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Why You Can’t Get Pain Meds


dea cartoonBy Bob Aronson

This is not my first post on this subject and it will no be the last because Americans with real pain are suffering needlessly.

Chronic pain is real.  I know, I have it and right now thousands of U.S. docs are refusing to prescribe narcotic pain killers not because people don’t need them but rather because federal agencies in their zeal to eliminate “Pill Mills” have frightened physicians.

They’ve told docs they run the risk of being investigated if they can’t prove an absolute need for every opioid prescription they write.  The result is that docs don’t want or need the hassle so many of them are saying, “No” to all requests for pain killers even when they know the requests are legitimate.  It happened to me and it is happening to thousands of others as well.

Federal agencies have gone over the edge on this one.  Their strong-arm tactics aimed at stopping a few unscrupulous physicians may result in some license revocation and brief incarceration while thousands if not millions of chronic pain sufferers are condemned to living with extreme discomfort and excruciating pain.  Have they spent any time thinking through the effect of their intimidation of doctors and pharmacies?   Do they really think that taking drugs away from people who need them will affect the trafficking of prescription meds?

While I understand physician’s reluctance to write prescriptions in the face of pressure from the feds I also think their behavior is as arrogant and irresponsible as the feds.  Physicians take an oath to treat the sick and to do no harm and by refusing to treat patients with with provable, legitimate pain they are violating both promises and risking the physical and mental health of their patients. 

Ever since I published my first blog on the subject I’ve received a constant stream of emails, tweets, Facebook messages and phone calls from people who have been cut off by their physicians.  Just this morning I got this email;

“bob, just read article on crackdown on narc . I have bladder cancer, replaced knee that was screwed up .  Other knee has to be replaced, have torn rotator cup right arm, bulging discs in c5 & c6. so yesterday my doc cut out my Lortabs because of letter from DEA.   Is this right & what do I do?”

What is most bothersome to me is that I don’t really have an answer other than to shop around for a doctor that will prescribe what he/she needs.  Certainly the oncologist should be sympathetic. This is a very serious problem but it is unlikely to be addressed because everyone is afraid…Afraid of being “Soft on narcotics enforcement,” afraid of being hassled, afraid of jail time.  It’s very sad and it is wrong.

Chronic pain is serious.  Millions suffer from it as the result of arthritis, accidents, broken bones, cancer and scores of other reasons.  I am one of them.  I have osteoarthritis and it hurts.  Without narcotic painkillers I would be immobilized.  With them I am functional and feel pretty good.  I don’t get high, I don’t’ abuse them I take them for their stated purpose – pain.

The Drug Enforcement Agency (DEA) has been hunting down “Pill Mill” doctors for years and they should.  It is an unfortunate truth that some real doctors will write prescriptions for almost anyone for an exorbitant fee.  Florida was the prescription drug capitol of the world until not long ago.

DEA is so obsessed with illegal narcotics that they don’t care who gets hurt along the way.  They have now persuaded the Food and Drug Administration to “Recommend” that physicians be more careful in their prescribing of hydrocodone (an opioid also known as Lortab or Vicodin).  The result of the DEA/FDA suggestions, warnings and recommendation is that physicians are just refusing to write prescriptions for narcotic painkillers or, in some cases any controlled substance including Valium. It’s not that docs are afraid of getting arrested, that’s quite unlikely.  They just don’t want the hassle of federal agents bugging them for detailed justification about the prescriptions they are writing for pain killers.

My primary care physician still provides me with the Oxycodone I need but I’m not so sure how long he’ll be able to hold out before he, too, will bend to the pressure from the feds. As the law stands now, a physician cannot call or fax a narcotic painkiller prescription to a pharmacy and those prescriptions are not refillable. To protect himself my primary care physician requires that I see him once a month for a pain evaluation before he writes new script.  Then with prescription in hand I must personally take it to a pharmacist.

I have written two blogs on the subject and there might be more coming.  You can find them at https://bobsnewheart.wordpress.com/2013/07/17/why-your-doc-wont-prescribe-narcotics-no-matter-how-bad-the-pain/     and at   https://bobsnewheart.wordpress.com/2013/12/10/suffering-from-chronic-pain-heres-what-you-need-to-know/

If you want to do something about this talk to your congressman or senator and get them to either deal with the issue legislatively or to put pressure on the FDA and DEA to back off legitimate claims for opioids.

Not Long ago the Boston Globe did a story on this issue.  It is well worth your time to read it.  http://tinyurl.com/l3ahgtc

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Bob 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.

Hospital Errors — The Third Leading Cause of Death in the U.S.


By Bob Aronson

oopsWhen your life has been saved in hospitals several times as mine has,  it is difficult to write a blog that is critical of those institutions but, it is just as difficult to ignore the facts.  As a writer who has made a commitment to provide accurate and timely information to his readers it would be irresponsible to do so. 

This blog is about and for pre and post-transplant patients, their families, donors, donor families, caregivers and friends.  Those of us who are awaiting transplants or who have had them spend an inordinate amount of time in hospitals and clinics.  Our compromised immune systems make us far more susceptible to a myriad of diseases and problems than the average patient and that means we have to be more alert and aware of our surroundings.  It is for that reason that I am posting this information.

 I did not make up the numbers you are about to read.  They are available for everyone to see and to analyze through the links I have provided.  Your comments are not only welcome, they are encouraged.

Never Events, Hospital Acquired Conditions and Sentinel Events

Heart disease and cancer are the number one and two causes of death in the United States.  Number three is medical errors. The very people who are supposed to be experts in saving lives are also responsible for thousands of deaths.

Medical errors in hospitals are killing us faster than chronic lower respiratory diseases, stroke (cerebrovascular diseases), accidents of all kinds, Alzheimer’s disease and diabetes combined.   The very people we trust our lives to – are not only contributing to our deaths they don’t seem to be learning from their mistakes because the problem appears to be getting worse.   While many hospitals claim they are making progress the national numbers don’t show it.  The evidence to the contrary is overwhelming.  And — one cannot help but believe that the problem is even worse than is stated in this posting because there is no system in the U.S. for reporting and tracking medical errors and their results.  Voluntary reporting is spotty and incomplete so we are left with educated guestimates and they are frightening.

In 1999, the Institute of Medicine published the “To Err Is Human” report.  It generated huge front page headlines everywhere by estimating that nearly 100,000 people die every year as a result of hospital errors.  At first there was widespread denial in the medical community but no longer.  The medical profession accepts that number.  The problem is that the number is wrong.

In 2010 another number was announced.  The Office of the U.S. Inspector General for Health and Human Services said that poor hospital care contributed to the deaths of 180,000 patients in Medicare alone in any given year…  Note — they said Medicare alone!  But — that number is wrong, too.  The story is about to get much worse.

A study published in September of 2013 in the Journal of Patient Safety says the numbers may be much higher.  They say that between 210,000 and 440,000 patients die in hospitals each year as the result of preventable errors. Please note that the numbers quoted in the preceding reports only refer to deaths.  None of the numbers I have seen say anything about the number of injuries caused by medical errors.

The new estimates were the result of work by John T. James, who works as a toxicologist at NASA’s Houston, Texas space center.  James also runs a group called Patient Safety America.  http://patientsafetyamerica.com/  James dedicated the site to his 19-year old son, John Alexander James, who he says, “Died as a result of uninformed, careless, and unethical care by cardiologists at a hospital in central Texas in the late summer of 2002.”

propublica logoProPublica an investigative journalism group asked three prominent patient safety researchers to review James’ study and all said his methods and findings were credible. http://www.propublica.org/  The American Hospital Association, though, rejects the number preferring to believe the number of 98,000 deaths from the 1999 report.

What’s the right number?  Nobody knows for sure but we do know it is not getting smaller. As stated earlier there is no standardized national reporting system on medical errors, who is affected and who makes them.

So we’re left with approximations, which are imperfect in part because of inaccuracies in medical records and the fact that a good many of the errors that take place are never reported. Hospitals and physicians have traditionally fought establishing a formal reporting system for fear of prosecution.  Instead they advocate a voluntary reporting system which begs the question, “Who is going to voluntarily admit to committing an error that resulted in a patient’s injury or death.”  I have to believe the number would be quite small.  Admissions of that nature could have extremely negative effects on careers and may even open the door to civil suits or criminal prosecution.  Perhaps I can be persuaded to think otherwise but I’ve seen nothing so far to indicate any voluntary system can work.

While the lay public calls them medical mistakes or errors the medical community has chosen to use different terminology.  They refer to their errors as “Never Events” or Hospital Acquired Conditions (HACs)    Never events are never supposed to happen – but they do and the onus is clearly on hospitals to do something about them.  The Government found that one way to force hospitals to deal with these problems is to refuse payment so for several years now Medicaid and Medicare do not pay for any Hospital Acquired Condition.

