Volume No. 8

Issue No. 3

November 1. 2001

ANNUAL CHARTERING DINNER

Call Amy Luxner at 202.234.9636 by 10/29/01 to RSVP.
$25.00 per person. (Grants available.)
A map is enclosed. Invitations are in the mail, but even if you don’t get one, you are invited.)

NOVA HEART/LUNG TRANSPLANT CELEBRATION
Thursday, November 8, 2001
6-8pm Dinner
Fairfax Hospital Physicians Conference Center
3300 Gallows Road, Falls Church, VA
NO CHARGE RSVP 703.205.8388

We are all invited to Inova’s celebration of 15 years of heart transplants and 10 years of lung transplants.

HOLIDAY PARTY
Sunday December 2, 2001
2:00 - 5:00pm
American Legion in McLean
TRIO will provide the paper products and the liquid refreshments. Please bring a dish to pass. Please RSVP to Trudy Anderson at 703.532.3223 by Wednesday, November 28. Family and friends welcome. NO CHARGE

NATIONAL DONOR SABBATH
November 9 -11, 2001

This is a weekend for all religious groups to include organ and tissue donation in their activities. Some suggestions:

• Contact you faith representative and ask that donation be included in the sermon or Sunday school lesson.
  
• Set up a table with organ donation literature at your church, synagogue or mosque.
  
• Put an announcement in the bulletin about your gratefulness for your transplant, maybe including a short version of your story.
  
• Make an announcement during services about organ and tissue donation.

These are just a few ideas. WRTC at 703.641.0100 has sample bible quotations (old and new Testament), as well as sample sermons for various religious faiths that you can provide as a starting point. They also have handouts and bumper stickers that you can use. We recipients, those waiting for transplants and those who have been living donors or who are donor families are the best people to make the public aware of this issue. We put a face on the issue and really bring it home to them. Do your part to make more people aware of the growing and desperate need for organ and tissue donors.

PLEASE! WE NEED YOUR EMAIL ADDRESS!

Without it, we cannot readily notify you of events, which happen between newsletters. Please email your address to Trudi Anderson at TWAfoxhall@aol.com, so that you can be readily notified of upcoming events.

• Some of the events which we could not notify you of the last few months were:
  
• WRTC’s candidate’s forum
  
• Visitations for the members that we lost
  
• DOT Donor Recognition Ceremony
  
• Board and art auction committee meetings
  
• Johns Hopkins annual transplant conference
  
• Opportunities to participate in parades
  
• Speakers opportunities
  
• Health fair and other events at which we needed your help
  
• Claude’s lunches and dinners, like the 10/24 at the Spanish restaurant

COME ON GUYS, give us your email address, so we can keep you informed of the many things TRIO-NCAC is doing. We will only email you of TRIO news you need to know now and will keep it to a minimum.
TRIO NATIONAL DINNER NEEDS VOLUNTEERS

We need about 10 volunteers (in business dress) to assist with registration, etc. for the fund raising dinner on November 13 at the Ritz Carlton at Pentagon City. The dinner is $500/person ($100/person for TRIO members) but volunteers get to attend for FREE. Call Linda Cheatham at 703.924.9472 to volunteer.

Calendar of Events

Calendar of Events

October 27	TRIO Annual Meeting 10:00am at the St. Regis Hotel in DC. All are welcome to attend.
November 3	Annual Chartering Dinner (See front page)
November 7	WRTC Speaker’s Bureau Training. 6:30-9pm. Call Rhonda Gaines at WRTC 703.641.0100 to attend.
November 9-11	National Donor Sabbath weekend. Contact your faith representative to include organ and tissue donation in the sermon, Sunday school or after services activities. (See article in this newsletter)
November 13	TRIO National Fund Raising Dinner - Ritz Carlton at Pentagon City, cocktails at 6:30 pm, dinner at 7:30 pm. $500/person. TRIO members can attend for $100/person. Call Linda Cheatham at 703.924.9472 for details or to volunteer. Volunteers attend for free.
November 13	NKF Annual Ball. Call NKF at 202.244.7900 for details. Black tie.
December 2	TRIO NCAC Holiday Party (See front page)
January 27, 2002	TRIO-NCAC Art Auction Fund Raiser
June 26-29	2002 U.S. Transplant Games at Disney World, Orlando, FL
	November is National Diabetes Month
	November is National Marrow Awareness Month
	November is 15th Annual Great American Smokeout

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YES, TRIO NATIONAL STILL EXISTS!

The new address for TRIO national is 2117 L Street, NW, #353, Washington, DC 20037-1524. The phone number is 800.TRIO.386. A major fundraiser is being held next month, so that the office can reopen. In the meantime, various volunteers from the National Board and local chapter members are filling in the gaps.

SLAGEL RIDES AGAIN!

Larry Slagel did the Raleigh to Washington AIDS ride and wrote the following article:

For the second year in a row, in the third week of June, I cycled the 330-plus miles of a circuitous route from Raleigh, NC to Washington, DC as part of the Washington, DC AIDS Ride. Pedaling every of one of those miles, through sun and rain and up every hill, I showed fellow riders that transplantation works.

On the ride, we made pit stops every 15 or so miles, accumulating 110 miles the first day, 83 the second and 95 on the third, finishing with a 47 mile ride from Dumfries to Manassas into DC on the last day. There were 2,017 riders. As far as I know, I was the only transplant recipient and one of the oldest riders.

Distance cycling can be a challenge to a heart recipient, particularly on the hills. The transplant operation severs the branch of the Vagus nerve used by the brain to control the pace of the heart. Instead, the heart responds to enzymes in the body, a far slower process than the body’s natural electrical system. I’ve found I can’t attack the long hills, but must start slowly and concentrate on one pedal revolution at a time until I get to the top.

