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A DAY IN THE LIFE OF A LIVER TRANSPLANT TEAM


Most of us have little contact with our transplant teams.  We meet the surgeon and perhaps a coordinator but very few others and once the transplant surgery is over, we are generally turned over to other specialists to follow our recovery.

Transplant teams are in the life saving business and while it is a hectic life it can be intensely rewarding.  You might have wondered exactly what a transplant team does.  Well, there’s not enough space or time here to go into great detail but I found this account of one day in the life of a transplant team fascinating.  I hope you do, too.

A DAY IN THE LIFE OF A LIVER TRANSPLANT TEAM

BY MARY ANN LITTELL

http://www.umdnj.edu/umcweb/marketing_and_communications/publications/umdnj_magazine/spring-2012/034.html

At age 57, Morristown resident Dagoberto Alvarado looked much older, a result of the devastating illness he’d been battling. It left him pale and weak, vomiting and losing weight. In February he was diagnosed with advanced cirrhosis. His physician advised him to go straight to the liver transplant center at University Hospital (UH): “They will save your life.”

At UH, Alvarado was evaluated and put on the liver transplant list. On March 10, he received a new liver in a grueling 12-hour operation. The next morning, his wife was amazed to find him sitting up in his hospital bed, eating a light breakfast. “I couldn’t believe the transformation in my husband — in less than a day,” she said.

“There are only two liver transplant programs in New Jersey. We are the first and the largest,” says Baburao Koneru, MD, chief of liver transplant and hepatobiliary surgery at UH and professor of surgery at New Jersey Medical School (NJMS). He launched the program in 1989 and that year, 15 transplants were performed. Since then, Koneru and his team have transplanted more than 1,000 livers, currently averaging 45 to 50 transplants a year. One-quarter of these patients have liver cancer. Other major reasons for liver transplantation include hepatitis C, alcoholic cirrhosis, primary sclerosing cholangitis, autoimmune hepatitis, primary biliary cirrhosis, Wilson’s disease and other serious disorders. The team also performs approximately 150 major liver operations annually.

The program is organized around a multidisciplinary team that includes surgeons, hepatologists, physician assistants, social workers, a psychiatrist with expertise in transplant issues, and financial coordinators to help navigate the maze of payment and reimbursement. Nurse coordinators (pre- and post-op) serve as the liaison between the transplant team and patients, overseeing the logistics of surgery and recovery.

A typical day with the medical/surgical team includes much more than surgery. This group is all about sharing knowledge and technical skills with residents, fellows, medical students, nurses, physical therapists, nutritionists, pharmacists and other hospital colleagues, on rounds and at weekly meetings and conferences. “There are many key players,” says Koneru. “Teamwork is what makes this program so successful.”

8:00 am

The day begins early with a radiology conference where the team evaluates the X-rays of many patients, identifying those who might benefit from a clinical trial or liver transplant. Patients are referred to the UH program from throughout the state. “We’re known for our excellent outcomes,” says Koneru.

9:45 am

Above left: Samanta and Koneru on rounds, which are attended by residents, medical students, social workers, nurses, pharmacists, physical therapists, dietitians and others. Above right: Koneru discusses patient histories with Michelle Wilkins, MD (left), NJMS’09, an intern at Robert Wood Johnson Medical School; and UH hepatology fellow Eleazer Yousefzaden, MD.

11:45

The team checks on Dagoberto Alvarado, now three days post-transplant. Dramatically improved, he’ll soon be heading home. Patients can wait for months on the transplant list — or in the case of Alvarado, be fortunate enough to secure a liver within a few weeks. “He might not have made it otherwise,” says his wife. The length of time a patient spends on the waiting list depends on many factors, among them the severity of their illness and the availability of donated organs.

1:30 pm

NJMS students may take clinical electives in a variety of specialty areas, including hepatology. This offers opportunities for collaborative learning from those in other health professions. It’s also a chance for students to ‘try out’ a specialty and experience first-hand what it’s like to be an active member of a medical team. Left: Cynthia Quainoo, MD, transplant hepatology fellow, discusses patient management with Samanta.

