Overcoming Acute Myelogenous Leukemia – Max’s Story

Max Harris, a twenty-nine year old patient at Mayo Clinic in Arizona, shares his experience battling a rare form of leukemia, acute myelogenous leukemia (AML). He describes undergoing a bone marrow transplant as treatment for AML. Max explains what helped him get through his treatment and how he is doing now following the bone marrow transplant.

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A Patient’s Kidney Transplant Journey


Lupus patient shares organ donation experience with mother

Photo: courtesy of Alison Lee.

Alison Lee is a fighter. She has fought lupus, kidney failure, and cancer—all in just 35 short years.

Alison was diagnosed with lupus at 16 years old. Lupus is a disease in which your immune system attacks your healthy cells and tissue by mistake. Lupus may affect the kidneys and can lead to kidney failure.

However, Alison didn’t experience serious lupus symptoms until she was in her mid-20s, when she started to have anemia (or lack of red blood cells), shortness of breath, and heart issues.

At that point, she was living in New York City and doing things many other 20-somethings do: working, hanging out with friends, and enjoying life.

Kidney failure

But things got worse in 2014 when her lupus started to damage her kidneys. She remembers feeling fatigued and very weak.

“When going to dinner with my friends a few blocks away, I would need to stop and take a break and sit on a bench because I couldn’t walk three blocks,” Alison said.

She also noticed decreased urine output. Her kidneys started to fail. She remembers feeling fatigued and going in and out of the hospital.

“I would go through an entire day at work without having to pee at all. I knew something was going on,” Alison said.

Finally, in 2014, she decided to leave her job because she felt so sick. In 2015, she started kidney dialysis because her kidneys were unable to work well enough to keep her healthy.

“Because my heart had been struggling for so many years, my doctors said it wouldn’t be able to handle a kidney transplant,” Alison said.

“Dialysis was really difficult for me. At the beginning it was like a full-time job because you need to drain and refill the fluid every four to six hours. It was difficult to have a normal life,” she added.

However, the dialysis improved Alison’s health dramatically.

Preparing for a transplant

After six months on dialysis, she was healthy enough for a transplant. She had a transplant evaluation and asked family members to be tested to see if any of them would be good potential donors.

Alison was one of the lucky ones when it came to finding a donor. Her mom, sister, and brother all offered to donate.

“Of course, my mom being my mom said she would donate,” Alison said.

Her mom wouldn’t have it any other way. “My mom is so selfless, and she has helped me throughout all of my health issues in the past,” Alison added.

Despite her fears, Alison said the excitement about the future outweighed her concerns about the surgery.

“The whole transplant experience was straightforward and easy. The hospital wanted to make sure I understood everything that was happening with the transplant and also post-transplant,” Alison said. “I was more excited about the prospect of the future than scared about the procedure.”

After surgery, Alison woke up and had to pee a lot, which was a good sign. It meant her kidney was working well. Her blood work was also positive.

Alison’s mom, who was in her sixties at the time, also did well. She was back up and helping take care of Alison during her recovery just three days after surgery.

A difficult recovery

While the transplant surgery was straightforward, Alison’s recovery wasn’t easy.

About a month after surgery, she discovered a lump growing behind her ear. She ended up contracting lymphoma, a cancer of the lymph nodes. While very rare, a drug Alison needed to prevent rejection of her transplant allowed a slow-growing lymphoma she had before the transplant to transform into a more aggressive lymphoma.

“It’s not common, but I had some history of a slow growing lymphoma in my past, so they knew this was a risk. Coupled with my recovery from transplant, I also had to go through the biopsy and the chemo treatment that I did for about four months,” Alison said.

Despite the difficult battle of recovery coupled with chemotherapy, Alison’s positive attitude and family helped her each step of the way. An unexpected benefit from her chemo was decreased rejection of her transplanted kidney. “The chemo was surprisingly beneficial for my transplant. I was given lots of fluid which helped to keep the new kidney hydrated. Also, the chemo itself essentially killed my immune system, preventing it from attacking the new kidney,” Alison said.

