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Oriented to Thoracic Transplant Recipients -- October 2000

Sleep Apnea in Heart Transplant Recipients: Type, Symptoms, Risk Factors, And Response to Nasal Continuous Positive Airway Pressure

Emmanouil S. Brilakis, MD, et al

The term sleep apnea describes several syndromes characterized by disordered respiration during sleep that result in intermittent disruptions in gas exchange and sleep fragmentation. Encompassed syndromes include obstructive sleep apnea (OSA), central sleep apnea and mixed sleep apnea. OSA describes repetitive episodes of airflow cessation because of upper atrway occlusion, whereas central apnea is defined by lack of airflow and absent respiratory effort. The combination of obstructive and central features is termed “mixed apnea.” According to cross-sectional studies, sleep apnea is common in the general population. Sleep apnea has been associated with neurobehavorial deficits and cardiovascular diseases, including hypertension, arrhythmias including bradyarrhythmias, atrial fibrillation, and venthcular arrhythmias, and heart failure. However, the strength of these associations has been questioned recently.

Sleep apnea, both obstructive and central is common in patients with heart failure. Sleep apnea in heart transplant recipients has not been studied extensively. Some events of the posttransplant period (e.g., the weight gain with the use of glucocorticoids) could precipitate or exacerbate OSA, and OSA itself could adversely affect the transplanted heart. We did a retrospective study with follow-up telephone interviews of 17 heart transplant recipients with sleep apnea in a tertiary care institution to determine the type, presenting symptoms, and risk factors for sleep apnea, as well as the response to nasal continuous airway pressure (nCPAP).

[Abridgement of Materials and Methods]

Discussion

Sleep apnea, primarily OSA, is common in the general population. The most widely cited prevalence estimate tomes from a community-based survey of middle-aged Wisconsin state employees in which 4% of men and 2% of women were found to have OSA, defined as AHI greater than 5 and daytime sleepiness.2 prevalence of sleep apnea in heart transplant recipients has been reported to range between 2.5% and 43%. Sleep apnea was present in 11.6% of our population, yet its prevalence was almost certainly underestimated because universal screening was not performed. Only patients with typical OSA symptoms (n = 17) underwent polysomnography, and sleep apnea was found in all of them.

Underdetection of sleep apnea remains an important public health issue. Reasons for inadequate identification include the non-specific nature of many of the symptoms, the unavailability of collateral history from a bed partner, and the lack of formal sleep education for most health care providers. In the case of heart transplant recipients, the difficulties diagnosing sleep apnea may be compounded by the use of multiple medications, which may affect sleep, and the complexity of the posttransplant course.

Central sleep apnea is common in patients awaiting heart transplantation. Even in the setting of stable congestive heart failure, periodic breathing with central apneas followed by crescendo-decrescendo respiration (Cheyne-Stokes breathing) may occur in 40& to 50% of patients mostly during, stages 1 and 2 of non-rapid eye movement sleep. Central sleep apnea is thought to result primarily from an increased propensity of heart failure patients to hyperventilate, which maintains the Pco2, tenuously close to the apneic threshold. The ventilatory instability manifests clinically as paroxysmal nocturnal dyspnea, insomnia, and daytime sleepiness and is possibly a marker of increased mortality in heart failure patients. Cheyne-Stokes respiration usually resolves after heart transplantation. In this report and in others, OSA was the predominant form of sleep apnea post-transplant.

Upper airway obstruction during sleep is the result of a complex interaction of anatomic, neuromuscular and mechanical factors. The strongest risk factors for OSA in the general population are obesity and male sex. Obesity is thought to act through upper airway fat deposition and thoracoabdominal mass loading. Androgenic hormones may alter upper airway musculature or central respiratory drive. These risk factors were well represented in our heart transplant patients found to have sleep apnea. All except one were men and 16 of the 17 patients had gained an average of 10 kg since transplant. Conventional craniofacial risk factors for OSA were also common in our population.

Several features associated with the post-transplant period may influence the modifiable risk factors for OSA, as suggested by Klink and colleagues. Central adiposity due to glucocorticoid administration may increase the propensity to upper airway narrowing during sleep. Cushingoid features were present in 59% of our sleep apnea patients(10 of 17), and 82% (14 of 17) were receiving prednisone at the time of polysomnography. Diabetes mellitus simultaneously developed post-transplant in 24% of the patients (4 of 17). Diabetes has been implicated in the pathogenesis of OSA. The commonly used post-transplant combination of glucocorticoids and cyclosporine may negatively modulate insulin release and action, which could aggravate both OSA and diabetes mellitus. All of the patients, except one, were receiving cyclosporine at the time of polysomnography.

