here’s reality.  If the changes are adopted they will not only endanger lives, they will in the end, result in taxpayers paying more, not less as the rule’s advocates suggest.   

Here’s how it works in real life.  If organ transplant patients don’t take their immunosuppressant drugs they will go into rejection and will be hospitalized at Medicare’s expense.

Physicians who are sworn to save lives will make every effort to do just that regardless of cost.  In the case of Kidney failure, rejection dialysiscould mean years of dialysis, a treatment that costs about $50,000 per patient per year (there are currently about 400,000 Americans on dialysis). In all cases it is entirely possible that patients who are rejecting their organs could be re-listed for second transplants. Depending on the organ, a transplant can cost in excess of $1 Million for the surgery and the first year of care.

It seems that the cost cutters think that by limiting options there is an almost immediate savings.  There isn’t.  There is, instead, an almost immediate rise in cost.  They seem to use the same twisted logic when trying to save money that they use when spending it.  You can read the detailed proposal here http://www.gpo.gov/fdsys/pkg/FR-2014-01-10/pdf/2013-31497.pdf

Some lawmakers insist that budget cuts be made and they are right, we spend too much as a nation but does it make sense to cut spending that will kill people?

There are two current military projects that are a very big part of the motivation behind the budget cuts.  They are the Gerald R. Ford aircraft carrier and the F-35 Joint Strike Fighter.  Together they have created cost overruns of nearly $200 Billion.  That’s right $200 Billion and the defense department wants more money even though the two projects are plagued with problems. 

These ghouls would actually take medicine from people who will die without it rather than cut dollars from bloated out-of-control projects that were never necessary anyway.

In 2005 the cost of the Gerald R. Ford was estimated to be about $8 billion, excluding the $4.7 billion spent on research Gerald r ford 3and development. Each year the estimate has gone up.  In 2013 a Government Accounting Office (GAO) report said that construction costs are now estimated at $12.8 billion.  That’s 22% over the 2008 budget, plus $4.7 billion in research and development costs.  Not only have the costs continued to rise above the original estimates the Navy is now asking for another $500 million and the aircraft carrier is nowhere near being ready for sea and is plagued with problems. If you would like to know more about the Ford and its problems this link will get you started.  http://www.freerepublic.com/focus/f-news/3110602/posts

F-35 3Then there is the F-35 Joint Strike Fighter.  According to Senator John McCain it is the most expensive weapons system in history and there’s no assurance it will ever do what it was designed to do.  Despite repeated disappointments and failures, we keep throwing good money after bad at it and now that project is $163 billion over budget, seven years behind schedule, and will cost taxpayers about twice as much as sending a man to the moon.  The cost of manufacturing the jets has increased a whopping 75 percent from its original estimate, and is now closing in on $400 billion. Over its lifetime, the F-35 program is expected to cost U.S. Taxpayers $1.5 trillion, between construction and maintenance of the jets.  http://www.pogo.org/blog/2013/03/20130306-air-forces-f-35a-not-ready-for-combat.html

If you would like more details on the F-35 this report provides them along with other links.
http://swampland.time.com/2013/12/18/how-not-to-buy-the-most-costly-weapon-system-in-the-history-of-the-world/

Instead of cutting out the fat in the national budget, though, the bureaucrats have decided to cut spending that very likely will result in death.  They would limit coverage of anti-rejection medicine that keeps organ transplant recipients alive.  Here’s a simple declarative sentence, “When you take away medicine that keeps people alive, they will die.” What part of that sentence don’t they understand? 

The American Kidney Fund is one ofakf logo two many organizations that takes exception to the proposed new rule.  Recently they sent out this letter to their members and other interested parties.

akf logo two

Dear____,

I’m writing to request your help with an issue that is of great importance to our nation’s transplant recipients.

Individuals who are fortunate enough to receive a kidney transplant—or a transplant of any other organ—must take immunosuppressive medications for the life of the transplanted organ to reduce the risk of losing the organ. Some patients rely on Medicare Part D to cover the cost of these medications.

Immunosuppressive drugs are one of six “protected classes” of drugs under Medicare Part D. This means that Medicare Part D must cover all approved immunosuppressive drugs, giving transplant recipients access to the full range of available medications.

On January 10, 2014, the Centers for Medicare & Medicaid Services (CMS) proposed a change to Medicare Part D that would revise the criteria for these protected classes of drugs. Part D plans would no longer be required to cover all approved immunosuppressive medications—instead, Part D plans would only be required to cover each subclass of immunosuppressive medications.

The American Kidney Fund believes that by not covering all of the specific drugs within each subclass, this rule would put patients’ health at risk. Transplant recipients often need adjustments to their immunosuppressive drug regimen. They require access to the full range of approved medications.

We are working hard to ensure that policymakers hear from the kidney community on this issue. You may click here to send a personalized letter to your Congressional representatives urging CMS to reverse this proposal. https://secure2.convio.net/akf/site/Advocacy?cmd=display&page=UserAction&id=119

Thank you for your participation in the American Kidney Fund’s Advocacy Network. Your voice makes a difference!

Sincerely,

Nikia Okoye

CMS (Centers for Medicare and Medicaid Services) will take public comment through March 7th. Please urge them to reject the draft rule change.  You can contact CMS with your comments in this manner. 

If you would like to comment directly to CMS you must do so before 5 PM on March 7, 2014.  Here’s how.

ADDRESSES

In commenting, please refer to file code CMS–4159–P. Because of  staff and resource limitations, we cannot accept comments by facsimile (FAX) transmission.  You may submit comments in one of

four ways (please choose only one of the ways listed):

1. Electronically.  You may submit electronic comments on this regulation to http://www.regulations.gov  or go directly to http://www.regulations.gov/#!documentDetail;D=CMS-2014-0007-0002 . Follow the ‘‘Submit a comment’’ instructions.

2. By regular mail.  You may mail written comments to the following address ONLY: Centers for Medicare & Medicaid Services, Department of Health and Human Services, Attention: CMS–4159–P, P.O. Box 8013, Baltimore, MD 21244–8013. Please allow sufficient time for mailed comments to be received before the close of the comment period.

3. By express or overnight mail.  You may send written comments to the following address ONLY: Centers for Medicare & Medicaid Services, Department of Health and Human Services, Attention: CMS–4159–P, Mail Stop C4–26–05, 7500 Security Boulevard, Baltimore, MD 21244–1850.

