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Archive for the ‘Patient Outlook’ Category


Marcela’s Story:  A Liver Transplant Gives the Gift of Life

Patient is HCV Positive, liver transplanted from a 22-year-old donor performed at age 70. Interview conducted 14 years post-liver transplant.

Author: Gail S. Thornton, M.A.

Co-Editor: The VOICES of Patients, HealthCare Providers, Caregivers and Families: Personal Experience with Critical Care and Invasive Medical Procedures

For Marcela Almada Calles of Valle de Bravo, Mexico, a picturesque town on the shores of Lake Avándaro about two hours outside of Mexico City where she has lived for 30 years, life is about seizing the moment and having “an open mind and positive attitude.”  An active woman in her 80’s, Marcela’s days are full of professional and personal achievements and a long list of activities still to accomplish. However, life wasn’t always so positive as she put her life on hold for two-and-a-half years to relocate to Los Angeles, California, so that she could have a liver transplant.

“My spirit and attitude have always been what has carried me through life and difficult situations. This time was no different.”

Image SOURCE: Photographs courtesy of Marcela Almada Calles.   

Marcela’s story started 20 years ago during a time when she operated a successful event planning and catering business for high-profile government and social dignitaries, pharmaceutical companies, and luxury department stores.

“I normally worked long hours from early morning until evening, until one day, I felt exceptionally tired and it became a huge effort to concentrate. My ankles were swollen and I was out of breath all the time and my skin was yellow. I felt sleepy and would sometimes become tired during the day. This was unusual for me. I knew something was not right.”

At that point, Marcela decided to make an appointment with her local physician and friend, Dr. Sergio Ulloa, a highly regarded rheumatologist and corporate and government affairs leader in Mexico, who examined her and took several blood tests. When the blood results came back, Dr. Ulloa immediately referred her to Dr. Sergio Kershenovich, a well-regarded hepatologist, at his private clinic, who checked her for symptoms of Hepatitis C. After that Marcela decided to get another opinion and went to see Dr. Fernando Quijano, a general surgeon, who immediately wanted her to have surgery because he had found a cancerous tumor in her liver.

“My doctors’ opinions were that I needed to have a liver transplant immediately because I was in liver failure. It appeared that I had a failing liver — and a tumor there as well and my liver was not working properly.”

Relocating Life to the United States

At that point, my six children – Marcela, Luis, Diego, Rodolfo, Gabriela, Mario — who live in parts of Mexico and Singapore became involved in my health care decisions and treatment plan.

“My son, Luis, believed the best treatment for me was to see a liver specialist in the United States so that I received the best care from a leading liver transplantation hospital. He made some connections with friends and that next day, Dr. Francisco Durazo, chief of Transplant Hepatology and medical director of the Dumont UCLA Liver Transplant Center in Los Angeles, told me to come immediately to see him. I remember my children were supportive and concerned, but were afraid for me as we all knew that I had a long road ahead of me.”

At that time, she was put on a national liver transplant list by the UCLA Transplant Center.

“What I didn’t know was that more than 9,000 potential recipients are currently awaiting liver transplants.”  http://transplants.ucla.edu/site.cfm?id=397

“Dr. Durazo was very concerned and told me that my liver was not working at all and I had to have a liver transplant as soon as possible, so he asked me to stay in Los Angeles, since I was now part of a transplant list.”

Evaluation By Transplant Team

Marcela’s case is no different than any other patient awaiting a liver transplant. According to their web site, the UCLA Transplant Center conducts evaluations over two or three days. During this time, the patients meets with a social worker, transplant hepatologist, surgeon, transplant coordinator, psychiatrist and dietitian, as well as other specialists as needed. The evaluation is customized to each patient’s medical condition. Once the evaluation is completed, each patient’s case is presented at a weekly meeting of the UCLA Liver Transplant Consultation Team. This group includes specialists from surgery, adult and pediatric hepatology, cardiology, pulmonary, nephrology, hematology, infectious disease, as well as transplant coordinators and social workers. At this time, the team determines if any other tests are required to ensure the patient’s candidacy for transplant, then the patient and the physician are notified of the recommendation made by the transplant team. http://transplants.ucla.edu/site.cfm?id=401

Waiting For Answers

Marcela arrived at UCLA in Los Angeles with her family on Mother’s Day — May 10, 1999 — for what she describes as “the best time in her life to be alive with the help of medicine and technology.” That meant that she needed to rent an apartment and live near the hospital in case the doctors received an anonymous donor who would give her the gift of life.

“I had to wear a beeper 24 hours a day and I was never alone. My children took turns over the next two-and-a-half years to give up their lives with their families to live with me and help me navigate the health care system and my upcoming surgery.”

Marcela filled her days at her new apartment in Los Angeles reading about her condition, meditating to quiet her mind, watching television, and talking with family, friends and neighbors.

“The doctors called me two times over the next few months, saying they had an anonymous liver donor and I needed to come now to the hospital for tests. Unfortunately, those blood tests and other diagnostic tests showed that I was not a good match, so the doctors sent me home. It was a frustrating time because I wanted to have the liver transplant surgery and move on with my life.”

