Oriented to Thoracic Transplant Recipients -- November 1996

The UPBEAT! Archive


The end had come a little quicker than I expected. I was so short of breath, so suddenly, that it was obviously time to either start begging for retransplantation with all its potential difficulties, or just face the end calmly, accepting the fact it would now arrive rather quickly. The trail stretched ahead, and more to the point, upward. The little map we carried rated it as a beginner's trail. The principle Caregiver was following her now wheezing patient on a "nature walk" while we took a week's vacation to look at the leaves in West Virginia and North Carolina.

But instead of the beauty of the leaves, my mind was working quickly on listing the things that needed to be done before my expected demise from the obvious transplant coronary artery disease (TCAD) of which my immediate suffering was all too apparent. I found that by stopping every 20 feet or so I could then continue my labored trek up the hill.

Much later I learned that the Caregiver was in many ways making the same plans as I, mentally, although she couldn't seem to get over the first hurdle- how to find and obtain help in the seemingly endless woods, and if no help was available, how in the world to get the patient's prednisone bloated body back to civilization.

Finally, the path leveled off along a ridge and I was able to pick up the pace a bit to something approaching a slow walk. Although what was supposed to be a measured mile walk out and return, seemed to still be endless. When the opening mile ended at the highway, the patient elected to return via the paved surface as being "easier walking for Caregiver."

Except for an initial flurry of, "Are you all right? Are you sure you're going to be all right?" there was not much discussion of the event for the rest of the day, which was devoted to further "leaf peeping" at the views provided by automobile.

It was only near the end of the day as our car wound through the woods and open vistas that I almost unconsciously began to read the small roadside signs - Hunter's Point El. 3890, Bull Frog Tunnel El. 3975, and finally as we approached our starting point and the location of our earlier walk, Mt. Pisgah Inn El. 4220. It suddenly dawned on me. With a smile of relief I realized that I had been a typical "flatlander" victim of the high altitude/ lower oxygen, shortness of breath on exertion - not coronary artery disease!

Be alert, but beware the overblown fear factor. For example, as a Tx recipient, that spot on your face could be skin cancer, but there are a dozen things that are less harmful and more likely. Shortness of breath is taught to be a feared condition in heart recipients, but most such events are mostly just standard operating procedure. It's easy to become hypochondriac as a transplant recipient, and some of that element is probably to the good as far as compliance is concerned. But instant self-diagnosis based on personal feelings, emotion, and that ever present" a little bit of knowledge is a dangerous thing", is nothing more than an expression of fear of the worst. Remember the facts and report them to your transplant team. Let them worry. You take it one day or one week, or even a year at a time. D.M.


by Bill Krasean - Kalamazoo Gazette, 10/15/96

At any given time, 40,000 Americans are waiting for an organ transplant. Every day 10 of them die. It is a world ripe for abuse.

"The truth is when a commodity is in such short supply, you see black market forces emerge," said Dr. Darryl Fisher, a cardiac surgeon turned mystery writer. "There is a desperate shortage of transplantable organs."

With that as a backdrop, Fisher has written "The Broker," a fictional medical thriller about a young heart surgeon in Dallas who gets involved in a heart procurement scheme that turns ugly.

Dr. Cassy Baldwin is the young surgeon who is suspended after a patient she pronounces dead suddenly stirs back to life. Subsequently offered a job by a wealthy Mexican named Tenoch - who had accompanied the revived patient to the emergency room - she head s to Mexico City and an international heart donor program only to become entangled in a nightmare as she and her 8-year-old son become targeted as black market heart donors themselves.

"The book is a metaphor, "said Fisher in a telephone interview. "As Dr. (Denton A.) Cooley wrote in the book's introduction, this is fiction that so closely mirrors reality that it is disturbing."

Fisher said his mission in writing the book is to encourage people to talk about being donors before they die so that if the unfortunate situation arises where they can become a donor, family members will be comfortable agreeing to donations.

"I want people to be aware that there is a crisis in this country, "he said. "There are 15,000 potential donors each year. Only 5,000 donors are used. Each of those 10,000 people who didn't donate could help up to 50 different people."

Former Pennsylvania Gov. Robert Casey received a heart-lung transplant in two weeks while others wait years. Do the rich and famous benefit unfairly? [I hope this "cheap shot" is something inserted by the newspaper writer, not the author. - Ed.]