The next chapter

Alison is in remission but still deals with related health issues. She works closely with the Lupus Research Alliance, focusing on patient advocacy and sharing her story and message of hope with others. She recommends other people struggling with health issues find a support group or organization.

“It’s good for me to interact with other lupus patients. It helps me to feel more comfortable with my disease,” Alison said.

Alison also works part time and carves out time to travel and enjoy the little things. She recently traveled to Mexico for a yoga retreat.

“I think a positive attitude is really important,” said Alison. “Even through all of this, I’ve never felt like I was dying or wasn’t going to survive. Each issue just becomes another bump that I have to get through until things will get better.”

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Getting a Kidney Transplant: What You Need to Know


In the U.S., an estimated 14 percent of the population has chronic kidney disease, and roughly 661,000 Americans have kidney failure. Of these, 468,000 people are on kidney dialysis, and almost 200,000 live with a functioning kidney transplant.

MedlinePlus and the National Institute of Diabetes and Digestive and Kidney Diseases have helpful information about how kidney transplants and other options can help.

What are kidneys?

Your kidneys are two bean-shaped organs that filter out waste and extra water, make hormones, and do other important things to keep you healthy. They are located on either side of your spine and are each about the size of your fist.

What causes kidney failure?

Diabetes and high blood pressure are the main causes of chronic kidney disease, which is the gradual loss of kidney function. Other conditions that affect the kidneys include autoimmune diseases like lupus and inherited diseases like polycystic kidney disease.

Some people live with kidney disease for years, others quickly progress to kidney failure. Kidney failure means that your kidneys have lost most of their ability to function–less than 15 percent of normal kidney function.

Medication and other methods of managing kidney disease help some people maintain kidney function for years. Others progress quickly to kidney failure.

Dialysis and kidney transplants are two treatments used to replace failing kidneys. Dialysis takes the place of your kidneys by helping remove waste and water from your blood, but doesn’t fully replace everything your kidneys normally do.

Can a transplant help?

When your kidneys have failed, a transplant may also be a good option. Compared to dialysis, a working transplanted kidney does a better job of filtering waste, replacing your failed kidneys, and keeping you healthy.

However, a kidney transplant isn’t for everyone. Anyone interested in a kidney transplant should be evaluated by a transplant center, as some people may not be healthy enough for transplant surgery.

While a transplant is a good treatment for kidney failure, it’s not a cure. You need to take medicines daily so your body doesn’t reject the new kidney. You also need to see your health care professional regularly.

Getting a transplant

Your health care professional will refer you to a transplant center for tests to see if you’re healthy enough to receive a transplant. Living donors, such as family or friends, need to be tested to make sure they’re healthy enough to donate a kidney.

If you have a living donor, don’t worry about being a perfect “match.” Today, innovations such as kidney exchanges allow transplant surgeons to get around incompatibilities and make many living donor transplants possible.

If you don’t have a living donor, you’ll be placed on a waiting list to receive a kidney. You’ll have regular blood tests while you wait for a kidney. The center must have a recent sample of your blood to match with any kidney that becomes available. As soon as a kidney is available, you must go to the hospital to have your transplant. Donated organs need to be used in a specific amount of time or they may not be usable.

During surgery

Surgery usually takes three to four hours. The damaged kidneys are not usually removed.

If a family member or friend is donating the kidney, you’ll schedule the surgery when it’s best for you, your donor, and your surgeon. One surgeon will remove the kidney from the donor, while another prepares you to receive the donated kidney.

After surgery

Many people report feeling better right after having transplant surgery. For others, it takes a few days for the new kidney to start working.

You will probably need to stay in the hospital for several days to recover from surgery–longer if you have any problems. You’ll have regular follow-up visits after leaving the hospital.

If you have a living donor, the donor will probably also stay in the hospital for a couple of days, although probably less time than you will.