Finally, after waiting eight months for a liver transplant, Marcela’s outlook on life was greatly improved when an anonymous donor gave her the gift of life – a new, healthy liver.

“The donor’s blood type was a match for me. The surgery took eight hours and it was successful. The doctors told me that my immune system might reject my new liver, so I was given a cocktail of medicines, such as anti-rejection drugs, corticosteroids, calcinurin inhibitors, mTOR inhibitors, and antibiotics and watched very closely in the hospital.”

Marcela was then permitted to leave the hospital only a week after her surgery.

“That was the happiest day of my life. My spirits were high and I had a life to live.”

Her children served as her strength.

“My children took turns flying back and forth to Los Angeles to stay with me. They had a long list of instructions from the doctor. I could take some walks and eat small meals for the next few weeks, but I couldn’t exert myself in any way. I developed a cold over the next few weeks, as my immune system was low, so I had to take special care to eat right, get enough sleep and, most of all, relax. My body, spirit and mind had much healing to do.”

For the next 1 ½ years, Los Angeles was my “second” home.

“I needed to remain there after the procedure so my doctors could monitor my progress. During that time, I felt stronger each day. The support of my family was a true blessing for me. They were my eyes and ears – and my greatest advocates. My doctor recommended that I come weekly for check-ups and go through a physical therapy program so that I could regain my liver function and physical strength. I followed all my doctor’s orders.”

Day by day, Marcela believed as if she could conquer the world.

“I decided, one day many months after the surgery, to become ‘irresponsible’ and spent time with a few good friends, Gabriela and Guadalupe, who traveled to see me. For a weekend, we went to Las Vegas to see shows and go to the casinos. I laughed, played and walked all I could. My children didn’t even know what I was up to, but I felt good and wanted to enjoy the world and my new freedom.”

Marcela was able to return home to Valle de Bravo with a fresh perspective, a long list of things to do, and many happy memories.

“Since that time, I have kept myself active and busy; I never let my mind and heart rest. I am also forever grateful to my anonymous liver donor because it is because of a 22-year-old young man who died in an unfortunate automobile accident that I am here today.”

Liver Transplant Facts

The liver is the body’s vital organ that you cannot live without. It serves many critical functions, including metabolism of drugs and toxins, removing degradation products of normal body metabolism and synthesis of many proteins and enzyme, which are necessary for blood to clot. Transplantation is the only cure for liver insufficiency or liver failure because no device or machine reliably performs all the functions of the liver. http://transplant.surgery.ucsf.edu/conditions–procedures/liver-transplantation.aspx

According to a hospital transplant web site, overall, outcomes for liver transplantation are very good, but vary significantly depending on the indication for liver transplant as well as factors associated with the donor. Currently, the overall patient survival one year after liver transplant is 88 percent. Patient survival five years after liver transplant is 73 percent. These results vary significantly based on the indication for liver transplantation. The encouraging trend is that over the past 20 years short- and long-term patient survival has continued to improve. With advances in surgical technique, organ preservation, peri-operative care, and immunosuppression, survival will hopefully continue to improve in the future. http://transplant.surgery.ucsf.edu/conditions–procedures/liver-transplantation.aspx

Life For Marcela Today

Science is helping rebalance medicine with the most innovative discoveries and new ways of treating illness.

“I am happy to be part of the solution with a happy ending, too.”

Today, Marcela leads a rich and full life.

“It’s been 14 years since my liver transplant. I continue to feel healthy and alive. Nothing will keep me from doing what I want to do.”

Marcela has an active social life. She takes frequent vacations around the world, including a three-month holiday to Asia, where she travels multiple times to Bali, Cambodia, China and Singapore, where her daughter lives. She is an avid golfer and organizes tournaments in many private golf courses. She is learning to speak French, which is an easy transition (she says) from speaking Spanish. She plays cards with a group of friends weekly, sings in a musical group, and takes dance lessons, too. Life is very, very good.

Editor’s note: We would like to thank Gabriela Contreras, a global communications consultant and patient advocate, for the tremendous help and support that she provided in locating and scheduling time to talk with Marcela Almada Calles.

Marcela Almada Calles provided her permission to publish this interview on July 21, 2016.

 

REFERENCE/SOURCE 

http://www.webmd.com/digestive-disorders/digestive-diseases-liver-transplantation

Other related articles:

Retrieved from http://transplants.ucla.edu/site.cfm?id=397

Retrieved from http://transplant.surgery.ucsf.edu/conditions–procedures/liver-transplantation.aspx

Retrieved from http://transplant.surgery.ucsf.edu/conditions–procedures/liver-transplantation.aspx

Other related articles were published in this Open Access Online Scientific Journal include the following: 

2016

AGENDA for Adoptive T Cell Therapy Delivering CAR, TCR, and TIL from Research to Reality, CHI’S 4TH ANNUAL IMMUNO-ONCOLOGY SUMMIT – SEPTEMBER 1-2, 2016 | Marriott Long Wharf Hotel – Boston, MA

https://pharmaceuticalintelligence.com/2016/07/15/adoptive-t-cell-therapy-delivering-car-tcr-and-til-from-research-to-reality-chis-4th-annual-immuno-oncology-summit-september-1-2-2016-marriott-long-wharf-hotel-boston-ma/