Using Port-a-Potties for the three and one-half days of the ride makes a hand sanitizer absolutely essential. And with most of us sensitive to the sun from our medications, sun protection liberally applied every two hours is a priority. I also wear a helmet with a visor to partially shade my face.

In the heat of June, avoiding dehydration is critical for every rider but even more essential for a transplant recipient. At every pit stop, I drank at least a quart of half water/half Gatorade. Between pit stops, I drank frequently from the two water bottles I carry on my bike. It wasn’t hot all the time. On Friday night, outside of Richmond, camped in a field of two-person tents, we were hit by wind and lightning and rain hard enough to make its way into our tents in little lakes. Wet and sleepy, we got up the next morning and cycled in a cold rain to Fredericksburg.

The AIDS ride raises funds for Whitman-Walker and Food and Friends in the District. A worthy cause, certainly, but I took every opportunity to tell fellow riders about transplantation. Next year, I’ll do it all over again. [Editor’s note: Way to go, Larry!]

WRTC/INOVA FAIRFAX IN THE NEWS

WRTC facilitated a - paired exchange - of kidney transplants in July. The husbands weren’t compatible with their wives but the transplant coordinator found that they were compatible for each other’s wives. So husband A gave to wife B and husband B gave to wife A. Only a handful of such transplants have been done in the US and our area is leading the way. The transplants were done on July 18 and everyone is doing well. Both the Washington Post and People had stories on this amazing set of transplants.

Parade - the Sunday supplement magazine - featured an article on June 10 on the transplant from Harold Mintz to Gennet Belay through WRTC’s anonymous living donor program. Belay had been on the list for more than 10 years. Mintz’s surgery was performed at Georgetown and the transplant was done at Fairfax -good cooperation within our region. Another such operation at Johns Hopkins was also featured in the article.

LOW IN THE NEWS

Ellen Low, NCAC member, responded to our request to -Toot Your Own Horn- in which we ask people to let us know what you are dong to promote organ donor awareness. Ellen was featured in a big article in the Market News, in Ashburn, VA. Besides, Ellen’s liver transplant story, it also told the story of a donor in the area a few years earlier and featured a man in the area, who is on the waiting list. Way to go, Ellen!

INSURANCE AND YOUR JOB

Keep in mind in these tough economic times, that should you lose or change jobs there are two laws that affect your insurance coverage plus one new law for those retired or on disability:

COBRA - any employer with 20 employees has to allow you to continue paying your own health insurance premiums into their plan for up to 18 months. Many may be eligible for an additional 11 months. COBRA coverage also applies to widows and divorced spouses for up to 36 months. If you receive Medicare, COBRA coverage may be denied in some circumstances.

HIPPA- anyone who is in a health insurance plan with at least 10 employees can change jobs and receive immediate coverage for all conditions under the new employer’s plan. Pre-existing conditions are not an issue under a HIPPA transfer. You may need to get a certificate of coverage to give to the new plan to have a seamless transfer. [Source: Transaction Council]

BIPA – lifetime immunosuppressive coverage (at 80%) is available for those who are covered under Social Security because of retirement or disability (SSI).

HAIR AND PREDNISONE

Prednisone can affect the texture of your hair. According to the International Transplant Nurses Society, you should tell your hairdresser/barber you are on prednisone and ask for a good conditioner. Wait until your dose is below 10mg/day before coloring your hair or having a permanent.

HHS’ WORKPLACE PARTNERSHIP PROGRAM

TRIO, as a National organization, has joined with major employers, like Bank of America, the UAW, Verizon, etc., as part of the Secretary of HHS’ special program to encourage donation. This program is generally designed for employers to encourage them to include donation information in their employee paychecks, health fairs, seminars, brown bag lunches, etc. We are participating as one of the - charter members - along with these national organizations. We will keep you posted on its activities. This keeps TRIO in the forefront nationally with organ donation activities.

NKF STARTS SUPPORT GROUP

The DC chapter is sponsoring a support group for area kidney patients and their families, so that patients and their families can share day-to-day challenges, concerns and triumphs, as well as hear from qualified speakers. Meetings are held monthly. Contact Jim Straight at 202.244.7900 or jstraight@kidneywdc.org. [Source: NKF-NCA newsletter]

COLORADO DONOR CARD

Colorado became the seventh state to adopt the - donor-intent policy. The new rule, which took effect October 15th, means that hospitals will follow the patient’s wishes on donation, although families will be informed beforehand. A database has been created through the DMV of Colorado. [Source: Denver Post]

TRANSPLANT PATIENTS BILL OF RIGHTS

NKF’s transAction Council has published the “Transplant Recipient’s Bill of Rights and Responsibilities.” The 10-page document is available at 800.622.9010 or www.kidney.org. [Source: Transplant News Update]

INTESTINAL TRANSPLANTS NOW COVERED

Medicare began covering intestinal transplants on April 1. The centers that perform such transplants are: Pittsburgh, Jackson Memorial in Miami and Mt. Sinai in New York. [Source: Transplant Chronicles]

DONOR INITIATIVES PROPOSED TO HHS

TRIO is one of eight national transplant-related organizations that have made proposals to HHS to increase donation. The proposals are:

Payment for travel and subsistence for living donors. (This is in a bill that has passed the House.)

• Leave time for living organ donation. (May be done by amending the Family Medical Leave Act to require employers to offer this benefit.)
  
• Organ coordinators in hospitals. (Federal funding for positions to provide greater coverage than OPOs can provide.)
  
