Sunday, September 2, 2018

Living with PKD: Neil Simon, Walk for PKD: Portland, Dialysis Politics in California

Living with PKD

From Villages News, By Gabe Mirkin
Neil Simon’s kidney transplant contributed to later dementia




Neil Simon was America’s premier play and movie writer. His more than 30 plays and 30 movies won a Pulitzer Prize, three Oscars, three Tony awards, 17 Tony nominations and four Academy Award nominations. He once had four successful plays running at the same time on Broadway, and in 1983, he became the only living person to have a Broadway theater named after him.

On August 26, 2018, Simon died at age 91 of pneumonia, probably caused by food aspirated into his lungs, which often occurs with dementia (brain damage), associated with immune suppression from the drugs given to him so he would not reject the kidney transplant he received 14 years ago, to replace his kidneys that were destroyed by a genetic condition called polycystic kidney disease.

He Wrote About What He Lived

He became America’s greatest playwright by writing about his own experiences. He was born in the Bronx in 1927 and grew up during the Great Depression of the 1930s. His early upbringing and poverty had a marked effect on his own life, his many marriages and the characters he wrote about in his plays and movies. His father was a garment salesman and his mother worked in a department store. Their constant screaming and fighting and his father’s frequent absences from their home hurt Simon greatly. Money was so tight that he and his brother often had to live with relatives so his parents could earn money by taking in boarders. He was very shy in high school and spent much of his youth watching comedy acts in movie theaters. He said that he became a comedy writer in an effort to block out his painful childhood. At age 15, he received his first writing paycheck for doing funny sketches for a department store party. To obtain money for college, he enlisted in the Army Air Force Reserve at New York University. He was sent to Lowry Air Force Base in Colorado, where he wrote pieces primarily about sports.

After college he worked as a mailroom clerk for two years and then his brother invited him to join him in writing radio and television scripts. In his late twenties, he was hired to write for the television comedies Your Show of Shows and The Phil Silvers Show. He wrote scripts with Carl Reiner, Howie Morris, Mel Brooks and Woody Allen. In 1961, at age 34, his first Broadway play, Come Blow Your Horn with Frank Sinatra, ran for 678 performances. This was followed by two smash hits, Barefoot in the Park (1963) and The Odd Couple (1965), which made him the most sought after playwright on Broadway. In his late fifties, he wrote plays about himself growing up in working-class New York neighborhoods: Brighton Beach Memoirs, Biloxi Blues andBroadway Bound.

His Characters and His Marriages

He wrote mostly about himself and his neighbors and friends, so his characters were usually white middle-class Americans, mostly New Yorkers and Jewish, and his themes were strongly influenced by his painful childhood and his first marriage. He wrote comedies about fading love that often causes separation, divorce and child custody battles. In Lost in Yonkers, which won the Pulitzer Prize, he showed that marriages full of strife can deprive children of love that can damage them so much that they themselves end up with emotional disease and failed marriages. However, he often tried to save his characters by having them end up reconciling and staying together. He constantly preached monogamy as a means of stabilizing society and made infidelity a source of suffering.

He himself was married five times, twice to the same woman. At age 26 he married dancer Joan Baim, and they were together until she died of bone cancer 20 years later. That same year he married actress Marsha Mason, and stayed with her for 10 years. At age 60 he married actress Diane Lander, divorced her one year later, and at age 63 married her a second time for eight more years. At age 72 he married actress Elaine Joyce, who carried him through his kidney transplant at age 76 and his later years of suffering from dementia.

Polycystic Kidney Disease

Polycystic Kidney Disease is primarily a genetic disorder in which normal kidney tissue is replaced by sacs of fluid. It affects more than 600,000 Americans and causes about 10 percent of all end-stage kidney disease that requires dialysis and often requires kidney transplants. Symptoms can include back or belly pain, high blood pressure, headaches, and bloody and excessive urination. There is no FDA-approved treatment, but calorie restriction and avoidance of obesity may slow the disease’s progression (J Am Soc of Neph, Nov 4, 2015)

His Kidney Transplant

His wife, Elaine, said that he was already having kidney problems when she married him when he was 72, and that his disease progressed dramatically in the early years of their marriage. By age 75, his kidneys failed completely and he required dialysis. He suffered from exhaustion, severe muscle cramps, nausea, vomiting and worst of all, memory loss. He was now unable to write clearly. He was waiting for a donated kidney and matching donors are hard to find. One day he mentioned his need for a kidney to his friend and publicist, Bill Evans. In 1976, Simon had taken a chance when he hired Evans, who was just getting started as a publicist, and they continued working together up until 2006 on more than 20 plays. Simon recalled that he told Evans, “‘I just need to get a kidney somewhere.’ Evans replied, ‘Well, I’ll give you one.’ ‘You would?’ ‘Let me think about it,’ and he called the next day and said he would.”