Transplant rejection

Transplant rejection often begins before you feel any symptoms. Rejection occurs when the immune system attacks the “foreign” transplanted kidney.

The routine blood tests that you have at the transplant center will reveal early signs of rejection. You may develop high blood pressure or notice swelling because your kidney isn’t getting rid of extra salt and fluid in your body.

If you think you may have transplant rejection, contact your health care professional immediately. Rejection can often be treated, but only if it is detected early. Your health care professional will treat early signs of rejection by adjusting your medicines to help keep your body from rejecting your new kidney. Rejection does not necessarily mean you will lose your transplant.

Additionally, when you’re taking anti-rejection medicines, you’re at a greater risk for infection.

Anti-rejection medicines can dull symptoms of problems such as infection. Call your transplant center right away if you aren’t feeling well or have:

  • a fever of more than 100 degrees
  • drainage from your surgical scar
  • burning when you pass urine
  • a cold or cough that won’t go away

SOURCES: MedlinePlus; National Institute of Diabetes and Digestive and Kidney Diseases: Kidney Transplantation; Opens new window National Kidney Foundation Opens new window

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The Beat Goes On | Heart Transplants Still a Marvel of Modern Medicine

On this day in 2001, a petite 44-year-old woman received a successful heart transplant at Ronald Reagan UCLA Medical Center, thanks to an experimental Total Artificial Heart designed for smaller patients.

The UCLA patient was the first person in California to receive the smaller Total Artificial Heart, and the first patient in the world with the device to be bridged to a successful heart transplant — that is, to go from needing a transplant to receiving one.

The 50cc SynCardia temporary Total Artificial Heart is a smaller investigational version of the larger 70cc SynCardia heart, which was approved for use in people awaiting a transplant by the Federal Food and Drug Administration in 2004 and has been used by more than 1,440 patients worldwide.

The 50cc device is designed to be used by smaller patients — including most women, some men and many adolescents — with end-stage biventricular heart failure, where both sides of the heart are failing to pump enough blood to sustain the body. The device provides mechanical support until a donor heart can be found

Nemah Kahala, a wife and mother of five, was transferred to UCLA from Kaiser Permanente Los Angeles Medical Center in March.  She was suffering from restrictive heart muscle disease and in critical condition.  Her heart failure was so advanced that repair surgery and other mechanical assist devices could not help.

Kahala was placed on a life support system called extra corporal membrane oxygenation, but this only works for about 10 days before a person’s organs begin to deteriorate.

With the clock ticking, doctors needed to buy time by replacing Kahala’s failing heart with an artificial heart while she waited for a heart transplant.  Her chest cavity was too small for her to receive the larger 70cc artificial heart.  However, under a one-time emergency use permitted under FDA guidelines, her doctors were able to implant the experimental 50cc device.

“Mrs. Kahala’s condition was deteriorating so rapidly that she would have not survived while waiting for a transplant,” said her surgeon, Dr. Abbas Ardehali, a professor of cardiothoracic surgery and director of the UCLA Heart and Lung Transplant Program. “We were grateful to have this experimental technology available to save her life and help bridge her to a donor heart.”

The artificial heart provides an immediate and safe flow of blood to help vital organs recover faster and make patients better transplant candidates.

After the two-hour surgery to implant the artificial heart, Kahala remained hospitalized in the intensive care unit and eventually began daily physical therapy to help make her stronger for transplant surgery.

Two weeks after the total artificial heart surgery, she was strong enough to be placed on the heart transplant list.  After a week of waiting, a donor heart was found.

“In addition to the high-tech medicine that kept her alive, Mrs. Kahala and her family exemplified how a solid support system that includes loved ones and a compassionate medical team practicing what we at UCLA have termed ‘Relational Medicine’ plays an important role in surviving a medical crisis,” said Dr. Mario Deng, professor of medicine and medical director of the Advanced Heart Failure, Mechanical Support and Heart Transplant program at UCLA.

Kahala was discharged from UCLA on April 18.