Technologies For Targeting And Delivering Chemotherapeutics Directly To The Tumour Site

https://pharmaceuticalintelligence.com/2016/04/25/technologies-for-targeting-and-delivering-chemotherapeutics-directly-to-the-tumour-site/

2015

3-D Printed Liver

https://pharmaceuticalintelligence.com/2015/11/16/3-d-printed-liver/

Newly discovered cells regenerate liver tissue without forming tumors

https://pharmaceuticalintelligence.com/2015/08/16/newly-discovered-cells-regenerate-liver-tissue-without-forming-tumors/

Novel Approaches to Cancer Therapy 

https://pharmaceuticalintelligence.com/2015/04/11/novel-approaches-to-cancer-therapy-7-12/

 

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President Carter’s Status

Author: Larry H. Bernstein, MD, FCAP

 

 

Most Experts Not Surprised by Carter’s Status 

But early response does not mean ‘cure’

http://www.medpagetoday.com/HematologyOncology/SkinCancer/55076

 

http://clf1.medpagetoday.com/media/images/55xxx/55076.jpg

by Charles Bankhead
Staff Writer, MedPage Today

 

Former President Jimmy Carter’s announcement that he is free of metastatic melanoma surprised many people but, not most melanoma specialists contacted by MedPage Today.

With the evolution of modern radiation therapy techniques and targeted drugs, more patients with metastatic melanoma achieve complete and partial remissions, including remission of small brain metastases like the ones identified during the evaluation and initial treatment of Carter. However, the experts — none of whom have direct knowledge of Carter’s treatment or medical records — cautioned that early remission offers no assurance that the former president is out of the woods.

“If I had a patient of my own with four small brain mets undergoing [stereotactic radiation therapy], I would tell them that I fully expected the radiation to take care of those four lesions,” said Vernon K. Sondak, MD, of Moffitt Cancer Center in Tampa. “The fact that President Carter reports that it has done just that is not a surprise to me at all.

“I would also tell my patient that the focused radiation only treats the known cancer in the brain, and that if other small areas of cancer are present, they will likely eventually grow large enough to need radiation or other treatment as well, and that periodic brain scans will be required to monitor for this possibility.”

Carter also is being treated with the immune checkpoint inhibitor pembrolizumab (Keytruda), which is known to stimulate immune cells that then migrate to tumor sites to eradicate the lesions, noted Anna Pavlick, DO, of NYU Langone Medical Center in New York City.

“Melanoma is no longer a death sentence, and we are really changing what happens to patients,” said Pavlick. “It really is amazing.”

Carter’s melanoma story began to emerge in early August when he had surgery to remove what was described as “a small mass” from his liver. Following the surgery, Carter announced that his doctors had discovered four small melanoma lesions in his brain, confirming a suspicion the specialists had shared with him at the time of the surgery.

Carter subsequently underwent focused radiation therapy to eradicate the brain lesions and initiated a 12-week course of treatment with pembrolizumab. The radiation therapy-targeted therapy combination was a logical option for Carter, given observations that the PD-L1 inhibitor has synergy with radiation, noted Stergios Moschos, MD, of the University of North Carolina Lineberger Comprehensive Cancer Center at Chapel Hill.

“I have seen this in other patients with metastatic melanoma,” said Gary K. Schwartz, MD, of Columbia University Medical Center in New York City. “It is remarkable but absolutely possible within the realm of immunotherapy today.”

Although Carter’s announcement is undeniably good news, the optimism should be tempered by a long-term perspective, suggested Nagla Abdel Karim, MD, PhD, of the University of Cincinnati Medical Center.

“We do have similar stories; however, we would be careful to call it a ‘complete remission’ and ‘disease control’ and not a ‘cure,’ so far,” said Karim. “We would resume therapy and follow-up any autoimmune side effects. Most important is the quality of life, which he seems to enjoy, and we are very happy with that.”

Darrell S. Rigel, MD, also of NYU Langone Medical Center, represented the lone dissenter among specialists who responded to MedPage Today‘s request for comments.

“I’m happy for him, but it’s very unusual, especially in older men, who usually have a worse prognosis,” said Rigel. “He is on a new drug that may have a little more promise, but there is no definitive cure at this point.”

 

 

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Life, connections and striving

Larry H. Bernstein, MD, FCAP, Curator

LPBI

 

 

I have been writing about life, illness, and end of life experiences.  I am recalling the untimely death of my mother in her 50s of Linitus Plastica.  Then I recalled my cousin, Robert E. Liss, who was a reporter for the Miami Herald who came down with Hairy Cell leukemia and sought a cure. He wrote a book about the experience that would be a read for medical students.  He died of his illness in 1980, leaving a wife and three children.  I had not seen him since our youth, but I see his sister, Barbara, and my only living aunt, Bernice, who is 95.  I accidentally came across a cousin he had on the Liss side who loves photography a few years ago, as I also have done photography and darkroom work some years ago, which complicated my recent move to be near a daughter, her husband and grandson.  I am reminded of what I missed in seeing my terrific children growing up.  I have been totally absorbed in Medicine for so many years that retiring was difficult.  My surgical colleague, now deceased, once told me that all of his colleagues died in their boots.  That may be a passing generation.