Fisher said he had heard about a Saudi prince whose representatives contacted a heart transplant center in the United States. They said they were bringing the prince to the city that weekend and wanted to schedule transplant surgery for the following Monday.

The physicians say, sure, bring the prince. But it could be days or weeks before a heart would be available. No, they said, they were bringing the donor with them.

Fisher cited an article in the British journal The Lancet reporting that 130 patients from Oman and the United Arab Emirates traveled to Bombay, India, where they bought, through brokers, kidneys from donors for $2,600 to $3,300 each.

There are reports that prisoners executed in China are used as organ donors, he said.

In the United States, he said, the Texas Medical Center was recently sued by a former intensive care nurse alleging that certain people were given faster access to transplant organs than others.

Fisher said that organs cannot be stored. A heart, for example, lasts about six hours after it is removed from the donor. Livers last up to 12 hours and kidneys 24 to 48 hours. With such short shelf-lives, organs must be removed and transplanted as quickly as possible.

For that reason, organ procurement systems are regional - West Coast donors are simply too far away from Midwest or East Coast recipients.

"That's why I picked Dallas and Mexico City for the novel," he said. "I needed cities relatively close with one city outside the rigidly controlled organ procurement system.

"This is such an important subject and there is such a desperate need that the only way to dispel rumors is to talk about the potential for abuse.

"'The Broker' is fictional, but it's not too far from reality. I hope the book is not a prophecy."

Contributed by Dr. Don Marshall, Kalamazoo, MI


by Bard Lindeman

Q: My husband is sick with coronary artery disease and I wonder what his chances are of securing a donor-transplant. He's 72.

A: Fewer than 5 percent of all heart transplant recipients, in any one year, are 65 or older - and at present, there are 3,595 patients on the national waiting list.

Further, there is a shrinking donor pool, according to the specialists I spoke with. Not long ago, The New York Times reported that "hearts are so scarce that doctors ration them for the young and the healthiest, who can presumably use the organs the longest."

All this, plainly, is negative news. For the positive side to the story, we travel to Los Angeles, to the Medical Center of the University of California. Here, Dr. Hillel Laks, chief of cardiothoracic surgery, is conducting an alternative program for older , sicker patients.

In summary, he takes donor-hearts that other programs wouldn't accept and, with the patient's knowledge and consent, transplants them into men and women in their 60s and 70s. To date, he has performed some 20 procedures, with a 75 percent survival rate for one year. According to the United Network for Organ Sharing, the national survival rate is 82 percent for one year.

Asked why he treats his older/sicker patients, the surgeon answered that he believes they were being unfairly denied access to the national transplant system. He began his program in 1994 and surprisingly, it has received little publicity.

The medical question and complexities that surround the experiment are both numerous and profound. For example, a heart transplant will cost around $80,000, and that does not include follow-up care. Critics of the UCLA program say this is too much money, an d time and medical talent, to extend the life of a 70-plus person for one year, or three years, or five years.

There are other voices, however, who argue the pioneer work of Laks points up the fact we have an unfair, two-tier medical system, with the young favored above the old. Dr. Arthur Caplan, an ethicist at the University of Pennsylvania, believes the day is coming when some patient, age 70 or older, is going to file a lawsuit charging discrimination, demanding to have "an organ from the good list," the one maintained by the federally supported United network for Organ Sharing.

(This column is interested in your views on the controversial topic: "How old is too old to receive a transplant?" We would appreciate hearing from patients who have received a transplant, or are awaiting a transplant. Write please to Bard Lindeman, 5428 Oxbow Rd., Stone Mountain, GA.)

North County Times 9/15/96 Contributed by Tx Jim Nekitas, San Diego, Age 71

In the interest of sharing thoughts and information, if you are a Tx recipient, please take a few minutes to fill in this sheet and then return it to: Don Marshall-UpBeat, PO Box 482, Mathews, VA 23109 by 12/16/96 Thanks.


