YOU ARE NOT ALONE
Transplant Support Groups Target Specialized Needs
For patients and the people who love them, transplantation is a gift of life. It is also a journey, a long ordeal in which patients and families face obstacles every day that look impossible, feel unnatural and require tremendous sacrifice.
Many are finding strength in support groups. As demand rises, transplant professionals are tailoring these programs to the unique needs of their patients and families.
At the Cleveland Clinic Foundation, Judith Stowe, a chemical dependency counselor, facilitates therapy groups for patients recovering from drug and alcohol dependency. Some of the 30 patients participating in Stowe's program are working to quality for transplant eligibility while others are already candidates or recipients.
General demand and the clear success of the original group, formed in 1 990, prompted Stowe to create two more groups as well as separate groups for family members.
The program is supervised by a physician, Margaret Kotz, M.D., who specializes in addiction psychiatry. Dr. Kotz sees every patient as part of the initial chemical dependency/transplant evaluation, meets with them individually as needed and supervises ongoing group therapy treatment.
Steps to abstinence
The goals of these groups - preventing relapse, monitoring treatment compliance and providing emotional support - add up to a pretty tall order.
"Although survival issues, specifically the threat of imminent death, provide incentives for abstinence, relapse prevention is always an issue," Stowe explains. For these patients, who are required by hospital policy to attend the group, the Alcoholics Anonymous 12-step philosophy offers a valuable road map for recovery.
Ms. Stowe finds the relationships that develop among group participants crucial.
"As group therapist," Ms. Stowe says, "I keep things organized and focused, but our success depends on the supportive relationships developed within the group."
These patients are coping with at least two chronic illnesses - the transplant-related illness and the addictive disorder. The support group allows them to openly discuss their concerns regarding physical symptoms, survival issues and their inability to seek relief from addicting substances. These patients are also dealing with societal prejudices against what is popularly considered a "waste" of scarce resources on addicted persons.
The supportive relationships develop as patients work together to deal with the isolation and stigma of both illnesses. Participants develop a sense of belonging as they turn to each other for help and advice.
Concurrent with Cleveland Clinic's patient support group, family members have their own group. Meeting 1 1/2 hours biweekly, at the same time as the patient groups, family members share the triumphs and challenges associated with their loved one' s transplant and learn skills to cope with the challenges of addiction recovery.
"Family members are going through a lot, too," Ms. Stowe notes. Providing emotional outlets for caregivers is an example of the trend toward providing patients a full network of support. By acknowledging the emotional and practical needs of care givers and providing them with information and tools for coping, Cleveland Clinic is able to engage entire households in the patients healing process.
Pam Ryan, who received a liver transplant in 1995, has participated in the recovery group for three years.
"When I first came to the group I hated it," Ms. Ryan admits. "I didn't see myself as an alcoholic. My liver condition was not alcohol related. I had a good job and ' respectable position, but I was told I would not get a transplant unless I came to this group. I was very resistant. I felt like I didn't belong, that I was above these people. It took me a long time to realize I had a serious problem."
Ms. Ryan says the original group has become like family to her. "We share a lot. That's what the benefit of these groups is. These people really understand because they've been through it."
Now, Ms. Ryan views the support group as a permanent and necessary part of her life. "The troubles are never totally over. They will always be there. But you change from having an unmanageable problem to having a manageable problem."
Support for supporters
Across the nation, whether the group meeting consists of patients or family members, one of the primary issues everyone deals with is the side effects of prednisone and other immunosuppressants.
"Support persons feel great Frustration. The hospital staff requires the patient to learn a lot, but that pressure is also put on the support person. Family members are really under a lot of stress," says Patricia M. Coffey, heart and liver transplant social worker with Nashville's VA Medical Center.
In September 1994, she and co-leader Katrina Stokes, a bone marrow and renal transplant social worker, organized a support group for those who find themselves in the high-pressure role of support person.
Support persons not only have to learn to physically care for their loved one, but they often bear the brunt of extreme mood swings associated with transplant drugs. "Their loved one can be nervous, irritable and mean sometimes," Ms. Coffey notes.
Patients who, under normal conditions, would withhold emotions are suddenly given to uncontrollable crying or temper tantrums. Other times the side effects are just the opposite and patients are emotionally high, so thankful to have survived the ordeal that their energy level skyrockets. This sounds nice, but it can be exhausting for the support person.