The treatment of choice for most cases of OSA is nCPAP, yet initial acceptance of and compliance with nCPAP have been problematic occasionally. Initial studies incorporating objective measures of compliance demonstrated that patients tended to subjectively overestimate nCPAP use and that actual use was frequently suboptimal. However, a more recently reported study of more than 500 patients with an AHI greater than 15 revealed an initial acceptance rate for nCPAP of 79% and an objectively documented acceptance rate of greater than The same authors reported the case of a history (eliciting the presence of snoring, 85% over 7 years. The poor compliance with nCPAP in our cohort is striking and difficult to explain retrospectively. The telephone follow-up disclosed that the majority of patients discontinued the use of nCPAP because of inconvenience. Admittedly, side effects from the pressure and nasal interfaces are common. Other potential explanations for poor compliance include insufficient, nCPAP titration during the split-night protocol or overshadowing of the importance of nCPAP by other post- transplant challenges. Finally, it is possible that prednisone dose tapering with the concomitant weight loss contributed to the spontaneous improvement of the patients' symptoms, obviating the need for nCPAP.

To the best of our knowledge, this study is the first to reveal a high prevalence (29%) of periodic limb movement disorder in heart transplant recipients. Periodic limb movements are repetitive, stereotypic actions primarily of the legs that cause symptoms as a result of sleep fragmentation. Periodic limb movements have been reported to occur in association with medical conditions, including heart failure. Hanly and Zuberi-Khokhar noted that approximately 50% of their severe, stable heart failure patients had periodic limb movements during sleep.

The same authors reported the case of a patient with heart failure and periodic limb movement disorder, who improved after heart transplantation. Conclusions regarding the impact of heart transplantation on periodic limb movements cannot be drawn from our data given the lack of pre-transplant polysomnography in our patients.

The repetitive intrathoracic pressure changes, hypoxia, and sleep fragmentation characteristic of OSA could negatively impact the transplanted heart. Heart transplant recipients with sleep apnea may be at increased risk for arrhythmias because the bradycardiac response to apnea and hypoxia is abolished.

Although there are no large-scale longitudinal studies on the consequence of sleep apnea on heart transplant recipients, data are emerging to suggest that it may be deleterious to both quality of life and survival: a heart transplant recipient with severe OSA was reported to develop cor pulmonale. Post-transplant survival appeared to be worse in our patients with sleep apnea, though the difference was not statistically significant.

Screening all heart transplant recipients with polysomnography, the standard for diagnosis, is impractical. Other methods for a rapid assessment of the risk for sleep apnea are necessary. In severe cases, a careful history (eliciting the presence of snoring, witnessed apneas, daytime somnolence, and morning fatigue) and physical examination (focusing on the presence of obesity, cushingoid features, and craniofacial abnormalities) may be enough to prompt referral for polysomnography. For less obvious cases, there are mathematical models that can predict the presence of OSA. One such model has been proposed recently by Kushida et al.

It is a morphometric model, which combines measurements of the oral cavity with BMI and neck circumference to estimate the risk for OSA. Routine use of such a model could increase the rate of sleep apnea detection in the pre-transplant and the post-heart transplant settings.

From this retrospective review, we conclude that sleep apnea, especially OSA, is common in hearth transplant recipients. Heart transplant recipients with OSA have typical risk factors and present with the classic symptoms. Compliance with nCPAP may be poor despite polysomnographic evidence of efficacy. Given the common thread of immunosuppressants, OSA may be an important management issue across the post-transplant spectrum.

Journal of Heart & Lung Transplantation, Vol. 19, No. 10,pp. 330-35


10 Things Your HMO Dr. Won't Tell You

SMARTMONEY.COM ­ 8/31/00

Following are some things your doctor won't tell you as you sit across from him on the examining table, backside to the breeze. He may not even admit them to himself - or if you're lucky enough to have a conscientious doctor, they may not matter much. Not every HMO uses all these measures to pressure docs into limiting care. But you can bet the contract your doctor signed with your HMO contains a few.

1. "If I order expensive treatments for you, the cost might come out of my pocket."

In the Texas case, Harris ranked physicians based on how much their patients cost the HMO. It then withheld up to 50% of the base pay of doctors who ordered a lot of care, with the holdback dangled as an incentive to get their numbers in line. Otherwise, they'd lose the money. Plus, doctors who prescribed more than a set limit for drugs had to make up as much as 35% of the excess, deducted from their pay.

2. "On the other hand, if I order up less care, your HMO might send me a bonus check."