2:05 pm

Above Left: Patient Jamie Feireria was admitted to UH with cirrhosis of the liver and a severe rash (a common complication of liver disease). “I gained 30 pounds in one month,” she says. The physicians order tests to find out why. Above Right: Arun Samanta, MD, is professor of medicine at NJMS and chief of hepatology and transplant medicine at UH. The UH liver unit accommodates patients who are potential transplant candidates; those who are listed for transplant and await a donor organ; and those with severe liver disease — for example, acute liver failure, metabolic liver disease, advanced liver disease complicated with acute kidney failure, or drug-induced liver injury — who require care but do not need a transplant.

2:35 pm

Patient Alita Cruz has hepatitis C and has been on the transplant list for four weeks. She was admitted to UH when a liver became available, but unfortunately, the organ wasn’t in transplantable condition. Her wait for a donor liver continues.
FRONT ROW, LEFT TO RIGHT : GEORGE MAZPULE, MD, SURGICAL RESIDENT; BABURAO KONERU,MD; ARUN SAMANTA, MD.

MIDDLE ROW: ELISABETE DASILVA, PHYSICIAN ASSISTANT; EDITH MENCHAVEZ, RN, NURSE COORDINATOR; MARIA DEALMEIDA, FINANCIAL COORDINATOR; VALERIE BROOKS, SECRETARY; HELEN EDUJARDIN, PROGRAM ADMINISTRATOR; MALIHA AHMAD, MD, ASSISTANT PROFESSOR OF MEDICINE; CONNIE MUNOZ, PATIENT NAVIGATOR/REFERRALS COORDINATOR; ESTHER CALADO-ALIGMAYO, RN, NURSE COORDINATOR; THOMAS LYNCH, MD, SURGICAL RESIDENT; MARLENE ANDRADE, MEDICAL ASSISTANT; FELMA IZAR, FINANCIAL COORDINATOR; ADITI PATEL, PHYSICIAN ASSISTANT; DOROTHY O’HARE, RN, NURSE COORDINATOR; MAUREEN HESTER, RN, NURSE COORDINATOR ;ELOISA LAUDATO-HUFALAR, RN, NURSE COORDINATOR; IONA MONTEIRO, MD, ASSOCIATE PROFESSOR OF PEDIATRIC GASTROENTEROLOGY.

BACK ROW: GEOFFREY KOIZUMI, DATA SYSTEMS MANAGER; JACQUELINE O’BRYANT-TRAVIS, PROGRAM ASSISTANT; FONDA STEWART, MEDICAL ASSISTANT; LATONIA BALDWIN, MEDICAL ASSISTANT ;CARLO OPONT, PHYSICIAN ASSISTANT; ADRIAN FISHER, MD, ASSOCIATE PROFESSOR/TRANSPLANT SURGEON; AND DORIAN WILSON, MD, ASSOCIATE PROFESSOR/TRANSPLANT SURGEON.

3:20 pm

Transplanting an organ is not unlike staging a large, complex opera. There is so much drama — some of it life and death. The starring players — physicians, patients, nurses and myriad support staff — often face obstacles and conflict. There’s the quest for a ‘holy grail’— in this case, a healthy liver.

The group of people pictured above makes it happen at University Hospital. “Most patients are referred by their physicians, but some people find us by themselves,” says UH nurse coordinator Maureen Hester. “When they come here, they’re frightened. They expect to go on the transplant list right away, but it doesn’t work that way.”

Patients are first examined to determine whether they are transplant candidates. The workup includes evaluation by transplant hepatologists and surgeons, cardiologists, social workers and dietitians. A psychiatric workup includes support for patients and evaluation for drug and alcohol abuse – both primary factors in hepatitis C infection. Transplant candidates with alcohol or drug-related illness must agree to give up these substances completely. Their names will not go on the waiting list until they complete six months of sobriety.

Those who are accepted into the program go on a national waiting list until a liver becomes available. Statistical formulas are used to predict which patients’ are in the greatest need of a new liver and they are placed higher on the list. Patients’ placement on the list changes as their health status changes.

The wait for a liver can be days, weeks, or months. It’s part of the drama. When the call finally comes that a liver is available, the patient and the team are ready. And in the best-case scenario, there is a happy ending,

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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This List Could SaveYour Life


The 2012 Frankenstorm that started out as hurricane Sandy had a devastating effect on the eastern seaboard of the United States.   In situations like that it is critically important for the sick, elderly and those who are recovering from organ/tissue transplants and other procedures to be specially prepared to provide accurate medical information to emergency responders.