• Regional hearings by HHS and report to Congress. This would generate grass-roots input into the process.
  
• Honoring consent. This would make an organ donor card or driver’s license a legally binding document, regardless of family objections.
  
• Stronger demonstration grant authority for HHS, to include study of such things as financial incentives for donation.
  
• National Registry of Organ Donors. This would be a clearinghouse where all OPOs could call, day or night, to determine an individual’s intentions related to organ donation. (Some states have such registries.)
  
• National Donor Outcomes Registry. This would create a registry to track the outcomes of living organ donors and recipients to help researchers and clinicians.
  
• Study disparities in organ transplantation. Studies have indicated significant disparities in racial diversity of people listed for kidney transplants. Federal funds should be used to study the reasons for this and identify solutions.
  
• Tissue donation. FDA should move on registering tissue banks, donor screening, and the use of tissue practices, including informed consent.
  
• Organ donor awareness. Increase activities by Federal government, including having President issue proclamations, encouraging Congresspersons to speak out, etc.
  
• Semi-postal stamps. A semi-postal stamp (like the breast cancer stamp) with the amount over the cost of the postage used to fund organ and tissue donor awareness. [Source: Transplant Chronicles]

LIVING DONATION SOARS

The number of living donors increased 16.5% from 1999 to 2000, but non-living donations were up only 2.7%, according to UNOS. [Source: Transplant Chronicles]

STEM CELLS FOUND IN FAT

Researchers at UCLA and Pittsburgh have isolated human stem cells in fat removed from patients during routine liposuction. Since many Americans would be more than happy to donate their fat in the name of science, this finding suggests a plentiful —perhaps unlimited —supply of stem cells for research. This was reported in Tissue Engineering. [Source: Transplant Chronicles]

COOPERATIVE CARE — A HOME AWAY FROM HOME

The University of Nebraska has pioneered a new concept for their transplant patients — hotel type hospital rooms, where patients are moved as soon as they are medically stable and able to get out of bed unassisted. The rooms allow family members to stay with them, providing part of their care. The room doors lock and rounds are scheduled at a specific time, so that the patients can plan their day. The Lied Transplant Center also has its own cafeteria, exercise room, play room and resource center with computers, fax machines, video games, movies and educational materials. WOW — what a concept. They have found that patients are recovering faster and having fewer medication errors, falls or re-admissions. Lower costs may be an added benefit. [Source: Transplant Chronicles]

NEW MAIL ORDER PHARMACY

Are you looking for a Pharmacy that specializes in the needs of transplant patients? Visit Amber Pharmacy on-line at www.amber-pharmacy.com. Amber provides free delivery, easy ordering, refill reminder service, on-line refill requests, a complete line of over-the-counter products, transplant prescription medications, and pharmacists specially trained to help answer questions about your transplant medications. [Editor’s note: Since this is a new service, we have no information about its prices or services — this is just being passed on for your information.] [Source: transplanthealth.com]

PCIA FOUNDATION NEEDS VOLUNTEER

The PCIA Foundation, in Alexandria, provides free pagers to transplant candidates around the country (the LifePage program). PCIA lost several of their staff in the plane that hit the Pentagon and are looking for volunteers to help with data entry and administrative tasks. Contact Julie Besaha at (beshaj@pcia.com) or 703.739.0300, if you can help.

NEW AUTHORS IN OUR CHAPTER

Brian Hartford’s new book, Change of Heart, is now available (published by American Publishing Co). Ask at local bookstores or try publishamerica.com. Brian says he is busy with appearances and book signings, but will be glad to autograph the book for any TRIO member. Congratulations, Brian.

Richard McCann had some of his transplant-related essays appear in Best American Essays 2000, published by Hougton Mifflin. Richard’s article about his liver transplant in 1996 also appeared in the Washington Post last year. Congratulations, Richard.

Although he didn’t write it, there was an excellent article on Ron Green’s heart transplant in the September issue of Washingtonian. It has some lovely pictures of Ron with his donor’s mother — touching his heart.

OUR SOURCE AT HRSA HAS LEFT

Our HHS source, Jennifer Doherty, who gave us such great presentations on Medicare and transplantation, has left HHS. However, we still have her internal phone number list of people to call when we have a Medicare problem. So call TRIO, if you need a number to call.

LOCAL HOSPITALS ARE TOPS!

U.S. News and World Report ranked several of our local hospitals very high in its annual rankings. We are lucky to have such great health care in our region.

• Johns Hopkins: cancer (3rd), digestive disorders (2nd), ENT (1st), geriatrics (2nd), gynecology (1st), heart (4th), hormones (3rd), kidney disease (6th), neurology (3rd), orthopedics (4th), respiratory disorders (3rd), rheumatology (2nd), eyes (1st), psychiatry (5th)
  
• Howard University Hospital: hearts (39th)
  
• Greater Baltimore: cancer (41st), digestive disorders (45th)
  
• Georgetown: cancer (48th), digestive disorders (20th), ENT (30th); Geriatrics (24th), gynecology (22nd), heart (46th), hormones (43rd), kidney disease (48th), neurology (21st), orthopedics (35th), respiratory disorders (30th), rheumatology (25th)
  
• Washington Hospital Center: cancer (50Th), ENT (46th), heart (44th), hormones (22nd), neurology (49th)
  
• Sinai Hospital of Baltimore: heart (41st)
  
• Doctors Community Hospital in Lanham, MD: neurology (30th), rheumatology (21st)
  
• National Rehabilitation Hospital in DC: neurology (44th), rheumatology (26th), rehabilitation (13th)
  
• Children’s National Medical Center: pediatrics (19th)

Johns Hopkins was selected as the best hospital in the country with 16 specialties. Transplant centers were only ranked by volume. Here are the local hospitals listed, by number of transplants, in the report.:

• University of MD (1st) with 407 kidney transplants
  
• University of MD (2nd) with 49 pancreas transplants
  
• Medical College of VA (2nd) with 52 adult-to-adult living donor liver transplants, Hopkins was 8th with 18 and UVA was 10th with 17.
  