Cynthia Herdrich, the Illinois patient in the Supreme Court case, waited 14 days after going to her HMO doctor for pain in her groin before getting the expensive test that diagnosed her problem. Unfortunately, by then her appendix had burst, infecting her abdominal cavity. After finding out that her HMO gave year-end bonuses to doctors who, among other things, economized on the use ofdiagnostic tests, she sued it, claiming it had violated its fiduciary duty to her as a patient. The Supreme Court held that an HMO's fiduciary duty doesn't stretch that far under federal law.

3. "That cheap HMO you signed up for pays me only $8, or maybe $10 to $12 a month to treat you, so I hope you don't come around too often." Under a system called capitation, many HMOs pay primary-care doctors a set amount per month for each patient assigned to them. Even that amount can drop if a doctor orders too many expensive referrals or hospital stays. So, sick patients become a financial burden.

Just ask Dr. Beatrice Murray, a pediatrician in Grand Rapids, Mich. She got a good reputation for treating the many problems of children born prematurely. That's what put her out of business.

"The number of our special needs cases just exploded," she explains. But the monthly stipend from the HMOs didn't. The amount varied by the child's age and the HMO contract, but for a two-year-old, she says she usually got $6 to $9 a month. Which might be fine if the child was healthy. Her patients weren't.

Dr. Murray says she tried to explain to the HMOs, but they seemed all too willing to lose her and her patients. The 52-year- old doctor lost her private practice this past May. She's now a salaried employee for a federally funded clinic for the poor.

4. "If you become too much of a financial drain, I have ways to make you walk."

Some doctors head off the problem by saying they don't treat a certain type of (read expensive) patient. Dr. Murray recalls the mothers who brought their triplets to her, complaining they couldn't find another pediatrician who treated multiples.

But sometimes the doctor already has a patient before he develops diabetes or cancer, or contracts AIDS. For those situations, there's "turf and surf," says a Texas lawyer representing seven patients who claim their health-care group discriminated against them because of their disabilities - illnesses like cancer, rheumatoid arthritis and heart problems. Doctors use tactics to grind unwanted patients into the turf, then surf them out to other doctors, says attorney Robert J. Provan, himself disabled from a bout with polio at age five.

In a lawsuit and separate complaint to the U.S. Department of Justice, Provan's clients say they were left alone in exam rooms for more than an hour, forced to come to the office to pick up prescriptions that had been phoned in to their pharmacists before and made to wait inordinately long periods to get an appointment. The San Antonio clinic involved denies their claims, as well as those of a former doctor who's also a plaintiff in the case. The doctor alleges the medical group fired him because he attracted disabled patients, then refused to cut corners on their care. Which brings us to...

5. "If I treat you too aggressively, I could get kicked out of the HMO."

Those contracts doctors sign with HMOs expire every one or two years. Plus, many have clauses allowing the HMO to terminate them without cause. A doctor with many contracts doesn't have to worry about losing one. But in areas where one HMO is dominant, a physician can watch his practice - and income - shrivel if the HMO deselects him.

6. "HMOs have sophisticated computer programs that let them track exactly how much my patient care is costing them. And they let me know."

Many doctors receive monthly report cards from HMOs they do business with, pointing out how much care they ordered for each patient, or spent for hospital stays, tests and specialists. Those who rack up more than the average - or more than some predetermined target - may get a call from the HMO. Or maybe they'll get pinched by the methods described above.

7. "Ordering expensive treatments for you could tie me and my staff up on the phone for hours with your HMO to get approval."

Dr. Linda Peeno used to be on the receiving end of such calls. Working as a medical reviewer for giant Humana, she admits she looked for reasons to reject coverage. After years of turning down treatments - including a heart transplant for a Nevada man who later died - she now works as head ethics consultant at the University of Louisville Hospital and as a paid consultant for David Boies, a lawyer better known for representing the government in its antitrust suit against Microsoft, but who's fast gaining a reputation for suing HMOs as well.

Dr. Peeno remembers the early days of HMOs when doctors "would rant and rave and call me names. They were much more strongly patient advocates than they are now," she says. Docs "became slowly compliant out of fatigue and utility."

8. "You might rate less of my time if you're with one of those penny- pinching HMOs."

Kenna Nevill, a 45-year-old Dallas woman, remembers asking her doctor to call her after office hours with a test result she was worried about, and being struck by his response. "He said, `You know, I wouldn't do that for my HMO patients. But I'll do it for you.'" She had recently switched from an HMO to a PPO, or preferred provider organization. "I remember feeling like a second-class patient with an HMO."