Not only are support persons trying to maintain the physical and emotional strength it takes to nurse a loved one back to health, they must deal with their own feelings of powerlessness and inadequacy. They may feel put upon or feel guilty for being angry. And like transplant patients, they are often trying to cope with feelings of confinement and isolation.
"Sometimes you're going to feel like 'killing' your loved one," Ms. Coffey asserts, "and that feeling causes incredible guilt. But support persons need to understand that it's OK. They need to remember that they are important, too, and just because someone survived transplant, it doesn't mean they can be abusive. The patient needs to say they are sorry."
Groups like this let support persons know their feelings are normal. "These women are away From home, away from their own support people, and the transplant staff is putting a lot on them, too. They need to vent," Ms. Coffey says. "And they need to laugh, too."
This particular support group is for people who are in Nashville temporarily to help a loved one through the transplant period. Group participants eventually return to their hometowns, hopefully with a better understanding and tolerance of the transplant patient.
"Going home, getting back to friends and Family, routines and jobs, helps them return to a sense of normalcy," Ms. Coffey notes. "But while they are here I just hope we can touch their lives by supporting them through the stresses of transplant."
Never say diet
The phrase "support group" often conjures up images of people sitting around endlessly discussing their miseries.
This is not so during the weekly weight management group meetings at Jewish Hospital in Louisville, KY. During these support group meetings, laughter is common as members swap anecdotes and motivational sayings.
"To go forward you have to leave where you are. Yesterday was and today is Success comes in "cans". Failure comes in "can'ts".
What you won't hear in this room is the D-word. "Diet is a four-letter word," declares facilitator Janet Forsythe. "We say 'food plan.' Not 'diet.' We use the phrase weight 'management,' not weight 'loss.' We use the term 'activity,' not 'exercise.' And we don't say there's any food that's bad or good. It's all a choice."
Framing weight management in a positive way is vitally important.
"Weight management isn't about denying yourself things you enjoy," Ms. Forsythe says. "People need to see they are not losing something here. They are gaining something. They are gaining control."
For the patients in this group - which includes those awaiting evaluation, those working to qualify for the transplant waiting list, listed patients and transplant recipients - having control over at least one thing in their lives is vitally important.
"When your whole body turns against you it's a pretty hopeless Feeling," Ms. Forsythe says. "But a weight management program gives you back some choices. You may not be able to control that you need a heart or a lung transplant, but you can control your own behavior. There are choices you can make. And that means a lot when you think you've lost control of your life."
Ms. Forsythe and her CO-leader, transplant dietitian Kim Cooley, have been facilitating the weight management support group for pretransplant and pre-evaluation patients as well as posttransplant recipients at Jewish Hospital's heart and lung transplant program since 1996. As few as three and as many as 14 participants gather once a week for nutritional training, group discussions on emotional issues and to share victories.
Many of these patients have been battling weight problems all their lives, and most have been told by their transplant team that getting their weight problem under control is necessary if they are to qualify for transplant, be healthy enough to accept an organ when one does become available and to care For themselves and the new organ afterwards.
Ms. Forsythe says that although many group participants "know as much as a dietitian, they do not always make appropriate choices. You can know all the right things to do, but when you get angry at your loved ones or frustrated at your situation, you pick up a high fat or high sugar item and eat it."
With Ms. Cooley's assistance, participants design their own weight management program - defining their own rules and setting personal goals. By giving them a voice in these plans, patients are able to create a realistic and reasonable program that takes into account food preferences.
Target weight goals are based on professional recommendations from the nutritionist and are not made public.
As new members are initiated they are required to sign a "contract" in which they agree to attend the weekly meetings, keep a log of daily food intake and physical activity, meet with the dietitian and exercise physiologist when asked, follow the activity program recommended to them and achieve and maintain at least one pound weight loss per month until the target weight is reached.
Finally, the patient agrees to maintain the target weight once it is reached.
Although honoring the contract is completely up to the patient and there is no penalty associated with breaking it, Ms. Forsythe, Ms. Cooley and the transplant teams behind them view the contract as an important step in securing the emotional commitment of program participants.