• Johns Hopkins was 5th with 42 pediatric living liver transplants

SEPTEMBER 11 AND TRANSPLANTS

So what happened to organs for transplants when the planes were grounded on September 11-14? Generally, they went to someone within the local area, where the organs were procured. It appears that all organs were still placed — just not always with the originally intended recipients. Chartered planes with organs were allowed to fly before the airlines resumed travel.
Linda Cheatham learned an interesting fact on September 10 (the day before the terrorist attacks). Her shuttle flight from National to New York was cancelled due to weather problems. She went to the baggage office to get her bag back and the baggage clerk apologized for making her wait so long. The baggage clerk said that some kidneys had come in and that she had to stay with them, until they were picked up by the receiving hospital (Johns Hopkins, in this case). The baggage clerk also told her that all planes carrying organs are renamed “ifeflight” —so the flight is no longer called “United 236” or “American 487” – it is known to the traffic controllers as “Lifeflight 236” or “Lifeflight 487”. These lifeflights get priority on takeoffs and landings. So to speed up any future air travel — just ask to be on a plane with organs!

SCIENTIFIC REGISTRY REPORTS

The Scientific Registry (the transplant statistics) is now at the University Renal Research and Education Association (URREA), a nonprofit organization associated with the U of MI. The site is very easy to navigate, but the type is way too small. One neat advantage — besides ease of navigation is that you can download any information in .pdf format using Adobe Acrobat (a free reader, if you don’t already have it). This allows you to really compare and study the statistics, without flipping from screen to screen.

WATER QUALITY REPORTS

Fairfax County mailed a report on its water quality to all of the residents in the county this summer. Every water district is required to issue such a report or have the information available. It even references those who are immuno-suppressed and where to get information on Cryptosporidium (although it sounds like something Superman would deal with, we all need to be aware of what is in our water). Call the Safe Drinking Water Hotline at 800.426.4791 for further information on dealing with some of these microbial contaminants.

NEW LIVER ALLOCATION PLAN

UNOS has endorsed a new liver allocation plan. All status 1 patients will remain status 1. All other status levels will be eliminated and replaced with the “MELD scoring system.” This system has been validated in seven different data sets, as an excellent predictor of patient mortality. This system addresses the severity of potential recipients’ liver disease, using serum creatinine, bilirubin, and prothrombin time/INR, which results in the MELD score. Final approval of this approach is expected at UNOS’ November board meeting. [Source: Transplant News]

NEW PROPOSALS IN CONGRESS

• Senators Durbin and Collins have introduced the DONATE Act (S.1062) which calls for:
  
• Establishment of a national organ and tissue donor registry resource center
  
• Grants to state agencies for donor awareness activities
  
• Payment of expenses incurred by living donors
  
• A task force to advise Congress on how to improve linkages between state donor registries
  
• Grants to hospitals and OPOs to fund staff positions for organ donor coordinators
  
• A Congressional medial to honor donor families
  
• An Institute of Medicine study of those organizations which have achieved high donation rates
  
• Funding of $5 million for donor awareness projects. [Source: Transplant News]

Senators DeWine and Lincoln and Representatives Camp and Thurman have introduced companion bills (S.880 and H.R. 1839) to provide lifetime immunosuppressive coverage to all kidney recipients, regardless of their retirement or disability status. This means that anyone whose Medicare eligibility is based solely on their End Stage Renal Disease status would have lifetime coverage! Medicare would be the secondary payer behind the recipient’s health insurance, if any. Recipients would be required to continue to participate in Medicare Part B and pay that premium. [Editor’s note: Who knows when or if this bill will pass — but wouldn’t it be fantastic if it did? Then, we could push for coverage of ALL transplants.] [Source: Transplant News]

HCFA GETS A NEW NAME

The Health Care Financing Administration (HCFA), which governs Medicare and Medicaid, got a new name – it is now the Centers for Medicare and Medicaid Services (CMS). The new name reflects the new emphasis on responsiveness to beneficiaries and providers. A $35 million media campaign has begun to promote CMS’ 800.633.4227 number, its www.medicare.gov website, and expanded 24-hour phone lines.

There will be three new business centers: Center for Beneficiary Choices, which will handle Medicare; Center for Medicare Management, which will focus on beneficiary education and the Center for Medicaid and State operations. [Source: Transplant News]

TRIO ON PARADE

TRIO was represented by the TRIO racecars and many marching members at the Kensington Labor Day Parade and the Poolesville Day Parade. Thanks to the TRIO members and others who came out to carry the banner “Transplantation gives back to the community” and hand out bumper stickers and bookmarks, provided by WRTC. Our own Jack and Shirley Gillespie were the honorary grand marshals of the Kensington parade this year. It was great fun to have someone specific to wave at when we passed the reviewing stand.

WE AREN’T FAST BUT WE FINISH

The TRIO racecar competed in the 2001 Michelin/Car & Driver One Lap of America. This is the 8th year that TRIO has been represented. Linda Cheatham and her sister, Peggi Moore, completed the 4,200 mile route and 15 events at different racetracks around the country in 7 days. They finished dead last of the cars that actually finished, although many did not finish. They got 4 TV interviews, 3 newspaper interviews, and 2 radio interviews. During the event, they gave out more than 250 donor cards and bumper stickers — all to show the public that “Transplantation Works.” The plans for 2002 are beginning to take shape and we hope to have two cars next year — with Mike and Pilar Garret back in the race. There is the potential for MAJOR media coverage next year. They raised over $6,000 for NCAC this year.