How conscious is your doctor of the kind of medical coverage you have when he sits across from you? The Texas doctor who treated Dudley said each of his patients' charts had a large stamp on the front indicating HMO, PPO or old-fashioned indemnity-type coverage.

9. "The drug I prescribe may not be the best one for you - but it's what your HMO will cover."

HMOs give doctors lists of the drugs they want used. And those lists can change in the middle of a patient's treatment, says Dr. Joe Cunningham, an internist in Waco, Texas.

That can mean a drug that's working might be replaced by one that won't, at least until the HMO can be convinced the more expensive medication is necessary. While this may not pose much of a problem for most patients, for those with life-threatening conditions - like seizures - it's potentially fatal, says Dr. Cunningham.

10. "If you have to go to the hospital, I may turn your care over to a doctor who works directly for the HMO."

The use of doctors called hospitalists to manage patients once they're in the hospital began in the early '90s, says Dr. Peeno. These specialists have even more incentive to deny you admission or hustle you out. They're on the payroll of the HMO and, explains Peeno, "It doesn't take anybody with much sense to figure out where the incentives are there."

Of course, it's naive to think that health care has ever been free of financial considerations. Under the old fee-for-service system, doctors had an incentive to provide more - perhaps harmful - care, says Dr. Charles M. Cutler, chief medical officer with the American Association of Health Plans, a trade organization representing managed- care plans. HMO incentives, he argues, are designed to "encourage physicians to think more critically about what it is that we do and to avoid waste - not to limit care."

Adds Dr. Thomas Reardon, past president of the American Medical Association, "I think a doctor generally does what is right for the patient and if it hurts his income, he just absorbs that."

But Dr. Cunningham, who worked on a Texas task force that studied such incentives, isn't sure that is always the case. "You don't want to walk in as a patient to a physician who is thinking, `You know, I've spent all my allocation for this month.'"


PVCS

My goodness how the tributes have been rolling in to the UpBeat Medical Center with the publication of our basic research on the insect repellant qualities of cyclosporine last month. At the risk of too much flag waving, we have to admit that there was even mention of a Nobel Prize. The fact that the suggestion came from the patient’s father should be weighted just a bit. There were others who suggested that the technician should be “freed from her bondage”, whatever that means. Then the most compelling statement, I think was the comment written across a returned copy that said, “Consider the source!” Now that can only be interpreted as a statement of how much respect the UpBeat medical Center has earned over time.

Research in progress
— Here is a preliminary report on the basis for our next research project.

Tired of cydosporine? How about scorpion venom? Scorpion venom?

Well it turns out that it contains a chemical that suppresses the immune system.

Researchers at the University of California, Irvine, are working with a chemical from scorpion venom that they believe may lead to a drug to treat autoimmune diseases such as rheumatoid arthritis, multiple sclerosis and lupus. In theory, it could also be useful in preventing rejection of transplanted organs. The synthesized version of the chemical, called TRAM, which suppresses the immune system’s T-cells, does not appear to have the same sort of side effects as other immunosuppressant drugs.

But don’t throw out the cyclosporine just yet. TRAM-34 may be 10 years away. Assuming it works as promised, it still has to be patented and financed and tested for Food and Drug Administration approval. “We’re just dong the basic scientific work right now.” (reORGANized Newsletter — The American Transplant Assoc. Sept. ‘00)

Now you can probably see where this is leading — UpBeat Medical Center is nothing if not at the forefront of “basic” research. We are presently looking for transplant patients willing to drop their cyclosporine and then be treated for anti-rejection with a daily scorpion bite. One of the inhibiting factors, in addition to a distinct shortage of volunteers, is the fact that there are no scorpions here in the swamps. In addition, the previously loyal principal caregiver, nee technician, nee wife has said rather firmly to the negative as to working on this project, “One scorpion, even in this county, and I’m gone!” Hummm, we do have a few black widows, wonder if they’d have the same effect...

Then there was the man arrested for stealing corneas intended for transplantation. He took the plastic foam package from a bus station in Boston. State Police said, “I think that it was just a crime of opportunity. I don’t believe he’s involved in any type of stolen human body part ring. He thought they were lobsters” (reORGANized) Well, then again perhaps he couldn’t clearly see what he was doing. ED.

Sleep Apnea - It’s wonderful that medical science continues to study we recipients in depth, as for example the sleep apnea study. Sleep apnea could be a dangerous situation, except that the researchers overlooked one very important variable —just about any transplant recipient on cyclosporine, of either sex, is bound to be up more than enough times per night to “hit the head” that they don’t possibly have the time to stop breathing and die between trips! Then again, imagine the principal caregiver confronted by a masked patient trailing tubes coming out of the bathroom in the dark of night!

