Oriented to Thoracic Transplant Recipients -- October 1998

The UPBEAT! Archive


by Don S. Marshall, Editor UpBeat

Well, for starters, I promise you that you're only going to hear this story once. The main reason for that codicil is because so many of us transplant recipients get so sick from time to time, that there are many horror stories out there worse than mine. In some ways, what happened to me has an essence of Keystone Cops in it mixed with a good portion of Pigpen' s black cloud.

The beginning is easily memorable, it was New Year's Eve day 1998. I was in a non-transplant hospital at the behest of an ear, nose and throat surgeon, having the 4th biopsy of my vocal cord area. The previous 3 excursions down my throat with a sharp knife had resulted in the tissue sample being dysphasic, or symptomatic of cancer, but not really cancer - yet. As this doctor left the OR he told my wife he hadn't seen any cancer this time either.

Normally, one can walk right out of the hospital after such surgery, but this time unfortunately somebody had administered some atropine to this transplant patient, a definite "no, no". My heart beat nearly stopped in a condition known as heart block. Fortunately, my chief Tx coordinator was beeped and available and she grabbed the head "electrical" heart man from the transplant hospital where

I'm followed (Henrico Doctors in Richmond). They monitored my condition. I was admitted to the hospital for 2 days observation on a heart monitor. The heart rate returned to normal over night, but not realizing the atropine had been administered, the "wire" doctor was convinced I needed a pacemaker and kept me there an- other day to see whether the heart rate was steady. (An angiogram performed shortly thereafter showed the heart was fine. I now kid the "wire guy" that he's like the proverbial street watch salesman only in his case it's pacemakers pinned inside his trench coat.)

Four days later the final pathology re- port came back via a phone call from the same Dr. who had said, "no cancer". The lab report said Stage 3 cancer of the larynx. His quote was, "The good news is that there doesn't appear to be any invasion of the cartilage, the less than good news is that Stage 3 cancer of the larynx always calls for surgery." This meant the breathe through a hole in your neck, speak with "esophageal speech", mode of existence. Outside of going very much berserk, one of the first of many things I thought of was there goes fishing. If one fell overboard in that condition it would be all over very quickly.

Shortening the story just a bit- The head Tx Coordinator at Henrico Doctors Hospital made a presentation on my behalf to the Tumor Board of same. They felt it would be worth a try using radiation and chemo-therapy in combination, with the concept fully understood by me that if at certain way points in the process, there was no reduction, or any increase in the tumor size, I would have to undergo surgery immediately. Due to my transplant recipient status, they were also very careful to point out that they had no history or statistics, or really even proven procedures to go on in my case, especially when it came to effect on the heart.

The chemo was infused over two separate one week stays in the hospital with a three week interval between. After each week long infusion of chemo, a CAT Scan was performed. The first showed only a minuscule reduction in the tumor, but enough to allow continued chemo. After the second week long infusion the CAT Scan showed an apparent 62% reduction, and thus the radiation program was started in addition to weekly chemo injections in the doctor's office. While in the hospital there was really no noticeable effect from the chemo, but there sure was later on. The "track" hit about 2 days after I came home from the 2nd infusion. For about two weeks I only occupied Point A, the bed, or Point B, the Lay-z- Boy chair, dressed for all occasions in pajamas. Travel between the two points was carefully monitored with at least one rest stop and a cane in use at all times I was vertical. Showers had to be taken while seated in a lawn chair, a most unproductive method. The chemo early on affected the blood flow from the heart in a complicated way that essentially created acute hypotension, or low blood pressure and dizziness, when changing positions, particularly getting up from having been seated for a period. A couple of times, before I realized the problem for what it was, I simply passed out - the first was a spectacular backwards, swan dive with full tail landing in the middle of the night while attempting to locate the bathroom. Another was a literally smashing collapse over a full bookcase with a TV on top followed by a complete full pirouette to the bed beyond, leaving books all over the floor, but somehow sparing the TV.

Then the radiation treatments consisting of 39 applications began, one every business day of the week. For these, when I was not hospitalized, I started driving the 160 mile round trip daily for the 15 minute treatment. For the first weeks I had no trouble, although at the start Sue rode with me because it appeared I had a tendency to kind of head the car for the woods every now and then, but after that the effects of the chemo seemed to diminish somewhat and I did it alone until the next fateful event.