Being prepared for Frankenstorms is essential but mini storms pop up every day.  You never know when for no apparent reason your blood pressure increases dramatically,  you have difficulty breathing, you experience unexplainable weight gain or an angina attack sends you to the emergency room.  When that happens someone is going to ask what meds you are on, how often you take them, their dosage, contact information for your medical team and insurance info.  Under pressure and when sick it is not uncommon to forget important information.  That’s why I developed this list.   If you have already done what I recommend then review and update your effort.  If you haven’t, do it now while you have the time.

Developing the following information could save your life. There is nothing that can help emergency responders or medical professionals more than providing them with the information suggested below. It is critically important to your life that you take the time right now to do the following:

Information to include on an emergency medical information fact sheet: (sample at the end of this blog)

  • Your full name, address and phone number
  • Next of kin or person(s) who should be notified in case of your emergency including contact information (names, phone, address, email, cell phone)
  • Your Primary care physician name and phone number
  • Specialty care physicians names and numbers
  • The pharmacies you use (include phone numbers)
  • Health insurance company, agent and policy numbers (If on Medicare or Medicaid include that notation with account numbers).
  • Prescription insurance numbers
  • List all the medical conditions for which you are being treated
  • List all surgeries
  • Blood type
  • Write down every medication you take whether by prescription or over the counter.  Include milligrams for each, how often you take them and for which medical condition.

DO NOT GO ANYWHERE WITHOUT AT LEAST A WEEK’S SUPPLY OF YOUR MEDS!   This is especially important during a disaster situation in which transportation, emergency and other services are strained, temporarily unavailable or even suspended.

Some people, transplant patients and recipients in particular must take certain medications to stay alive.  In situations like storms or other natural or unnatural disasters and emergency situations you could be faced with a situation in which you are unable to go home to retrieve your medications and other important belongings.  I suggest you do what I do and that is to keep a shoulder bag packed with your meds and other medical equipment that is within your reach at a moment’s notice. If possible you should also try to stash some cash in your emergency bag.  You might find yourself in a situation where checks and credit cards are useless.

If you have a cell phone and an extra charger, put it in your meds bag.  If you don’t have an extra charger keep the one you have in your meds bag when you are not using it. There is nothing worse than being unable to get to your charger when your phone is going dead.  That phone could be your link to safety and treatment.

If you wear a medical necklace or bracelet, make sure it is up to date and accurate.  If you don’t wear one and have time, get one.

When you have completed the medical emergency list (it should all fit on one sheet of copy paper) make two or three copies, fold them carefully and put them in your purse or wallet.  Emergency medical people can be of the most help if they are aware of your medical history, current medications and other treatments you may be getting.  Having that list in your possession and providing it to medical experts could save your life.  While you may know all of this information, do not depend on your memory.  One omission could prove to be catastrophic.  You must also remember to update the list every time you get a new medication, quit using one, or have any change in your medical condition.

A separate list should be developed for your personal use.  It should include phone numbers of emergency services you might need and iportant family and friend contacts you might need (include cell phone numbers and email addresses).

Sample Medical Info Sheet to Carry With You

HEART TRANSPLANT RECIPIENT

Best Hospital USA  August 21 2007  Immunosuppressed

John Doe

Birth date 2-17-1950

9180 orchard lane Anycity, USA

Home 555-555-5555  Cell phone 555-555-5555

SS # 555-55-5555

Spouse; Jane Doe; Cell phone 555-555-5555

Physicians:

Primary, Dr.Sawbones Anycity USA.  Address, phone numbers

Transplant Pulmonologist,  Dr. Breatheasy best clinic USA. 
Address, phone numbers

Transplant Cardiologists, Dr. Heartthump best clinic USA. 
Address, phone numbers

Transplant Coordinator:  Nurse Jane best clinic USA/
Address, phone numbers

 Pharmacy: 

Primary:  Best Pharmacy USS. 
Address, phone numbers

Secondary: Second best pharmacy USA. 
Address, phone numbers

 Health insurance:

Primary Medicare part A, Hospital, part B, Medical. Policy number other info

Secondary, AARP Medicare Supplement .   policy number other info

Medicare part D Prescriptions, AARP Medicare RxEnhanced policy number, other info

 

ALLERGIES:  Penicillin, cats, all seafood/fish, mold, dust.  