"I haven't met anyone yet who we haven't been able to help who wanted to change," Ms. Forsythe remarks. "But they have to want to make these behavioral changes. It really is about choices."
Ms. Forsythe says her favorite motivational saying is, "If you work your program, your program will work for you." And she has the numbers to prove it: In the first quarter of 1997, the group as a whole lost a total of 147 pounds.
"We've also had two people transplanted directly because of the weight loss," Ms. Forsythe explains. "They would not have otherwise qualified for the donor organ they received."
Support groups, therefore, aren't just for boosting spirits. As exemplified by those at Cleveland Clinic, Nashville's VA Hospital and Louisville's Jewish Hospital, support groups give patients a practical working plan for staying on course and a solid family of empathizers-living proof that there is hope, that this is not impossible and, most important, that they are not alone.
By M. Cassandra Cossitt
UNOS Update, January/February 1998
A Controlled Trial of Exercise Rehabilitation after Heart Transplantation.
Authors: Kobashigawa JA; Leaf DA; Lee N; Gleeson MP; Liu H; Hamilton MA; Moriguchi JD; Kawata N; Einhorn K; Herlihy E; Laks H
Address: Division of Cardiology, University of California at Los Angeles School of Medicine, 90095, USA Source: N Engl J Med, 1999 Jan 28, 340:4, 272-7
BACKGROUND: In patients who have received a cardiac transplant, the denervated donor heart responds abnormally to exercise and exercise tolerance is reduced. The role of physical exercise in the treatment of patients who have undergone cardiac transplantation has not been determined. We assessed the effects of training on the capacity for exercise early after cardiac transplantation.
METHODS: Twenty-seven patients who were discharged within two weeks after receiving a heart transplant were randomly assigned to participate in a six-month structured cardiac-rehabilitation program (exercise group, 14 patients) or to undergo unstructured therapy at home (control group, 13 patients). Each patient in the exercise group underwent an individualized program of muscular-strength and aerobic training under the guidance of a physical therapist, whereas control patients received no formal exercise training. Cardiopulmonary stress testing was performed at base line (within one month after heart transplantation) and six months later.
RESULTS: As compared with the control group, the exercise group had significantly greater increases in peak oxygen consumption (mean increase, 4.4 ml per kilogram of body weight per minute [49 percent] vs. 1.9 ml per kilogram per minute [18 percent]; P=0.01) and workload (mean increase, 35 W [59 percent] vs. 12 W [18 percent]; P=0.01) and a greater reduction in the ventilatory equivalent for carbon dioxide (mean decrease, 13 [20 percent] vs. 6 [11 percent]; P=0.02). The mean dose of prednisone, the number of patients taking antihypertensive medications, the average number of episodes of rejection and of infection during the study period, and weight gain did not differ significantly between the groups.
CONCLUSIONS: When initiated early after cardiac transplantation, exercise training increases the capacity for physical work.
Contributed by Tx Jim Gleason, Collegeville, PA
Technology Changing Medical Ethics
By Brigitte Greenberg - Associated Press Writer
AP 3/27/99) On entering medicine, young doctors still affirm the Hippocratic oath. But some believe the ancient Greek ethical code needs updating after a century of research advances that have blurred once sharp lines of right and wrong.
Could Hippocrates have imagined cloning or machines that maintain breathing and heartbeat in brain-dead patients? The oath deals with euthanasia and privacy, but what about fertility treatments that produce eight babies, transplants of animal organs into humans, genetic engineering? What about Dr. Jack Kevorkian?
"Much of the challenge of our era is bringing our ethical compass up to date to match our technical expertise," said Dr. Linda Emanuel, director of the American Medical Association's Institute for Ethics.
The debate begins even before conception. Fertilizing an egg in a test tube has become almost commonplace. Sperm taken after death and frozen can be used to produce a child years later. A woman old enough to be a grandmother can bear a child. Fertility treatments recently produced septuplets in Iowa and octuplets in Texas.
"I think we as a society have made a value judgment in the reproductive area. We've made a choice not to interfere. We just choose to allow it all to happen," said Arthur Caplan, director of the Center for BiGethics at the University of Pennsylvania.
But Richard McCormick, a professor of Christian ethics at the University of Notre Dame, warned that in such cases, science already may have gone too far.