When I was a communications consultant I specialized in health care so I spent a great deal of time working inoops oops and oops and around hospitals and clinics.  The great majority of them take the issue of patient safety very seriously and have implemented a multitude of actions to address the problem.  They all have preventive programs and systems on what to do when there is an error.  Most hospitals conduct a “Root Cause Analysis” every time there is a significant error so they can be sure the same error doesn’t happen again. They are working on the problem but patients owe it to themselves to always be alert and to question everything.  Hospitals need to know that we are watching very carefully and that we will report what we see and experience.

Here is a list of HACs or Never Events as prepared by the National Quality Forum (NQF).

Table. Never Events or Hospital Acquired Conditions
Surgical events
Surgery or other invasive procedure performed on the wrong body part
Surgery or other invasive procedure performed on the wrong patient
Wrong surgical or other invasive procedure performed on a patient
Unintended retention of a foreign object in a patient after surgery or other procedure
Intraoperative or immediately postoperative/post procedure death in an American Society of Anesthesiologists Class I patient
Product or device events
Patient death or serious injury associated with the use of contaminated drugs, devices, or biologics provided by the health care setting
Patient death or serious injury associated with the use or function of a device in patient care, in which the device is used for functions other than as intended
Patient death or serious injury associated with intravascular air embolism that occurs while being cared for in a health care setting
Patient protection events
Discharge or release of a patient/resident of any age, who is unable to make decisions, to other than an authorized person
Patient death or serious disability associated with patient elopement (disappearance)
Patient suicide, attempted suicide, or self-harm resulting in serious disability, while being cared for in a health care facility
Care management events
Patient death or serious injury associated with a medication error (e.g., errors involving the wrong drug, wrong dose, wrong patient, wrong time, wrong rate, wrong preparation, or wrong route of administration)
Patient death or serious injury associated with unsafe administration of blood products
Maternal death or serious injury associated with labor or delivery in a low-risk pregnancy while being cared for in a health care setting
Death or serious injury of a neonate associated with labor or delivery in a low-risk pregnancy
Artificial insemination with the wrong donor sperm or wrong egg
Patient death or serious injury associated with a fall while being cared for in a health care setting
Any stage 3, stage 4, or unstageable pressure ulcers acquired after admission/presentation to a health care facility
Patient death or serious disability resulting from the irretrievable loss of an irreplaceable biological specimen
Patient death or serious injury resulting from failure to follow up or communicate laboratory, pathology, or radiology test results
Environmental events
Patient or staff death or serious disability associated with an electric shock in the course of a patient care process in a health care setting
Any incident in which a line designated for oxygen or other gas to be delivered to a patient contains no gas, the wrong gas, or is contaminated by toxic substances
Patient or staff death or serious injury associated with a burn incurred from any source in the course of a patient care process in a health care setting
Patient death or serious injury associated with the use of restraints or bedrails while being cared for in a health care setting
Radiologic events
Death or serious injury of a patient or staff associated with introduction of a metallic object into the MRI area
Criminal events
Any instance of care ordered by or provided by someone impersonating a physician, nurse, pharmacist, or other licensed health care provider
Abduction of a patient/resident of any age
Sexual abuse/assault on a patient within or on the grounds of a health care setting
Death or significant injury of a patient or staff member resulting from a physical assault (i.e., battery) that occurs within or on the grounds of a health care setting

 Real Life Examples of Medical Mistakes

  1. Wrong Heart and Lung Transplant.  One of the most tragic medical blunders ever took place at Duke University medical center in 2003, when surgeons transplanted a heart lung combination with the wrong blood type into 17-year-old Jesica Santillan.  Her body began to shut down almost immediately. The hospital somehow secured a second and proper matched heart lung combination for Jessica but it was too late and she died.  Dr. James Jaggers accepted responsibility for the tragic mistake, and Duke along with most other hospitals now have systems that require double checking the blood and tissue matches for transplants.
  1. Souvenir of surgery.  In the year 2000 49 year old Donald Church had an abdominal tumor removed at the U of Washington Medical center in Seattle. While he left the hospital without the tumor, he had something that he didn’t have on admission — a 13-inch-long retractor had been left in Church’s abdomen by mistake. To make matters worse it was a repeat performance for the hospital, four other such occurrences had been documented there between 1997 and 2000. Fortunately, surgeons were able to remove the instrument but also agreed to pay Church nearly $100,000.
  1. Healthy kidney removed.  Park Nicollet Methodist Hospital in Minnesota’s twin cities was the site of the next never event.  A man was admitted to have one of his kidneys removed due to a cancerous tumor.  Surgeons did just that but upon a post-surgical examination of the removed kidney they found no malignancy.  That’s when they discovered they had removed the wrong one.  We can’t report further because the family involved requested anonymity but Park Nicollet publicly admitted the error.

What Patients Can Do

A CNN report suggests that many medical errors could be prevented if patients were more aggressive about consequencesmaking sure their health care providers are more focused on what they are doing.

The cable network developed this list of what they call “10 Shocking Medical Mistakes and Ways to Not Become a Victim.

1. Mistake: Treating the wrong patient
Cause: Hospital staff fails to verify a patient’s identity.
Consequences: Patients with similar names are confused.
Prevention: Before every procedure in the hospital, make sure the staff checks your entire name, date of birth and barcode on your wrist band.

2. Mistake: Surgical souvenirs
Cause: Surgical staff miscounts (or fails to count) equipment used inside a patient during an operation.
Consequences: Tools get left inside the body.
Prevention: If you have unexpected pain, fever or swelling after surgery, ask if you might have a surgical instrument inside you.

3. Mistake: Lost patients
Cause
: Patients with dementia are sometimes prone to wandering.
Consequences: Patients may become trapped while wandering and die from hypothermia or dehydration.
Prevention: If your loved one sometimes wanders, consider a GPS tracking bracelet.

4. Mistake: Fake doctors
Cause: Con artists pretend to be doctors.
Consequences: Medical treatments backfire. Instead of getting better, patients get sicker.
Prevention: Confirm online that your physician is licensed.

5. Mistake: The ER waiting game
Cause: Emergency rooms get backed up when overcrowded hospitals don’t have enough beds.
Consequences: Patients get sicker while waiting for care.
Prevention: Doctors listen to other doctors, so on your way to the hospital call your physician and ask them to call the emergency room.
6. Mistake: Air bubbles in blood
Cause: The hole in a patient’s chest isn’t sealed airtight after a chest tube is removed.
Consequences: Air bubbles get sucked into the wound and cut off blood supply to the patient’s lungs, heart, kidneys and brain. Left uncorrected the patient dies.
Prevention: If you have a central line tube in you, ask how you should be positioned when the line comes out.

7. Mistake: Operating on the wrong body part
Cause: A patient’s chart is incorrect, or a surgeon misreads it, or surgical draping obscures marks that denote the correct side of the operation.
Consequences: The surgeon cuts into the wrong side of a patient’s body.
Prevention: Just before surgery, make sure you reaffirm with the nurse and the surgeon the correct body part and side of your operation.

8. Mistake: Infection infestation
Cause: Doctors and nurses don’t wash their hands.
Consequences: Patients can die from infections spread by hospital workers.
Prevention: It may be uncomfortable to ask, but make sure doctors and nurses wash their hands before they touch you, even if they’re wearing gloves.

9. Mistake: Lookalike tubes
Cause: A chest tube and a feeding tube can look a lot alike.
Consequences: Medicine meant for the stomach goes into the chest.
Prevention: When you have tubes in you, ask the staff to trace every tube back to the point of origin so the right medicine goes to the right place.

10. Mistake: Waking up during surgery
Cause: An under-dose of anesthesia.
Consequences: The brain stays awake while the muscles stay frozen. Most patients aren’t in any pain but some feel every poke, prod and cut.
Prevention: When you schedule surgery, ask your surgeon if you need to be put asleep or if a local anesthetic might work just as well.

There are other steps you can take to protect yourself besides those offered by CNN.  For example:

Demand a hand-wash.   While hospitals try to be germ free it is hard when almost everyone who enters the building is sick.  It is a well-known fact that the best thing people can do to protect themselves from disease is frequent hand washing.  The potential for contamination is everywhere so you are well within your rights to ask personnel to wash their hands before touching you.  And…by the way, wash your hands frequently too.

Make sure your room is clean. Usually hospital rooms are thoroughly washed between patients but not as thoroughly if you are going to be there for a while.   If you are concerned with the state of your room ask for certain areas or all of it to be disinfected.  Transplant recipients in particular must be sure they are in as germ free an environment as possible.  Certainly if hospitalized they should always wear a face mask to protect themselves.  And, do your best to stay out of crowded areas like elevators.  If you must enter a crowded room, wear a face mask. All hospitals have them you just have to ask for one…

To be even more specific though, Patient Safety America suggestions these you do the following to stay safe http://patientsafetyamerica.com/truth-about-healthcare/

1. The single most important way you can help to prevent errors is to be an active member of your health care team.

That means taking part in every decision about your health care. Research shows that patients who are more involved with their care tend to get better results. Here are some specific tips, based on the latest scientific evidence about what works best.