 BLOOD TYPE: B Positive

MEDICATIONS

 Heart related medications

  • Anti-rejection Cyclosporine 200 mg  twice a day
  • Anti-rejection — Cellcept  1000 mg twice a day
  • Anti-cholesterol — Prevastatin 20 mg once a day
  • Blood Thinner – Aspirin 81 mg once a day
  • Blood Pressure – Amlodipine Besylate 5 mg twice a day

Other medications

  • Reflux – Omeprozole  (Prilosec) two 40 mg twice a day
  • Thyroid — Levothyroxine .088 MG once a day  (upon arising)
  • Asthma – ProAir albuterol  rescue inhaler as needed
  • COPD – Foradilinhale one capsule twice a day
  • COPD – Spiriva inhale one capsule once a day (upon arising)
  • Depression-Remeron  7.5 –mg once a day-

 Supplements

—  Calcium – 600 mg tablet with Vitamin D twice a day

—  Multi-vitamin– one tablet once a day

Medical Conditions

  • Asthma, hay fever, allergies diagnosed 1951
  • Non-smoker
  • COPD diagnosed October 2000
  • Restless leg syndrome diagnosed 1996
  • Chronic lower back pain

Surgeries

  • Heart transplantBest Hospital 
  • Anywhere USA August 2007
  • Cholecystectomy 1994
  • Total left knee replacement 1998

This list is on my computer and on my cell phone.  Also, I carry two paper copies in my wallet at all times and update it whenever there is a condition, prescription, insurance or medical team change.  Every time I hand this list to ER personnel, or anyone else who asks for it they all say the same thing, “Everyone should carry a list like this it is of invaluable help to us and could save your life.”

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

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

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

Bristol Myers /Gilead Science — Profits Ahead of Life


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

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

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

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

Here’s an Excerpt-The Street

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

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

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

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

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

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

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

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

Other people with greater risk of infection include:

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

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

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

Hep C symptoms may include:

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

http://tinyurl.com/d55az86

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

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

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

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

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

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

 

Critical Information On Managing Your Medications


Reprinted and reformatted from WikiHow

With Additions by Bob Aronson

Have you just started a new medicinal regimen that requires you to take pills every day? Remembering to take your medication every day can be a chore, but it is also very important for your health. If you’re forgetful or simply have too many medications to track, then maybe this guide can help you remember to get the job done.

Start using a calendar. You can purchase a paper calendar and hang it in your room and teach yourself to look at it every day, making and leaving notes accordingly. You can also search through free electronic calendars on the Internet or use calendar software that may have come with your computer. Some of these allow you to add notes and automatically send you reminders by email or by SMS (i.e. text messaging).

Set visual reminders.