I was returning from the Richmond trip April 15th, and as usual as we live in a very small town, I stopped at the Post Office to pick up the day' s mail. Knowing my propensity to get dizzy, especially after an hour and a half' s drive, I did my usual maneuver of getting out of the car. Get out, but then lean against it until I felt the dizziness had not only arrived, but then stabilized. (It took say, a minute to arrive, enough time that if I wasn't careful I could be, say in the middle of a street passed out.) I then headed toward the door of the P.O. only to realize as I got to the handicapped entrance railing that I was about to be very dizzy. I simply latched onto the railing and again rested, this time I guess with head down. Almost immediately a lady came by and asked if I was all right and should she call the Rescue Squad. I responded that I was fine, but thought to myself that I must be making some sort of scene here in the center of town, so I re-launched toward the entrance door. I made it through the door, but then I thought, I'll just back up here and lean against the wall. I missed the wall by 3 feet and sort of cork screwed to the floor. In so doing I realized I was bending my ankle in a direction that would just never work, but there was absolutely nothing I could do about it in my fog.

I was very correct in my instant diagnosis, it was smashed it to pieces. Now the Rescue Squad was called and I was off to the local hospital, followed by a trip back to Henrico in Richmond. It was just a bit convenient that I had already been scheduled for surgery the next day to remove the stint through which they applied the chemo as it had become infected, a not happy situation in a Tx recipient. So, that surgery went ahead as planned and then the following day an orthopedic mechanic literally screwed and plated my ankle back together. That was a Friday and I was discharged and told to go home and keep my leg up on Monday. I followed orders to the tee and Sue took over the driving to radiation treatments with me lying like a poached out-of-season deer in the back seat.

Time passed and it was May 26th, my birthday, a date now celebrated only by my disability insurance company as another year closer to the date they can stop sending money. Radiation was completed and I was due for the Biggie CAT Scan, the one that would indicate success or failure of the therapy. Just after the scan I mentioned to the Tx Coordinator that if I was a doctor I would be willing to bet that I had phlebitis (blood clot) in my left leg. She agreed and arranged an immediate ECHO of the leg- it showed a clot from ankle to thigh. So much for obeying orders and keeping the leg up!

Yep, back into the hospital for another full week this time on blood thinners!

Fortunately, the CAT scan showed a radical reduction in the tumor, leaving just an indiscernible small mass, which could have been scar tissue, or cancer cells now dead, but not absorbed yet by the body. The really good news came in early August when surgical biopsy of 5 areas showed no sign of cancer. However, this procedure will have to be carried out again in December and probably at least once more, if negative, until after a year has passed.

As to the patient. He has some neat scar patterns on his right shoulder and left ankle. His lower face and neck is badly swollen due to the permanent effect of the radiation (gosh no more neckties!). He has absolutely no saliva, which may be the most annoying side effect. Ninety-five percent of head hair was lost, only to be eventually replaced by curly salt and pepper steel wool - coarse grade. And his voice consists of one paralyzed vocal cord caused by the cancer, and another that just flaps in the breeze when an attempt is made to talk. The result is sort of an absolutely non-sexy, raspy, loud whisper that even the maker finds annoying. The answering of the phone has been interdicted by this condition, which may well be the greatest benefit from the situation.

Friends kidded me (oh yeah, I was really in a joking mood through all of this - surviving on Xanax and Zoloft!) that from now on when I went through airport security I would trip the alarm with my ankle. The Dr. said, "No way, but we'll give you a card just in case." On my first trip post-mess, I attended a UNOS OPO meeting at Dallas Airport. I tripped every alarm in the place both going and coming ! I would whip out my card, which only made them more suspicious. From now on I'm destined to be just another gray haired terrorist, who can't spit.