Medicines

2. Make sure that all of your doctors know about everything you are taking. This includes prescription and over-the-counter medicines, and dietary supplements such as vitamins and herbs.

At least once a year, bring all of your medicines and supplements with you to your doctor. “Brown bagging” your medicines can help you and your doctor talk about them and find out if there are any problems. It can also help your doctor keep your records up to date, which can help you get better quality care.

3. Make sure your doctor knows about any allergies and adverse reactions you have had to medicines.

This can help you avoid getting a medicine that can harm you.

4. When your doctor writes you a prescription, make sure you can read it.

If you can’t read your doctor’s handwriting, your pharmacist might not be able to either.

5. Ask for information about your medicines in terms you can understand—both when your medicines are prescribed and when you receive them.

  • What is the medicine for?
  • How am I supposed to take it, and for how long?
  • What side effects are likely? What do I do if they occur?
  • Is this medicine safe to take with other medicines or dietary supplements I am taking?
  • What food, drink, or activities should I avoid while taking this medicine?

6. When you pick up your medicine from the pharmacy, ask: Is this the medicine that my doctor prescribed?

A study by the Massachusetts College of Pharmacy and Allied Health Sciences found that 88 percent of medicine errors involved the wrong drug or the wrong dose.

7. If you have any questions about the directions on your medicine labels, ask.

Medicine labels can be hard to understand. For example, ask if “four doses daily” means taking a dose every 6 hours around the clock or just during regular waking hours.

8. Ask your pharmacist for the best device to measure your liquid medicine. Also, ask questions if you’re not sure how to use it.

Research shows that many people do not understand the right way to measure liquid medicines. For example, many use household teaspoons, which often do not hold a true teaspoon of liquid. Special devices, like marked syringes, help people to measure the right dose. Being told how to use the devices helps even more.

9. Ask for written information about the side effects your medicine could cause.

If you know what might happen, you will be better prepared if it does—or, if something unexpected happens instead. That way, you can report the problem right away and get help before it gets worse. A study found that written information about medicines can help patients recognize problem side effects and then give that information to their doctor or pharmacist.

Hospital Stays

10. If you have a choice, choose a hospital at which many patients have the procedure or surgery you need.

Research shows that patients tend to have better results when they are treated in hospitals that have a great deal of experience with their condition.

11. If you are in a hospital, consider asking all health care workers who have direct contact with you whether they have washed their hands.

Hand washing is an important way to prevent the spread of infections in hospitals. Yet, it is not done regularly or thoroughly enough. A recent study found that when patients checked whether health care workers washed their hands, the workers washed their hands more often and used more soap.

12. When you are being discharged from the hospital, ask your doctor to explain the treatment plan you will use at home.

This includes learning about your medicines and finding out when you can get back to your regular activities. Research shows that at discharge time, doctors think their patients understand more than they really do about what they should or should not do when they return home.

Surgery

13. If you are having surgery, make sure that you, your doctor, and your surgeon all agree and are clear on exactly what will be done.

Doing surgery at the wrong site (for example, operating on the left knee instead of the right) is rare. But even once is too often. The good news is that wrong-site surgery is 100 percent preventable. The American Academy of Orthopedic Surgeons urges its members to sign their initials directly on the site to be operated on before the surgery.

Other Steps You Can Take

14. Speak up if you have questions or concerns.

You have a right to question anyone who is involved with your care.

15. Make sure that someone, such as your personal doctor, is in charge of your care.

This is especially important if you have many health problems or are in a hospital.

16. Make sure that all health professionals involved in your care have important health information about you.

Do not assume that everyone knows everything they need to.

17. Ask a family member or friend to be there with you and to be your advocate (someone who can help get things done and speak up for you if you can’t).

Even if you think you don’t need help now, you might need it later.

18. Know that “more” is not always better.

It is a good idea to find out why a test or treatment is needed and how it can help you. You could be better off without it.

19. If you have a test, don’t assume that no news is good news.

Ask about the results.

20. Learn about your condition and treatments by asking your doctor and nurse and by using other reliable sources.

You may ask yourself upon reading all of this what the U.S. Food and Drug Administration (FDA) is doing to make hospitals safer.  Well, they can’t be in every hospital all the time to watch everything and…that’s not their role.  The FDA is probably not doing enough to protect us, there’s no way you can satisfy everyone but they are doing a few things that could make a huge difference.  One of which is to eliminate drug name confusion.

To minimize confusion between drug names that look or sound alike, the FDA reviews about 300 drug names a year before they are marketed. “About one-third of the names that drug companies propose are rejected,” says Phillips. The agency tests drug names with the help of about 120 FDA health professionals who volunteer to simulate real-life drug order situations. “FDA also created a computerized program that assists in detecting similar names and that will help take a more scientific approach to comparing names,” Phillips says.

After drugs are approved, the FDA tracks reports of errors due to drug name confusion and spreads the word to health professionals, along with recommendations for avoiding future problems. For example, the FDA has reported errors involving the inadvertent administration of methadone, a drug used to treat opiate dependence, rather than the intended Metadate ER (methylphenidate) for the treatment of attention-deficit/hyperactivity disorder (ADHD). One report involved the death of an 8-year-old boy after a possible medication error at the dispensing pharmacy. The child, who was being treated for ADHD, was found dead at home. Methadone substitution was the suspected cause of death. Some FDA recommendations regarding drug name confusion have encouraged pharmacists to separate similar drug products on pharmacy shelves and have encouraged physicians to indicate both brand and generic drug names on prescription orders, as well as what the drug is intended to treat.

The last time the FDA changed a drug name after it was approved was in 2004 when the cholesterol-lowering medicine Altocor was being confused with the cholesterol-lowering medicine Advicor. Now Altocor is called Altoprev, and the agency hasn’t received reports of errors since the name change. Other examples of drug name confusion reported to the FDA include:

  • Serzone (nefazodone) for depression and Seroquel (quetiapine) for schizophrenia
  • Lamictal (lamotrigine) for epilepsy, Lamisil (terbinafine) for nail infections, Ludiomil (maprotiline) for depression, and Lomotil (diphenoxylate) for diarrhea
  • Taxotere (docetaxel) and Taxol (paclitaxel), both for chemotherapy
  • Zantac (ranitidine) for heartburn, Zyrtec (cetirizine) for allergies, and Zyprexa (olanzapine) for mental conditions
  • Celebrex (celecoxib) for arthritis and Celexa (citalopram) for depression.

For more information on the FDA and what they are doing click on this link http://www.fda.gov/

The bottom line on medical errors is activist patients.  Don’t sit by quietly when you perceive something to be wrong with your care or the care of someone near and dear to you.  Speak up, tell someone about your concerns.  Every city and state has some sort of health department so if you see something wrong speak up and tell the appropriate authority starting with the hospital.

Most importantly, though, be aggressive and knowledgeable about your own health care.  Don’t be afraid to ask for second opinions, to question physicians, nurses and other practitioners.  Force your health care provider to speak to you in plain English and if you don’t understand ask for clarification.  Hospital personnel work for you so they have a responsibility to respond to your concerns in as thorough and clear a manner as possible. The only way hospitals will really change for the better is for citizens, patients like you and me to speak up and let them know we know.

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bob half of bob and jay photoBob 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.

Bob’s NewHeart — The Impossible Dream


heart transplant cartoon

“Some men see things as they are and say why.  

I dream things that never were and say, why not”

George Bernard Shaw

This is post number 200 in the Bob’s Newheart Series of blogs on organ donation/transplantation and related issues

On February 17, 2014 I will turn 75.  It is an incredible feat for someone who abused his body as badly as I did.  By my count I have been dead three times. Once from sudden cardiac arrest, once during surgery in a hospital and I suppose once when they took my heart out to give me a new one (maybe that one doesn’t count).  I have to believe that I am only alive today because I was given a mission to do everything in my power to help others who face critical and/or life threatening illnesses.  The social media offer me that opportunity and I have gladly accepted it.

Before I launch into my story I think it is important to point out two factors that may have contributed to my condition but cannot be directly or medically linked to it. First, for 37 years from 1954 until 1991 I was a heavy smoker.  Some days I went through as many as four packs of cigarettes.  There are 20 in a package.  I quit smoking in 1991 because of the onset of Chronic Obstructive Pulmonary Disease (COPD)  and after watching my father die of the same disease in January of that year.  It took many tries, perhaps dozens but finally with the help of nicotine gum I kicked the habit.