  • Put the medication close to something you need to deal with on a daily basis anyway. For example, if you take your medication in the morning, make sure that before going to bed at night, you place it next to the coffee pot, if you make coffee in the morning. Or, you can attach your medication bottle or pill box to your toothbrush with Velcro.
  • Make it part of your routine. If you take it every morning, make it a habit to take it as soon as you step out of the shower, or as soon as you get out of bed.
  • You can purchase sticky notes to leave in your kitchen, your car, or anywhere that you frequently visit. For medication that is stored in the fridge, you should paste a post-it note on the fridge door (or on your coffee pot) that says Take Pills.
  • Remember medication that needs to be taken with a meal, by keeping it right on the table, in front of the place that you eat.
  • If you are on your computer often, you might create a text file on your desktop that contains a list of things that you need to do. You can search the Internet for “electronic” sticky notes that you can place directly on your desktop, rather than purchasing paper ones. These programs will often allow you to set timers and reminders directly to the notes to flash or emit sounds accordingly.
  • If you have a complex regimen, write a list with the medication, time and date and tape the list to the mirror in your bathroom. You can also print this on a grid and check off each medication after you take it.
  • Set an auditory reminder. This is a common and fairly effective way to remind yourself to take your medicine. Most cell phones have an alarm function that allows you to set a “daily” alarm time where it rings. Choose a tone that will remind you that you need to take your medicine. If you do not own a cell phone, you might set your alarm clock to go off at a particular time each day for the same effect. Another alternative is to buy a digital watch and set the alarm to go off as many times per day as you need to take medication. A small digital kitchen timer with a numeric keyboard can be useful. Be sure to get one that can be set for hours, not just minutes and seconds. As soon as the alarm goes off, immediately take your medication to reinforce the habit. Saying “Oh, I’ll do it in a few minutes” can lead to repeated forgetfulness and defeat the purpose of having an alarm.
  • Sort your medication. Place all your medications, including your daily dose of vitamins on your kitchen counter. As you take one pill, close the bottle, and place it to the left of the counter, making two piles. Do the same for each pill you take. Remember that the ones you need to take are in front of you. The ones you have already taken are to the left of you. After you are finished taking all your pills for the day, place all those on the left hand side back into the kitchen cabinet. Now you will know that all of your pills have been taken. Pre-sorting the pills into a plastic container designed for this purpose (a pill box or medicine box) is another way to avoid taking the same medication twice by accident. If that compartment is empty, you know you took the meds. Pill sorters come in different sizes and different colors. Aim to have enough to sort two weeks of meds at a time.
  • Adopt a “divide and conquer” strategy. In other words, take half of your medicine and keep it in a place other than your household, such as your office at work. If you happen to forget to take your medicine in the morning, you can easily access your medicine at work.
  • Be mindful of your medicine’s storing conditions, especially if you plan to keep your pills in your car’s glove box on a hot summer day.
  • Get another person to remind you. Have a friend or loved one to remind you to take your medicine, or to ask you if you remembered to take your medicine.

Tips

  • Use your phone calendar to set recurring reminders daily. It’s a more subtle way to be reminded. If you use your company phone/Outlook, make sure you mark the appointment as “private” and keep the reminder description generic to protect your privacy

Be careful when deciding on reminders. If you get too comfortable with them (such as a note on your fridge or by your pill box) you may be more likely to overlook it or ignore it.

  • Not all medication is available or legal in all countries so you should check ahead. Any medication that may have a controlled substance may not be allowed in some countries so make sure you bring your prescription bottle and if possible a photocopy of your physician’s prescription.
  • If you choose to set an alarm on your cell phone, be sure that it is a tone that you can easily associate with taking your medicine, so that you do not become too accustomed to hearing a soft tone. Or, if all else fails, set it to the same tone as your normal ring tone.
  • Remember to take your medication with you when you go on holiday. When you pack your toothbrush, pack the medications you take also.  IMPORTANT!  NEVER CHECK MEDICATION WITH YOUR BAGGAGE.  ALWAYS KEEP YOUR MEDS WITH YOU IN CASE YOUR BAGGAGE GETS LOST.
  • If on vacation, pack your original, pharmacy-labeled medication bottles or keep a detailed list in your purse or wallet.  I have attached a sample list to the end of this blog.
  • Your meds list should also include critical medical information like insurance, physicians and clinics, and medical conditions. If it happens that you need emergency medical care, this will help the care providers to quickly determine what medications you take and how and why you take them, should you not be able to remember them or not speak for yourself. It is difficult, time-consuming and sometimes impossible for health care providers to identify unlabeled pills. For the same reason, do not dump different medications into the same bottle.
  • Before you go on a long vacation, ask your doctor to give you an extra prescription for your pills, so that if you run out, lose them, or spill them, you can have the prescription filled at any drugstore.
  • If you are taking medication for a serious condition such as heart disease, wear a Medical Alert tag, necklace or bracelet listing the name(s) of your illness and the medications you use to treat it/each. Also list any potentially hazardous interactions and allergies.
  • If one or more of your medications causes photo sensitivity, be sure to put on sunscreen before leaving your house, no matter what it looks like outside; you’d be surprised how little light is required to get a full-blown sunburn!

