ORGANized

SOS

Some of you are familiar with Talking It Over, a newsletter I began self-publishing seven years ago after my own liver transplant. It has been fondly referred to as a ``support group by mail'' and consists of anonymous letters from around the country written to me by its subscribers. It reaches many who have no other way of communicating with other transplant patients, either because they are too ill or because there is no established network where they live. It appears to be especially valuable to new transplant patients, both those on the list and those who have recently received an organ, but is also a good resource for old-timers who may want to discuss some post-transplant experience with others.

Talking It Over is now in danger of "going out of business" because I am not receiving enough letters. With a little help from TRIO membership, I can continue this worthwhile publication. Please write me a letter about your transplant experience; the topic can be upbeat or not, long or short, ask questions, offer words of wisdom, relate your personal story and that of your loved ones, or just be a friendly hello from one transplant patient to another. They will all be published anonymously, so you don't have to worry about expressing your feelings honestly.

Send your letters to Transplant Recipient Communications, P.O. Box 134, Ashland, MA 01721. If you would like also to subscribe, that would be wonderful too. Subscription cost is $12.00, which helps to cover the cost of printing and postage.

Member news

• Hip, hip, hurray! Jeff Wise's wait is finally over. He received his liver transplant on April 25, and as of this writing was already home and doing well. Congratulations Jeff!
• Dick Ficociello recently checked into Whittier Rehabilitation Hospital in Haverhill for a tune-up. As some of you know, Dick's recovery from lung transplant surgery has been a slow, bumpy one. His doctors are trying to build up his strength so that he can undergo lung reduction surgery should it become necessary. He'd love to hear from you.
• We recently received a letter from Paula Remy, who celebrated her 2-year transplant anniversary last month. Paula shares her anniversary celebration with her sister Jackie, who donated a kidney to Paula. So congratulations to Jackie too!
• TRIO members Sid Cohen and Faith Kaplan were recently honored with the "Gift of Life Award" by the National Kidney Foundation of Massachusetts and Rhode Island. The award acknowledged their extraordinary efforts to promote organ donor awareness. Keep up the good work guys!
• Last year, Tufts Health Plan featured member Rachel Holm, a 2-year old liver recipient, in their annual report. This year, Rachel's story is the focus of an aggressive TV advertising campaign for Tufts. Although designed to promote their product, the ads also send out a clear message that transplantation works. Thanks to Tufts and to Rachel and her family for sharing their story.

Ed. Note: Let us know what's happening in your life so we can share it with other members. Transplants, weddings, graduations, children, grandchildren, new jobs, illnesses. . . whatever is important to you we want to hear about.

Director's report

As Director, I get to represent TRIO New England at a variety of conferences and meetings on topics related to transplantation. The last several weeks have been unusually hectic, and I thought you might me interested in hearing where TRIO New England has been lately.

• Region 1 UNOS Clinical Forum. Several of these forums are held throughout the year for transplant coordinators, social workers, and other interested professionals. Topics at the most recent forum were osteoporosis and the living-donor lung program.
• Washington, D.C. I was invited to our nation's capital as the guest of the National Transplant Association for the purpose of explaining how the current inequities in organ allocation have created above average wait times for New England patients. While there, I attended the hearing chaired by Sen. Bill Frist on organ and tissue donor awareness; learned about Sen. Dorgan's Organ Donation Insert Card Act, which directs that organ donor information be sent with each income tax refund check mailed; and met with Massachusetts Congressman Joe Moakley.
• Massachusetts Registry of Motor Vehicles. On the flight to D.C., I was seated behind Gov. Weld (who would believe he flies coach) and used the opportunity to present him with a green pin and bring up the subject of changing the Mass. driver's license to incorporate an organ donor card. Follow-up letters led to a scheduled meeting with Aubrey Haznar, Public Relations Director, Registry of Motor Vehicles. Don't expect to see this change effected immediately, because there is resistance to it, but TRIO New England will continue to chip away at that resistance every chance it gets.
• American Association of Office Nurses. Introduced TRIO New England to this conference of nurses.

Marcia's corner

• The average hospital stay is down to 6.8 days, the shortest in the last 50 years, and more patients than ever are being treated without being admitted, according to an industry survey. Outpatients received 384.8 million treatments in 1994, up 16 million from 1993. Admissions were 33.1 million, the fewest since 1972.
• The American Dental Associations and the Visa Credit Card Co. are offering a free brochure, "Dollars and Sense: Your Guide to Managing Dental Costs." To order, call 1-800-461-8472.
• Want to keep your wits sharp well into your golden years? Don't neglect your education, stay physically active, and protect your lungs, concludes a recent study of the things to do to guard against age-related mental decline.
• Short-term memories: We forget 75% of the information we receive within 48 hours.
• Wired: The average American makes 184,702 phone calls in a lifetime. Of these, 166,699 are local, 17,827 are long distance, and only 176 are international. (How many of these calls are transplant related?)

Milestones

And this year's freshman crop, who are celebrating their first transplant anniversary, are Ambria Bilotta (liver, MGH), David Cannavo (heart, B&W), Kevin Coleman (kidney, NEMC), and Jessie Dill (kidney, Maine Medical Center).

Best wishes to you all.

Member profile

This month I would like to introduce you to the Bilotta family: mom Sheila, dad Joe, sons Joe (7) and Zachary (4), and daughter Ambria (20 months). Ambria is one of our youngest TRIO members and a successful liver transplant recipient.