I am also a recovering alcoholic.  I was a very heavy drinker for many years.  I won’t go into detail here but finally on July 17 of 1982 I checked myself into treatment at an in-patient center in St. Paul, Minnesota.  I have not had a drink since. While there is no direct medical evidence to tie my tobacco and alcohol use to my heart condition I have no doubt that they were great contributors.  You cannot consume all the chemicals contained in cigarette smoke and the hundreds of gallons of alcohol I drank and not cause damage.  I am quite frankly amazed that I lived long enough to get a heart transplant.

It took 12 years from the time I was diagnosed with Cardiomyopathy (heart failure) until I was listed for and got a heart transplant. When I started the Facebook group Organ Transplant Initiative in 2007 I wrote this mission statement:

The mission of Organ Transplant Initiative is to work to ensure than anyone who needs an organ/tissue transplant can get one. 

Some say that’s an impossible dream.  I refuse to accept that.

Bob Aronson

My Story

St. Paul, Minnesota — it is 5 PM on a Friday in mid-July 1995.  I was having a very difficult time breathing all day but chalked it up to my life long battle with asthma.  I removed my albuterol rescue inhaler from my shirt pocket and took two puffs inhaling deeply and holding my breath for a few seconds to give the drug time to work.  It didn’t. I tried again, it still didn’t work so I thought that either the medicine was old or the inhaler just wasn’t working properly.  My breathing was not only labored it was sometimes audible.

IGIF shot bob by TV was the founder; owner and CEO of the Aronson Partnership, Inc. a highly specialized communication consulting firm that helped executives communicate their messages in crises, media interviews, testimony and presentations.  It was going to be a long day because my last coaching session of the day would begin at 6 PM and end around 9. My staff left at 5 so I would be there alone with my client. Being a consultant doesn’t require a lot of physical activity so I thought I could make it through the evening and then use my nebulizer when I got home.  A nebulizer provides for a longer more effective dose of albuterol, the asthma fighting drug.

At 6 o’clock my client arrived.  She was a well-known professional spokesperson jojo cartoon flyerfor a syndicated home improvement TV show and had hired me to help refine her on camera skills.  My studio was equipped like a TV studio with lights, cameras, microphones TV monitors — everything necessary to simulate the real thing. As we worked I stayed seated, unusual for me because I am usually an energetic person who moves around the room to keep my client engaged.  I knew, though, that if I got up the session would be over because my breathing was becoming more labored.  I struggled through three hours and finally my client left pleased with the session. parking ramp 3

Normally I would straighten up the studio before I left.  Not this night.  I turned out the lights, grabbed my briefcase, locked the door and took the elevator down six floors to the parking ramp. I had a breakfast meeting with a client that day and arrived at the office late.  The ramp was almost full so I had to park at the far end which was at least a block from the door of the building.

When I exited the elevator and entered the ramp I was in a very bad way.  I was struggling for every breath and my legs felt like rubber. Repeatedly I tried to use the inhaler but to no avail.  It gave me no relief…very unusual.  Stumbling my way to the car through the deserted ramp I was stopping about every ten feet to lean on a post, another car, anything that would support my weight for just a few seconds.  Had anyone else been in that ramp that would have sworn I was drunk. I was so starved for oxygen that my vision was getting blurred.  I could see the outline of my car perhaps 50 yards away but it might as well have been on the moon.  I was beginning to believe I could not make it there and panic began to set in.  Panic made my breathing even more labored. Half way through the ramp my legs buckled under me, I dropped the man on all fours 2briefcase and fell to my hands and knees. I remember thinking that I had not had an asthma attack this severe since I was a child.  I looked around — there was no one in the ramp and very few cars.

On all fours gasping for air I somehow managed to collect myself, pick up my bag and stand on wobbly legs.  Leaning on cars helped but there were few of them in the ramp, I kind of lurched from car to post to car. I don’t know how I did it, but I made it to the end of the ramp and my car — falling twice more on the way there.  The knees on my suit pants were a mess, one was torn and my hands were dirty, gritty and bloody from breaking my fall palms down on the concrete floor, somehow I had cut myself and I didn’t care..  My glasses were streaked with perspiration and more opaque than transparent. And…I was cold, bone chilling cold. Perspiration had soaked my clothing and chilled me even though it was a summer night.

I opened the door, sat, started the engine and despite being cold turned on the air condition thinking the cold air in my face might help.  Soaked with sweat, grimy and a  little bloody from three falls in the ramp I was still struggling to breathe so I loosened my necktie and just sat there trying to calm my nerves and catch my breath.  Because I was no longer exerting myself my breathing slowed a tiny bit but enough for me to believe I could make it.  The cold air from the AC unit felt good on my face and I sucked in as much as I could but it wasn’t nearly enough.  My heart was beating so fast it felt like it was trying to pound its way through my ribs to find freedom outside of my chest.

That’s when I remembered I had just purchased my first cellphone (they were pretty clunky by today’s standards and did nothing but make calls,)  I took it fromcell phone from last century my inside coat pocked but instead of dialing 911 I called home. When my wife answered I breathlessly told her I was having a serious asthma attack that I would pick her up and she could drive me to an ER.  In retrospect a dumb plan, but I really thought it was asthma.  Not once did I even consider that it could be something else so I knew I could make it.

That’s when I made my second stupid decision.  In my oxygen starved brain I determined that going to a nearby major medical center would be a wrong move because their ER was always very busy and the wait would be a long one.   Emergency roomInstead, I asked my wife to drive me to a small rural hospital in Hastings, She objected saying I’d be better off at United in St. Paul but I countered with the fact that the Hastings ER would not be jammed like a bigger hospital. I was right. There was not a single patient there when we arrived.  She was right, too, Hastings was the wrong place for me.

By the time we got to the Hastings ER I was turning blue and almost unable to breathe yet somehow summoned up the strength to walk in and make it to the admitting desk where I struggled to tell the nurse on duty, “I’m having a very bad asthma attack, my inhaler is not working.” I think I fell into the chair next to her. The nurse quickly took my vitals, listened to my heart and said, “I don’t think it is asthma,” and called for a crash cart.  There was a scramble as I was placed on a gurney, rushed to a room, wired, had an IV placed in my arm and was given a tablet of nitroglycerin to hold under my tongue. ECG leads were taped to my chest, someone shot something into the IV, and a Doctor appeared, giving orders.  I was nearly unconscious and confused not knowing what was happening I just kept thinking, “What’s wrong with these people, all they have to do is give me a shot of adrenalin and I’ll be fine.”  The nitro made me sick to my stomach but my breathing was easing. United hospital st. paul

Then the Doctor spoke up, “Mr. Aronson, it’s not asthma, it is your heart and we can’t handle you here.   We’re sending you by ambulance to United Hospital in St. Paul (United was a major heart center and the hospital I chose not to go to in the first place). By now I was stabilized and almost breathing normally but the ambulance wasted no time and made the 20 or so miles from Hastings to St. Paul, Minnesota in about fifteen minutes with the aid of the siren and flashing lights.  I told the attendants I felt fine and they should just take me home but they were having none of it and brought me straight to the hospital where we were met by a medical team that rushed me to cardiac intensive care.    That’s when the excitement, the drugs and exhaustion caught up with me and I lost consciousness.

When I awakened I was surrounded by people who wereecho 2 setting up some equipment.  “We are going to do an echogram, Mr. Aronson, and that will tell us how well your heart is functioning so please lie on your left side.”  I did and the operator of the machine got on my right side, reached over with what looked like one of those mortar things that pharmacists use and placed it on my chest.  It had some kind of cold wet clear goo on it and as he moved it over my chest I could hear my heart on the monitor going “squish boom boom, squish boom boom.”  echo screen 2The monitor was in front of me so I could see what the operator saw. The difference was that he knew what he was seeing, it meant nothing to me.  Again, though, exhaustion set in.  Each of my eyelids felt as though they weighed twenty pounds.  I could not stay awake and drifted off only to awaken to the sound of the echo machine being wheeled out of the room about twenty minutes later.  As the operators were leaving I thought I caught a glimpse of my wife and some family members but again fell into a very deep sleep.

It was morning when I began my return to the conscious world and for a while I was confused, I didn’t know where I was until I heard the voice of my daughter Hank.  “Hi daddy, we are all here with you.”  For just a minute I didn’t know where “here” was or why they were all there.  Then I heard the beeping of a monitor, saw the IV drip, felt the oxygen tubes in my nose and saw the nurse reading my blood pressure.  I got the idea that the situation was not a good one.  Families don’t gather first thing in the morning in a hospital room unless you are in dire straits.

I looked around and saw my wife, two daughters and their husbands, my son and his wife and several medical people.  My usually jovial family looked very somber. “All of this, I thought, for asthma?” forgetting about the echogram and what the doctor in Hastings had said just a few hours earlier.  Just then a very distinguished gentleman walked in.  Dressed like a model from Gentleman’s Quarterly, he was relatively young but had white hair and spoke softly but firmly. “Mr. Aronson,” he said. “My name is Dr. Thomas Johnson and I’m a cardiologist.  You have a very serious heart problem.  It’s called cardiomyopathy which means your heart muscle is failing and you may need a heart transplant.”