Warnings

  • Be mindful of making a mental note to yourself when you take your medicine. Forgetting to take your medication is one thing, doubling your dosage because you forgot that you’d already taken your medication for today is another. You could make a box next to your “Remember Pills”-note, tick it off when you’ve taken it.
  • If you do forget to take a dose, read the instructions that come with your medication carefully. Don’t assume that you should take your dose anyway- although this is the case for most, it can be different for others. If you have trouble reading, ask the pharmacist to explain the dosage directions.
  • Before leaving the pharmacy, check to make sure that the pills in the bag are the pills that you use. Pharmacists make mistakes also.
  • When leaving your medicine bottles around to remind you to take them, be careful if you have children so you do not leave the pills in a easy spot for a child to grab.
  • Be aware that certain prescription medications have a high potential for addiction or abuse. If you find yourself taking more of a medication than prescribed, call your doctor immediately to talk about the change.
  • Some medications, such as those classed as controlled substances, may not be appropriate to leave around the house. Place them in a locked cabinet, box or drawer, and do not move them from one building to the next. Try to not let others know that you are on such medications and avoid taking them in public. It’s not uncommon for people to steal certain medications, either to abuse themselves or to sell to others with similar intent.
  • It’s a Federal offence to transfer a controlled substance to anyone other than the person to whom it was prescribed (you). If you do wind up victim of a theft, report it immediately to avoid potential prosecution.
  • Some medications have ‘black box warnings’. This means that when taken incorrectly, or by those with certain conditions, fatalities may arise. Place these and other such medications in a safe location and call your doctor right away if you think you might have accidentally taken more than prescribed.
  • Sometimes the pharmacist gives out a stranger’s prescriptions by accident, read the label carefully.

Sample Medical Info Sheet to Carry With You

HEART TRANSPLANT RECIPIENT

Best Hospital USA

Immunosuppressed

John Doe

Birth date 2-17-1950

9180 orchard lane anycity, USA

Home 555-555-5555  Cell phone 555-555-5555

SS # 555-55-5555 Spouse; Jane Doe; Cell phone 555-555-5555

Physicians:

Primary, Dr.Sawbones Anycity USA

Transplant Pulmonologist,  Dr. Breatheasy best clinic USA

Transplant Cardiologists, Dr. Heartthump best clinic USA

Transplant Coordinator:  Nurse Jane best clinic USA

Pharmacy: 

Primary:  Best Pharmacy USS

Secondary: Second best pharmacy USA

Health insurance:

Primary Medicare part A, Hospital, part B, Medical

Secondary, AARP Medicare Supplement .  

Medicare part D Prescriptions, AARP Medicare RxEnhanced

Allergies:Penicillin, cats, all seafood/fish, mold, dust. 

Blood Type: B Positive

Heart related medications

  • Anti-rejection Cyclosporine 200 mg  twice a day
  • Anti-rejection — Cellcept  1000 mg twice a day
  • Anti-cholesterol — Prevastatin 20 mg once a day
  • Blood Thinner – Aspirin 81 mg once a day
  • Blood Pressure – Amlodipine Besylate 5 mg twice a day

Other medications

  • Reflux – Omeprozole  (Prilosec) two 40 mg twice a day
  • Thyroid — Levothyroxine .088 MG once a day  (upon arising)
  • Asthma – ProAir albuterol  rescue inhaler as needed
  • COPD – Foradilinhale one capsule twice a day
  • COPD – Spiriva inhale one capsule once a day (upon arising)
  • Depression-Remeron  7.5 –mg once a day-

Supplements

—  Calcium – 600 mg tablet with Vitamin D twice a day

—  Multi-vitamin– one tablet once a day

Medical conditions

  • Asthma, hay fever, allergies diagnosed 1941
  • Non-smoker
  • COPD diagnosed October 2000
  • Restless leg syndrome diagnosed 1996
  • Chronic lower back pain

Surgeries

  • Heart transplantBest Hospital 
  • Anywhere USA August 2007
  • Cholecystectomy 1994
  • Total left knee replacement 1998

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.

 

Ethicist Needs Ethics Transplant


In an op-ed piece on MSNBC Arthur Caplan a University of Pennsylvania bioethicist suggested that Vice President Dick Cheney received a heart transplant because he was rich and influential.  Caplan implied, too, that Cheney at 71 was too old for a transplant and that the heart should have gone to a younger person.  I responded with this comment.

Up until today I had some respect for Dr. Caplan but upon reading his uninformed and arrogant musings on Vice President Cheney’s heart transplant and senior citizens, I not only lost all respect I find him pathetic and in need of an ethics transplant. 