Since 2012, the UCLA Heart Transplant Program has implanted eight 70cc SynCardia Total Artificial Hearts. UCLA also participated in the clinical study of a 13.5-pound Freedom portable driver — a backpack-sized device that powers the artificial heart, allowing the patient to leave the hospital — that received FDA approval on June 26, 2014.

The FDA cautions that in the United States, the 50cc SynCardia temporary Total Artificial Heart is an investigational device, limited by United States law to investigational use.  The 50cc TAH is in an FDA-approved clinical study.

First Fully Contained Artificial Heart

On the same day, a patient was implanted with the world’s first self-contained mechanical heart after a 7-hour operation, a hospital in Louisville, Kentucky. The procedure was the first major advance in the development of an artificial replacement heart in nearly two decades.

The device, created by Danvers, Massachusetts-based Abiomed Inc., replaces the lower chambers of a patient’s failing heart with a plastic-and-metal motorized hydraulic pump which weighs 2 pounds (1 kg) and is about the size of a grapefruit.

It was the first artificial heart to be free of wires connecting it to the outside.

“This is the first time this has ever been done,” said Kathy Keadle, a spokeswoman at Jewish Hospital where the procedure was performed by University of Louisville surgeons Laman Gray and

Neither Abiomed nor hospital officials would disclose the name, sex or gender of the patients, all of whom are seriously ill.  The long-awaited surgery had been expected by June 30 but was delayed because the company had not completed patient screening.

Abiomed got U.S. Food and Drug Administration approval in February’s 2001 to test the device on as many as 15 patients, all of whom are too ill to be candidates for a heart transplant.  Unlike existing devices, which serve as a temporary solution to extend a patient’s life until a patient can secure a donor heart, the AbioCor heart is designed to be a fully functioning replacement heart.

The trial involved severely ill patients with less than 30 days to live, said John Thero, vice president and chief financial officer of Abiomed.

“This is not a bridge to transplant. There is a scarcity of donor hearts available,” Thero said in a telephone interview. “We are starting with patients who are at the ends of their lives. They are not candidates for transplant and are near death. Our goal is to provide them with a reasonable quality of life and an extension of life.”

Thero said the current candidates had a life expectancy of two months. “While the device is designed to eventually go much longer, if we were able to double someone’s life expectancy, we would be very pleased,” he said.

The 40,000 patients awaiting heart transplants far outnumber the number of hearts available, and a successful mechanical heart could fill a huge need.

Earlier versions of the artificial heart were bulky and provided limited benefit to patients.  In 1982, Dr. Barney Clark, 61, of Salt Lake City, Utah, received the first permanent artificial heart, known as Jarvik-7. He was bound to his bed by protruding cables, tubes and a noisy box-like air compressor during the 112 days that he survived with the artificial heart.

With the Jarvik-7 and other “bridge devices,” the outside connectors leave patients exposed to infection.  The AbioCor contains a small electric motor attached to an implanted battery and is designed to last for years. Patients could wear a battery pack or plug into an electrical outlet to recharge the heart’s battery.

A Brief History of Heart Transplant

Long before human-to-human transplantation was ever imagined by the public, scientists were conducting pioneering medical and surgical research that would eventually lead to today’s transplantation successes. From the late 1700s until the early 1900s, the field of immunology was slowly evolving through the works of numerous independent scientists. Among the notable breakthroughs were Ehrlich’s discovery of antibodies and antigens, Lansteiner’s blood typing, and Metchnikoff’s theory of host resistance.

Because of advances in suturing techniques at the end of the 19th century, surgeons began to transplant organs in their lab research. At the start of the 20th century, enough experimentation had taken place to know that xenographic (cross species) transplants invariably failed, allogenic transplants (between individuals of same species) usually failed, while autografts (within the same individual, generally skin grafts) were almost always successful. It was also understood that repeat transplants between same donor and recipient experienced accelerated rejection, and that graft success was more likely when the donor and recipient shared a “blood relationship.”