STANFORD STUDY SAYS PAIRED EXCHANGES INCREASE TRANSPLANTS

Paired exchanges in which donor A gives a kidney to recipient B and recipient B’s donor gives a kidney to recipient A can increase the number of transplants. This is done when the donors don’t match their intended recipient but do match another recipient. WRTC has done such transplants locally. (See story on page 5.)

The second type is an indirect exchange. The donor offers a kidney to someone on the waiting list. In exchange, the donor’s relative gets high priority for the next non-living donor kidney. The Stanford study indicates that 800 to 1,500 more kidney transplants could be done each year under these programs. [Source: Transplant News]

NEWS IN TRANSPLANTATION

• Swedish doctors have found that transplanting 20% of the donor’s liver along with the new kidney seems to reduce HLA antibodies that are responsible for rejection. [Source: Transplant News]
  
• Four men have now received the new, completely internal, artificial heart and all are doing well. The first recipient has been on excursions outside the hospital.
  
• The Mayo Clinic has found a potential way to transplant those recipients with high antibody levels and who have waited up to 10 years for a transplant. The new technique, called “positive crossmatch transplantation” involves plasmapheresis, splenectomy and immunosuppressive medications to greatly reduce the antibody levels. They have done 4 such transplants and only one has had a rejection episode. Two of the patients are more than a year out on their transplants. [Source: Transplant Chronicles]
  
• A study in the Netherlands, of heart patients using left ventricular assist devices (LVADs) found that, combined with an exercise program, their endurance after twelve weeks was as good as a new heart. All were found to have a complete recovery of organ function, without a transplant. [Source: Transplant News]
  
• The March 8th New England Journal of Medicine reported that those who received living donations before dialysis experienced a 34% reduction in transplant failure the first year, 44% reduction the second year and 62% reduction thereafter. The researchers speculated that early transplantation might slow down the immune mechanisms. [Source: Transplant Chronicles]
  
• Spain has been using “non-heart beating donors’ aggressively for the past three years (as opposed to “brain dead” donors, generally used in the US). The Spanish transplant centers have begun using subjects who died in the streets, if the individual was under 50 years of age and whose heart had stopped beating for less than 15 minutes. During the first three years, 53 of 111 potential donors became actual donors. So far, 72 of 83 kidneys transplanted are still working and 8 of 8 livers are still functioning. They also recovered corneas and islet cells. As radical as it sounds, the program in Spain is working. [Source: Transplant Chronicles]
  
• Partial liver transplants (added to the existing liver) can cure some metabolic diseases, such as hemophilia. [Source: Transplant Chronicles]
  
• A new class of drugs apparently can reduce the risk of kidney damage in people with Type 2 diabetes. These drugs are angiotensin receptor blocking agents (ARBs) according to the New England Journal of Medicine. [Source: Washington Post]
  
• A man who lost part of his thumb in a machine accident had a new tip created from his own cells grown on a coral scaffold. Two years later, he has a normal length thumb with normal strength and some sensation. [Source: Transplant News]
  
• Taking clotrimazole, the oral anti-thrush medication, at the same time as tacrolimus can raise the tacrolimus levels to toxic levels. [Source: Transplant News]
  
• Dogs and cats are now getting transplants – Some veterinary schools are now doing such transplants, mostly kidneys for cats. Dogs are more likely to reject organs. The surgery costs $4,000 - $7,000 plus the cost of immunosuppressive drugs (and the problem of getting the pills down the animal’s throat daily!) The cat owners must also adopt the cat donor. There is an 80% success rate and the animals usually live 3-6 years after transplant. These are done at UC-Davis, University of Wisconsin, North Carolina and Pennsylvania. [Source: Transplant News]
  
• The District of Columbia is studying a bill to allow employees up to 30 days leave for organ donors and seven days leave for bone marrow donors, similar to the existing Federal law. [Source: NKF Insight]
  
• Maryland is studying new transportation options for dialysis patients and possible inclusion of patients with disabilities in the Medicare supplement programs. [Source: NKF Insight]
  
• Surgeons are pushing the envelope on donor age. They are finding that using older donors (between 60 and 70) for older recipients seems to be working just fine. [Source: Washington Post]
  

• Some ethicists and surgeons at the University of Chicago think that living liver donation is evolving too rapidly and could be risky, according to a New England Journal of Medicine article. They suggest that government agencies or private insurers step in to regulate the field. They said too many hospitals are doing the complicated surgery or planning to start, without having the experience to perform the surgery safely. Other surgeons disagree, citing only one death in the 500 operations that have been done. [Source: New York Times]
  
• Tissue banks have been operating without government or private oversight, according to testimony provided to Congress in May. Some of the problems are: retesting rejected tissue in hope that it will pass the second test and be usable; pooling of material from several donors (contamination); mishandling of donors and excessive profits on sale of tissues. [Source: Associated Press]
  
• Many bottled drinks contain herbs, which can be a problem for transplant recipients — for instance; Sobe contains St. John’s wort, which interacts negatively with immunosuppressive drugs. [Source: The Today Show] [Editor’s note: Be careful what you drink and read the labels. NEVER take anything with St. John’s wort. Check with your doctor before taking ANY herbal medicines or supplements.]
  