I admit that I am somewhat off the topic. I’ll return to a brief picture of Bobby Liss, author of a “Fading Rainbow”.  He and his were of a more activist generation, despite the fact that they were within a decade of my birth, my mother coming to US in 1941 at 18 years age with her 11 year old sister.  They settled in Cleveland where that side of my family lived.  Bobby and Barbara’s mother married an airforce pilot who had served in the Asian campaign, and they settled in Chautauqua, New York, where my family visited when we were children. I remember my father hitting a deer in the travel in upstate New York.

 

Fading Rainbow: A Reporter’s Last Story
by Robert E. Liss

Renee‘s review

Oct 03, 10

Unfortunately, Bob Liss died before completing this book and it shows. He’s an amazing writer and it’s obvious this book would have been a masterpiece had he been able to complete it himself. His wife, Bonnie, did a good job finishing it, but I’ve never yet read a book that was started by one author and completed by another that was a great book. But it’s still worth reading. Facing one’s own death is never easy, but Bob (my cousin, by the way) has an amazing outlook and I feel like I really learned a lot. Plus, it’s an easy, quick, engrossing read.

 

http://ecx.images-amazon.com/images/I/41m3bSv-S1L._SX373_BO1,204,203,200_.jpg

Fading rainbow: A reporter’s last story Hardcover – 1980

by Robert E Liss  (Author)

Published by Methuen

ISBN 10: 0416006310 ISBN 13: 9780416006315

Leukemia – Biography. | Journalists

 

 

For architect Bonnie Holmberg, writing began with tragedy. Diagnosed with an incurable form of leukemia, Holmberg’s first husband, Miami Herald reporter Robert Liss, had written most of Fading Rainbow, a book about his experience with a terminal illness. When he died before the book was finished, Holmberg completed his last few chapters in 1983, and the writing bug bit.

As the head of corporate design for now-defunct Eastern Airlines, she wrote her next book, Cruising at 30,000 Feet, aboard planes, writing about her life as a new widow and mother of three school-age boys (two of whom are now writers).

These days, Holmberg, 60, is remarried, retired, and a guide-in-training at Monticello, working under first-place winner David Ronka. Neither knew the other had entered.

Her winning entry, “Felonious Monk,” she says, was inspired by a friend who had put her home in her son’s name.

“I thought, ‘Oh gosh, what could go wrong there?'” she says. Fortunately for that friend, nothing terrible happened, but the thought stayed with Holmberg– and a recent Charlottesville bank robbery offered further inspiration.

The judges were drawn to her “felonious but strangely empathetic central character,” suggesting that the story’s only flaw was “a sense that the ending may best serve as the end of a beginning!”

They must have ESP (or else Jefferson really was whispering secrets from beyond). It turns out that “Monk” is her first short story, and it’s actually a part of her third novel. The first two, she laughs, “no one seems to want.”

She keeps her spirits up in a writing support group– an idea she suggests to anyone who wants to get into writing.

“It’s really given me a lot of encouragement,” she says, “kind of like AA.”


Bonnie Holmberg

Anyone who’s ever started a sentence with “I’m too old to…” should take a few pointers from first-place winner David Ronka.

“I was 49 or 50 when I went back for the MFA,” says Ronka, a long-time government worker who earned his graduate degree from University of Massachusetts-Amherst where he studied fiction under famed novelist John Edgar Wideman.

These days, Ronka, 61, is a historic interpreter at Monticello, but writing remains a passion.

“It’s something I can be doing when I’m 90,” he says.

His winning story, “What Can’t be Cured,” explores death through the eyes of a man whose marriage has also expired– but just might be resurrected.

Judges offered glowing praise.

“By putting an interesting twist on some recognizable male emotions, the author delivers present conflict and resolution in a light, but sincere vision of a man willing to admit his mistakes and try again,” they wrote. Ronka’s compliance with the contest rules, they said, earned him high marks as well.

So just how does one come up with the idea for a winning story?

“By observing, listening, asking myself constantly, ‘What if?'” says Ronka, whose inspiration for this story– originally a 61-page novella– came when a good friend passed away.

So what’s his favorite part of the story?

“The opening line is a pretty good hook, if I do say so myself,” he laughs. Getting readers interested immediately is “pretty essential,” he explains, “so I’m pleased with that.”


David Ronka
PHOTO BY JEN FARIELLO

 

http://www.songlyrics.com/jenny-wilson/like-a-fading-rainbow-lyrics/

 

Oh, no birds that flockin’ round my feet
No pockets full of grain, of crumbs
The wiener cake, the soft ice
Sweet
Sweet
Sweet

So I left my fading life
I left my hands with an open door
Left it like an open sore
I couldn’t stop the wind from flowin’

So I left my fading life
I left my hands with an open door
Left it like an open sore
I couldn’t stop the blood from flowin’

So I left my fading life
I left my hands with an open door
I left like a fading rainbow

So I left my fading life
I left my hands with an open door
I left like a fading rainbow

Oh, I left my fading life
I left my hands with an open door
I left like a fading rainbow

Read more at http://www.songlyrics.com/jenny-wilson/like-a-fading-rainbow-lyrics/#HREG26plFA5bH5VP.99

 

Jacobson, Richard
Fear and loathing on tenure trail

I do not know if she took my advice. Although I

offered to act for her, she left my office in the company

of her husband, who was still angrily demanding that

any letter contain the declaration that she had really

earned tenure. She never returned my calls.