4. By hand or courier. Alternatively, you may deliver (by hand or courier) your written comments NLY to the following addresses prior to the close of the comment period: a. For delivery in Washington, DC—Centers for Medicare & Medicaid Services, Department of  Health and Human Services, Room 445– G, Hubert H. Humphrey Building, 200 Independence Avenue SW., Washington, DC 20201.

(Because access to the interior of the Hubert H. Humphrey Building is not readily available to persons without federal government identification, commenters are encouraged to leave their comments in the CMS drop slots located in the main lobby of the building. A stamp-in clock is available for persons wishing to retain a proof of filing by stamping in and retaining an

extra copy of the comments being filed.) b. For delivery in Baltimore, MD— Centers for Medicare & Medicaid Services, Department of Health and Human Services, 7500 Security Boulevard, Baltimore, MD 21244–1850.If you intend to deliver your comments to the Baltimore address, call telephone number (410) 786–9994 in advance to schedule your arrival with one of our staff members.

Comments erroneously mailed to the addresses indicated as appropriate for hand or courier delivery may be delayed and received after the comment period.

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magic kindom in backgroundBob Aronson is a 2007 heart transplant recipient, the founder and primary author of the blogs on this site and the founder of Facebook’s over 3,000 member Organ Transplant Initiative group.

Now retired and living in Jacksonville, Florida with his wife Robin he spends his time advocating for patients with end stage diseases and for organ recipients.  He is also active in helping his wife with her art business at art festivals and on her Rockin Robin Prints site on Etsy. 

Bob is a former journalist, Governor’s Communication Director and international communications consultant.

Thanksgiving in October. An Inspirational Organ Donation Story


pacemaker-cartoon.1.cartoon31_8775 By

Bob Aronson

With Chuck Price

We all know that life ends.  Most of us pretty much ignore that reality.  Thinking about one’s demise is not pleasant and many think that death is in the distant future anyway so why even consider it.  I have long believed that one of the reasons organ donation rates are so low (only 40 percent of Americans are registered donors) is that to be a donor one has to address one’s own death and people don’t like doing that.  It seems, too, that the younger you are the more invincible you feel

People on the national organ transplant list, though, are forced to think about death regardless of age because they have been told they are dying. You can’t get on the list unless it has been determined that only an organ transplant can save your life.

chuck prior to surgery 244-year-old Chuck Price was one of those people.  A mere six months ago he was very near death. Desperate to live and fighting with every fiber of his being he knew his chances of spending much more time with his wife and sons was diminishing rapidly. Price’ lungs were shutting down due to a disease you probably never heard of, Alpha 1 Anti Trypsin Deficiency. Only a double lung transplant could save his life and they are rare. This genetic (inherited) condition is passed from parents to their children.  Alpha-1 may result in serious lung disease in adults and/or liver disease at any age and Chuck Price was unable to escape it.  He has no memory of ever breathing like a normal person. He can only remember a constant struggle for air that has been both debilitating and discouraging.

There’s a lot more to this story but I’m going to stop here for just a few moments and tell you the Chuck Price story in an upside down fashion because that’s the way I learned about this inspirational, incredible and compassionate man.

It all began for me after Chuck got a double lung transplant and thenOTI logo about three weeks ago became a member of my 3,000 member Facebook group, Organ Transplant Initiative (OTI).  One of his first posts caught the attention of a lot of other members.  It came from the heart and it was powerful and moving.  His message was aimed at everyone and no one but it had special meaning for transplant patients, recipients and donors.  Here’s what Chuck wrote on his I-phone, then posted on OTI as he reflected on being able to breathe and live again.

Cuck Price prior to surgery“About 20 weeks ago I was sitting at UVA (University of Virgina) with 12-14% lung function, trying to keep a smile for the sake of my family, but believing that it was another dry run.

20 weeks + 15 minutes ago the flurry around me accelerated to a fervor that turned me to tears, as I feared I would die and never see my wife and kids again

20 weeks + 45 minutes ago I was rushed to a shower, signing reams of paperwork, getting IV and ports installed and told we were “live”, and I cried harder, my wife and I thought and prayed for the angel who was giving me a shot, and for their family.

I tried to picture my boys and burn them into my memory, as I feared it may be my last thought…I signed the last document, a confirmation, to donate my own organs should the worse come to bear.

20 weeks + 90 minutes ago, I was wheeled away adjusting my view tosurgical suite see my wife  for as long as the hall, would allow. I was wheeled into a room, filled with what seemed like futuristic machines and devices, and being attached to such.

My last words to no one and to everyone, “I’ve got 2 boys who don’t know how to be men yet people, and God let someone here be a Cowboy fan.”

20 weeks + 2 hours ago someone injected me with something that calmed me and made me very warm, a mask was placed over my face and I pictured my boys…the light faded to black…

just out of surgery 320 WEEKS LATER, I’m a different man, my lung function is above 100 % in all categories, I’m prepping for my first 5k, I’ve returned to work, started a donate life/alpha 1 awareness foundation…and I’m here to teach my boys to be proper men.

20 WEEKS LATER, thank you God, Thank You my Donor angel, for everything I’m able to experience. Thank you for the good and even the bad days, thank you for the recovery, thank you for the strength when I lack it. Just thank you.”

Then articulating his feelings further he added these heartfelt words as advice to other transplant recipients:

“When you get the call (saying there’s an organ available for you), put it in God’s hands and never waste the chance to thank your donor and donors everywhere. Be humble because no matter what pain you went through to get there, you deserve this no more than others waiting.  You are very lucky to receive such an inexpressible gift. When you heal give back…you’re not an inspiration, you’re not special, you’re not a chosen saint, you’re the recipient of a life-saving organ from another human being.  It is the most precious, special gift anyone of us could imagine….and… YOU OWE!

From myself and all like myself…THANK YOU!”

When I read the post I knew I had to have “The rest of the story,” as newsman Paul Harvey used to say.  I needed to know what brought him to the point where he tapped out that inspiring note on his I-phone so I contacted Chuck and found that he is taking full advantage of his new life.