I am a long time Democrat, a very vocal opponent of Mr. Cheney and everything he stands for and a transplant recipient who got a heart at age 68 and I’m neither rich nor influential yet I believe the former Vice President got his heart in the same fair and balanced manner in which I got mine.  In that sentence I just negated all of Caplan’s arguments.

Had Arthur Caplan taken a little bit of time to understand the donation/transplantation process he might have a different story.

As much as I dislike Dick Cheney he got his heart fairly and am convinced that his wealth and influence had nothing to do with it. The only discriminatory factor that prevailed is that you must be able to pay for a transplant whether privately or through insurance. Yes, that leaves a lot of people out of the mix but that’s another argument.  He was insured just as I was. Had we matched bank accounts I would have come out on the short end but it was insurance that paid not private wealth.

The United Network for Organ (UNOS) Sharing in Richmond, Virginia (a site I’ve visited many times, has Caplan?) is a U.S. government subcontractor that coordinates all organ transplants in the United States.  It has done so since its establishment under the National Organ Transplant Act (NOTA) in 1984.  Its computer system tracks and continually updates the national transplant list which includes nearly 114,000 Americans.  It is a very sophisticated process and it is blind.  The information in the system does not contain anyone’s name or rank or social standing or wealth it has medical information and the location for each patient.

Having been on the national waiting list I think I’m familiar with the process of how you get there and it is not easy.  First you must see a specialist in your disease at a transplant center where you are subjected to battery of tests to determine two things 1) are you a legitimate candidate for a transplant and 2) is it likely you’ll survive after the surgery.  If the physician determines you meet those criteria he or she presents your case to a hospital’s transplant committee and, if they agree, the patient’s information is sent to UNOS for listing.  Please note, you cannot get on the list unless a specialist physician certifies that you are dying, that a transplant is a last resort to save your life and that you will survive the surgery.

In the United States there are 58 Organ Procurement Organizations (OPOs) they are the federally mandated groups that work with transplant centers  and UNOS to identify potential donors and then with families and hospitals to coordinate the recovery of the organ and its transportation to the site of the recipient.  They have no knowledge at any time of who the recipient is.

Once it is clear that there will a donor organ the process begins to match blood type, tissue, size and other factors.  The match must be as close as possible to in order to limit rejection of the organ by the host body (once transplanted rejection is further limited by powerful drugs). While the intent is to get the organ to the sickest patient, it doesn’t always work out that way because sometime the sickest patient is not a good match for the available organ.

Here’s an example.  I had my transplant done at the Mayo Clinic in Jacksonville, Florida.  My heart came from South Carolina.  I don’t know all the details but here’s what likely happened.  First the heart was offered within the immediate area served by the OPO but there were apparently no good matches.  Then it was made available to outlying areas and they found me in an area that was in the jurisdiction of a different OPO altogether.  I was not the sickest (wasn’t even hospitalized) and certainly at age 68 was not the youngest, and I know I was not the richest but I was a match and I got the heart.  It is just as likely that the same thing could have happened for Mr. Cheney. 

It is also likely that had Cheney not gotten the heart, no one would because it wasn’t a match.  I doubt that someone else was deprived of an organ because Mr. Cheney got it.  Also, there is the question of distance.  An organ will only survive for a limited amount of time once removed from a body.  It must be transplanted as soon as possible.  Mr. Cheney was likely the best candidate within the range of the survivability of the organ. 

 And finally.  It may not be important to Dr. Caplan that those of us over 65 have a chance at getting a transplant and living several more years but it is to us.  How dare he imply that we seniors aren’t worth the time, money and effort to save.  His arrogance and lack of compassion reflects poorly on his ethical character.  How can the ethicist say that a certain segment of the population is “disposable.”  Is that ethical behavior?   Better unlock that ivory tower door Dr. Caplan.  Let some fresh air in.

Bob Aronson, a 2007 heart transplant recipient is the founder of Facebook’s 1700 member Organ Transplant Initiative and the writer of 110 blogs on donation/transplantation issues on Bob’s Newheart on WordPress. 

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 a PowerPoint slide show for your use free and for use 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.

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

Journalistic Terrorism


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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

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