Alexis Carrel was a French surgeon and Nobel laureate whose experiments involved sustaining life in animal organs outside the body. He received the 1912 Nobel Prize in Medicine or Physiology for his technique for suturing blood vessels. In the 1930s, he collaborated with the aviator Charles Lindbergh to invent a mechanical heart that circulated vital fluids through excised organs. Various organs and animal tissues were kept alive for many years in this fashion.

Throughout the 1940s and 50s, small but steady research advances were made. In 1958, Dickinson Richards, MD, chairman of the Columbia University Medical Division, and Andre Cournaud were awarded the same Nobel Prize for their work leading to fuller understanding of the physiology of the human heart using cardiac catheterization.

In that same year, Keith Reemtsma, MD, a member of the faculty of Tulane University who later became chairman of the Department of Surgery at Columbia University Medical Center, showed for the first time that immunosuppressive agents would prolong heart transplant survival in the laboratory setting.

At this time, Norman Shumway, MD, Richard Lower, MD, and their associates at Stanford University Medical Center were embarking on the development of heart-lung machines, solving perfusion issues, and pioneering surgical procedures to correct heart valve defects. Key to their success was experimentation with “topical hypothermia,” the localized hyper-cooling of the heart which allowed the interruption of blood flow and gave the surgeons the proper blood-free environment and adequate time to perform the repairs. Next came “autotransplantation,” where the heart would be excised and resutured in place.

By the mid-1960s, the Shumway group was convinced that immunologic rejection was the only remaining obstacle to successful clinical heart transplantation. In 1967, Michael DeBakey, MD, implanted an artificial left ventricle device of his design in a patient at Baylor College of Medicine in Houston.

In 1967, a human heart from one person was transplanted into the body of another by a South African surgeon named Dr. Christiaan Barnard in Cape Town. In early December, Dr. Barnard’s surgical team removed the heart of a 25-year-old woman who had died following an auto accident and placed it in the chest of Louis Washkansky, a 55-year-old man dying of heart damage. The patient survived for 18 days. Dr. Barnard had learned much of his technique from studying with the Stanford group. This first clinical heart transplantation experience stimulated world-wide notoriety, and many surgeons quickly co-opted the procedure. However, because many patients were dying soon after, the number of heart transplants dropped from 100 in 1968, to just 18 in 1970. It was recognized that the major problem was the body’s natural tendency to reject the new tissues.

Over the next 20 years, important advances in tissue typing and immunosuppressant drugs allowed more transplant operations to take place and increased patients’ survival rates. The most notable development in this area was Jean Borel’s discovery of cyclosporine, an immunosuppressant drug derived from soil fungus, in the mid 1970s.

The cardiac transplant program at Columbia University Medical Center began in 1971 as part of an investigational surgery program initiated by Dr. Keith Reemtsma. At that time, Columbia University Medical Center was one of only a handful of medical centers in the nation actively engaged in cardiac transplant research. Columbia University Medical Center’s first cardiac transplant was performed by Dr. Reemtsma in 1977, when survival rates had begun to improve significantly. That patient survived for 14 months. Two additional transplants were performed that year. Initially Columbia University Medical Center accepted patients deemed too risky for transplantation by Stanford and the Medical College of Virginia, the only other medical centers in the country performing heart transplants.

Thanks to the persistence of pioneers in immunosuppression research, transplant patients have dramatically expanded life expectancies. The first immunosuppressant drugs used in organ transplantation were the corticosteroids. In 1983, Columbia University Medical Center became one of a small group of medical centers to initiate clinical trials of cyclosporine; approved for commercial use in November of that year, it is still the most commonly prescribed immunosuppressant used in organ transplantation. General information on the variety of medications that may be prescribed for you is found in the chapter on Medications in the section Care and Concerns after Your Operation.

In 1984, the world’s first successful pediatric heart transplant was performed at Columbia on a four-year-old boy. He received a second transplant in 1989 and lived until he succumbed to other health issues in 2006.