• The world’s first laryngeal transplant was performed three years ago the Cleveland Clinics and the 40-year-old man can speak so well, that he is now a motivational speaker. [Source: Transplant News]
  
• Researchers at the University of Alabama have, for the first time, succeeded in transplanting and maintaining pancreatic islet cells in diabetic monkeys without long-term immunosuppression. They have applied to the FDA to start phase one trials. [Source: Transplant News]
  
• Representative James Hansen introduced a bill to give donor families a $10,000 tax credit (equivalent to the price of a funeral) against the decedent’s estate. The donor must have indicated the wish to donate before death. [Source: Washington Post]
  
• Ohio is working on a 30-day leave proposal for state employees who are organ donors. Currently, their pay is reduced to 70% after one week of sick leave. [Source: Transplant News]
  
• Drugs known as “statins”, generally given for high cholesterol, have been found to be beneficial in preventing heart attacks and strokes, as well as diabetes and Alzheimer’s disease and they lower the rejection rate of certain organ transplants and may have some potential in treating cancers. [Source: Washington Post]
  
• Scientists at Johns Hopkins have found that the heart has the ability to repair itself. This may lead to giving heart-attack victims injections of their own laboratory-grown stem cells to stimulate the growth of new heart muscle. [Source: Associated Press]
  
• A bill to provide Medicare coverage for pancreas transplants has been introduced in the House. Kidney/pancreas transplants have been covered under Medicare since July 1999, but pancreas only transplants are not yet covered. HR1361 is known as the Insulin-Free World Medicare Pancreas Transplantation Coverage Act of 2001. [Editor’s note: How is that for a mouthful of a name?] [Source: Transplant News]
  
• Islet cell transplants are doing well. Some patients are now insulin-free for 2 plus years, according to a University of Alberta (Canada) study. [Source: Transplant News]
  
• Contrary to findings in earlier studies, liver transplantation can be safely performed in selected HIV patients, according to the University of Pittsburgh. Six such transplants have been done since 1997 and 4 of the patients are doing well. [Source: Transplant News]
  
• Small bowel transplantation may benefit those with life-threatening complications associated with total parental nutrition, according to the University of Illinois — Chicago, which has done three such transplants. The recipients are back on normal diets and have resumed normal activities.
  
• According to a small study at the University of Cincinnati, about 1/3 of patients receiving heart and/or lung transplants from donors with certain types of cancer may develop that cancer. Other types of cancer did not transfer to the recipients. [Source: Transplant News]
  
• The Department of Health and Human Services is funding a new study on the care of living donors. The University of Tennessee received $100,000 for the 2-year grant. It will include both review of transplant center procedures and interviews with donors to determine their experiences. [Source: Transplant News]
  
• Herbal medications can increase risk of surgical complications. University of Chicago scientists found that such herbs as Echinacea, gingko biloba, garlic, St. John’s wort and valerian, if taken within two weeks of surgery could cause such complications as unacceptable changes in heart rate, problems with blood clotting, alter the immune system and changes to the effects and duration of anesthesia. [Source: news.bbc.co.uk]
  
• The University of Chicago has developed a machine that pumps blood through a kidney and produces urine — outside the body. This portents great things in being able to keep kidneys longer outside the body and maybe use kidneys that today are considered unusable. [Source: Chicago Sun Times]
  
• Good news — Rapamune 1 mg tablets are now available – no longer have to deal with the liquid, OJ and refrigeration.
  
• The Vatican is encouraging research into the use of animal organs for transplant, due to the organ shortage. The Vatican issued a position paper on this topic on October 3. [Source: Associated Press]
  
• Side effects improve and rejection episodes resolve when heart transplant recipients are switched from cyclosporine to tacrolimus according to researchers in Holland. Blood pressure and cholesterol levels improved significantly. [Source: Transplant News]

HHS MEETINGS ON ORGAN DONATION

On November 29 and 30, HHS will host a meeting of all the Organ Procurement Organizations to discuss the current status of state organ donor registries. Meeting is by invitation only, so we aren’t invited. Meeting at the Hyatt Regency in Bethesda.

On December 3 and 4, HHS will host the first meeting of the Secretary’s Advisory Committee on Organ Transplantation. The size was recently increased from 20 to 41 members. The charge of the committee has been changed to focus on ways to increase organ and tissue donation. The meeting will be held at the Hyatt Dulles and is open to all. [Source: Transplant News]

MEMBERS DO DOUBLE DUTY

Trudi did double duty or maybe triple duty by doing a presentation at every Mass on both Saturday and Sunday in July at a church in Derwood, MD. She was there from mid-afternoon Saturday until after lunch on Sunday, with a trip home in between.

Claude Brady helped out with a health fair at the FBI Academy in Quantico, VA.

TRIO-NCAC SUPPORTS WRTC GRANT APPLICATION

Our chapter provided a letter of support for WRTC’s efforts to obtain a grant for additional organ donor awareness activities. WRTC has been most supportive of TRIO and we were more than happy to return the favor, especially since it didn’t cost us any money and will help us in future organ donor efforts.

WEBSITES OF INTEREST

TRIO NCAC www.TRIO-NCAC.org
TRIO National www.trioweb.org
UNOS www.unos.org
Coalition on Donation www.shareyourlife.org
US Government www.organdonor.gov
Scientific Registry (stats) www.ustransplant.org
Donors www.organdonor.gov
National Kidney Foundation www.kidney.org
Second Wind Lung Assoc. www.2ndwind.org

HHS’ NATIONAL DONOR RECOGNITION CEREMONY

The National donor recognition ceremony was held on Sunday, July 8. It is held in Washington, DC in odd years and at the Transplant Games in the even years. Our chapter donates silk rose bouquets to each donor/donor family on behalf of all recipients. The living donors and donor families are invited to Washington, with the expenses paid by their OPO, for a weekend of workshops and activities, highlighted by the recognition ceremony. The Division of Transplantation and the National Kidney Foundation jointly sponsor this program.