His youthful exuberance is exciting and contagious.  He sounds like a man who has a thousand things to do but only ten minutes to complete them.  Ideas flow from him like oil from a new gusher and all of it, all of it is based on gratitude aimed at his unknown donor.

I will relate more about Chuck’s plans his feelings and his gratitude but I think it is important to add some perspective here before we do.  First, if you are not an organ donor and want to be just click on this link http://www.donatelife.net and you can register right now.  It only takes seconds.

There are about 120,000 people on the U.S. organ transplant list and only about 28,000 transplants are done each year.  At any given time there are about 1,500 people on the Lung transplant waiting list.  The wait time for lungs is from four to five months.  Unfortunately only one in 5 donors has lungs suitable for transplant. That means that a lot of people die waiting.

For those unfamiliar with the organ transplant process, you can only be added to the waiting list if an organ transplant center committee certifies you as being in the end stage of a disease and that there is nothing more conventional medicine can do to save or prolong your life. In other words you have been told that you are dying.  That news is not only depressing it is irritating and frustrating.  In Chuck Price’ case it was doubly frustrating because he is a “can-do” kind of guy and with Alpha 1 there was nothing he could do — but wait.

As his time on the list lengthened, Chuck believed he might be one of the unlucky ones for whom there was no life-saving organ.  The thought that he would leave behind his lovely wife Lisa and his two sons, 13-year-old Chase and 20-year-old Skyler tore his heart out.  At 44 Chuck had hoped to have a long life ahead of him but now, struggling for air with each breath his time was dwindling to days, maybe hours — and he knew it.

Not being able to breathe is terrifying.  I have Chronic Obstructive Pulmonary Disease (COPD) and while nowhere near as serious as what Chuck experienced I know what it is like to struggle for every breath.  Any amount of exertion can cause breathing to become even more labored and with that difficulty often comes panic…which makes it even worse.  Add difficult breathing to knowing that you are dying and you can imagine Chuck’s state of mind.

If you want to get a hint as to what Chuck and those like him experience with a disease like Alpha 1 take a standard drinking straw between your lips, block your nose and breathe through the straw.  drimped drinking strawNow crimp the straw…and try to breathe.  That’s what Chuck felt like 24 hours a day for almost all of his 44 years.

As a heart transplant recipient I and others with new organs can identify with the emotional roller coaster ride Chuck was on.  Knowing you are dying and that chances of getting a transplant are very slim leaves you with a burning sensation in your chest and gut not unlike acid reflux only there is no quick Pepto Bismol or Zantac relief for it.  The burning never goes away and just when you think it has reached its zenith it gets worse.

The sinking feeling burns through your heart and into your soul leaving you with a smoldering desperation that cannot be defined or explained.  There simply are no words to describe the emotional agony.   It is not so much the fear of dying, although that’s certainly part of it but rather a deep concern for the well-being of loved ones once you are gone.  You desperately want to show a brave face but your insides are mush and you want to scream at the top of your lungs that this just isn’t fair.  When you hug your wife or kids you don’t want to let go.  You almost feel as though dying is an abdication of responsibility to your family and you are wracked with guilt and remorse and even anger…sometimes rage.

Not only did Chuck have a family to which he felt obligated but he was the owner and President of American Weld Worx, an industrial service contractor that serves mining and heavy industrial manufacturing businesses.  So on top of his family concerns were those of his business, his employees and customers.  Chuck was carrying an immense emotional load.

As of six months ago all of that changed because of a generous anonymous stranger.  Chuck Price got his new lungs then.  He still worries about his business and his family, but now that he can breathe he can act on his concerns and fix them.  He is no longer helpless and that makes him very happy indeed.

Price has lots of goals and apparently the energy he’ll need to make them real.  One of his plans has him forming a foundation that will help transplant patients and he talks about it with an excitement that causes excitement.

“I named our foundation Chuckies Second Wind because I can breathe again but I should have named it Chuckies First wind because I have absolutely no memory of ever breathing like this.  I would like to say I breathe like a normal person, but that wouldn’t be true, our Lord and my Donor Angel saw fit to take me from a lung function of 12-14% to well above 100% in all measurable categories.  My Pulmonologist says my lung function is that of a 22-year-old competitive swimmer.  I can’t help but be giddy with happiness, and give daily thanks for the “second wind” I’ve been given.  None of this was possible without the selfless gift, given by my Donor Angel.”

Price’s plans for the foundation are simple.

“My overall goal is to help others receive the same gift that I received regardless of financial standing, I hope the Affordable Care Act (Obamacare) makes that dream come true but that remains to be seen.  Short term  I hope to stimulate people to become donors and reduce the gap between supply and demand. 

Additionally I plan to set up two scholarships.  “The Donor Angel scholarship will be the original and when I discover the name of my donor we will have a second one named after him or her.  I know I’m sounding like an over-achiever here but I think Robert Browning best captured my philosophy, “Ah, but a man’s reach should exceed his grasp, Or what’s a heaven for?”

One might read what I have written and what Chuck Price said and ask, “Is this real, is he really that grateful?”  The answer is, “Yes He is that grateful.”  I asked him what if felt like to take that first breath with new lungs.  Word for word, here’s his response.  Again, Chuck Price’ own words:

“I was on a ventilator and frightened because I had never been on one before.  Waking up to find out one in your mouth and lungs and that you can’t speak is scary.  I had to communicate with family by handwritten notes. 

About 40 minutes after awakening they told me I was over breathing and the vent would have to come out.  That scared me, too.  I just knew I was going to die when it was removed and I wrote a note to my wife and my dad begging them to prevent the procedure. Of course the doctors knew best and it was withdrawn – and I didn’t die and then—-I took my first breath, the first real breath in my entire life.  Wow!  I streamed tears, I can’t remember ever taking a breath like that so I took another and filled my new lungs to the hilt.  Nothing in life had ever felt that good.  I could find no words so I just grasped my wife’s hand and cried. 

An hour after those absolutely delicious breaths they also removed the oxygen and the saturation meter they put on your finger showed it was 98-99 % which amazed everyone — the docs included.  I was in a chair and walking very soon after.”