 

The effect of an adverse decision is shattering. I

have noticed that rejected professors typically become

rather careless following the decision: they cross

streets without looking, they speak indiscreetly. One

client, following each of three adverse decisions, would

accidentally drop a pot of hot coffee on his hand or

foot. This symbolically suicidal behavior must be a

comment on the awful event: either it is an internaliza-

tion of the rejection-if you reject me, I reject

myself-or else it is a kind of dramatic reproach, as if to

say, if this is what you think of me, look at how great a

result you caused.

 

My advice to those I assist is nearly always that the

most important thing they can do is exactly what they

did before. They should go on with their work of

teaching and writing, if possible more energetically

than ever. This serves several purposes: it not only

diverts the mind from the powerful sense of grievance,

but it also confirms the identity of the client as teacher

and scholar. They have been put through a symbolic

execution, and it is up to them to carry out a symbolic

resurrection of their professional and personal vitality.

 

While I have always given this advice-and taken it

in my own case-I have only recently been able to ar-

ticulate the reasons for it. While I was writing the first

draft of this essay, I read a book written by a college

friend with whom I had lost touch, and which was

published posthumously (Fading Rainbow, Methuen

1980). Robert Liss was a very good writer who had

never quite achieved what he hoped. At the time he

learned he had a rare form of leukemia, he was a

reporter for the Miami Herald. He found a way of

transcending his pain and fear when he remembered

what he was, first and foremost: a writer and a jour-

nalist. So he spent the time remaining to him in-

vestigating his disease and writing about it in an in-

spiring and utterly truthful book.

 

If the basis of dispute is ultimately the fear of an-

nihilation, of a loss of the self, Liss teaches us that the

way to transcend the fear is through regaining your

Self. The effort may not change the external reality,

but it can alter the more important one. Courage is also

a denial of death.

 

Why do I bother with this’ business of helping

grievants? In most cases they do not pay me, and it

carries certain disutilities in my personal and

professional relations. The Authorities do not thank

me for it-although arguably my activity helps

legitimize their own. Being at odds with one’s world is

an extremely uncomfortable feeling: one grows

suspicious of other people, and one feels oddly guilty

about challenging Authority.

 

In one sense I think this kind of work is my own ef-

fort to achieve transcendence. I take pride in doing it

well, and most of those I have assisted have won sub-

stantial concessions, despite the conventional wisdom

that you can’t win these cases.

 

When the client soberly determines to undertake the

struggle to reverse the adverse decision, knowing the

immense stamina required, we both must face the in-

tensity of self-justifying response.

 

 

Family Hospice Care:
Pre-planning and Care Guide

harry@legacies.ca 

Copyright © 1986, 1989, 1993, 1999, 2002, 2006 Harry van Bommel

In the twenty years since this book was first published, hundreds of thousands of patients, family members, professional and volunteer care providers have learned the basic fundamentals of providing physical, emotional, spiritual and information supports.
People need to relatively pain free and alert for as long as they can. The hospice philosophy of care is about living life to its fullest before you die. That is not what typically happens for people near the end of their lives. Their physical pain is often not controlled well. That is inexcusable. No one need suffer unbearable pain. No one.
Many people hope that their last weeks and months will be filled with compassionate medical support, well-informed and caring family and friends, and information on how to live life fully. That is what excellent hospice care is all about. That is what Family Hospice Care is all about.
Harry van Bommel helped his mother, father and grandfather to live at home until they died. He has helped countless others through his writing, speaking, teaching and one-to-one support turn an end-of-life experience into something to be treasured rather than feared. His detailed suggestions help people take some control of the roller coaster ride of emotions, feelings and experiences.
The journey at the end-of-life will have moments of frustration, anger, tears, despair and overwhelming fear. That is too often the only experiences people have. Family Hospice Care is a tool that helps you minimize these negative experiences while providing specific ideas so that you can also experience profound moments of love, laughter, joy, retelling of stories, bonding with family and friends and care providers. Like birth, death can be an incredible opportunity to review your own life and its direction and find out the wisdom of all ages: it is our relationships with others that matter most at these times. Living fully until you die provides an opportunity to nurture those relationships to an even greater degree.
 

Study Finds Shu Gan Liang Xue Herbal Formula Has Breast Cancer Anti Tumor Effect

Posted in Uncategorized on June 25, 2014 |

 

larryhbern:

 

interesting finding. Of course, you won’t find a large scale study for a medicinal that is regulated as a FOOD. Whatever the cost, if the side effect were insignificant, it would be a challenge to pharma, but the cost is not picked up by insurance.

read-
Fading Rainbow
A Reporter’s Last Story
by Robert E. Liss
Methuen, Inc. 1980
Leukemia – biography
ISBN: 0-416-00631-0

 

Reporter for Miami Herald, merit scholar graduate from Brandeis U., father of 3, develops Hairy Cell Leukemia, going out like a “failing rainbow”, tells the story of tests, hospitalizations, treatments, pain.  Story completed by his wife – Bonnie Liss.