Secretary of Health and Human Services, Tommy Thompson, was the keynote speaker. There were also a tissue recipient and a marrow recipient giving thanks to the donors and the donor families, as well as an organ recipient. Linda Cheatham represented TRIO and organ recipients and Dr. Ken Moritsugu was there as a donor father and husband, as well as the moderator. Daryl Hollis read the recipients’ names as they were presented with our bouquets and the donor medal from the Gift of Life group. The Marine Band played at the opening of the ceremony, which included the trooping of the colors by the Armed Forces Color Guard. This is always a moving (many hanky) ceremony. Our thanks to local TRIO chapter members who attended and helped with the flowers, candle lighting, organization and represented all recipients. As the National TRIO Board was meeting here that weekend, many of the National Board members also attended.

CSpan videotaped the entire event and a copy of the tape is available for purchase by calling CSpan or on their website. The Division of Transplantation is also working on an edited version of the event.

\As a result of speaking at this event, Linda Cheatham received an email from Doug Harrell, a donor family. He complemented transplant recipients and donor families for working together, but expressed one concern – the use of the word “cadaveric donor.” Because Webster’s defines a cadaver as “a dead body, especially one intended for dissection,” he and other donor families find this term disrespectful and would prefer “posthumous donor” which parallels the term “living donor.” We have generally changed the transplant terminology from “harvesting” to “recover,” so let’s work on changing this terminology, as well.

INOVA FAIRFAX NEW ADDRESS

The Inova Transplant Center, for all but hearts and lungs, has moved to:
Inova Outpatient Center
8503 Arlington Blvd., Suite 200
Fairfax, VA 22031
703.970.3200 or 800.358.8831

It is located at the corner of Arlington Blvd (Route 50) and Prosperity Avenue. The heart and lung transplant center clinics remain at Fairfax Hospital
CONGRESSMAN SPENCE AND CONGRESSMAN MOAKLEY DIE

Congressman Floyd Spence of South Carolina died in August after a brain clot. He was the longest-living double-lung recipient (1988) and received a kidney transplant last year. He was a great supporter of transplantation in Congress. [Source: Transplant News]

Congressman Joe Moakley died, May 28, at age 74, suffering from leukemia. He served 49 years in elected office. He had a liver transplant in 1995 and had recently had a hip replacement and one of his kidneys removed. He co-chaired the Congressional Task Force on Organ and Tissue Donation. He, too, was a great supporter of transplantation in Congress. [Source: Los Angeles Times]

UNDERGROUND FOR TRANSPLANT DRUGS

The June 21st Wall Street Journal reported on a transplant recipient in Phoenix, who stockpiles transplant medications for recipients without the funds or insurance coverage to buy their drugs. While technically illegal, it appears that there are such underground providers in many major cities. Since no money changes hands – the drugs are donated by individuals with over-supplies or who have changed medications, by those who have died or sometimes by drug companies – law enforcement has been looking the other way. These people are risking their liberty to provide needed medications. Doctors and nurses are prohibited from providing these drugs that are being recycled. [Editor’s note: No, we don’t know of anyone locally who can provide this service.]

IN MEMORIAM

We are deeply saddened to report the loss these members:

Christa Imhoff died last year, but unfortunately, we didn’t know about it until last month. Our condolences to her family.

Lynn Cutler died in July, after receiving a living donor kidney in June. Apparently, she developed complications in September and died in her sleep at the hospital. Our condolences to her family.

Earthia Dorothy Dorsey died on September 10. She lived with her gift of life for almost 10 years (transplanted November 11, 1991). Our condolences to her family.

Lynn Denson died in June after many months of struggle. She had diabetes from childhood and received a kidney transplant many years ago. She developed complications in the spring and never really recovered. Lynn was famous for organizing our pizza outings. Our condolences to her family.

Ludwig Richard Benjamin “Benno” Duykers died on June 6 after a battle the last few months. Trudi Anderson wrote the following about Benno in an email:

Indeed this is grim news for all of us to absorb that knew Benno. There is a phrase frequently included in Catholic Masses “no more suffering, no more tears, no more sadness.” Benno is now at peace – we are left to mourn. In your thoughts and prayers, remember Nancy, his wife, the children and grandchildren, as they are the ones who suffered with him on his final journey.

Benno was the first TRIO member I met. I was “in residence” at Fairfax Hospital those many long weeks preceding surgery. With an unusual accented English, a voice spoke to me from the door, asking if he could come in to visit. This was Benno, his enthusiasm and encouragement assured me there is life after transplant and helped me understand the “other side” that only the doctors had observed from patients. This was one of many visits from Benno. Then he sent other heart recipients – Ed Linz, Vicki Rhoades, Claude Brady and even Jack Herrity. All these people became my cheerleaders during a time that could have been the time for me to lose hope and trust that “a change of heart” would do wonders for me. While we mourn him, it is up to us to continue what he did for other candidates and recipients.