You’ve heard the commercials on TV that pitch some amazing deal and then add, “But wait, there’s more!”  Well, there’s more to the Chuck Price story.  Not only is he rebuilding his company, establishing a foundation and setting up two scholarships he plans on running a 5K. And, remember this.  It’s only about six months since his double lung transplant.  Price talked about the 5K race.

foot race“The 5k is called the Apple Trample 5k, it’s a yearly event in a much larger event, The Apple Harvest Festival held in Martinsburg WV.  We will not only be competing but will have a booth during the race signing up as many Organ donors as humanly possible.  We will also be raising awareness for both organ awareness and Alpha 1 Anti Trypsin Deficiency.”

Thee you have it, the Chuck Price story.  If his enthusiasm doesn’t affect you then it is quite likely you are a Vulcan, you know, the pointy eared people who are totally devoid of emotion as represented by Spock on Star Trek.

God bless and keep you Chuck.  You’ve got your work cut out for you and with your attitude we know you will accomplish everything you set out to do and more.  If not, Robert Browning will be very disappointed.

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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 email me bob@baronson.org and ask for a copy of “Life, Pass it on.“  This is NOT a stand-alone show; it needs a presenter but is professionally produced and factually sound. If you decide to use the show I will send you a free copy of my e-book, “How to Get a Standing “O” that will help you with presentation skills. 

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

Jay Robare Needs a Kidney. Will You Help Him?


By Bob Aronson

Video and cartoons by Jay Robare

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

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

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

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

Or you can call them at 800-789-7366

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

Jay cartoon 7Please consider helping Jay.

Thank you

Jays Friend, founder of OTI and Bob’s Newheart

Bob Aronson

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

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

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

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

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

Altruism Isn’t Working — Should We Be Able to Buy Organs?


Everyone makes money on organ transplants except the donor.  That’s right physicians, hospitals, clinics, Organ Procurement Organizations  (OPOs) and funeral homes all make money on organ donation.  The 258 solid organ transplant centers in the U.S. share the wealth of this multi-billion dollar industry but the organ donor gets nothing more than the satisfaction of having done a good thing.

There are 117,000 people waiting for transplants in the United States.  Only about 28,000 of the procedures are done here yearly and that fact has remained static for several years while the number of people on the list keeps increasing.  Last year there were about 6,000 living donations and over 7,000 patients died while waiting for their names to come up on the transplant list.  Those are very disturbing numbers.

What is more disturbing, even infuriating is the fact that while survey’s show overwhelming  American support for organ donation (over 90% of us think it’s a great idea) only about 40% of us ever get around to becoming donors.  That’s why people are dying.  It’s not that Americans don’t want to donate…it’s just that they don’t get around to it…there is no sense of urgency for them as there is for the patient who quietly waits for his or her call to come.

With only 40% donating organs it is obvious we should be trying something else,  Perhaps it is time to find a new way to encourage people to become donors now rather than continuing to kick the can down the road and allowing more people to die .  Guilt trips haven’t worked well and neither have appeals to the human sense of sacrifice and doing the right thing so that means we absolutely must try something else and that something is money.  Money talks, money works and money motivates.

Before I get into any suggestions on how to use money or where to get it let’s go back to my opening comments.  Everyone is making money on organ transplants except the patient.  Let’s look at just how much money is involved.

According to Transplant Living http://www.transplantliving.org/before-the-transplant/financing-a-transplant/the-costs/  These are the estimated  U.S. Average 2011 Billed Charges Per Transplant

Transplant

30 Days
Pre-
transplant

Organ

Procurement

Hospital
Transplant Admission

Physician
During Transplant

180 Days
Post-transplant
Admission

Immuno-
suppressants

 Total
Heart Only $47,200 $80,400 $634,300  $67,700 $137,800 $30,300 $997,700
Single Lung $10,300 $73,100 $302,900 $33,500 $117,700 $23,700 $561,200
Double Lung $21,400 $90,300 $458,500 $56,300 $142,600 $28,200 $797,300
Heart-Lung $56,800 $130,500 $777,700 $81,000 $169,100 $33,300 $1,148,400
Liver $25,400 $71,000 $316,900 $46,600 $93,900 $23,300 $577,100
Kidney $17,000 $67,200 $91,200 $18,500 $50,800 $18,200 $262,900
Pancreas $17,000 $65,000 $108,900 $17,800 $61,400 $19,300 $289,400
Intestine $55,100 $78,500 $787,900 $104,100 $146,600 $34,600 $1,206,800

*Most transplant programs have social workers and financial coordinators who can help you with the financial details of your transplant. Depending on the structure at your center, one or both will help you develop a strategy.  For a finely detailed analysis of the cost of transplants you’ll want to study this report from 2008 http://publications.milliman.com/research/health-rr/pdfs/2008-us-organ-tisse-RR4-1-08.pdf

Medical costs include:

  • insurance deductibles
  • insurance co-pays
  • pre-transplant evaluation and testing
  • surgery
  • fees for the recovery of the organ from the donor
  • follow-up care and testing
  • additional hospital stays for complications
  • fees for surgeons, physicians, radiologist, anesthesiologist and recurrent lab testing
  • anti-rejection and other drugs, which can easily exceed $2,500 per month
  • rehabilitation

Non-Medical Costs

Non-medical costs include:

  • food, lodging and long distance phone calls for you and your family
  • transportation, to and from your transplant center, before and after your transplant
  • plane travel to get to your transplant hospital quickly
  • child care
  • lost wages if your employer does not pay for the time you or a family member spends away from work
  • If your transplant center is not close to your home, lodging close to the center before and after your surgery. Some centers offer free or low-cost hospitality houses for you and your family.

The above data clearly establish that transplants are expensive and that a good many people and organizations are profiting from it and I have no objection to that.  People ought to be paid for their work.  At the same time, though, is it fair that donor’s and their families get nothing?  Is it fair that in many cases donors, especially living donors may have substantial out of pocket expenses that are not reimbursed?

Living donors actually face a disincentive because they may have to pay the bills for travel, meals, accommodations, lost income and other expenses, including medical costs if their own health is compromised because of the operations. They also take on at least some risk of future discrimination from employers or insurers.

The American Medical Association says that at the low end, the added expense of donating may be a few hundred dollars, but the range can rise to about $20,000.   The AMA points out that while Federal law strictly prohibits the selling of any organs, donors may be reimbursed legally for their expenses. Still, that hardly is a guarantee.