“Boy,” I thought, “that’s laying it on the line.”  I felt as though I had just had a nuclear weapon detonated in my gut.  But strong men don’t show weakness in front of their family.  I noticed that my youngest daughter was crying and everyone else was silent.  “Ok, I said, if that’s what it takes let’s do it.”  I had a passing acquaintance with organ transplants but really had no idea how complex the process was or how difficult it was to get a heart, plus I had to put on a brave face for my family.

While my mind was racing Dr. Johnson began to explain my condition.  His style was firm but calming and compassionate.  He explained that while they would do further testing he was certain that I suffered from cardiomyopathy which is a very fancy term for heart failure.  He pointed out that I would likely be able to get out of the hospital in a few days and go back to work but that my energy level would not be the same. He also said that while I would likely not need a heart transplant right away it was inevitable that I would need one at some point.  He said he had scheduled a stress test for later that afternoon.  I thought the whole situation was a stress test and that this must be a bad dream. Someone brought in a tray of something that resembled food but I wasn’t hungry just very, very tired and I drifted off again after telling my family to go home and come back later. It was obvious then that I was in no immediate danger at least not anymore. cardiac stress test

“Mr. Aronson,” the voice said, “Mr. Aronson, it’s time for your stress test.”  Again feeling dazed and almost hung over I awakened and was helped up so I could sit on the side of the bed.  I was given a fresh gown and robe to put on and helped into a wheelchair.  A friendly and talkative male nurse pushed me through a series of hallways to the stress test room.  It was tiny.  There was room only for a treadmill a table with a lot of electronic gear on it and a chair.  Dr. Johnson was already there and I was wired again with several of those sticky leads that rip the hair off your body when they remove them. I had no idea what a stress test was other than getting on a treadmill.  I found out quickly enough that it involved walking on the treadmill as the operator slowly increased the speed and the grade.  Dr. Johnson was there carefully watching me and the monitor.  The speed and grade changed every couple of minutes and by the time I reached 8 minutes I could go no longer, my legs were rubber, my lungs were about to explode and my heart felt like it was going to hammer its way out of my body and then out of the room. I did not know that one could get so thoroughly exhausted in 8 minutes.

The stress test was just one of a series of tests, labs and other evaluations that confirmed the initial diagnosis of dilated cardiomyopathy, cause unknown.  My heart was growing larger because it was not pumping enough blood out.  Dr. Johnson explained that my Ejection Fraction (EF) was between 20 and 25.  Here’s what that means.  Normally the heart pumps out about 60% of the blood it contains.  That’s the EF. My heart was only pumping out 25% so in order to contain the excess blood the heart had to grow but there’s a limit to the growth and to how long your other organs can survive when they are not getting enough blood. In a few days I was released from the hospital with a boatload of medication and strict diet orders. Sodium intake was limited to 1800 milligrams a day, liquid consumption was capped, I was told to lose weight (at 6’4” I weighed about 240 lbs. and have a large frame so I didn’t appear to be overweight) and exercise, lots of exercise.

I took it all very seriously and followed the diet and all the other restrictions and suggestions very carefully.  I dropped about 40 lbs. and with daily exercise got in the best condition of my life.  Each morning I would get up and do 75 stomach crunches, 100 pushups, walk the treadmill for a half hour, do about 40 curls with 20 lb. weights in each hand and then go to work. Actually I felt better than I had felt in a long time but I tired easily.  By 10 AM I would get sleepy but I’m a Type A personality and push myself so I kept up the same pace I had always been on. I was a consultant and traveled a great deal. At least once or twice a week I was running through airports to catch a plane or make a connection somewhere and for a while I did pretty well but I could feel myself slowing down.  I saw Dr. Johnson regularly and he kept adjusting my meds and re-testing me but it was not yet time to be listed for a heart transplant, I was not sick enough to qualify.

Then in 1996 we got the news that my wife, Avis, had lung cancer.  They found it in her legs which meant it had metastasized or had already spread from her lungs to other parts of her body.  The news was a devastating blow for the entire family and I simply forgot about my condition as I took her to the series of chemo and then radiation appointments.  The side effects were sheer hell and even expensive drugs like Zofran for nausea didn’t always work.  The treatments took place over several months and took a heavy toll on her.  Cancer is ugly but so are the treatments. 

Slowly, though, the combination of therapies started to have a positive effect.  Her hair grew back, the pain was gone and there was no sign of the cancer.  We all thought that maybe she had beaten it.

We were feeling good about Ave’s progress and I was still following all the instructions that had been given to me but my health was deteriorating, I could feel it.   My ejection fraction was about 20 and I was tired all the time.

Ave did quite well for about a year and then in October of 1998 she started complaining of pain again and tests made real our worst fears.  The cancer was back but far worse than it had been originally and there was no longer any treatment that would offer hope.  The disease had invaded not only her lungs but also her colon, legs and brain.  She entered United Hospital in St. Paul in Mid-October never to return home.  She passed away with her family around her on November 28 of 1998.

After the funeral I took time off to try to figure out my life.  35 years of marriage does not prepare you for living alone.  It was awful.  Staying home only made things worse.  My way of dealing with the loss was work.  I spent more time than ever at the office and on the road.  I traveled even more than I had in the past.

Finally, exhausted, I decided I quirinale interiorneeded a rest away from phones, clients, employees and everyone else.  In May of 1999 I  booked a flight to Rome, Italy to see my friends Ron and Carla Marinelli.  They arranged for me to stay at the lovely old Hotel Quiranale on the via Nacionale.  The rest, the food, the surroundings did wonders for my mental health. Each morning I would arise, go to the breakfast restaurant and quirnale breakfasthave a cappuccino, some biscotti, melon and a little bit of prosciutto (Italian ham and definitely not on my heart diet).  After a couple of days the waiter didn’t ‘even ask me what I wanted, he saw me come in said, “Buon Giorno” and brought what I just described.

The visit with Ron and Carla was magnificent.  Ron was the man who hired me for my first job as a radio announcer in 1960 in Hibbing, Minnesota.  He later married Carla, an Italian national, and moved to Rome where he taught English as a second language to Italian military officers. One day Ron and Carla decided we should take a trip.  It was a lovely surprise, too.  They sassoferrato, Italywould take me to Sassoferrato to the North East of Rome in the mountains of the province of Ancona about half way to the Adriatic Sea.

The trip was significant because Sassoferrato is the town in which my grandmother and grandfather on my mother’s side were born and from which the emigrated in the early 20th century.  I won’t go into detail but to stand near the sulfur mine where my grandfather worked and to walk the roads where my grandmother delivered the mail stirred my emotions in a special way.  But all of this is another story for another time.

I left Italy feeling good and arrived in the U.S.  ready for work and threw myself into it like never before almost forgetting that I had a very serious heart disease. It was about then that I met Robin Diffie.  She lived in Jacksonville, Florida a city I visited often because the Mayo Clinic there was one of my clients.  We hit it off immediately and in August of 2000 were married in my home in Eagan, Minnesota, a St. Paul suburb.

It had now been five years since my diagnosis and while my ejection fraction had not changed I was noticeably tired more often. byerlysAbout a year later I was driving to visit a client that had an office in a shopping center across town and got hungry so I stopped at a supermarket and got a deli sandwich that came close to my dietary requirements.  I sat in the car and ate it then, with seat belt off drove around the corner to my client’s office.

As I entered the parking lot I slowed to about 5 or 6 miles an hour to pull into a business center parking lotparking place when suddenly everything turned the brightest white I’ve ever seen…cars in the lot next to me danced in the light and I felt really good but sleepy.  I know not how much later it was that I awakened but I was slumped over the steering wheel and the car was up against a tree.  I awoke with a terrible headache and my balance and speech were not quite right.  Somehow I made my way into the client’s office and told them I had fainted.  The client was a medical company and they told me to stay seated and called Robin who came to get me and took me to the hospital.

At the emergency room a cardiologist examined me and said, “You need to have a defibrillator implanted, it appears as though you may have suffered sudden cardiac arrest and running into that tree may have jarred you enough to save you, it was a good thing you weren’t wearing your seat belt.

I said, “Ok doc let me check my calendar and I’ll see when we can schedule the defibrillator.”

He chuckled, “No,” he said, “We need to do that right now, you could have another attack any time and the defibrillator could save your life.” defib icdNeedless to say, we were in surgery within the hour and the Medtronic Implantable Cardioverter Defibrillator (ICD) was implanted.  It was a little smaller than a hockey puck and was just to the right of my left shoulder.  You could hardly tell there was anything there.  The bad news was that my heart condition was changing and not for the better.  This new development was not good.  And..if in fact I did have cardiac arrest when I hit that tree I was extremely fortunate because only about 5 percent of cardiac arrest victims survive.  It is unpredictable and there is really no way to diagnose it.  About 350,000 people die every year due to sudden cardiac arrest.  Those who survive usually do so because of a defibrillator.  Either the implanted variety or the kind you find hanging on walls in public buildings.