He had volunteered for WRTC at least 18 times and that doesn’t count all the times he volunteered for TRIO, NKF and other groups. .He was a true friend to transplant candidates, recipients and donors

George Brady died on August 22, 16 years and 1 day after receiving his heart transplant. Our condolences to his family, especially Nancy, his wife, and Claude, his brother. The following is an email sent by George’s sister-in-law to friends the night before George died:

On August 21, 1985, the phone rang at my sister’s house. It was about 11:00am. The call was an answer to their prayers but a nightmare for the mother of the 18 year-old boy who had just drowned. Picking up his pre-packed bag, she and her husband left for Baltimore. By 3:00pm, he was prepped for surgery and ready to go. What he didn’t see was the helicopter that landed on top of Johns Hopkins Hospital, carrying a heart neatly packed in a tiny cooler. What none of us heard was the sound of the life support system as it shut down. . .the machine that had kept an adolescent child alive long enough for teams of specialists to recover skin, retinas, liver, heart and lungs. It all ended with a barely audible “click.” Within 12 hours, that same heart was pumping blood through the veins and arteries of a 46 year-old man. Within 36 hours, it was supplying enough oxygen-rich blood to enable the man to pedal a stationary bike for five minutes. . .more exercise than his diseased heart had allowed him to do in three years. His pale skin now had a pinkish, healthy glow that comes from renewed life. Within 120 hours, it was efficient enough to allow the man to dress himself, pack his tiny bag and walk to the car. Tonight, or definitely with the next 24 hours, that same heart will stop beating. After 16 years of hard, labored pumping, it will definitely rest. His kidneys have stopped filtering deadly poisons from his system and his eyes will never open again. And after 62 years of life, love and hard work, the man will finally be at peace. After 36 years of marriage, his wife will face life alone for the first time.

He’ll leave behind an empty chair at the table on Thanksgiving Day. He’ll leave behind a son that would make a father proud. He’ll leave behind a space on the family room sofa when Christmas packages are being passed around. He’ll leave behind an empty space in the queen size bed that he shared for 36 years with a woman he loved and who loved him in return. He’ll also leave a mark on friends that he made over the years. Friends that knew they could always count on him for help whenever it was needed. Personally, he’ll leave behind a void in my life. A space that had been occupied by the certain knowledge that he would help when I had a problem or give me hell when he thought I was being foolish. This was the man who walked me down the aisle on my wedding day and watched me heal, when my heart was shattered into hundreds of fragmented pieces.

After he’s gone, people will still buy groceries, sit in traffic jams on their way to work and run through the blind sameness of their daily lives. The cycle will continue. No flags will fly at haft-mast and no public offices will close in his memory, but he’ll live in my memory as long as I live.

Transplant Anniversaries

Transplant Anniversaries

Date	Name	Organ	Hospita
10/1 /91	Christina Peterson	Heart	UPMC - Pittsburgh
10/1/00	Paul Vezina	Single Lung	Inova Fairfax
10/10/88	Alisann Collins	Kidney	Washington Hospital Center
10/10/98	Beverly Daniels	Kidney/Pancreas	University of Maryland
10/12/85	Jack Gillespie	Heart	Johns Hopkins
10/12/98	Joe Schmitt	Kidney	Washington Hospital Center
10/ 25/84	Mary Ellen Heibel	Kidney	Walter Reed
10/28/96	Michael Anderson	Kidney	Washington Hospital Center
10/ 30/96	Nancy Ing	Kidney/Pancreas	UMPC - Pittsburgh
11/1/92	Jack Youngworth	Kidney	Washington Hospital Center
11/2/91	James Collins	Heart	Johns Hopkins
11/2/91	Kathleen Fisher	Kidney	Washington Hospital Center
11/2/96	Mark Immerman	Kidney	Baystate Medical Center
11/4/75	George Franklin	Kidney	Georgetown University
11/5/94	Brian Sullivan	Liver	John Hopkins
11/5/8?	Amy Luxner	Heart	Allegheny General Hospital
11/9/90	Charles Ables	Kidney	Washington Hospital Center
11/9/95	Brian Mannix	Bone Marrow	Dana Farber Cancer Center
11/13/93	Sandra Tirnauer	Single Lung	Pittsburgh Presbyterian
11/ 18/95	Patricia Klein	Kidney	University of Wisconsin
11/19/92	Gloria Brooks	Liver	Howard University
11/21/81	Paul Shannon	Kidney	Georgetown University
11/23/94	Ron Green	Heart	Inova Fairfax
11/24/93	Jim Dueppen	Liver	University of Wisconsin
11/26/97	Arline Minot	Kidney	Inova Fairfax
11/27/97	Paul Anderson	Kidney	Georgetown University
11/8 /89	Kenneth Warner	Kidney	Washington Hospital Center
11/ 30/94	Danielle Dumas	Liver	Children's - Pittsburgh
11/30/98	Oliver Lancaste	Kidney	Washington Hospital Center

Help Wanted.

Writer for newsletter. Various people supply the material. Someone is needed to write the appropriate mini-articles. Requirements: word processor, email and/or fax. Call Linda Cheatham at 703.924.9472 to volunteer.

Another Party!!!

George Franklin is celebrating his 26th, yes his 26th kidney transplant anniversary. Everyone is invited to attend his celebration on November 10 at 5:00pm at the TGIF’s in Alexandria (4650 King Street). Dutch treat. Call George at 202.584.1029 to RSVP. This is always a good party. He will also be bringing his photo albums of various transplant events. Come one, come all to Celebrate Life.

DOT Meeting on Workplace Partnership

Linda Cheatham, representing TRIO National, attended a meeting at the Division of Transplantation on October 19. The meeting included representatives from various organ procurement organizations, the Red Cross, blood bank association and marrow programs. TRIO was the only organization representing recipients and donors.

The purpose of the meeting was to have a “brain storming” session on how to get more employers, big and small, in to the Workplace Partnership program. There will be more sessions and we will keep you posted on its progress.
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