Not well known is the fact that low-income donors and recipients can get financial aid through the National Living Donor Assistance Center, which is federally funded. More affluent recipients also can choose to pay donors’ expenses directly. But most donors come from that great middle ground where they may have to experience a financial loss in order to donate an organ.  That is an extraordinary and unreasonable expectations and should be addressed.  Why should a donor have to pay a financial price for doing the right thing?

According to the American Medical Association (AMA) the ir House of Delegates voiced its support in June of 2012  for an important proposition: http://www.ama-assn.org/amednews/2012/08/13/edsa0813.htm

“Living donors should not have to fear negative financial consequences for giving the gift of life. The recommendations call on governments, state and federal, to help remove financial barriers to living donation. That includes provisions for mitigating out-of-pocket expenses, ensuring access to health insurance, and guaranteeing freedom from discrimination in employment and in obtaining life insurance.

One example noted in a report to delegates is the proposed federal “Share Your Spare Act,” which would provide a tax credit of up to $10,000 to cover donor expenses or lost wages. A number of states and the federal government already have enacted a patchwork of donor work leave provisions, mostly for government employees. There also are a number of state tax credit provisions for donors.

The Affordable Care Act and its prohibition against preexisting condition denials, upheld by the U.S. Supreme Court after the delegates’ vote, is expected largely to take care of concerns about donors’ future access to health insurance coverage starting in 2014. Necessary legal protections against discrimination in employment and in purchasing life insurance are still lacking.”

Deceased donors pay nothing for the organ recovery and transplant process but their families still have to foot the bill for the illness that caused them to die and for all expenses following the death including funerals.  Somehow it seems as though there should be some accommodation for donors.  More for Living donors who can actually experience considerable cost to both their financial and physical health but why not at least pay funeral expenses for the gift of life from deceased donors?

When the National Organ Transplant Act (NOTA) passed and was signed into law in 1984 it prohibited payments for organs but did not prohibit reimbursement of expenses.  It didn’t address that subject at all.  That would be a perfectly legal step to take and maybe, given the right explanation, the public would approve of a financial incentive to donate that would at least cover expenses including funerals.  Other incentives could  be contributions to retirement plans, college scholarships or paying some or all of the cost of health care for the surviving spouse or partner.

We should point out here that the organ in greatest demand is, of course, the kidney.  In the U.S. of the 117,000 people on the transplant list, about 90,000 of them are waiting for kidneys.   How do we get more kidneys?  One way is to pay for them which is strictly prohibited by the 1984 law that established the organ transplant industry.   Laws, though, can be changed and if the proper safeguards are in place paying for organs could work.   An example of a country where organs are legally bought and sold is Iran.   Yes, Iran.  Not often an example of anything good this system seems to be working for Iran as they have virtually eliminated their kidney shortage.

Iran is the only country where the selling and buying of kidneys is legal. As a result, there is no shortage of the organs.  Here’s how it works there. The system allows people to sell and buy kidneys under state-regulated surveillance.  Two charities facilitate the process by finding potential vendors and introducing them to the recipients, and are charged with checking the compatibility of a possible donation and ensuring a fair trade.  After the transplant, the vendor is compensated by both the government and the recipient.  Iranians are not allowed to donate kidneys to non-citizens.

Would that work here…there are pros and cons but there’s also a little bit of research on the subject.  In 2010 a survey of 409 Philadelphia, Pennsylvania commuters was published by the American Medical Association on how willing people would be to donate under 12 different scenarios.  The study found that many concerns about paying kidney donors may be overblown. Among other things, participants were asked how willing they would be to donate a kidney to family members or strangers for no pay, for $10,000, or $100,000.

“The study provides no evidence whatsoever that the poor would be exploited or wouldn’t make informed choices,” said Scott D. Halpern, MD, PhD, the study’s lead author and assistant professor of medicine and epidemiology in the division of pulmonary and critical care medicine at the University of Pennsylvania School of Medicine. “The central finding is that payments do not seem to influence the poor more than the rich. The influence of a $10,000 payment on people earning more than $100,000 a year is the same as a $10,000 payment is for people earning less than $20,000 a year.”

On the flip side of the “pay for organs” issue there are some very serious concerns.  Pakistan, for example, is rife with kidney for sale nightmares. According to a 2007 story in the Washington Post  http://www.washingtonpost.com/wp-dyn/content/article/2007/04/13/AR2007041302066.html  “About 40 percent of the people in some Pakistani villages are turning up with only one kidney. Charts presented at the meetings show that the number of “donations” from unrelated Pakistanis is skyrocketing. Two-thirds of the people receiving these organs are foreigners. Data from the Philippines show the same thing.”  And it is even worse today in 2013.

A number of arguments against selling organs get bandied about, but there are two which lie behind most of the others. The first involves the concern with how selling organs leads to the commodification of human bodies, and the second is the concern with the exploitation of the poor for the benefit of the rich. These are difficult arguments to explain and are not convincing to everyone, but they cut to the heart of what we want our society ultimately to be like.

The bottom line is that something must be done to meet the demand for organs. It is at least as unethical to let people die because of being afraid to change the system as it is to pay for organs from poor people.  You can learn more on this subject by checking out these links:

http://www.cnn.com/2012/07/03/health/allowed-sell-organs-time/index.html

http://www.npr.org/2008/05/21/90632108/should-we-legalize-the-market-for-human-organs

http://www.newint.org/argument/2010/10/01/human-organ-trade-debate/

http://plato.stanford.edu/entries/organs-sale/

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 — 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.

Bristol Myers /Gilead Science — Profits Ahead of Life


I have a good news, bad news story to report today.  It is about a combination of life saving drugs that may never see the light of day because the two companies that make them can’t or won’t cooperate with one another.  One woman, Margaret Dudley of San Antonio Texas is doing something about it.  More about her, later.

This is about a combination of drugs from Bristol Myers Squib and Gilead Science that could be a cure for Hepatitis C which affects nearly 200 million people worldwide.  It is a viral infection that can lead to liver failure and death.  End-stage liver disease (cirrhosis) due to chronic hepatitis C has become the leading indication for liver transplantation in the United States.

First the good news, this really could be a cure.   A combination of Gilead’s GS-7977 and Daclatasvir from Bristol Myers Squib shows great promise as a cure according to some limited studies.  These drugs are pretty effective on their own but apparently when combined they could be a cure…yes cure.  I know, cure is pretty strong language in the medical world but it is the medical world that is using the term.