Still could use some cartoons for the December UpBeat.


Organ Donation Increases

WASHINGTON (AP 9/12/00) - Organ donation increased by nearly 4 percent during the first half of 2000 after remaining flat in 1999, the government said Tuesday. This compares to 2,875 during the first six months of 1999, according to statistics compiled by the Department of Health and Human Service and the Association of Organ Procurement Organizations.

"Our efforts to raise awareness about the importance of organ donation appear to be paying off, but with 71,000 people on the transplant waiting list, we still have a long way to go," HHS Secretary Donna Shalala said in a statement. "I'm sure you'll agree, we don't want an epidemic."

Organ donation rose 6 percent in 1998, the first substantial increase since 1995, but was unchanged in 1999. Also Tuesday, HHS release guidelines to help hospitals and organ banks implement new rules that require hospitals to notify organ banks whenever someone dies in the hospital. The goal is to be sure that organ donation professionals evaluate each potential donor and talk with their families when appropriate.

Studies have shown that many potential donors are never identified or approached about donation.


 

More Evidence That Infections Cause Heart Disease — Also in Transplants

By Maggie Fox, Health and Science Correspondent

TORONTO (Reuters 9/19/00) - Researchers said on Monday they had more evidence that infections may help cause clogged arteries, but warned it is too soon for people to hope that they can pop a few antibiotics and skip the diet and exercise.

Several studies presented at a meeting of infectious disease experts in Toronto showed links between clogged arteries and infection with Chlamydia pneumonia bacteria, which cause respiratory and other infections, as well as cytomegalovirus, a common herpes infection.

Viral and bacterial infections are known to sometimes cause heart failure, but their role in other kinds of heart disease is more controversial.

Dr. Hannah Valantine, a professor of cardiovascular medicine at Stanford University, found evidence that cytomegalovirus (CMV) might cause inflammation that, along with high cholesterol, could cause clogged arteries.

She found that organ transplant patients who had a previous CMV infection were more likely to develop transplant atherosclerosis — a complication of having a transplant.

“If you take a bunch of heart transplant patients and screen them routinely using sensitive techniques for CMV, you will find evidence of atherosclerosis — thickening of the blood vessels ... during the time of infection,” Valantine told a news conference.

Also, when rats were infected with rat CMV and given heart transplants, they developed atherosclerosis. But giving them the antiviral ganciclovir, which battles CMV, prevented this, she told the American Society of Microbiology conference.

Atherosclerosis, or coronary artery disease, is caused when immune system cells latch on to cholesterol particles and try to pull them out through the blood vessel walls. They get stuck because they are too fat and the result is a “plaque” or clogged area.

Scientists think inflammation, perhaps caused by a bacterial or viral infection, might bring in more immune cells and worsen the process of atherosclerosis.

“It seems there is an interaction between high cholesterol and the inflammation caused by these viruses,” Valantine said.

Dr. Javier Nieto, an epidemiologist at Johns Hopkins University, said this did not mean that eradicating infections would eradicate heart disease. “This infection theory, even if proven, is not going to give people an excuse to have an unhealthy diet or smoke,” Nieto said.

“These things probably act in concert,” Valantine agreed. “I think there are a lot of different risk factors and they are all additive.”

Valantine said CMV routinely and harmlessly infects up to 80 percent of the general population.

In people whose immune systems are suppressed, such as those infected with the AIDS virus or the elderly, it can cause problems that include blindness. And it people with high cholesterol, she said it just might cause heart disease.

Evidence has been building for years that other microbes might contribute, too.

Marnie Fiebig, a graduate student in microbiology at Queen’s University in Kingston, Ontario, found chlamydia in 89 percent of tissue samples taken from 47 patients who had various operations for their clogged arteries. And of the same patients, 93 percent bad chlamydia in their blood.

Of 50 other patients who were the same age but who did not have atherosclerosis, 60 percent had chlamydia in their blood.

Now several studies are being done to see if antibiotics can reduce heart disease — one by Pfizer (PFE.N) to see if its drug Zithromax, known generically as azithromycin, can reduce atherosclerosis in heart attack patients.

But it can be very hard to eradicate a chlamydia infection. The U.S. National Institutes of Health is testing to see if a year’s treatment with azithromycin can help patients with coronary artery disease.

And Bristol-Myers Squibb (BMY.N) is testing its antibiotic Tequin, known generically as gatifloxacin, to see if patients give cholesterol drugs do even better if the antibiotic is added to the mix.