1. What kind of transplant are you wearing? Heart __ Heart/Lung __ Lung __ Other____ What other? __________

2. How long have you been renting your organ? 1 yr/less_____, 2 to 5 yrs._____ , 6 to 10 yrs._____ ,11 to 15 yrs. __, more than 15 yrs______

3. Was your initial "poison" Sandimmune, but you have now been switched to Neoral? Yes____ No _____

4. Was an attempt made to wean you off prednisone? Yes __ No __

5. If "yes" to #4, was the attempt successful? Yes __ No __

6. My principle transplant coordinator - a. Walks on water____ , b. Doesn't walk on water, but paddles a real good canoe____ , c. Keeps good records and when there is usually polite ____, d. Has to mouth the words on the funny pages ____

7. My transplant center - a. Seems to be on the cutting edge of the field __., b. Tries harder,____ c. Often worries more about getting their bills paid than my welfare. ___, d. Has a heated clinic. ___

8. Simply stated, I find the following five things to be the most distasteful side effects of being a transplant recipient (1 worst thru 5)

1. _____________________________

2. _____________________________

3. _____________________________

4. _____________________________

5. _____________________________

9. I take regular part in a cardiac rehabilitation exercise program. Yes __ No __

10. Regardless of question #9, I exercise a. For an hour 3 times a week or more____, b. Well, probably twice a week at least by walking____, c. I still say golf and shopping are strenuous exercise____ , d. You don't realize how difficult it can be to find the remote in our house! ____

11. My diet is A. "heart wise" to the tee __, B. Almost perfect, just an occasional meal or snack "off limits"___ C. Diet? No, I'm not on a diet __, D. It doesn't matter what I eat or how much, it's all the drugs fault __

12. Yes, I worry a lot about my health. Yes __ No __

13. All things considered, if I needed and was offered a retransplant I would accept it. Yes___ No ___

14. OK, it's down to zero hour and the only retransplant you qualify for is an experimental xenotransplant. Would you accept in the name of advancement of the science of transplantation? Yes __ No __

15. I take all my drugs A. on time, in correct amount, without fail.___ , B. almost never miss a dose __, C. Well some drugs give me problems so sometimes I skip them without harm ____, D. Look, I'm alive aren't I? ___

16. After my first year, I've had a biopsy every 3 mos. __, 6 mos.___, year __., more than 1 year___

17. After the first year my transplant center does an angiogram no less than A. annually __, B. Other __ What other?____

18. After the first year, unless we know we have something wrong, we are seen regularly in clinic A. once a month___ B. once/3 months___ C. once/4 months___ D. twice per year___ . E. Other ___

19. My transplant physician A. Talks directly with God __ B. Can get through to God by FAX __ C. Writes accurate prescriptions __ D. Could use our prayers __

20. Since transplant my sex life has been satisfactory. Yes __ No __

21. I honestly expect to live another A. year __ B. 2 to 5 years __ C. 6 to 10 years ___D. 11 + years or a normal life expectancy for my age____

22. In general I hold Sandoz Pharmaceutical Co. A. In very high regard, I owe them my life __ B. To be very professional, but aloof from their valued customers __, C. Nothing better or worse than any corporation trying to wring the most possible out of the public for their products __ D. There ought to be an investigation with penalties invoked!___

23. In general, I feel that UNOS is properly listing patients and fairly allocating those organs that become available. Yes __ No __

24. In my opinion, a transplant is merely a medical procedure, as opposed to what some are calling a "miracle second chance." Yes __ No __

25. If I were to be transplanted again, I would rather go to a different transplant center than the first time. Yes___ No___

26. I regularly attend a support group meeting either at my Tx Center or locally. Yes __ No ___

27. I would like to attend a regular support group meeting, but nothing is available either at my center or locally. Yes__ No __

28. Since transplant my financial condition has been A. No problem, and never has been___ B. Some concern, but we're OK___ C. Just about the minimum low limit available __ D. We're usually in financial problems, or worse __

29. My medications have been paid for A. totally by insurance or equal __ B. combination of insurance and relief grants, etc.___ C. Combination of insurance and cash out of pocket __, D. by all cash out of pocket and/or loans etc. __

30. At this point in time there seems to be enough current transplant information readily available via Internet, magazines, newspapers and TV that UpBeat probably could be discontinued. Yes___ No___

31. Are you troubled often by ringing in your ears? Yes __ No __

32. Do you have to get up more than once or twice during the night? Yes __ No __

33. Since your transplant, have you held a full time job? Yes __ No __

34. Are you working full time now? Yes __ No __

35. If I had one wish that would be granted to make life easier for heart/lung transplant recipients (which?) it would be:




36. There's a couple of things you forgot, I'd like to see you ask if you do it again:





Remember, there's no December issue of UpBeat. Best wishes for a great and healthful holiday season to you one and all with many thinks for the donations that have made this effort possible. Try and take the time to fill out the enclosed questionnaire and return it prior to December 15.