Now the bad news.  The two companies are not cooperating with one another, they can’t seem to agree on anything other than to disagree and in the meantime people are getting sicker and dying.  This is the classic battle over which company will make the most money when the two drugs are combined.

Here’s an Excerpt-The Street

Gilead, Bristol Put Profits Ahead of Best Care for Hep C Patients

“The new Hep C therapy at issue here combines Bristol’s Daclatasvir with Gilead’s GS-7977. Each is a single pill administered once a day. The results from this new therapy are nothing short of spectacular — an early cure rate of 100% for genotype 1 patients and 91% of genotype 2/3 patients, according to data from a mid-stage study announced Thursday at the European Association for the Study of Liver Disease (EASL) meeting.

A 100% cure rate for genotype 1 patients! Obviously, results can’t get better than that.

You’d think there’d be a rush to move the combination regimen of Daclatasvir and GS-7977 into a larger, confirmatory phase III trial, but you’d be mistaken. Amazingly, this most promising new treatment for hepatitis C patients may actually be discontinued because Bristol and Gilead can’t work together.

Good luck understanding why Bristol and Gilead can’t come together to help Hep C patients. The companies can’t even agree on the fact that the two companies are not agreeing”.

This is an incredibly important story and one that needs wide circulation in hopes of forcing these two companies to cooperate for the sake of saving lives instead of who can provide the greatest return on investment.  As mentioned earlier, Hep C affects about 200 million people worldwide.

Typically, to become infected with hepatitis C virus, the blood of an infected person enters the body of someone who is not infected. The most common way involves sharing needles or other equipment used to inject drugs. This kind of Hepatitis C infection is in the news now because an infected healthcare worker at a hospital in New Hampshire used needles on himself then left them for others to use.  Thousands may have been infected as a result and that investigation continues.

It is also possible, but less likely to become infected with shared use of personal care items such as toothbrushes and razors. Infection is also possible through sexual contact. Hepatitis C is not spread by casual contact, kissing, coughing, sneezing, sharing utensils, or breastfeeding.

Other people with greater risk of infection include:

  • People with tattoos or body piercing done with non-sterile equipment.
  • People who received an organ transplant or blood transfusion before July 1992.
  • People with clotting problems who took blood products prior to 1987.
  • People receiving hemodialysis or who have a history of hemodialysis for kidney failure.
  • People with HIV infection.

Since July 1992, all blood and organ donations in the U.S. are screened for the hepatitis C virus. According to the CDC, the number of hepatitis C infections declined by 90% from 1994 to 2006, partially as a result of this.

A diagnosis of hepatitis C infection doesn’t necessarily mean you need treatment. If you have only slight liver abnormalities, you may not need treatment, because your risk of future liver problems is very low. Your doctor may recommend follow-up blood tests to monitor for liver problems.

Hep C symptoms may include:

  • Fatigue
  • Upset stomach and diminished appetite
  • Joint and muscle pain

Also, patients may experience symptoms related to liver cirrhosis, such as:

  • Jaundice, which is a yellowing of the skin and eyes
  • Urine being a dark yellow color
  • An increased tendency to bleed or bruise

Treatment of chronic hepatitis C varies depending on the individual. A person with chronic hepatitis C may not need or benefit from treatment. Some people may not be able to tolerate treatment because of side effects.

Currently, the FDA has approved the following treatments for hepatitis C:

  • Pegylated interferon alfa-2a
  • Pegylated interferon alfa-2b
  • Ribavirin
  • Standard interferon alfa
  • Incivek
  • Victrelis

Common side effects of interferons include fatigue, muscle pain, headache, nausea, vomiting, weight loss, and depression, and changes to your blood cell counts. Side effects of ribavirin include anemia, skin rash, fatigue, and nose/sinus congestion so a new treatment with minimal side effects and greater effectiveness would be cheered wildly.

Liver transplant
if your liver has been severely damaged, a liver transplant may be an option. During a liver transplant, the surgeon removes your damaged liver and replaces it with a healthy liver. Most transplanted livers come from deceased donors, though a small number come from living donors who donate a portion of their livers.

For people with hepatitis C infection, a liver transplant is not a cure. Treatment with antiviral medications usually continues after a liver transplant, since hepatitis C infection is likely to recur in the new liver.

Now to our hero 61 year old Margaret Dudley of San Antonio, Texas.  Margaret thinks this situation is intolerable and she has launched a petition drive to encourage the two companies to work together to save lives.

Last fall, she was tested for hepatitis C she believes she contracted from some earlier tattoos.  “I had no idea,” Dudley said. “I had no reason to think it would come back positive, but it did.”

Then she found out about Bristol Myers Squib and Gilead.  “That’s basically what me and millions of others have been waiting for,” Dudley commented.  We’re asking these companies put best patient health before profits.”

She has several thousand on her online petition so far and says public pressure may spark the pharmaceutical companies to keep going with clinical trials.  Dudley’s goal is to gather 100,000 signatures by July 28, 2012, which is World Hepatitis Day.  We encourage you to sign the petition.  Just go to: http://tinyurl.com/cow2uwt  We just can’t let profitability trump human life.

Some of the information in this blog was drawn from the following sources.

http://www.hcvadvocate.org/hcsp/articles/Shaw-Stiffel-1.html

http://tinyurl.com/d55az86

http://www.webmd.com/hepatitis/hepc-guide/chronic-hepatitis-c

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.

 

You Could Die Today! Will You Bury Your Organs Or Donate Them?


What if tomorrow or even today was your last day to be alive?  It’s possible.  No one knows when their time will come.  We start dying upon birth and could die young from a variety of medical or accidental causes. That’s why it is so important to become an organ donor now, right now.  Just go to www.donatelife.net and do it. 

There are three reasons you should become an organ donor right now:

  1. You could die today or tomorrow and if you are not a donor your organs could be buried with you.  It happens 20,000 times a year in the U.S. 
  2. You could find out that you or a loved one needs a transplant
  3. You are a compassionate human being who wants to save lives and you understand the urgency.

My blogs are about living, about saving lives and about how the living can help do that but sometimes a writer has to provide some shock value in order to get people’s attention.  So here’s the shock.  You should become an organ donor soon because you could die soon, very soon. Stand by…there’s more shock to come.