"In all matters touching life, the problem is that there have got to be limits," he said. "We have responsibilities. The question is drawing the line at the proper place."
Transplanting organs -- heart, lungs, kidney -- is now common, but the manner in which they are distributed has come under increased scrutiny, since some 4,000 people die each year in the United States while awaiting a transplant.
Currently, organs are offered first to patients near where they organs to the sickest patients first, no matter where they live. In response, some states have passed laws to keep donated organs within their borders, regardless of urgent need elsewhere.
Another solution, another ethical problem: Researchers responding to the shortage use organs and cells from pigs and other animals, even hearts from baboons.
"It makes you squeamish but it beats being dead," said Robert Levine, chairman of the institutional review board at the Yale-New Haven Medical Center. "Progress in medicine is an optional goal. If you don't want to pursue it, you don't have to. We don't force it on people."
Still, historians cite notorious exceptions, when the century's quest for medical answers was hell-bent, unchecked by Hippocrates' ethical brakes. Nazi doctors conducted horrific tests in concentration camps, and researchers in Tuskegee, Ala., withheld syphilis treatment from 399 black men to see how the disease progressed.
Most research, of course, aims to preserve life, and 20th century medicine's strides have done that dramatically -- with life spans in the United States now at 76 years, an increase of almost 30 years over the 1900 figure.
Yet even this progress casts an ethical shadow. With the introduction of respirators, ventilators, and other devices doctors have learned to sustain life at its most tenuous.
In 1976, a young woman named Karen Ann Quintan fell into a coma. After much soul-searching, her family went to court to seek and finally win the right to have her respirator removed.
Their fight ignited the death-with-dignity movement, which in recent years has taken shape as the right-to-die movement, largely centered on Kevorkian, a retired Michigan pathologist who has said he assisted about 130 people in committing suicide.
He faces a murder charge in a September 1998 death. Murder charges have been thrown out twice previously, three times he has been acquitted of assisted suicide, and a fourth trial ended in mistrial.
"Kevorkian is actually forcing people to discuss the issue, and I would say the trend line is toward greater acceptance," said Dr. Stanley Korenman, associate dean for ethics and medical sciences training at the University of California at Los Angeles School of Medicine. "I think that this is an evolving issue and it will evolve toward permissiveness."
Some ethicists find the idea reprehensible and argue that medicine's advances offer palliative care to ease suffering in virtually every case.
"What happens when we devalue whole sections of society, old people, sick people? It's a slippery slope," said Dr. Edmund Pellegrino, director the Center for Clinical Bioethics at Georgetown University.
Some ethicists worry that an ongoing government project to map the human genome, the common genetic blueprint, could give rise to other forms of discrimination, based on a person' s genes.
"It' s one thing to insert a gene to prevent fatal illness. It's another thing to select genetic makeup's," Korenman said.
Cloning research has raised even broader questions. Two years ago, Scottish researchers cloned a sheep named Dolly. Last year, a physicist in Chicago said he would attempt to create the first human clone.
Where does medical research go from here? Ethicists say it will continue to press the limits, prompting debates that will only get sharper.
"Medicine has gone far. I think it has crossed into areas where we often feel we have no handrails to hold on to," Caplan said. "But to say it's gone too far is to ignore the incredible benefits."
SangStat Joins Transplant Community to Support Immunosuppressive Drug Coverage Extension Act of 1999 ..
MENLO PARK, Calif.--(BW HealthWire 3/16/99) The Transplant Company(R) (Nasdaq: SANG) and transplant community leaders are supporting legislation that will help organ transplant recipients receive lifesustaining drugs under Medicare. Under current Medicare law, coverage for the cost of immunosuppressive drugs is provided for only 36 months or the first 3 years posttransplant.
Sponsored by Rep. Charles. T. Canady (R-FL) and Rep. Karen L.Thurman (D-DL), this legislation would eliminate the time limitation on Medicare benefits for the drugs of certain recipients. There are approximately 140,000 transplant recipients in the U.S. requiring daily, lifesaving imrnunosuppressive therapy from the time of transplant for the rest of their lives. The majority of these individuals take cyclosporine, which can cost more than $1,000 per month. This cost often represents only one portion of a transplant patient's total prescription needs, and many patients who do not have private insurance face financial hardship to pay for their medications. SangStat has already taken steps to facilitate an extension in Immunosuppressive coverage by offering a lower cost cyclosporine. In November SangStat introduced SangCya(TM) (Cyclosporine Oral Solution, USP (MODIFIED), 100mg/mL), the first therapeutically equivalent competitor to Neoral(R) oral solution, in the US cyclosporine marketplace. It can save patients approximately $1,200 a year on average, and $100 million per year for the health care providers.