I have always tried to keep UpBeat fairly impersonal, but I feel I have to offer my wife' s and my deepest thanks and appreciation to my heart transplant coordinators at Henrico Doctors Hospital in Richmond, Helen Stewart, R.N., Director and Sheldon Maguire, R.N.C.P. as well as Dr. J.A. "Tommy" Thompson, for setting up an acceptable cancer treatment plan and then listening to my agonized complaints be they real or imagined. They also succeeded when needed in cutting a path through what could easily have become a morass of tangled hospital policies and payment procedures. One example being the time I did the"chemo swan dive" and passed out smashing my ankle down here in podunk Mathews. Sheldon convinced the local emergency room it was fine to let Sue drive me to Richmond, and then she met us at the hospital front door with a wheel chair and admittance papers. Under the "rules" I should have taken in an ambulance the 78 miles and then gone through the emergency room, x-rays, etc., prior to admission.

There have also been over the past ten years my "silent absentee coordinators", Joyce Johnston, R.N. and Jeanne Gonzales, R.N. at Loma Linda University Medical Center in California, who have given advice when asked, held my hand over some rough spots, and in general shown a much appreciated continuing interest in this patient's well being.

Now, Sue and I also have to try and offer appropriate thanks to all of you UpBeat fans out there who sent letters. and called. and e-mailed, and I'm assured did some serious praying. We couldn't possibly reach each of you individually, but the thoughts were so helpful and greatly appreciated by both of us!

With the advent of the cancer problem, my long established drug regimen was changed radically. It had been determined several years ago that I had become prednisone dependent, but now the dosage was raised from 2.5 mg. every other day to 5 mg. daily. I have struggled to gain permission, now that things have stabilized just a bit, to get the dosage back down. But every time I try, I'm assured that "5 mg. is a really low dose Don. Don't worry about it." While in for a blood draw, I ran into a young man who had waited over 18 months for a heart transplant on an assist device, but had just recently received the sorely needed organ. Thinking I would assure him that things would be "all downhill" from there I mentioned that "as soon as they get your prednisone dosage down to a reasonable level, you'll feel much better. His reply was, "Well, I sure hope so, I' m on 5 mg. a day right now."

UpBeat is going to drop to 4 pages instead of 6 or 8 for at least awhile. The UpBeat bank account is just a might bit slender with- out the regular publication since January and thus very few donations coming in. Also, we're still dealing with regularly scheduled medical tests and appointments, which not only take time, but could also result in further nasty treatments.

Don S. Marshall


UPI Science News

Chicago, Oct. 6 (uPI) Organ transplantation has improved significantly over the last decade, says a study of nearly 100,000 patients. In the first national study to look at short- term and long-term survival for organ transplants, researchers from the United Network for Organ Sharing (UNOS) also found a sharp rise in the number of transplants performed.

One year survival rates for heart-lung transplants improved about 12 percent, for lungs and livers the improvement was about 7 percent, for pancreas survival rates improved about 4 percent and for kidneys, the improvement was about 3.5 percent, says former transplant surgeon Myron Kauffman, who is now a consultant for UNOS, based in Richmond, Va.

The scientists found that one-year survival rates ranged from about 62 percent for heart-lung transplants and 91 percent for kidney transplants. Three year survival ranged from 50 percent for heart-lung transplants and 86 percent for kidney transplants.

The only area where there was no improvement was in heart transplants, and Kauffman says that it may be in part because survival rates were high to begin with, over 80 percent. Also, he says that cardiologists are doing a better job of managing patients with congestive heart failure (CHF), a condition in which the heart progressively gets weaker. Better management of CHF, he says, means that the patients who need transplants are sicker and older by the time a new heart is needed. Kauffman says, "The quality of transplantation in this country is remarkable."

In 1994, UNOS counted 60,100 transplants, compared to more than 97, 587 performed in 1997. There was also an increase in the number of transplant programs in the United States, from 640 in 1994 to 742 in 1997. Kauffman tells UPI that since 1997, that number has gone over 900.

The scientists looked at all kidney, liver, pancreas, heart, lung, and heart-lung transplants performed in the United States, comparing success rates during two periods -- from January, 1988 to April, 1992 and from May 1992 to April, 1994. The study, published in Wednesdays Journal of the American Medical Association (JAMA), is part of a larger report on transplant centers around the country that was issued in January, says Kauffman. He says, this report can serve as a consumer guide for patients.

The next report on transplantation center performance will be for the year 2,000.