Italy-Organ Donation Symbol

ROME (AP 8/28/00) — Organs from a 7-year-old American slain by bandits in southern Italy in 1994 have helped keep at least five people alive, the boy’s father told an international organ transplantconference Monday.

The gifts by Nicholas Green’s parents have also helped foster organ donations in long-reluctant Italy, father Reginald Green said.

“The tragic story that hit my family in ‘94 has helped Italians understand the importance of organ donations,” Green told the International Conference of Transplantation.

They vacationed in southern Italy.

The Green family stunned an already shamed Italy by giving up his organs for transplant, which comparatively few in Italy did at the time. The boy’s organs were transplanted into several people, including one who has since named a son after Nicholas, Reginald Green said.

Northern Italy’s organ donation rate since has climbed to the European average, although the center and the south still lag far behind.

A Further Report from Dr. Goodpump’s Garage Doctors Announce New, Smaller Artificial Heart

PARIS (Agence France-Presse 9/7/ 00)British and U.S. doctors announced Thursday they had carried out the first permanent transplant of a revolutionary type of artificial heart, a thumb-sized pump that had saved a 61-year-old man from imminent death.

The tiny titanium device holds out hopes for millions of people around the world who have chronic heart problems, they said.

The US-made gadget, Jarvik 2000, comprises a pump about the size of a “C” battery and weighing just 3 ounces

The $100,000 invention does not replace the natural heart, Instead, it is attached to the left ventricle, the chamber that gives the heart most of its pumping power when it contracts.

In an operation in Oxford, England, on June 20, a Jarvik 2000 was implanted in the chest of a 61-year-old patient who was only expected to survive a few more weeks, the doctors said.

Within six weeks, the Jarvik had sustained the patient’s circulation, his heart and liver functions improved, as did his ability to exercise, enabling him to start living a normal life.

There were no more signs of heart failure, his blood pressure went down but without any adverse effects, and there was “negligible” damage to blood cells from the pump.

“Currently the outlook is dismal for patients with end-stage heart failure who are not eligible for transpiantion,” the team, led by Stephen Westaby, of Oxford’s John Radcliffe Hospital, reports in Saturday’s issue of The Lancet.

“Our laboratory experience and encouraging first clinical intervention with this small, silent intraventricular (device) suggests a potential alternative for many more patients.

“The device seems to be suitable for permanent use, bridge to transplant, or bridge to recovery.” The artificial heart has had a checkered history since it was first used in 1985.

Early optimism about these devices was dashed when the early models proved too big and cumbersome, their pump action caused blood clots and infections developed because of tubes that linked them to machines outside the body.

As a result, they only became used as temporary stand-ins, to help severely ill patients survive until they got a heart transplant.

French and Israeli doctors, in separate ventures this year, have carried out permanent transplants on two elderly patients, using much heavier devices weighmg 3.2 pounds and 10.25 ounces. The Israeli patient died less than 48 hours later, although the heart had functioned correctly.

The Jarvik 2000 — made by Robert Jarvik, who made the Jarvik 7, the first artificial heart -- is the smallest artificial heart, harnessing advances in miniaturisation to avoid the need for external tubes or implanted batteries.

The pump pushes the blood around in a continuous flow rather than mimick the in- out action of the heart.

It has a slender electrical power cable that goes up through the chest and neck to a titanium “pedestal” that is screwed to the skull, in the hallow behind the left ear.

The cable then goes out through the skin, connecting to a controller and a battery about the size of a mobile phone, which can be worn unobtrusively on a belt or waistcoat.

The controller enables the pump’s speed to be varied from 8,000 to 12,000 revolutions per minute, delivering a blood flow of 6.6 to 17.6 pints per minute depending on the required exertion.

The device can be switched off without risk for up to five minutes.

Three other patients were given the Jarvik 2000 temporarily while they awaited transplants, the Radcliffe Hospital’s spokesman, Stephen Argent, told AFP.

The unidentified recipient of the June operation is the first of six people in whom the Jarvik 2000 will be tested as a permanent implant.

“We are very optimistic” about the Jarvik 2000, he said. “We think it’s going to save millions of lives around the world.” The institutions involved in the project are the Radcliffe Hospital; the Texas Heart Institute in Houston; Jarvik Heart Inc. of New York; and the Royal Brompton Hospital and National Heart and Lung Institute at London’s Imperial School of Medicine.

Contributed by Tx Dave Cannavo

First-Ever Transplant Telemedicine Program Brings...