By Philippa Fletcher

MOSCOW, (Reuter 10/22/96) - While President Boris Yeltsin looks abroad for the best the world can offer for his heart disease, Russian doctors say his nation is beginning to die out for lack of basic medical care.

"We've got to the stage where we can't keep quiet any more," said Mikhail Kuzmenko, leading a demonstration by medical workers outside the White House government building on Tuesday.

"If we carry on like this we will be a dying nation."

The picket was part of a string of protests across Russia by doctors and nurses who, like millions of public sector workers, have not been paid for months and say they have not enough medicines, equipment or even food for their patients.

"Homeless and hungry medical workers are dangerous," said one of the placards held by the Moscow demonstrators, who said medical staff were forced to live in overcrowded hostels.

"If a nurse hasn't slept or eaten properly, how can she be expected to assist in an operation or look after someone in intensive care?" said Vera Sklyarovna, sister at the Odinstovski regional hospital west of Moscow.

"Patients sleep in the corridors in our hospital and this summer there was only one doctor for 90 patients," she said, adding that many had fled medicine for private business.

Yeltsin has a team of doctors monitoring his progress as he prepares for heart surgery next month and equipment is expected to be flown in from the United States for the operation, which is likely to take place in one of Moscow's top hospitals.

But effective medical treatment in Russia is largely reserved for those with influence or money, even though the 1993 constitution promises free care for all.

"People don't pay for treatment as such, but for food, medicine, everything, maybe even for the doctors, who don't get paid and look for a way to make some cash," said Kuzmenko, a senior doctor and the head of Russia's medical trade union.

He admitted that corruption was also a drain on resources.

Official statistics show deaths exceeding births in Russia over the past few years, leading to annual population drops of more than half a million people.

"Imagine what will happen if that goes on? What will happen to the economy if today, according to the prosecutor general, 80 percent of children finishing school are ill," said Kuzmenko.

Health Minister Tatyana Dmitrieva said on Monday that her ministry had so far received only 38 percent of the sum budgeted for this year, which is itself far below ministry estimates of what is needed.

Kuzmenko said Yeltsin had gone back on a pledge made at his August inauguration for a second term in the Kremlin to soften the blow of market reforms with a bigger emphasis on social protection.

"I'm very sorry that the president is seriously ill, as I would be with anyone. He obviously can't just cough up two trillion rubles ($400 million), but as head of state he should ask his structures to address the issue," said Kuzmenko.

"At least they could listen......at least explain that they can't do anything, if they can't, but explain why the elite can get good treatment and all the rest can't."

The demonstrators, who threatened strikes if their protest went unanswered, held out little hope of a response from the towering white government building with mirrored windows.

"They're all wearing rose-tinted glasses in there, they don't see us through that glass," said Kuzmenko.


By Michelle Fanzo

PITTSBURGH (Reuter 10/11/96) - The University of Pittsburgh Medical Center (UPMC) will help organ transplant patients in Italy who currently cannot get medical care in their own country by directing the establishment of a new $75 million transplant center in Palermo, officials said on Friday.

Under UPMC's direction, Civico Hospital and Cervello Hospital, both in Sicily, will build the facility with funding provided by the Italian government.

Jeffrey Romoff, UPMC president, said the project marks one of the largest international partnerships ever undertaken by a U.S. academic medical center.

Officials said the new facility is badly needed. Many transplant patients in Italy are sent to hospitals in other parts of Europe because Italy lacks the necessary facilities.

"In addition to the cost to Italy, it's awful for patients to go abroad with such a life-threatening illness and have surgery in a foreign country," Dr. Ignazio Marino, the project's director, said in an interview with Reuters.

Marino also is director of UPMC's European medical division.

The Italian government estimates $52 million is spent each year to send citizens to other European transplant centers.

UPMC will provide medical expertise and management services. Additionally, it will send doctors and other staff to Italy to work with physicians at the two Italian hospitals.

Organ transplantation will be the initial focus but oncology, gene therapy, cardiology and orthopedic services will eventually be added to the project.

Construction will begin in spring of 1997 and the facility will open two years later.

Marino said most of the doctors performing transplant surgery in the world were trained by UPMC physicians. He said he was contacted by Italian medical personnel to ask if he could assist with developing the transplant facility.

"The combination was fantastic," he said. "This project will be helpful to a weak group of patients ... the people who cannot presently get proper medical treatment."

Marino said similar international partnerships will grow in number over the next several years. Many countries are closing their borders to foreign transplant patients due to organ demand outpacing supply. Therefore, countries will need to provide solution s within their own borders, he said.