 

Renee Liss

But what really stuck with me, what really is making a difference in my life, the thing I need to remind myself of every single say is this: One of the characters goes to see a published author speak about his latest novel. They end up having a brief affair and she suggests one of his books for the group and he attends to meeting. In the course of speaking about his process, he tells the group that he used to putter around the house all day waiting for inspiration and it never came. So now he sits down at his desk at nine every morning and just starts. And the words come and he writes twenty pages a day.

So I’m trying something similar to that. Since I have a full-time job that is not writing a novel, I can’t sit down at nine every morning and just write all day. But I have decided to dedicate a minimum of one hour per day to it. I’ve done that for three days now and plan to continue today.

 

My friend Amy over at Mrs. Thor is in a similar situation — trying to get inspired and trying to make significant changes in her personal and creative life. So we’ve started our own private little writing group, though I don’t know that’s the appropriate term. We’re going to speak on the phone once a week and set goals for ourselves (like my writing an hour a day) and then check in by e-mail each day on whether we met the goals. It’s no pressure, but it’s still being accountable to someone else and hopefully inspired by the other person’s progress.

So far, I’ve added 3,100 words to my novel and rewritten a short story from a few months ago. It feels good.

Posted in My Thoughts on WritingTelevision

 

long before the idea of a corporation or land ownership or anything else modern, people traded and bartered for goods and services. We use money in our modern society, but humans for most of our very long history, have in one way or another purchased items for life from each other. It may have been that I have a cow and you have an orange tree so I traded milk for oranges.

But beyond this, let’s think about whether we truly want to model human society based on what other species do or do not do: ……

  • No more central heat, air conditioning or indoor plumbing.
  • Give up your cars, bicycles and all other forms of transportation other than swimming or walking.
  • Build your own house with no power tools.
  • Build that house without tools made with any form of power tools.
  • Quit your job to do nothing but hunt and garden and fight for resources.
  • No more flower gardens.
  • No one will be allowed to keep pets. In fact, you can’t have that cow I mentioned above because what other species keeps cows? Or dogs? Cats? Horses? You’re on your own. PETA will be happy.
  • No music.
  • No dancing.

 

Sun isn’t considered Hemingway’s greatest work and it was a strange book in that there really was no plot. Or maybe a very weak plot that the reader has to kind of search out. It was just a story about a series of events that happened to this group of people. But I still enjoyed it on a certain level. Almost like a course in creative writing without having to sit in a classroom.

I’m discovering how very much I have in common with this man. It’s all very strange. I’ve always said that my time as a journalist was the best thing that ever happened to my creative writing style. The quick, active, short way one must write newspaper articles — getting to the point quickly and using limited space to convey a vast amount of information — translates excellently into short story and novel-writing. One learns to not waste words or over-describe. Turns out, Hemingway learned the exact same lesson in the exact same way I did. He began his writing career in journalism and he learned to write fiction by emulating the journalistic style.

I hate to compare myself to him because he’s considered so widely to be one of the best writers in history and especially of the twentieth century and I haven’t even published a short story. Maybe I’m arrogant in my comparison, but I see so much of my style in his. I see the writer I maybe am not yet but want to be some day.

 

 

 

 

 

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An ambiguous course of psychosis

Larry H. Bernstein, MD, FCAP, Curator

LPBI

 

It is not always clear what the diagnosis is when a young person develops a psychosis, which is usually a clear break, but the features are not typical.  In the New York Times Opinion Page of Nov 17, 2015, Norman Ornstein describes the development of such in his son – How to help save the mentally ill from themselves.  He describes legislation in process to deal with the problem of when you institutionalize a potentially suicidal patient.  This was the situation that I described in the murder of Rabbi Adler on the podium by Richard Wishnetsky so many years ago.  In the case of Ornstein, his oldest son Mathhew died at 34 of carbon monoxide poisoning 10 years after his problem was discovered.

The son was a brilliant student, and he excelled in debating.  He was compassionate and empathetic.  This young man was a standup comedian and after graduating from Princeton wh went to Hollywood. The father describes his son’s condition as anosognosia, meaning lack of recognition of his illness.  I recall that a prominent cancer surgeon who was manic depressive psychotic and required lithium might have behaved that way when he failed to take his medication. He had a tragic surgical failure that ended his career when he was doing a rectal dissection and got into the posterior vascular bed and was in trouble, needing the assistance of the Chief of Urology.  The patient who died received over 100 units of blood. This very intelligent surgeon would throw the specimen he removed to the pathologist who entered the operating room in poor judgement.  I also recall a valued colleague of mine, a mathematical genius with MD and PhD tell me how the great surgeon and father of kidney transplantation could work tirelessly, but he died in a plane crash – himself as the pilot. I’m not in a position to disagree with Norman Ornstein’s conclusion that the son had a serious mood disorder, but the presentation he describes is similar to the two cases I mention.  In addition, I did not mention that my dear colleague was himself manic depressive, and he would work tirelessly, except when he was down and out.  He wrote an incredible program to diagnose heart attach from the serum enzymes for the IBM PC-XT in apl.  He sailed through difficult mathematics classes without taking notes.  He bacame interested in Shannon Information Theory when he heard a lecture by a microbiologist colleague who had done seminal work in classifying organisms by their biochemical features, which led to extending the use of feature extraction and combinatorial classes.