"As the only pharmaceutical company solely dedicated to transplantation, we are pleased to support this initiative which may improve the lives of transplant recipients," said Jean-Jacques Bienaime, CEO and President. SangStat markets two products that address the key aspects of maintaining post-transplant health and graft survival: Thymoglobulin(R) (Anti-Thymocyte Globulin, (Rabbit))for treatment of renal transplant acute rejection and SangCya(TM) Oral Solution for long-term, cost-effective Immunosuppressive maintenance therapy.
SangStat Medical Corporation is supporting this legislation in conjunction with members of the Immunosuppressive Drugs Coverage Working Group, including the American Society of Transplantation, the National Association of Transplant Coordinators, Transplant Recipients International and the National Kidney Foundation.
Novartis Earns 23.2% Gross Profit
By Michael Reid
London (Dow Jones 3/16/99)--Underpinned by merger savings and robust growth in its key healthcare portfolio, Swiss life sciences group Novartis AG (Z.NOV) Tuesday unveiled a 16% rise in 1998 net income.
Novartis said it has now realized 89% of its three-year cost synergy's target arising from the 1996 merger of Sandoz and Ciba, lifting its operating margin to 23.2% from 21.8% as a result.
In its three divisions, healthcare sales rose 7%, agribusiness sales gained 4% and newly-formed consumer health sales rose 3%. Over sales rose an underlying 5% to CHF31.7 billion.
Net income rose to CHF6.06 billion from CHF5.21 billion, in line with market expectations.
Novartis shares, which were up around 1% earlier in the session, closed down CHF49 at CHF2534.00 on the back of profit taking.
Despite "difficult" market conditions for agribusiness in Brazil and Russia and for herbicide operations in the U.S., Novartis said it expects new products to keep growth "at least be in line with market development."
In its pharmaceuticals stable, it also expects new product roll-outs over the next two years to underpin growth at abovemarket rates and give it further exposure in the key US pharmaceutical market. The market accounts for about 35% of Novartis' sales. Pharmaceutical sales rose 6%, while generics sales gained 13%. Sales growth in the key US prescription market - by far the world's fastest growth area of pills, potions and lotions - was 12%.
Jerry Karabelas, head of Novartis' healthcare and pharmaceuticals division, told Dow Jones Newswires that new drugs are the key to this goal. "It's really new products which increase your exposure in the[US, not old products," he said.
Older products quickly lose market share once patent protection is removed and generic competition heats up.
Japan Rejects US Transplant Offer
Tokyo (AP 3/27/99) -- A US serviceman's offer to donate his brain-dead daughter's organs for transplants was rejected because the girl did not carry a donor card, Japanese news reports said Saturday.
The teen-age girl, whose name and hometown were not disclosed, was pronounced brain-dead March 15 after being treated for cerebral hemorrhaging m Hachinohe, about 340 miles northeast of Tokyo, the Yomiuri newspaper reported, citing hospital officials.
Her family's identity was also withheld, except that her father is with the Misawa Air Base in northern Japan.
The girl did not carry a donor card stating that she would donate her organs, so the Japan Organ Transplant Network refused to accept the donation, the Yomiuri said.
The girl's family flew her to the United States to donate her organs there, Kyodo News agency reported.
Hospital and US military officials were not available Saturday for comment.
Hormel Foods in Study of Pig Organ Transplants to Humans
Austin, Minn. (Dow Jones 3/12/99)Hormel Foods Corp. (HRL) and Quality Pork Processors, in conjunction with the Mayo Clinic, will implement a study to determine potential opportunities to use pig organs for transplant into humans.
In a press release Friday, Hormel said the joint research into cross-species transplantation is being conducted in the hopes of finding a solution to a shortage of human organs for transplant.