San Francisco, (BW HealthWire 9/13/00)— A pilot telemedicine program initiated by California Pacific Medical Center’s Kidney and Pancreas Transplant Team is the first of its kind in the nation to significantly reduce the amount of traveling for patients who live far away from the medical center.

The program, which connects Fresnoarea patients to their San Francisco-based transplant team, provides “virtual visits” in which patients communicate via live television with a kidney transplant physician, social worker or nurse coordinator for check-ups and discussions about medication side effects, symptoms, lab work or emotional issues. Already, more than 25 patients have participated in the program.

“With telemedicine, I can talk to my doctor in San Francisco about post- transplant side effects and my overall health through the television,” says Bernice Woods, a Fresno resident who received a kidney transplant in February 2000. “I’ve had two telemedicine sessions and it’s just like talking to a doctor in person -- plus a lot more convenient than having to drive to San Francisco.”

“Telemedicine enables us to alwaysbe within reach of transplant patients — even if they’re 200 miles away from the Medical Center,” says Steven Katznelson, MD, a nephrologist with California Pacific’s Kidney and Pancreas Transplant Program. “TMs technology, along with our monthly visits to outreach clinics in Northern California, makes it easier for patients to see their transplant team and offers the very best care and most convenience possible.”

The telemedicine technology uses cameras mounted on televisions in San Francisco and Fresno and three ISDN lines connecting the two units. The system allows for immediate transmission of crisp images and sound. Patients sit in front of the television, while a microphone connected to the camera picks up their voice and relays it to the other site instantly, so communication occurs in real time.

While the actual transplant surgery is performed at California Pacific Medical Center in San Francisco, the addition of telemedicine and local doctor visits takes some of the hassles out of life with a new organ.

In addition to telemedicine, transplant team staff reach out to patients Through monthly clinics in Fresno, Modesto, Roseville and the East Bay as well as periodic visits to the South Bay, Reno, Eureka, Redding, Fairfield, Hawaii and the Pacific Rim. The telemedicine technology is not intended to replace Outreach clinic visits, buL rather expands patients’ accessibility to their physicians and other experts.

(Ed. What is it about kidney transplants that always puts them first in something new? Oh, must be because if the trial fails they can still walk and talk!)

Cardiac Camp

By Matthew Fordahl - AP Science Writer

HOWLANDS LANDING, Calif. (AP 9/4/ 00) — Four months after her transplanted heart briefly stopped beating, 14-year-old Carina Gonzales pulls herself up a 20-foot wall at summer camp.

John Klymshyn, whose heart condition keeps him out of P.E. class, snorkels and in the ocean off Santa Catalina Island. And Adam Loyd, after eight surgeries and counting, bums up the dance floor.

For five days each summer, children with broken hearts can forget about their cardiac problems and become regular kids at a Catalina Island camp organized by volunteer doctors and nurses.

“I’m just having so much fun I don’t think about being sad,” said Carina, an Arizona girl who may soon be listed for another heart transplant because of the rejection of her first.

Camp del Corazon -- “of the heart” in Spanish — was founded in 1995 by a pediatric cardiologist and nurse who realized that more than surgery and pills were needed for children who have lived most of their lives in the shadow of death.

This year, the program comprises two five-day sessions separated by Labor Day. More than 200 children ranging in age from 7 to 17 paid nothing to camp with three doctors, more than 20 nurses and dozens of volunteer counselors.

Though some campers have overcome their heart problems, others like Carina face more transplants, surgeries and other health hurdles. A few must be fed through tubes; one a few years ago had to be carried in a wagon.

Because of their medical conditions, most have never been to camp before, said Dr. Kevin Shannon, one of the co-founders and a pediatric cardiologist at the University of California, Los Angeles.

“It’s not different from a regular summer camp other than the nurses, the medication and the medical backup,” he said. “We consciously try to avoid trying to make this have anything to do with the fact that they have heart disease.”

Nearly any child with a heart condition is welcome. Most enjoy a full range of activities including volleyball, music, hiking, kayaking, crafts and swimming.

Shannon and cardiology nurse Lisa Knight started the camp afterá young patient said he was embarrassed by scars from three operations. After Knight made a few phone calls, they were organizing the first session for 49 campers.

“I thought it would be good if he could meet other kids with heart disease,” Shannon said. Only a handful of other camps around the nation cater to children with heart disease, and very few are free.

Companies, individuals and organizations fund the program, with a budget of more than $150,000. Doctors and nurses from UCLA and nearby hospitals donate their time — as do the counselors.