By 2003, eight years after my diagnosis I was on a drug called Amiodarone which is used to correct abnormal heart rhythms. The medication is prescribed only for people with serious heart problems. It is a powerful and effective drug but also one with many side effects some of which are potentially fatal.  One of the side effects and the one that most affected me was weight gain because Amiodarone can have a very negative affect on the Thyroid gland.  For me the result was ballooning up to nearly 250 pounds despite my making every conceivable effort to stop it.   For the first time in my life I was buying pants with a 40 inch waste and had developed a belly that hung over my belt.  I took to wearing suspenders to keep my pants up.   I didn’t like the way I looked and I couldn’t do a thing about it.

It was summer and I had just showered and shaved and was getting dressed for work when I felt as though a mule or a horse had kicked me in the chest.  The impact sent me to my knees in the bathroom and at first I didn’t know what happened. Slowly it occurred to me that my defibrillator had just gone off.  That means the rhythm of my heart was also off so I called 911 and explained what happened.  The voice on the other end said, “So what would you like us to do?”

I responded, “I don’t know, I thought you could tell me what to do.”

She said, “Often patients do nothing and sometimes we take them to the hospital.  Would you like an ambulance?”

“I guess,” I said.  Not really sure what to do but still unsteady on my feet as a result of the shock. The ambulance was there in a flash and I walked out the front door of our town home.

Tambulanche attendants made me lie down on the gurney and carted me into the back of the big Red and White vehicle where they wired me with the electrocardiogram and started an I V.  I heard the paramedic on the radio saying something about atrial fibrillation and they turned on the lights and siren.  Déjà vu all over again as we raced for United Hospital in St. Paul.

Robin had been out when I was shocked by the ICD but I called her immediately and she met us at United. More tests and finally the same Doc that placed the ICD in my chest came in to say that I needed a new and different one.  Mine had two leads and they wanted to put one in that had three leads but that meant the procedure was a little trickier because one lead had to go behind my heart.  He said they would do the procedure the next day but that he was going to Greece on a vacation and one of his highly skilled colleagues would do it.

They wheeled me away in the morning for a routine procedure that almost killed me.  In order to place the ICD and connect it they have to stop your heart for a while and then start it again.  Well, they had trouble with the third lead; they couldn’t get it in no matter what they tried so they gave up on it and decided to try again on another day.  Now they had to restart my heart — again and again they tried the paddles but it wasn’t until 6th or 7th attempt that the damaged organ began to beat.  Now there was a new concern because a long time had elapsed and there was fear of brain damage.

Robin tells me that when I awakened I was babbling.  What I was saying made no sense and I stayed that way for a while.  The hospital sent a neurologist in to see if I had suffered brain damage in the aborted attempt to place the third lead of the ICD.  By the time he got there I was doing a little better so the questioning began.  Who are you?  Where were you born? What month is it?  Robin said she thought I was doing pretty well.  Then the Doctor asked who the President of the United States was and I said, “George W. Bush the SOB.”  I don’t remember saying that but Robin said she knew then I was OK. That episode, though, was not the end of the saga.

The third lead still needed to be connected and I couldn’t leave the hospital until it was.  They said I could rest for a day or two and the would try again.  They did in the following week and this time with a different doctor but the same result.  They could not attach the third lead and again had trouble reviving me. I told the medical team that there would be no more attempts until my Dr. returned from his vacation and no one argued the point.  Finally when he returned he was amazed to find me still in the hospital.  It had been almost three weeks.  The next day we went back to surgery and this time at the hands of the master it worked flawlessly and I was released.

All of this had taken a toll. I was still working as a consultant but had to change my style.  When I trained or coached people for various communication situations or when I made a presentation on communication I was animated, energetic, walked around a lot, invaded people’s space and did a good job of getting and keeping people’s attention.  I could no longer do that.  Moving about left me exhausted. For a while I tried to walk around, sit a little and then walk around again but I finally had to give in and do my presentations sitting and I always explained to my audience why I was sitting.

mayo rochesterFor about 25 years the Mayo Clinic in Rochester, Minnesota had been my client, at least once a week I traveled from the twin cities to Rochester to work with Mayo physicians or executives and when I did I’d stay at a Hotel about a block from the studio they had set up for me.  I found that I could no longer walk the block without stopping several times to rest and I knew the end of my career was near.  That’s when Robin and I decided to move back to her hometown of Jacksonville because there was a Mayo Clinic there also and they had an excellent record of getting organs. Reluctantly I told my long-time client Mayo that I had to retire, that I could no longer take the physical strain of doing the work and I recommended another consultant.

Then came the task of selling our Eagan, Minnesota town home.  It was 2006 just the beginning of the real estate market bubble burst.  We purchased a home in Jacksonville thinking our very nice town home would sell quickly. It didn’t.  It took ten months to sell it after we had dropped the price several times.  Needless to say we took a bath on that sale.

The next step was to go through the transplant evaluation process at mayo jacksonvilleMayo in Jacksonville..  There was a battery of tests over a period of several days but the outcome was never in doubt. By now my ejection fraction was around 10 I could not walk from our family room to the bathroom which is about 25 feet without stopping to rest.  It was clear to me and to my docs that I was in end stage cardiomyopathy.  I was dying and there was nothing that could be done short of a heart transplant. “Ain’t gonna happen,” I told myself. “I am 68 years old and not hospitalized, there’s no way I get a heart.  Certainly if there is one available it will go to a much younger and sicker person.”  I had pretty much given up hope.  The Mayo clinic hadn’t and neither had Robin. Dr. Hosenpud, my transplant cardiologist at Mayo took my case before the transplant committee and I was approved for listing.  I gave it no further thought.  Although I was convinced that I would not get a heart I said nothing to Robin or my family.  I’ve always prided myself on being very logical and the logic said I would not get a heart.  Well, Mr. Spock, the logic was wrong.

It was thirteen days after being listed when the phone rang.  Here’s the play by play. Tuesday August 21, 2007 noon.  My home phone rings, “Hello.” “May I speak with Robert Aronson please?”

“Speaking.”

“This is Dr. Hosenpud from the Mayo Clinic in Jacksonville.  We may have a heart for you.”

Silence, confusion, “Did you say you may have a heart for me?”

“Yes,” pack a bag with some essentials and come to the clinic in the next couple of hours, I’ll see you then.” Click.

I hollered for Robin who was in the next room.  “I struggled to hold back tears when I said, “Dr. Hosenpud called, and they may have a heart for me.” I have always taken pride in being able to be cool under fire.  I don’t panic, I logically work things out.  Not today.  I think I packed a tennis shoe a sandal a toothbrush a comb and some mouthwash….nothing that made any sense.

I thought I was supposed to rush to the hospital even though Dr. Hosenpud did not say I should.  So we raced to the car and made record time. I had visions of pandemonium when I got there.  I thought I would say, “I’m here for a heart transplant” and all hell would break loose.  I thought there would be people running around, bringing out a gurney for me…tearing my shirt off and rushing me into surgery…Hah! None of that happened.

Here’s reality. mayo receptionMe at reception desk in hospital, “Hi I’m Bob Aronson and Dr. Hosenpud just called to tell me there might be a heart for me and I’m here for a transplant……”  I fired words out like a machine gun my eyes darting here and there and everywhere, my voice shaking.
Receptionist.  “Your name again?” I told her. Click, click, click (computer keys)

“Ok here you are Mr. Aronson.  Have a seat and someone will be out to get you in a little while.”

We sat.  There was no pandemonium.  There was no movement of any kind.  No one seemed to care that the all-important Bob Aronson was here for a heart transplant We waited for maybe a half hour when finally I was called to go back to a room to answer some questions, change into a hospital gown and begin the preparation process.  I was still amazed that no one was excited about what was happening, they were all so calm and just went about doing their jobs.  I wanted pandemonium, I deserved pandemonium, the situation called for pandemonium…but it never happened.  I guess I’ve seen too many movies.

Robin accompanied me to what I called the “Staging” area, that’s where everyone buzzes around you each with a special job, all of them pleasant and very formal.  Mayo has it so ingrained in their system to refer to people by their title (Mr.) I quit trying to get them to call me Bob for fear they might choke.

With the IV line in and working we talked for a while with the people in the room and finally someone said, “It’s time.”  A syringe appeared out of thin air and the needle was inserted into my IV, “Just a little something to relax you,” the voice said and I was in la la land in a split second.