The study of pork slaughtering and processing workers at Hormel and Quality Pork Processing will help determine whether porcine endogenous retrovirus, which is found in all swine, is transferred to people with a history of extensive exposure to swine tissues and fluids.
Researchers at the Mayo Clinic, Rochester, Minn., will take blood specimens from and conduct interviews with 300 such workers.
Hormel expects the study to begin as early as next week.
(I'm very sorry, but I can't stop myself. Thus the literal beginnings of "Eat your heart out." Ed.)
Health Tips (A Collection of Miscellany)
UPI US & WorldFriday, April 9, 1999
Copyright 1999 United Press International. All rights reserved.
By LIDIA WASOWlCZ
UPI Science Writer
MIXED REVIEW OF LAW ON DOMESTIC VIOLENCE REPORTING:
A study of California physicians shows most have mixed feelings about a state law requiring suspected cases of domestic violence to be reported to authorities. While some believe legislation improves a doctor's response to providing care, many also note that mandatory reporting requires physicians to violate patient confidentiality, which could deter many patients from seeking care or could jeopardize patient safety.
"We conducted this study because intimate partner violence is a problem of high priority in the health care and legal communities. However, the California reporting law, enacted in 1994, has remained controversial," said study director Dr. Michael Rodriguez, a University of California, San Francisco, assistant professor of family and community medicine who treats patients at San Francisco General Hospital Medical Center. California is one of six states -- including Colorado, Kentucky, New Hampshire, New Mexico and Rhode Island -- with specific laws on reporting suspected cases of intimate partner violence.
FOOT, ANKLE INJURIES COMMON IN SPRING SPORTS:
Foot and ankle injuries are common in such spring sports as running, tennis and soccer. Sports enthusiasts can decrease their risk of injury by taking a few precautions, experts say. "Common foot and ankle injuries in spring sports include sprains, strains, stress fractures or bone injuries,"said Dr. Kaith Donatto, University of California, San Francisco, assistant clinical professor of orthopedic surgery and chief of the UCSF Orthopaedic Foot and Ankle Clinic. "Many of these injuries are overuse injuries -- injuries that result from inadequate conditioning or excessive training that places too much stress on the foot and ankle."
To minimize potential pain: warm up before any activity; condition your muscles; stretch for at least 10 minutes; choose proper athletic shoes for your foot type; use sportspecific shoes; replace shoes with worn tread; avoid running on uneven surfaces; limit uphill running; use brace or tape to prevent recurrent ankle injuries; stop if you're in pain; if injured, heal well before returning to the sport.
YOU DON'T NECESSARILY GET WHAT YOU PAY FOR:
A study suggests bottled water is not necessarily cleaner or safer than most tap water in the United States. And some may actually present a health threat to certain populations. The four-year study surveyed 103 brands of bottled water.
The study, by the Natural Resources Defense Council, showed 33 percent of the tested brands exceeded unenforceable bacterial purity guidelines or enforceable state standards in at least one sample. The contaminants included synthetic organic chemicals, bacteria and arsenic. The council wants the US Food and Drug Administration to upgrade its bottled water regulations. The study authors note that most water tested was relatively free of contaminants and was of high quality. They said bottled water is fine for most people, but the presence of bacteria in some of the samples might spell trouble for some people, especially those with weakened immune systems. Those might include infants, the frail elderly, AIDS patients, transplant recipients and those undergoing chemotherapy.
CHOCOLATE MAY BE GOOD FOR YOU:
A report presented at the American Chemical Society Annual Meeting in Anaheim, Calif., indicates chocolate may be good for your health.
Harold Schmitz, group research manager of Mars, Inc., says the research conducted at the University of California, Davis, and at the candy maker's laboratory indicates chocolate contains specific types of flavonoids, which function as antioxidants.
Flavonoids may inhibit the oxidation of "bad" LDL cholesterol, a contributor to heart disease, Schmitz said. Cocoa, the main ingredient in chocolate, may have antioxidant potential on par with such nourishing plant food as blueberries.
"We have shown that some chocolates contain both a great diversity and relatively high amounts of certain flavonoids, and thus may confer cardiovascular benefits when included in the diet," Schmitz told the meeting. ....
And, believe us, this issue was tough.!... stay tuned for details next month, when we report what can happen to your computer during a storm!
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