By Tom Wells - Associated Press Writer

MIAMI (AP 10/9/96) -- When Jeff Jacobs learned that a heart had been found for a dying 14-year-old girl, he had to go get it, storm or' no storm.

While Tropical Storm Josephine wreaked havoc on homes and boats in northern Florida, Jacobs was bouncing around in a Learjet in violent weather and zero visibility to save Yahaira Roldan's life.

The Miami cardiologist flew to an undisclosed location to retrieve the organ Tuesday. A lung and liver destined for other patients were picked up by representatives of the University of Miami and the University of Florida.

All three transplants were performed Tuesday, after the three-hour round-trip flight. Jacobs arrived at the donor's town at 4 a.m., as the storm was pushing across northern Florida, and returned a few hours later.

Yahaira was in critical, but stable condition at Miami Children's Hospital.

"We were looking all over the state for a heart," said Children's Hospital cardiologist Redmond Burke, who performed the transplant.

"It was quite satisfying -- actually we were elated -- to find a heart and even more elated to see it take its first beat inside her chest," he added.

The North Miami Beach girl was stricken several months ago by a virus that destroys the heart's muscle, Burke said. Two weeks ago, she was put on a heart and lung pump when her organs began failing.

Burke spoke for Jacobs, who was recovering after damaging a lumbar disc in his back during the trip.


LONDON, (Reuter 10/24/96) - An appeal court on Thursday backed a mother who refused to accept an order that she must return her child back to Britain for a lifesaving liver transplant.

Judges described their ruling as "desperately difficult" but agreed that decisions affecting the life of children must tie with parents to whom their care is "entrusted by nature."

The case hinged on what was in the best interests of the 15-month-old boy, who was taken abroad by his parents by coincidence just before a liver became available for transplant.

The child, who cannot be identified for legal reasons, has been given a maximum 18 months to live if he does not have the transplant.

But the parents, both of whom are health care professionals working with seriously ill children, believed the boy would suffer months of pain after an operation from which he may not survive, or which would not necessarily prolong his life.

The mother appealed against a ruling by the High Court that she must fly back to Britain from the family's new home "thousands of miles away" for the operation.

Today Lady Justice Elizabeth Butler-Sloss said in her judgment: "I believe that the best interests of this child require that his future treatment should be left in the hands of his devoted parents."

But she said that once the pressure of litigation is over, the parents may want to reconsider whether they remain where they are or return to Britain for further medical assessments of their child.

"That, however, will be a matter for them and not for this court," she said.

A spokesman for the government said careful consideration would now be given to making a petition to the House of Lords, Britain's highest court, after the three judges refused leave to appeal.


By Gene Emery

BOSTON, (Reuter 10/16/96) - The same process of cell suicide that builds and remodels tissues in the womb may be slowly destroying heart muscle in people with some types of heart disease, two teams of medical researchers have concluded.

The findings, published in Thursday's New England Journal of Medicine, might eventually lead to ways for doctors to counteract the deterioration of heart failure, which affects more than three million Americans, with 400,000 new cases each year.

But the results are unlikely to produce immediate treatments because scientists are just beginning to understand the process of programmed cell death, also known as apoptosis, in which individual cells are programmed to self-destruct constructively. In the womb, for example, apoptosis causes key cells that make up the embryonic hand to commit suicide, creating four gaps. The remaining cells become the fingers.

To explore the role of apoptosis in heart disease, one team led by Dr. Jagat Narula of the Massachusetts General Hospital examined seven hearts that had been removed as a result of transplant surgery. All of the patients suffered from heart failure. Those hearts were compared with four organs from recent heart attack victims and heart tissue from four people who had died in motor vehicle accidents.

"Our results support the hypothesis that apoptosis is one of the mechanisms leading to endstage heart disease," the Narula group concluded.

The second study, led by Dr. Ziad Mallat of the Jean Rostand Hospital in Ivry-sur-Seine in France, also found evidence of programmed cell death in six of eight samples of heart muscle from people who died of an often-fatal condition known as arrythmogenic right ventricular dysplasia (ARVD), an abnormality most commonly found in juveniles or young adults.

Disclaimer: The material in this document has been collected by Don Marshall and friends. If any of the views and opinions expressed here are taken the wrong way, we can be nothing m ore than sorry. New ideas and materials are welcome all the time. 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:

Don Marshall
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