I was tied tightly and they were coming to interrogate me again.  They thought they were being quiet but I could hear them coming, “No, no please not anymore, please don’t cut me up for parts anymore,” I begged as they tugged at my arm.

“Mr. Aronson, are you awake, we are doctors and we are here to remove your dressing,” was what I heard when I awakened from my dream where I was being held captive while my organs were removed. In my haze I vaguely remember some doctors coming to intensive care and ripping off the dressing that covered my chest.  It sounded to me like they had torn a 50 foot sheet of canvas in half.  I felt nothing but I’ll never forget that sound then.

“Are you in any pain Mr. Aronson if so give me a number between 0 and 10…ten being the worst.”  I must have picked the right number because I was out again. robin

While all this was happening Robin and her sister April were sitting in the surgical waiting room.  april diffie guittar croppedIt was August 21st which is also April’s birthday and instead of spending it celebrating she chose to sit with Robin praying for my recovery.  Robin and April are people who gain great satisfaction from giving and in helping others.  These sisters, like their parents are generous and considerate to a fault. T

The next time I awoke I was more alert and Robin was holding my hand and saying, “It’s OK, you are fine and you have a new heart.

I felt a great sense of relief, like a huge weight had been lifted from my shoulders and I was thirsty, so incredibly thirsty.  I asked for water and a nurse brought me ice chips. I sucked on those for a while and then fell asleep again.  I don’t know what time it was when I once again blinked myself into being awake but Robin was gone and it was just me, a bunch of beeping, flashing machines and a nurse.

“Water,” I feebly said.

“Not yet,” she said with what sounded like attitude. I was so dry my lips were stuck together, my tongue felt a foot thick, my throat was parched and I was almost without a voice because of the tube that had been down my throat.

“Please,” I’m so thirsty.

glass of ice chipsI’m sorry sir you can only have ice chips once an hour.”

“It’s time for once” I said may I please have the ice chips now?”

“In ten minutes,” she said.  At that moment that nurse became the “Ice Nazi.”  I remember watching the clock waiting for the next hour so I could get more ice chips but despite my impassioned pleas, appeals to fairness and kindness and outright sycophantic flattery she never budged a second.  I got my ice chips exactly on the hour not a split second sooner or later and….I lived.

Once released from the hospital I entered cardiac rehab where I met a strange mixture of people.  I quickly found that while all of us had transplants in common some were more committed than others.  One man whom I shall never understand just refused to comply.  He wouldn’t follow the diet or the exercise regimen.  He was very nice but just wouldn’t comply despite being alternately cajoled and chewed out by both physicians and nurses.  I don’t know what happened to him but his survival chances weren’t good. Conversely there were some there who so desperately wanted to live they would have doubled their effort if asked.  I was one of the very oldest people in the rehab program at the time and decided that the older you get the more you realize the value of life and the harder you are willing to work to stay alive.

Lee AaseI hadn’t been out of rehab for but a few weeks when a friend and former Mayo Client Lee Aase called me.  Lee is the social media guru for the Mayo Clinic (the whole system).  He is a 6’5” blond Scandinavian with a winning smile and attitude.  Lee could gain the confidence of almost anyone in a matter of seconds based on personality alone. And…he is one of the brightest communications professionals I know.

Because of my age my recovery from the heart transplant was slow. My body just didn’t want to regain its strength but I could still think and I could still type and the internet kept me connected to the goings-on in the world.  When Lee called me at the end of October 2007 to suggest I get involved in the social media on behalf of organ donation I had no idea what he was talking about.  When he mentioned Facebook and WordPress I had not heard of either of them.  I was somewhat familiar with blogs but had never written one and had read only a few. What rang my bell was when Lee said I could use these forums to promote organ donation.  I knew I wanted to try to pay back the gift of life that was given to me by a stranger but I had no idea how I would do it.  Lee just opened that door.  He took a great deal of time on several occasions on the phone to “Train” me in the use of social media.  He helped me set up the Facebook group and my WordPress blog and it was Lee Aase who came up with the name, “Bob’s Newheart.”  And so it was on November 3rd 2007 that Organ Transplant Initiative and Bob’s Newheart were born.

It was also on or near that date that I began to suffer extreme pain for reasons unknown.  Some of it may have been the result of the position the surgeons placed my left arm so they would have better access to my heart.  Whatever the cause the pain was extreme and it was spreading and debilitating. Both shoulders were affected as was my neck and lower back.  Sometimes the pain was so great I sat in my recliner and cried.  Even powerful painkillers only dulled it..it never went away.  Specialists gave me injections in both shoulders which helped.  Later it was determined I had torn rotator cuffs in both shoulders but not how I got them.  The pain seemed endless and in fact lasted for over a year.  Oxycodone helped but did not kill the pain completely. In the meantime I would get up early in the morning and take a pain pill so I could tend to the Facebook group and the blog.  It was only early in the morning that I could produce anything that made sense.

As the day went on the pain grew and I was unable to think never mind write anything worthwhile.  I could not drive because of the pain and often because of the pain pills I would forget to set up my meds for the week. The narcotics, I believe, also caused me to forget to eat so not only was I not following the suggested diet I wasn’t following any diet Robin had her hands full.  She had two businesses that she started and was running out of our house and she had me to take care of.  She drove me to medical appointments, took care of my needs at home, reminded me to set up meds and renew prescriptions and made sure I ate, even though I didn’t want to.

The biggest challenge for both of us was that I was becoming increasingly more depressed.  Because of the pain I slept in my recliner in the family room at the depreessionback of the house.  The comfortable leather chair was in a corner of the room that was naturally dark – a great place to be depressed.  When I awakened each morning I would leave the lights off …sometimes I would shower, often not.  I didn’t care about anything.  I would sit for hours with the TV on but never look at it.  It created flickering shadows in the room but no light.  Usually I had the volume turned down so it was just white noise.  I was crabby, uncommunicative, looked like a homeless, deranged old man and didn’t care and yet I continued with Facebook and WordPress for at least an hour each morning.  It was the only thing I felt I had an obligation to do each day.

One day, though, something clicked, I think it was guilt. Somewhere in the dark reaches of my mind I knew I was being unfair to Robin and I loved her too much to put our relationship at further risk so I called Mayo and asked for psychiatric help.  It was almost two years after my transplant before we found the right combination of medications and then one day even though the sun didn’t come up (it was hidden by clouds)…it did.  I felt something stir — a twinge of optimism of ambition a feeling that life might be worth living after all –.and each succeeding day got a little bit better. The pain diminished, I began sleeping in bed again and best of all began looking toward the future and participating in family life. The anti-depressants I was taking changed my mood completely.  I started doing the grocery shopping, some light housework and best of all Robin had asked me to make some fixtures for her art show booth and I was doing woodwork…one of my great loves.

As time when on my assignments in the woodworking shop became more interesting and challenging.  Whenever Robin needed a shelf, a display case, an ear ring display frame or box or lazy susan I would make it and I found it most enjoyable.  Then we decided to try Jewelry boxes and I found a new artistic niche for myself.  Soon I found myself busier than I ever imagined I would or even could be.  I was up and around and using both my head and my hands to be productive and in the process was helping Robin.  After all she had done for me it was the least I could to help her and it felt good to do it.

So here we are at 2013 and this is my 200th blog. I’ve written and posted on subjects ranging from anorexia to Xenotransplantation.  Our blogs have become internationally famous and respected.  Bobs Newheart is a leading source for transplant and donor information in the world.  We are now averaging nearly 4,000 readers a month. Organ Transplant Initiative (OTI) recently got its 3000th member and we grow larger every day … no small achievement when there are scores of transplant groups on the internet.  Size is important if we are to be an effective advocacy group.  Decision makers listen when large groups of people speak up.  The bigger we get, the more the people who make life and death decisions will listen.

I am not a particularly religious person but I am positive that my life was saved so I could help to save or at least comfort those who languish on the transplant list.  I have committed to my unknown donor and to all who join OTI and read my blogs that I will do whatever I can to get more organ donors, promote and support further scientific and technological research into alternatives to organ donation and to provide information that people need to make good sound medical decisions.  I will not quit until this new heart I have stops beating and then I’m hoping others will pick up what I started and make it even better.

That’s my story.  It isn’t much different I’m sure from thousands of other transplant recipients who underwent some tough times but overcame them.  We all have a thousand thank you notes to send primarily to our donors and donor families but also to medical team that retrieved then implanted a new heart or other organ, the nurses and doctors who took care of us In the hospital, for continuing care and of course our caregivers…what on earth would we ever do without them?

In my case my thanks go to my unknown donor and his family, my wonderful loving wife Robin, my  kids and Robin’s, our grandchildren and great grandchildren my brother and sister and cousins, the Diffie family, Mayo Doctors Hosenpud, Yip and Patel and  coordinator Stephanie Orum and all my Facebook and WordPress friends.