In an editorial in JAMA, Edgar L. Milford of Boston's Brigham & Women's Hospital says that the UNOS study shows that graft survival rates and patient survival rates have improved steadily since the early years of transplantation despite the more relaxed criteria for candidates and the increased use of marginal donors.


By Bruce Dunford - Associated Press Writer

Honolulu (AP 8/31/98) -- Faced with the nation's worst shortage of organs available for transplants, Gov. Ben Cayetano is floating an idea where state government would pay the families of organ donors.

Cayetano, speaking last week at an unveiling of a commemorative stamp for the National Kidney Foundation, said new approaches are needed in the island state, which ranks last in donations. Since Jan. 1, there have only been seven organs donated.

"This has been discussed in the past and people all thought it was a macabre idea, but let's be practical about things, let's think about things because we can help people," he said.

Two problems intensify the shortage here. Hawaii is too far from the mainland to import organs, officials say. And cultural and ethnic beliefs, particularly among Filipinos, discourage donations, said Tony Sagayadoro, program coordinator of the Minority Organ Tissue Transplant Education Program.

"Filipinos hesitate to agree to be donors on religious grounds. They are mostly Roman Catholics and believe that you need to be full in body and spirit when you die," said Sagayadoro, a Filipino who has waited three years for a donated kidney. "But I'm Catholic and Catholic teaching doesn't really say that."

He opposes Cayetano's suggestion, noting federal law prohibits the sale of donated organs, to prevent creation of a potentially dangerous black market for organs.

Glen Hayashida, executive director of the National Kidney Foundation of Hawaii, said the national organization opposes any payments for donated organs.

State Sen, Andy Levin said he would approach such an idea very cautiously, though he credited the governor with recognizing the extent of the problem.

"The idea of selling organs has moral implications that would have to be considered very carefully," said Levin, a Democrat. Levin and Sagayadoro said more could be done to educate islanders to overcome worries about organ donation.

Last year, only 18 donations were made in Hawaii. There is a waiting list of 191 patients, Sagayadoro said.

About 20,000 Americans received organ transplants last year, but some 4,000 died waiting for a donor. More than 55,000 people are on the transplant waiting list, up from 16,000 in 1988.


London, Oct 8 (Reuters) - British animal rights groups suggested on Tuesday that people receiving animal organ transplants could become less human.

They said cells from the animal organs would spread throughout the recipient's body, effectively making them a human chimera, the mythical creature that combines features from different animal species.

"The human xenotransplantation patient will become a literal chimera," Dr. Gill Langley, told a news conference on Tuesday to launch a new report on animal-to-human organ transplants. "It sounds like scare-mongering, but let me reassure you that the word chimera is being used by xenotransplant scientists."

Langley co-authored the report by the British Union for the Abolition of Vivisection (BUAV) and Compassion in World Farming (CWF) warning about the dangers of xenotransplantation -- the use of organs, tissues or cells from a different species.

The report said there was little evidence that pig or monkey organs could sustain human life and differences in species would cause serious, even fatal problems.

It cautioned that animals could pass on viruses to humans and said the research was causing undue suffering to animals. The report also claimed that there are unknown psychological consequences that patients will have to deal with.

"We seem to be almost sleepwalking, oblivious to all the dangers," said Mike Baker, the chief executive of BUAV, adding that the technology was neither safe nor effective.

He said the report was designed to highlight the problems and to offer alternative ways to deal with the shortage of transplant organs. The report followed new British guidelines on xenotransplantation announced in July which the groups said failed to address the dangers of the technology.

Scientists believe that animal organ transplants may be the only way to solve the growing shortage of human transplant organs. Up to 50,000 people in Europe are waiting for human donated organs and demand is growing by 15 percent each year.

The discovery that pig viruses - called procine endogenous retroviruses - could be transferred to humans during transplants led to calls for a moratorium on xenotransplantation research. Rejection of the animal organ by the recipient's immune system and concerns about retroviruses are the main problems holding back xenotransplantation.

Recent studies presented to the United Kingdom Xenotransplantation Interim Regulation Authority, a government body, in August showed that people who received cells from pigs for pancreatic disorders and Parkinson's disease did not show any signs of being infected with a pig virus.


By Patricia Reaney

London, Sept. 25 (Reuters) - A doctor who helped perform the world's first arm and hand transplant predicted on Friday that a second such operation may take place in two months.