Ornstein points out that his son was over age 18, so that neither the family or professionals had any legal authority to make a decision about his hospitalization or related matters.  This is not quite like what I had seen with my brother.  But in my brother’s case, he was completely fractured, but he also was in no way belligerent.  In the case of Mathew Ornstein, he was never belligerent, but he was unkempt, kept himself poorly, and grew a beard.  He also becaame ultra religious.  The religiosity was also a feature of my own brother’s illness.  Matthew took a position that he could not take medication.  What is not clear is what medication he would have been on, which might be informative.

see more at – http://www.nytimes.com/2015/11/17/opinion/how-to-help-save-the-mentally-ill-from-themselves

 

 

 

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A Cousin’s Experience with a Pituitary Acromegaly

Author: Larry H. Bernstein, MD, FCAP

 

I have been given the need to think about resilience in the face of serious conditions, such that they require special surgery.  How do we account for the resilience?  I can’t quite get my hands around this question.  My grandfather lived a long life and retired at age 70 years as a mechanic so that a younger person could take the job.  He looked after my loving grandmother with dementia with great care.  He woke up early every morning and walked a good several miles before embarking on his day.  He loved to have his grandchildren visit at least every Friday.  He also loved to come to Detroit from Cleveland and fix anything in our house that could use fixing.

His younger son was a brilliant scholar, always reading, and a top student in his school in Hungary, so that he tutored the school principal’s children.  He was unable to finish his medical school studies because of the incursion of WW II.  He came to Cleveland and had a good career in selling insurance, and he could manage difficult calculations in his head.  He could recite the prologue to the Iliad throughout his life.  He lived to 99 years.  He liked to dance and enjoy himself.

My Uncle Herman had an only daughter.  I nickname her Lulu.  She and her husband have lived in Georgia for many years.  My sister was visiting her and told her that she was not like her younger pictures and was masculinizing in her features.  She had a serious anterior pituitary tumor called acromegaly that secretes growth hormone. She has used the Cleveland Clinic all her life and she was referred to a former NIH physician in Los Angeles who is recognized as a world authority.  She has had two surgical procedures in about two decades and is followed assiduously.  There have been complicated events that were related to her present condition, but she has managed it all well.  I get a call from time to time for assistance in a second opinion to review the radiology and pathology reports.  Despite her condition, she has an ability to take it all in stride.  I had made a recommendation many years ago on a diet that included sufficient omega 3.  The downside was that when visited by relatives the use of a good restaurant is not as enjoyable.   However, as I still recall, going to dinner in Florida with Herman’s brother was an experience because Dave’s wife was a far better cook.

When I was handling my own thyroid condition in the last two years I heard from Lulu. She encouraged me and said that I was a Schwartz.  That was the story.  Our only living aunt is 95 and doing quite well except for her macular degeneration.  She lives in upstate New York near her daughter, my cousin Barbara and her husband Stanley.  Barbara had a motorcycle accident many years ago, and she was afflicted with an enduring pain that she managed well.  It was difficult to visit when she was younger because she was so busy raising her children and taking them to activities.

One might look at this as having good genes, or is it good Jeans.  The significant factor is a healthy world view.

 

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Pilates

Larry H. Bernstein, MD, FCAP, Curator

LPBI

 

Mind-body*. Core Strength. Core Stability.

You’ve heard those terms before but what are they? Well, they are much more than the latest fitness buzzwords – they are keys to a healthier lifestyle through mindful movement and Pilates.

Pilates is an innovative and safe system of mind-body exercise using a floor mat or a variety of equipment. It evolved from the principles of Joseph Pilates and can dramatically transform the way your body looks, feels and performs. Pilates builds strength without excess bulk, capable of creating a sleek, toned body with slender thighs and a flat abdomen. (Yeah, we know – who doesn’t want that?)

It is a safe, sensible exercise system that will help you look and feel your very best. It teaches body awareness, good posture and easy, graceful movement. Pilates also improves flexibility, agility and economy of motion. It can even help alleviate back pain.

No matter what your age or condition, it will work for you, but don’t just take our word for it. According to the SGMA, in the U.S. alone nearly nine million people participated in Pilates in 2009 – a staggering 456% increase from 2000.

 

A group experience

Does working out with others help you stay motivated and focused? Do you need the camaraderie (and discipline) of scheduled classes to keep you on track? If so, group reformer or mat classes at a localstudio or club may be the best fit. Many clubs offer free mat classes to introduce their members to Pilates. Most group Reformer classes typically carry a fee.

To find a studio, club, rehab clinic or wellness center near you that offers Pilates, visit our Pilates Studio Finder.

 

Pilates and physical therapy

In addition, Pilates is now offered at many rehabilitation clinics and wellness centers. If you’ve been injured or are seeking physical therapy for chronic neck and back pain, hip/knee replacements, multiple sclerosis, fibromyalgia, scoliosis or other conditions, research is showing that Pilates can be an effective treatment. Discuss any treatment program with your healthcare team.