The Bilottas have lived in Leominster, MA, since their marriage 8 years ago. Joe is a postal employee and Sheila runs a home day-care business. They were a pretty typical suburban family until the news of their daughter's life-threatening illness changed their lives forever.

Ambria was born in September 1994 and was diagnosed at 4 weeks with biliary artresia. When she was only 5 weeks old, doctors attempted a Kasai procedure to unblock her ducts, but it was not successful. A liver transplant was her only hope.

Though the family was devastated and frightened for their baby daughter and sister, they allowed their local newspaper to do a series of articles chronicling Ambria's life and its impact on the family.

Joe, Sheila, Joe, and Zachary where overjoyed when they received a call on May 25, 1995: there was a donor for Ambria. The next day, Ambria was given a new liver and a new lease on life. Within a week of her transplant, Ambria was sitting up and trying to do all of the normal baby things she had never been able to do before. And Sheila tells us that Ambria has continued to blossom and is indeed a typical (terrible two's?) little girl.

Joe and Sheila volunteer their time whenever they can to help promote organ donor awareness. Ambria is often with them as living proof. The family has recently been contacted by Channel 5 to do a Healthbeat piece on Ambria. We look forward to watching our young star shine on television, as she shows the viewing audience that transplantation does work.

News briefs

• The New England Organ Bank reports the following patient waiting lists, as of March 1996:

  	Kidney			1181
  	Kidney/pancreas		75 
  	Pancreas		10 
  	Pancreas islet cells	0 
  	Liver			350 
  	Small bowel		0 
  	Heart			35 
  	Lung			82 
  	Heart/lung		5 
  
  
  Its organ recovery numbers for 1995 are: 
  
  	Kidney			338 
  	Liver			144 
  	Pancreas		19 
  	Heart			79 
  	Heart/lung		0 
  	Single lung		15 
  	Double lung		10 
  	Small bowel		0 
  	Bone			185 
  	Heart for valves	167 
  	Saphenous veins		41 

• The Massachusetts Water Resources Authority has notified TRIO New England that in June it will be making improvements in water quality to reduce lead and copper levels at consumer's taps. The planned improvements will involve an increase in alkalinity and a stabilization of the pH. In addition, the MWRA is evaluating the possibility of making adjustments at its disinfection facilities, which could involve increasing mono~chloramine levels. If you believe for health reasons that you may be sensitive to changes in your water's alkalinity, pH, or sodium levels or by monochloramine disinfection changes, consult with your doctor.

  For a list of affected communities and a more detailed description of the planned changes, contact the TRIO office or the MWRA at 617-242-LEAD.

News from Vermont

Also, members of TRIO took part in an award ceremony to honor a donor family and recipient. Vermont Miracle Workers, which is headed by Vermont AARP, works to encourage Vermonters to consider organ donattion. This year's award went to a living donor, April Herzog, who donated a kidney to 5-year old daughter Myra one year ago--both are doing great. The award was presnted to them by Vermont Governor Howard Dean on May 20.

The next meeting of the Vermont group will be on June 13 at 7:00 p.m. Dr. Jeff Reese, kidney transplant surgeon at Fletcher Allen Hospital in Burlington, VT, will be the guest speaker.

News from Maine

NOTDAW was a busy week for the Maine group, and they succeeded in getting lots of media attention. James Brown and Paul Cox were on the morning Bud Sawyer show on WPOR in Portland talking about organ donation. The group's efforts at passing out organ donor cards at the Maine Mall received coverage from two of the three major Portland stations. Anne Knights, TRIO member and heart recipient, was the subject of a story by WGME-TV, the local CBS affiliate. In addition, Bangor CBS affiliate has done a story about member Christine Packard and WCSH-TV, the Portland NBC affiliate, is following member Sharon Bearor and her sister as they prepare to be living lung donors for Sharon's son, Spencer. Surgery is expected to take place at Mass General in July. We wish them all well.

The Maine group is planning a picnic for all TRIO New England members on August 3 at the home of Paul and Mona Chiarantona. Details are forthcoming, but put it on your calendar now.

The next meeting will be on Wednesday, June 5. Guest speaker will be Robert Clark from the Portland Social Security Office. See you there.

Upcoming events

June 27.Social Security Administration Francine Kollias of SSA will discuss Medicare coverage, how to get it and get off it.

OTHER MEETINGS

In addition to the educational/ support series held at the Lahey Clinic, TRIO New England sponsors meetings at the following locations:

• Massachusetts General Hospital. 12:00 noon on the second Sunday of each month in the Walcott Room of the Wang Ambulatory Care Center. For more information, call Joe Ferreira at 617-491-0819.

• Maine Medical Center, Portland, Maine. 7:00 p.m. on the first Wednesday of each month in the Dana Education Center. For more information, contact the office.

• Northwest Medical Center, St. Albans, Vermont. June 13, 7:00 p.m. For more information, call Nancy or Joe Bell at 802-524-7318.

TRIO Golf Classic. June 17, South Shore Country Club, Hingham, MA.

More information

Martin Smith
TRIO New England
Lakeside Office Park
607 North Avenue, Door 14
Wakefield, MA 01880
Phone: 617-224-1270
Fax: 617-224-1929
email: BYGJ31A@prodigy.com

 

Last modified: 11 May 2000