"This is the first transplant of a limb. Obviously we are progressing very well; short of doing anything like a head transplant, I think this is quite advanced," Professor Nadey Hakim told Reuters.

"I don't believe a head transplant is going to happen but some people are talking about it," he added in a telephone interview from France.

Hakim, the head of transplantation at St. Mary's Hospital in London, was one of eight doctors who performed the intricate surgery on New Zealand businessman Clint Hallam, who lost his arm in a circular saw accident 14 years ago.

Hallam was said to be in good condition on Friday after nearly 14 hours of painstaking surgery at the Edouard Heriott hospital in Lyon, central France, two days earlier.

"He's doing well. I spoke to the hospital this morning," said Hakim. "The next couple of weeks will be critical for rejection and obviously the blood supply to the arm has to remain as good as it is today. We remain optimistic." If all goes well the surgical team in Lyon could soon repeat Wednesday's ground-breaking operation.

"They are hoping to do another one in two months time, again in Lyon," Hakim said, with- out giving further details.

Hallam, a 48-year-old who lives in Perth, Australia, received the arm and hand from an unidentified brain-dead man. Doctors hope he will regain 80-85 percent movement in his fingers, but it will take between nine months and a year before there is any recovery of the nerves in the fingers.

He will have to take a cocktail of drugs for the rest of his life so his body does not reject the new arm. But Hakim said he and the international team of surgeons are optimistic about his recovery. The doctors said Hallam is receiving four anti-rejection drugs plus a special cream to insure the donor skin remains :alive and healthy.. The anti-rejection drags suppress the immune system, making Hallam more susceptible to infections and cancer.

The experts in orthopedics, microsurgery and transplant surgery from France, Australia, Britain and Italy had been preparing for the revolutionary operation for months.

They narrowly beat surgeons from Louisville, Kentucky in the United States who announced in July that they hoped to perform a similar operation by the end of the year.

Surgeons in South America tried a hand transplant in 1964 but it was unsuccessful because the patient's body rejected it.

The successful arm transplant, which some doctors say is one of the biggest advancements in surgery since the first heart transplant, could offer hope to other amputees and individuals born with hereditary deformities.

But it also raises ethical questions. Unlike a heart or liver, a hand or arm is not a vital organ. Some doctors question whether patients should be subjected to surgery and potentially life-threatening anti-rejection drugs for a body pan they can live without.

"You have to look at the whole picture. The patient wanted it done. He is the one who has been following the matter and pushing the team to do it. We wouldn't do it on just anyone," Hakim said.


WASHINGTON (Reuters 9/29/98) - The U.S. Food and Drug Administration approved two new heart devices Tuesday for heart-transplant patients;

Both buy the patients a little extra time as they wait for a suitable heart, and let them go home from the hospital while they wait. The devices fill in for a failing heart by pumping blood through the body.

"Until now, patients on a heart-assist device had to stay in the hospital connected to a console which powered the pump, or they occasionally could go home with extensive home health care support," Dr. Michael Friedman, the FDA acting commissioner, said in a statement.

"These new devices allow patients far more freedom outside the hospital and have the potential to improve the quality of their lives." Baxter International Inc.'s Novacor heart assist device and Thermo Cardiosystems Inc.'s HeartMate work in similar ways. A blood pump is implanted in the abdomen and is connected by a cable through the skin to a small external computer worn at the waist.

"The pump is connected to the left ventricle, the main pumping chamber of the heart. From there, blood is pumped by the HeartMate or Novacor into the main artery supplying blood to the body," the FDA said in a statement.

"In an ideal situation, if you have severe heart failure, you can reach up on the shelf and put a new heart in somebody," Dr. Robert Kormos, director of the artificial heart program at the University of Pittsburgh, said in a statement issued by Baxter.

"The Novacor LVAS is the next best thing to a natural heart that you can pull off the shelf, put in somebody and provide normal function to someone who's dying."

The two systems are approved for use in patients with irreversible heart failure when their condition is so severe that they are likely to die in 24 to 48 hours.An estimated 15,000 to 20,000 people in the United States need heart transplants each year, but there are only enough hearts for about 2,000 people.

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 t he 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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