Shannon says the challenges are significant: Parents have to be convinced the camp is safe, money must be raised and arrangements made for medical equipment or helicopters to airlift sick children when the need arises.

Then there’s seasickness while ferrying the children to the sheltered island cove 22 miles off the coast of Southern California.

“The first year, everybody got sick. I was terrified,” Shannon recalled. “All these children with heart disease getting dehydrated, their electrolytes abnormal. I was thinking someone’s going down on this. But everybody did fine.”

So far, no children have died or even become seriously ill at the camp.

The camp infirmary, which rivals a hospital emergency room, is loaded with boxes packed with pills and thick binders of medical histories. It also has three beds, a defibrillator and other equipment to keep hearts pumping.

“They’re a lot closer to medical care than they would be if they were ... playing in their back yard,” Shannon said.

Though the medical staff and counselors do not focus on heart problems, the topic arises among the campers. At night, Shannon said he hears campers talking about having chest tubes removed and other procedures.

But the children seem more excited to talk about the climbing wall or “eagle’s perch,” where they are harnessed before leaping off a pole suspended high off the ground.

In keeping with the true camp experience, there are no soy burgers or fruit cups here. “We roast marshmallows. We eat bacon. We salt our eggs,” Shannon said.

The camp attracts volunteers like Linda deBeaumont, a 42-year-old mother who heard about the program while awaiting her own heart transplant.

“I think of what I’ve paid to send my kids to camp,” she said, “and I know they don’t get half of what these kids get out of this — a chance to just be kids, to get away and to not even think about being sick.”

On the Net: Camp del Corazon: http://www.campdelcorazon.org

American Heart Association: http:// www.americanheart.org (Ed. What a simply Super idea!! Let's hope the AHA is actually involved, they‘ve been very much on the sidelines of heart transplantation for some reason.)

U.S. Blood Shortage Puts Operations on Hold

By Deborah Zabarenko

WASHINGTON (Reuters 9/19/00) - A critical shortage of blood has forced the cancellation of elective surgeries in Los Angeles, Philadelphia and Atlanta, the American Red Cross said on Tuesday.

Both the Red Cross and America’s Blood Centers (ABC), which together represent virtually all U.S. blood banks, reported severe shortages at a season when blood supplies are usually adequate.

“This is one of the worst ones that the Red Cross has seen,” Red Cross President Dr. Bernadine Healy said in a telephone interview.

Healy said 32 of her group’s 36 regions were on appeal, which means either they have less than a day’s supply of blood available or they simply have inadequate supply to meet hospital demand.

Those cities in urgent need include Los Angeles, Baltimore, Detroit, St. Louis and Philadelphia, according to the Red Cross. ABC said there were severe shortages throughout the Northeast.

She said the Red Cross had advised hospitals to cancel elective surgery in Los Angeles, Atlanta and Philadelphia.

The reason for the shortage is increased demand, much of it due to the increased number of complex therapies such as chemotherapy, organ transplants and heart surgeries, which require large amounts of blood and blood products, both groups said.

Just one liver transplant can use 120 units of donated blood, ABC’s Melissa McMillan said by telephone.

The increase in demand far outpaces the increase in blood donations, Healy said, with donations increasing annually by about 3 percent and demand growing at 6 percent.

The Red Cross needs 80,000 units on hand daily, but now has only about 36,000 a day, according to Healy.

“People often forget for how many medical procedures blood is a vital necessity,” Healy said.

Blood shortages are common during the summer months, when schools and businesses are less likely to have blood drives, according to spokeswomen for both the Red Cross and ABC.

But a crisis in September is unusual and alarming, McMillan said.

“Shortages at this time of the year are uncommon,” said McMillan said. “It’s a bit frightening, to be honest.”

The Red Cross got its message across in a stark advertisement in Monday’s Washington Post: “URGENT: BLOOD APPEAL. This is a crisis. More patients need blood and we urgently need your help. Please, give blood right away.” Those who wish to donate blood can Call the Red Cross at 1 800 GIVE LIFE, or ABC at 1 888 BLOOD 88 or Web site: www.americasblood.org.


Disclaimer: The material in this document has been collected by Don Marshall and friends. New ideas and materials are welcome all the time. Nothing herein is ever to be construed as medical advice. As a policy, Upbeat is sent upon request to heart and heart/lung transplant recipients and other interested parties. Donations of $15 per year, or more, from TX recipients, if not a burden, are vital. From all others the donation is specifically requested. The date shown after the name on the address label indicates the last time a donation was received. Please make checks payable to Don Marshall, as we cannot afford to become nonprofit. Send materials, letters, or checks to:

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