You’ve all heard the numbers 114,000 people on the organ transplant waiting list with only 28,000 transplants done each year. Estimates indicate about 20 people die every day while waiting for organs.  Becoming an organ donor is an urgent issue but for most potential donors it is only urgent for the would-be recipient but consider this… you or a loved one could be the next patient in line waiting for an organ transplant. 

While 9 out of 10 Americans support organ donation, only 38% of US driver’s license or ID card holders are registered as organ donors, according to the 2009 Organ Donor Report Card. Overall, only 1 in 3.75 people in the US are registered organ donors. And in 2008, for the first time in at least 20 years, the number of both living and deceased donors declined over the previous year, according to the United Network for Organ Sharing (UNOS) Organ Procurement and Transplantation Network (OPTN).

None of us expect to die any time soon so we approach organ donation with a, “What’s the rush” attitude.  “They can’t take my organs until I die and I’m going to be around for a while so I’ll become a donor when I get around to it.”  But…what if you die before you get around to it?  Here are some startling odds.

All figures below are for U.S. residents.as of 2005, the latest year this data was available.

Your chance of dying of any of the following                                                   Lifetime Odds

Heart Disease                                                                                                        1-in-5

Cancer                                                                                                                    1-in-7

Stroke                                                                                                                     1-in-23

Accidental Injury                                                                                                   1-in-36

Motor Vehicle Accident*                                                                                      1-in-100

Intentional Self-harm (suicide)                                                                            1-in-121

Falling Down                                                                                                         1-in-246

Assault by Firearm                                                                                               1-in-325

Fire or Smoke                                                                                                        1-in-1,116

Natural Forces (heat, cold, storms, quakes, etc.)                                             1-in-3,357

Electrocution*                                                                                                       1-in-5,000

Drowning                                                                                                               1-in-8,942

Air Travel Accident*                                                                                           1-in-20,000

 SOURCES: National Center for Health Statistics, CDC; American Cancer Society; National Safety Council; International Federation of Red Cross and Red Crescent Societies; World Health Organization; USGS; Clark Chapman, SwRI; David Morrison, NASA; Michael Paine, Planetary Society Australian Volunteers

 Heart disease, Cancer, Stroke and Accidents claim the most people every year.  If you really believe in organ donation becoming a donor right now is the only logical thing to do.                                                                                                              

I hope everyone who reads this blog lives for a very, very long time but I also hope you recognize that there is no time to spare in becoming an organ donor.  My donor was only 30 years old when he died.  I’m sure he expected to live a lot longer than that but fate is unpredictable so why not arrange now to save some lives.  If you wait you could not only lose your own life but cause others to die because your organs were buried with You.                                                                                               

It is so easy to become a donor.  You can do it by going to www.donatelife.net , on Facebook or you can get free organ donation Apps for your cell phone, pads and computers too.  One is http://www.appbrain.com/app/donor-register/com.sam.donorregister  I understand that Blackberry and I-phone have similar apps.

Please understand the urgency. Please go to your computer right now and sign up and then be sure to tell your family, your physician and your faith leader if you have one and…when you renew your driver’s license make sure you check the organ donor designation.

Bob Aronson of Bob’s Newheart  is a 2007 heart transplant recipient, the founder of Facebook’s 1800 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.

Journalistic Terrorism


I am a heart transplant recipient and a registered organ donor.  Today my new heart aches for the over 113,000 people on the national transplant list and their families because an irresponsible writer just told them their lives are unimportant and that they should go home and die.  I know what it’s like to be on that list.  I know firsthand the terror associated with the fact that because less than half of all Americans are organ donors some patients will die waiting.  In 2010 over 6,000 died and now the shortage of donor organs is even greater with the likelihood that the fatality list will go even higher. With the publication of a “don’t become an organ donor” column in the Wall Street Journal, the author and the paper have displayed a heartlessness I thought could not exist.  I would rather not believe that anyone would seek financial reward at the cost of human life but that’s what author Dick Terisi and Wall Street Journal owner and publisher Rupert Murdoch have done.  It is what it is – Journalistic Terrorism.

The irresponsibility of Terisi and Murdoch is going to cause a lot of people to die.  The story in question claims that physicians allow and even facilitate the death of patients in order to retrieve their organs for transplantation.  Not only is that charge wrong, it is reckless and life threatening.  The teams of people in hospitals that care for patients, however ill, are not connected nor do they report to the very specialized transplant teams in the same organization.  And – not all hospitals even have transplant capabilities.  There are 5, 754 accredited hospitals in the United States but only 242 of them are transplant centers.  Terisi makes it sound as though all hospitals are transplant centers with surgeons hovering over patients, scalpel in hand ready to retrieve organs.  That picture is not only distorted it is the product of the overactive imagination found in most fiction writers.  The problem is Terisi passes himself off as a knowledgeable reporter of actual events.  Let me be very blunt.  He knows better but lying about the process sells more books and that’s his bottom line.

His major point is that Physicians are cavalier in their approach to proclaiming brain death so that they can hurry the process of recovering organs for transplant.  Fact:  the procedure for determining death prior to recovery of organs is rigorous, thorough and as exact as medical science can make it.  My previous blog on the subject “Death by Journalism” explains the process for declaring brain death in great detail.   This story is a dramatic example of what I call “Junk” science.  He uses anecdotal evidence and off the cuff remarks of a single physician to make his point and calls it evidence.

Some readers are going to believe this nonsense and refuse to become organ donors.  Others, who are donors, may decide to reverse their decision.  In either case people will die as a result because the critical shortage of organs for transplant will become even more critical.  Terisi and Rupert Murdoch’s Wall Street Journal must be held accountable for this reckless endangerment of human life.  This time there is a cost for having a “Free” press and the cost will likely be the deaths of a good many people…just so an author can sell some books and a publisher can sell a few more newspapers. Shame on them!

If you want the facts about organ donation/transplantation and associated issues here are some links.