The mission of Organ Transplant Initiative is to work to ensure than anyone who needs an organ/tissue transplant can get one.  Some say that’s an impossible dream.  I say nothing is impossible.

Bob Aronson

The song Impossible Dream from Man of LaMancha seems fitting in many ways but more than anything else it speaks directly to the OTI Mission.

To dream … the impossible dream …

To fight … the unbeatable foe …

To bear … with unbearable sorrow …

To run … where the brave dare not go …

To right … the unrightable wrong …

To love … pure and chaste from afar …

To try … when your arms are too weary …

To reach … the unreachable star …

This is my quest, to follow that star …

No matter how hopeless, no matter how far …

To fight for the right, without question or pause …

To be willing to march into Hell, for a Heavenly cause …

This blog is dedicated to my unknown donor and to all those who are awaiting transplants all over the world.

Between Your Heart and Mine


The song, “Between Your Heart and Mine” was written and produced by Gregory Todd a Nashville,Tennessee country musician.  He wrote the song as a tribute to a friend who had a transplant.  I wrote to Mr. Todd yesterday to let him know about this blog and when he responded he said, among other things, “Incidentally, my friend Alan, the inspiration behind the song, has been doing incredibly well after 20 months of carrying the heart of his donor. He has recently been cleared to take his first flight- and it’s to go see his 10 year old daughter perform in the Cheerleading Championships in Orlando. How great is that??”  The song shows up in many places on the internet and you can hear more of Mr. Todd’s work by going to his website http://www.gregorytodd.com/Home_Page_DVPA.php

“Between Your Heart and Mine” is a touching song and the story that many of us who have had transplants have already lived.  Please take the time to listen to it…close your eyes, listen, remember and give thanks.  This Christmas is special for those who have had transplants and who are getting them right now, but there are thousands of others still waiting.  Please say a little prayer for them while you enjoy Mr. Todd’s wonderful song. You can click on the link above to listen to the song.  The lyrics are below.

Merry Christmas and happy holidays to everyone.

Between Your Heart and Mine

As the doctors took their places
I could see my kids and wife
Blowing kisses for good luck, not goodbye

Seven months with just one question
Then you answered with your life
You had one foot crossing heaven
I was one small breath behind

But you saved me when you gave me
The miracle I needed to survive
Now we both can go on
Between your heart and mine

Between your heart and mine
I’ll live a life worth living
I’ll take what I’ve been given
And pass it down the line

I’ll cherish every moment
Then breathe it in and hold in for the rest of my life
Between your heart and mine

I heard what happened late that night
Drinker driving through the light
He drove your hopes and dreams right to the ground

Just seventeen, you went too soon
But on my life I swear to you
Each morning when I wake up, I’ll make sure you’re smiling down

Cause you saved me when you gave me
The miracle I needed now it’s beating deep inside
So we both can go on
Between your heart and mine

I’ve been praying for your family
Hoping one day comes around
When I can let them know their boy is safe and sound
Between your heart and mine

And that I’ll live a life worth living
I’ll take what I’ve been given and pass it down the line
I’ll cherish every moment
Then breathe it in and hold it for the rest of my life
I’ll keep this feeling for the rest of my life
Between your heart and mine

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.

The Future Of Organ Transplants — No Waiting!


Since the National Organ Transplant Act (NOTA) went into effect in 1984 we have had a shortage of transplantable organs and there doesn’t seem to be any way we will ever not have a shortage as long as we depend on altruistic donation of “natural” organs.
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There are two ways to end the transplantable organ shortage.  One is to prevent organ damage by living healthier lives and the other is to find the means to develop and provide artificial organs which can be mechanical, biological or a combination of the two.
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Popular Science  magazine has been around as long as I can remember and has always fascinated me with its reports on astonishing achievements in science and technology.  The information below comes from one of their issues.  Read these stories with the expectation that a future where there is no waiting for a transplant is possible.  If these reports are accurate the days of organ shortages could be numbered and we will be able to put a stop to the ever increasing number of people who die waiting for an organ transplant. .
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Video: The Doctors Who Made the No-Pulse Heart

              By Jeremiah Zagar                  Posted 02.29.2012 at 2:04 pm                  9
       

Heart Stop Beating is a three-minute documentary film about the no-pulse, continuous-flow artificial heart, which Dan Baum writes about in our Future of Medicine issue. It tells the story of Billy Cohn & Bud Frazier, two visionary doctors from the Texas Heart Institute, who in March of 2011 successfully replaced a dying man’s heart with the device they developed, proving that life was possible without a pulse or a heart beat.

Feature

No Pulse: How Doctors Reinvented The Human Heart

      This 10,000-rpm, no-pulse artificial heart doesn’t resemble an organic heart–and might be all the better for it
              By Dan Baum                  Posted 02.29.2012 at 12:13 pm                  37 Comments
       

Meeko the calf stood nuzzling a pile of hay. He didn’t seem to have much appetite, and he looked a little bored. Every now and then, he glanced up, as though wondering why so many people with clipboards were standing around watching him.

Fourteen hours earlier, I’d watched doctors lift Meeko’s heart from his body and place it, still beating, in a plastic dish. He looked no worse for the experience, whisking away a fly with his tail as he nibbled, demonstrably alive—though above his head, a monitor showed a flatlined pulse. I held a stethoscope to his warm, fragrant flank and heard, instead of the deep lub-dub of a heartbeat, what sounded like a dentist’s drill or the underwater whine of an outboard motor. Something was keeping Meeko alive, but it was nothing like a heart.

Japanese Researchers Create a Pituitary Gland From Scratch in the Lab

              By Clay Dillow                  Posted 11.10.2011 at 11:08 am                  10 Comments
       

The thing about growing working organs in the lab is that the whole enterprise is completely mind-blowing. Yet we just keep doing it, and so we keep blowing minds. The latest: a team of researchers at Japan’s RIKEN Center–the same group who earlier this year engineered a mouse retina that is the most complex tissue ever engineered–have now derived a working pituitary gland from mouse stem cells.

Feature

State of the Bionic Art: The Best Replacements for My Flimsy Human Parts

      In the event of some horrible accident, which bionic parts would I want replacing my own?
              By Dan Nosowitz                  Posted 08.23.2011 at 2:00 pm                  5 Comments
       

We cover biomedical science and engineering a lot, and sometimes I get to wondering: if I was rebuilding my own flimsy, flesh-based body–presumably because I’d had some ghastly dismembering, eviscerating accident–and replacing my limbs, joints, senses, and organs with the most futuristic, top-of-the-line bionics, what would I get? Would I want an artificial lower leg that sprinters use in Olympic-level races, or a motorized leg that can climb a slope as well as a natural leg? I gathered a list of 15 bionic body parts that I’d want to wear, or have installed.

Click to launch a tour of the body parts I’d want in the event of an accident.

A New Artificial Lung Can Breathe Regular Air Rather Than Purified Oxygen

              By Clay Dillow                  Posted 07.26.2011 at 5:06 pm                  10 Comments
       

Researchers in Cleveland have built an artificial lung that is so efficient it can breathe regular air rather than the pure oxygen required by current artificial lungs. The technology makes possible the idea of a man-made lung that is far more portable–and possibly implantable–for the nearly 200 million people suffering from some degree of lung disease.

Lab Builds a Fully Functioning Artificial Small Intestine

              By Rebecca Boyle                  Posted 07.06.2011 at 11:56 am                  5 Comments
       

California researchers have created a tissue-engineered small-scale small intestine in mice, a breakthrough for regenerative medicine and a step toward growing new intestines for humans. The process re-creates all the layers of cells that make up a functioning intestine.

Diabetes Researchers Report New Steps Towards the First Artificial Pancreas

              By Rebecca Boyle                  Posted 06.27.2011 at 1:43 pm                  2 Comments
       

Private companies and hospital researchers are increasingly making strides toward developing an artificial pancreas, supplanting insulin injections and pinpricks for patients with diabetes. Such a system would mimic the functions of a healthy pancreas, delivering insulin and monitoring blood sugar according to a computer’s careful calculations.

This Lung-On-A-Chip Is The First Lab-Ready Mini-Organ to Be Used in Drug Research

              By Victor Zapana                  Posted 10.08.2010 at 11:15 am                  5 Comments
       

This ersatz lung, no bigger than a multivitamin, could represent a new pharmaceutical testing method. On it, researchers have created an artificial alveolus, one of the sacs in the lungs where oxygen crosses a membrane to enter the body’s blood vessels. A polymer sheet that stands in for the membrane is in the blue strip. On one side of the sheet, blood-vessel cells mimic a capillary wall; on the other, lung-cancer cells mimic lung epithelial cells.

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, Peter and Ashley. A Love Story.


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

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

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

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

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

Let’s start with a definition.

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

Hepatitis C, Peter and Ashley.  A Love Story.

Written by Ashley Tenczar Curran

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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