For more on Pilates for rehabilitation and sports medicine applications, our Library may be helpful.

 

Good Pilates technique includes intricacies of both movement and breathing that are best explained and demonstrated by a qualified instructor.

 

For all of us in this community, it’s about movement and how it can change people’s lives. And that’s what we are – a community. We’re all partners in this and when you do well, we do well, so we want you know you have our unwavering support.

We’re a diverse bunch – different nationalities, different styles, perhaps even different philosophies. But the big picture remains the same. We are all trying to make this world a healthier place. Whether it’s our own health, a friend’s, or a client’s, we’ve made a conscious decision: we believe in Pilates and mindful movement and the life-altering benefits they can bestow.

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Yoga Principles and Benefits

Larry H. Bernstein, MD, FCAP, Curator

LPBI

 

Top 10 Yoga Benefits

http://www.artofliving.org/yoga/yoga-benefits/top-ten-yoga-benefits

 

http://cdn.artofliving.org/sites/www.artofliving.org/files/styles/unity_carousel_inner/public/plakor-benefit-of-yoga.jpg

 

Weight loss, a strong and flexible body, glowing beautiful skin, peaceful mind, good health – whatever you may be looking for, yoga has it on offer. However, very often, yoga is only partially understood as being limited to asanas (yoga poses). As such, its benefits are only perceived to be at the body level and we fail to realize the immense benefits yoga offers in uniting the body, mind and breath. When you are in harmony, the journey through life is calmer, happier and more fulfilling.

With all this and much more to offer, the benefits of yoga are felt in a profound yet subtle manner. Here, we look at the top 10 benefits of regular yoga practice.

1. All-round fitness. You are truly healthy when you are not just physically fit but also mentally and emotionally balanced. As Sri Sri Ravi Shankar puts it, “Health is not a mere absence of disease. It is a dynamic expression of life – in terms of how joyful, loving and enthusiastic you are.” This is where yoga helps: postures, pranayama (breathing techniques) and meditation are a holistic fitness package.

2. Weight loss. What many want! Yoga benefits here too. Sun Salutations and Kapal Bhati pranayama are some ways to help lose weight with yoga. Moreover, with regular practice of yoga, we tend to become more sensitive to the kind of food our body asks for and when. This can also help keep a check on weight.

3. Stress relief. A few minutes of yoga during the day can be a great way to get rid of stress that accumulates daily – in both the body and mind. Yoga postures, pranayama and meditation are effective techniques to release stress. You can also experience how yoga helps de-tox the body and de-stress the mind at the Art of Living Yoga Level 2 Course.

4. Inner peace. We all love to visit peaceful, serene spots, rich in natural beauty. Little do we realize that peace can be found right within us and we can take a mini-vacation to experience this any time of the day! Benefit from a small holiday every day with yoga and meditation. Yoga is also one of the best ways to calm a disturbed mind.

5. Improved immunity. Our system is a seamless blend of the body, mind and spirit. An irregularity in the body affects the mind and similarly unpleasantness or restlessness in the mind can manifest as an ailment in the body. Yoga poses massage organs and stregthen muscles; breathing techniques and meditation release stress and improve immunity.

6. Living with greater awareness. The mind is constantly involved in activity – swinging from the past to the future – but never staying in the present. By simply being aware of this tendency of the mind, we can actually save ourselves from getting stressed or worked up and relax the mind. Yoga and pranayama help create that awareness and bring the mind back to the present moment, where it can stay happy and focused.

7. Better relationships. Yoga can even help improve your relationship with your spouse, parents, friends or loved ones! A mind that is relaxed, happy and contented is better able to deal with sensitive relationship matters. Yoga and meditation work on keeping the mind happy and peaceful; benefit from the strengthened special bond you share with people close to you.

8. Increased energy. Do you feel completely drained out by the end of the day? Shuttling between multiple tasks through the day can sometimes be quite exhausting. A few minutes of yoga everyday provides the secret to feeling fresh and energetic even after a long day. A 10-minute online guided meditation benefits you immensely, leaving you refreshed and recharged in the middle of a hectic day.

9. Better flexibility & posture. You only need to include yoga in your daily routine to benefit from a body that is strong, supple and flexible. Regular yoga practice stretches and tones the body muscles and also makes them strong. It also helps improve your body posture when you stand, sit, sleep or walk. This would, in turn, help relieve you of body pain due to incorrect posture.

10. Better intuition. Yoga and meditation have the power to improve your intuitive ability so that you effortlessly realize what needs to be done, when and how, to yield positive results. It works. You only need to experience it yourself.

Remember, yoga is a continuous process. So keep practicing! The deeper you move into your yoga practice, the more profound are its benefits.

Yoga practice helps develop the body and mind bringing a lot of health benefits yet is not a substitute for medicine. It is important to learn and practice yoga postures under the supervision of a trained Art of Living Yoga teacher. In case of any medical condition, practice yoga postures after consulting a doctor and an Art of Living Yoga teacher. Find an Art of Living Yoga course at an Art of Living Center near you. Do you need information on courses or share feedback? Write to us at info@artoflivingyoga.in.

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