Transplants and Dementia

Seventeen percent of people over 75 who receive kidney transplants develop dementia within 10 years, often because the immune-suppressing drugs that are used to prevent the body from rejecting the transplanted kidney can damage the brain (J Am Soc of Nephrology, December 15, 2016). Those who develop dementia have a 43 percent chance of rejecting their kidneys within 10 years and almost a 90 percent chance of dying within 10 years. The average survival time for people diagnosed with dementia is about four and a half years. After kidney transplantation, the most common causes of death are heart disease (36 percent), infection (24 percent) and brain death (12 percent), with smaller numbers from brain aneurism, brain hemorrhage or ischemic stroke (J Am Soc of Neph, June 1, 1995;5(12):2048-2056).

Everything You Do to Prevent Heart Attacks Also Helps to Prevent Dementia

About 35 percent of people over 85 suffer from dementia and being brilliant does not protect you from developing this condition. Other notable people who have suffered dementia include Aaron Copland, Abe Burrows, Alfred Van Vogt, Arlene Francis, Barry Goldwater, Burgess Meredith, Charles Bronson, Charlton Heston, Molly Picon, Norman Rockwell, Otto Preminger, Perry Como, Peter Falk, Rita Hayworth, Ronald Reagan, Sugar Ray Robinson and many others.

You can reduce your risk for suffering from dementia by 70 percent when you follow the same healthful habits that help to prevent heart attacks (JAMA, Aug 21, 2018;320(7):657-664). See my report on this study in Risk for Dementia Goes Down with Steps to Prevent Heart Attacks.

Dr. Gabe Mirkin is a Villager. Learn more at www.drmirkin.com




Dialysis Politics

From The Fiscal Times, By Yuval Rosenberg

California Assembly Passes Bill Cracking Down on Dialysis Reimbursement

The California State Assembly on Wednesday passed a landmark bill cracking down on the prices and payment practices of dialysis centers, delivering a win to insurers who backed the bill and potentially threatening the profits of large dialysis chains like DaVita and Fresenius.

The bill places limits on third-party groups like the American Kidney Fund, a not-for-profit organization that subsidizes premiums for dialysis patients with commercial insurance. The bill also caps some commercial dialysis payments at lower Medicare rates.

DaVita and Fresenius are large contributors to the American Kidney Fund, and insurers and labor groups including the Service Employees International Union of California have argued that the charity’s payments are used to game the system and direct patients to insurers that provide higher reimbursement rates — and more profit — for the dialysis companies.

The American Kidney Fund has said that the bill “would cause profound harm” to many dialysis patients. It called the legislation “nothing more than a thinly-veiled attempt by large health insurance companies to kick kidney patients off their insurance plans.”

The state assembly’s vote means the bill now will likely head to the desk of Gov. Jerry Brown, who has until the end of next month to act on it.

Why it matters: “This is a giant win for the SEIU, health insurers and employers and a huge blow to dialysis companies and the American Kidney Fund,” writes Axios’ Caitlin Owens, adding that “there will be a fierce lobbying blitz” by the dialysis companies to get Brown to kill the bill. If the legislation does get signed into law, Modern Healthcare’s Susannah Luthi writes, it could have a major impact on DaVita and Fresenius, which have about 70% of California's market share of just under 600 dialysis clinics and nearly 70,000 dialysis patients.”





Walk for PKD

From KATU, Channel 2, Portland, OR

Polysistic Kidney Disease Foundation Walk


Imagine having a disease that can cause your kidney to grow to the size of a football and that ultimately requires a kidney transplant. That's the reality for people with Polycystic kidney disease (PKD). PKD is a chronic, genetic disease causing uncontrolled growth of cysts in the kidney, often leading to kidney failure. It affects all racial and ethnic groups equally. The Herman Family--Rob, Linda, Kaley & Journey--joined us to share how their family is handling life with PKD.

The PKD Foundation has been leading the fight against PKD for more than 35 years through research, education, advocacy, support and awareness. 5h3y are the only organization in the U.S. dedicated solely to finding treatments and a cure for PKD. To help raise funds, they're holding walks across the country:

PKD Walk
Saturday, September 8, 2018
Registration: 8:30 a.m. | Penny Kids Dash: 9:15 a.m. | Walk start: 9:30 a.m.

Howard M. Terpenning Recreation Complex
15707 SW Walker Road, Beaverton

For more information, visit the website.

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