Also, in 1984, in Loma Linda, California, Leonard Bailey, MD, implanted a baboon heart into a 12-day-old girl who came to be known as “Baby Fae.” The infant survived for twenty days as the most famous recipient of xenographic transplantation. Throughout the decade of the 1980s and into the 90s, physicians continue to refine techniques for balancing dosages of immunosuppressant medications to protect the new heart yet allow the patient sufficient immunologic function to stave off infection. In 1994 a new drug, tacrolimus or FK-506, originally discovered in a fungus sample, was approved for immunosuppression in transplant patients. Newer formulations of cyclosporine now enable efficacy (effectiveness) at lower, less toxic dosages.

While research on transplantation issues continues, other techniques for the management and cure of heart disease are also under development. Some future directions include:

Coronary assist devices and mechanical hearts are being developed or perfected to perform the functions of live tissues. Artificial hearts have been under development since the 1950s. In 1966, Dr. DeBakey first successfully implanted a booster pump as a temporary assist device. Columbia’s cardiac surgeons have been instrumental in the development of a LVAD (left ventricular assist device) to function as a bridge-to-transplantation for those waiting for a new heart to become available. Columbia University Medical Center’s lead role in the REMATCH clinical trial helped to lead to approval for the the LVAD as a permanent, or destination, therapy as well.

In 1969, Dr. Denton Cooley implanted the first completely artificial heart in a human, again on a temporary basis. The first permanent artificial heart, designed by Dr. Robert Jarvik, was implanted in 1982. Numbers of patients have received Jarvik or other artificial hearts since, but surviving recipients have tended to suffer strokes and related problems.

There is a tremendous gap in the number of patients waiting for new hearts and the number of organs that actually become available. In addition to avoiding the immunosuppression and rejection complications of transplantation, success in clinical application of such mechanical devices can help resolve the issue of organ availability and thus, stakes are high to continue research in this arena.

Advances in immunosuppression have most recently involved the development and expanded use of polyclonal and monoclonal antibodies to counteract steroid-resistant rejection. Research continues into the management, reversal and avoidance of accelerated atherosclerosis in the transplanted heart, believed to be caused or aggravated by the required suppression of the body’s normal immunology. From the development of more powerful and specific immunosuppressants to new treatments for accelerated graft atherosclerosis, advances in the science of immunology appear to hold the key to expanding the success of heart transplantation in our treatment of end-stage cardiac disease.

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Title:  The Beat Goes On | Heart Transplants a Marvel of Modern Medicine




Becoming a Living Liver Donor: Evaluation, Risks, and Recovery

Charles Rosen, M.D., transplant surgeon at Mayo Clinic, discusses living liver donation, including the evaluation process, risks, and recovery. Liver transplantation enables recipients to enjoy prolonged survival with an excellent quality of life. Unfortunately, there aren’t enough deceased donor livers for everyone in need. Living liver donation could enable a patient to undergo transplantation much sooner than would otherwise be possible, helping the recipient avoid possible suffering and even death while on the liver transplant waiting list. At Mayo Clinic, prospective donors undergo an extensive evaluation process to ensure they are in excellent health and that their liver anatomy is suitable. Because we understand the decision to donate your liver can be very difficult, we do everything we can to provide the answers and privacy potential donors need to make a decision. The living liver donor operation is done at the same time as the recipient’s transplant surgery. Donors are admitted to the hospital the morning of the operation, undergo the procedure, and are observed in the intensive care unit overnight. Donors can expect to be hospitalized for about a week following the operation. Donors are instructed to restrain from strenuous physical activity and heavy lifting for about 8 weeks following the procedure. Growing the liver back requires a lot of energy, so donors feel considerable fatigue. After about 3 months, donors should feel completely normal again. At Mayo Clinic, we are committed to helping donors enjoy a full recovery and return to all normal activities.

For more information, visit http://mayocl.in/2zR5CD5.


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