* Fact sheet.  Myths about organ donation (this link directly addresses the subject of care of dying patients)  http://tinyurl.com/7xngpet

* 25 facts about donation/transplantation National Kidney Foundation http://tinyurl.com/8o6uq2

* How the transplant system workshttp://tinyurl.com/7rccn3u

* UNOS facts about Transplantation in the U.S.  http://tinyurl.com/7bkmaft

* Transplant Recipients International Organization (TRIO) General information http://www.trioweb.org/

You can also read more about a wide variety of donation/transplantation issues on my blog Bob’s Newheart on WordPress www.bobsnewheart.wordpress.com

Bottom line.  We can’t stop people like Terisi and Murdoch from publishing lies and distortions but we can mitigate their effect by speaking up and letting the truth be known that organ donation threatens no one and saves thousands of lives.

Every organ donor can either save or enhance the lives of up to 60 people.  That’s a fact!  Tell the story and tell it often.  I’m here to write this piece because of an unselfish organ donor.  I will not let his action or his character be defiled because of the greed of a writer and publisher – I hope you will join me in honoring all donors and their families by spreading the word that organ donation saves lives.

Lodge your protest at Wall Street Journal Contact:
Online: onlinejournal@wsj.com
1-800-JOURNAL (1-800-568-7625)
Outside the U.S.:1-609-514-0870
Monday – Friday: 7am to 10pm ET
Saturday: 8am to 3pm ET

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.

 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.

 

Death by Journalism


On behalf of the over 1600 members of Facebook’s Organ Transplant Initiative and my Blog, Bob’s Newheart on WordPress, I am lodging a very strong objection to Dick Terisi’s inaccurate and life-endangering  column in the Wall Street Journal,  “What You Lose When You Sign that Donor Card.”  Not only should Mr. Terisi retract his irresponsible words he should also issue an immediate public apology to everyone on the national transplant list and their families.

Recently a hack journalist, Dick Terisi, published a column in the Wall Street Journal suggesting that American physicians were killing patients in order to extract their organs for transplant.  This irresponsible attack on a system that has saved thousands of lives and will save thousands more is worse than bad journalism it can only be termed what it is – death  by journalism, because there will be people who will refuse to become organ donors as a result.

I am a heart transplant recipient who knows the desperation felt by being on “the list.”  I can only imagine the emotional trauma Mr.Terisi caused with his reckless disregard for truth and lack of compassion for the dying and the loved ones who care for them.  He has also insulted the professional and personal integrity of every medical professional in the nation, but I’ll not take up their defense.  I’m sure they will rise to the occasion.

There are over 113,000 people on the aforementioned list but fewer than 30,000 transplants are done each year in the United States because of the shortage of organs.  That means that thousands die while waiting.  Mr. Terisi’s inaccurate portrayal of the donation system is based on “junk” science, anecdotal information and an “off the cuff” remark by a single physician.  It ensures that even more people will die because some readers will believe his distortions and either not become organ and tissue donors or change their existing designation to non-donor.

I know that others in the transplant community are preparing point by point responses to Terisi’s ravings so I’ll just touch on one – brain death. He told a simple lie so here’s the simple truth.

According to the American Academy of Neurology, brain death is defined as the irreversible loss of function of the brain, including the brain stem. The most common causes of brain death in adults are traumatic brain injury and subarachnoid hemorrhage (a form of stroke)   The guidelines for determining brain death were written by a team of experts lead by  Eelco F. Wijdicks, M.D., Ph.D. from the Mayo Clinic in Rochester, Minnesota.  Dr.  Wijdicks is considered the preeminent expert on brain death in the world – and he says, “The brain death diagnosis can be made only after a comprehensive clinical evaluation that often involves more than 25 separate assessments.”  These assessments must be done by highly qualified physicians.

OK…I’ve given you the simple truth now here’s a detailed  explanation as printed in Critical Care Nurse which is a far cry from the simple almost cavalier approach suggested by non-physician, non-medical expert, non-donor and self proclaimed, “heartless, selfish bastard” Dick Terisi.  http://ccn.aacnjournals.org/content/24/5/50.full

“Current standards for making a diagnosis of brain death require (1) identification of the suspected cause of the coma, (2) determination that the coma is irreversible, (3) performance of a clinical examination, and (4) interpretation of appropriate neurodiagnostic and laboratory tests.1 Identification of the cause of coma is based on the patient’s history and the results of neurodiagnostic tests such as computed tomographic scans. Common causes of brain death detected on computed tomographic scans include brain masses with or without herniation and edema.1 In determining the cause of the coma, conditions that could confound the clinical assessment must also be ruled out, such as hypothermia, hypotension, severe acid-base abnormalities, drug or alcohol intoxication, sedation, and neuromuscular blockade.

The next step in diagnosing brain death is performing a directed, clinical examination. According to the American Academy of Neurology,2 each criterion of the clinical examination should be satisfied on 2 separate occasions. The length of time between examinations has not been defined and varies depending on the cause of the coma. The American Academy of Neurology2 has suggested that a 6-hour interval between examinations is reasonable; others1 have recommended a period of up to 48 hours in instances in which unknown toxins may be responsible for the coma. In addition, 2 conditions must be met before the clinical examination is conducted: the patient’s blood pressure should be greater than 90 mm Hg, and the patient’s body temperature should be greater than 32°C (90°F).

The clinical examination includes an evaluation of overall responsiveness, brain-stem reflexes, and apnea testing. The patient should be deeply comatose, with no response to painful or verbal stimuli, including decorticate or decerebrate posturing. He or she should also have no spontaneous movement, including shivering, seizures, or respiratory movement. The single exception is movement resulting from spinal reflexes. The assessment of responsiveness and movement requires that the effects of all neuromuscular blocking agents and sedatives have worn off completely.”

Mr. Terisi’s column is bad enough but the Wall Street Journal cannot be absolved of blame.  Terisi would have had a far smaller audience and a minimized effect had the Wall Street Journal used sound journalistic judgment and trashed this extremely shoddy piece of journalism.  WSJ ought to join Terisi in the public apology I called for earlier but I expect neither to do so because that takes “class” and integrity — commodities which neither seem to possess.

Lodge your protest at Wall Street Journal Contact:
Online: onlinejournal@wsj.com
1-800-JOURNAL (1-800-568-7625)
Outside the U.S.:1-609-514-0870
Monday – Friday: 7am to 10pm ET
Saturday: 8am to 3pm ET

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.
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.

Bob Aronson

Heart Transplant recipient

Jacksonville, Florida

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