Saturday, December 31, 2005

"For Auld Lang Syne"

Millions of people will sing "For Auld Lang Syne" as we ring in the New Year tonight and most will not know the exact meaning of the words. Here's a link to the most popular version of Auld Lang Syne and a translation that shows everytime we sing 'for auld lang syne' we are simply saying "for old long ago".

I Wish You a Very Happy and Prosperous Year 2006

Friday, December 30, 2005

Donate Life Float in 2006 Rose Parade

The 117th Rose Parade, themed It's Magical, will take place on Monday, January 2, 2006 at 8:00am PST featuring spirited marching bands from throughout the nation, majestic floral floats and high-stepping equestrian units.

For millions of us, the Rose Parade has been must TV viewing as we rest and relax after the holidays and New Year's eve celebrations. Since 2004 the Rose Parade has taken on special meaning for our transplant community with the entry of the Donate Life float.

Lung transplant recipient Gary Foxen suggested the idea of a Donate Life Float entry in the Rose Parade. In 1999, suffering from severe emphysema, Gary Foxen received a lung transplant. A couple years later, Gary wrote the letter originally suggesting the entry of a Donate Life-themed float in the Rose Parade as "a way to repay society for this wonderful gift" of life. Last June, Gary was honored with the Coalition on Donation’s James M. Wolf Award for his "inspiration and commitment to increasing organ and tissue donation." Gary is a rider on this year's float.

The Donate Life float and its 23 riders represent millions of people touched by organ and tissue donation, including donor families, living donors, transplant recipients and transplant candidates.

News from Transplant Living
2006 Donate Life Rose Parade Float Features 'Life Transformed' by Organ and Tissue Donation

Los Angeles, CA -- A nationwide partnership of organizations, united to inspire all people to "Donate Life: through organ and tissue donation, unveiled its 2006 Rose Parade float design June 30, 2005 at the Association of Organ Procurement Organizations (AOPO) annual meeting in Los Angeles.

The 2006 Donate Life Rose Parade float, themed Life Transformed, will mark the third appearance of organ donors, donor family members and transplant recipients in America's New Year Celebration. The float's 22 riders--whose lives, families and communities have undergone a physical, emotional and spiritual transformation through being touched by organ and tissue donation--will be surrounded by new life that has sprung forth from the shelter of a fallen tree. The riders will hail from communities throughout the nation, including California, Illinois, New York, Ohio and Oklahoma.

The Donate Life float adds an emotional dimension to the Tournament of Roses Parade theme, It's Magical. "A life touched by organ and tissue donation and transplantation is a life transformed," said Bryan Stewart, chairman of the Donate Life Rose Parade Float organizing committee and director of communications for OneLegacy. "While organ and tissue transplantation helps hundreds of thousands of people regain their health each year, giving and receiving the gift of life has a profound--many would say magical--impact on the lives, families and communities it touches." Full Press Release

For more information:
Official Float Web Site

Official Tournament of Roses Web Site

Wednesday, December 28, 2005

Canadian Transplant Games, Edmonton, Alberta August 8th to 13th, 2006

The City of Edmonton is hosting the 2006 Canadian National Transplant Games. As much as the Games is an athletic event that calls attention to the success of organ and tissue transplantation, it is also a celebration of life among recipients, their families and friends. Athletes compete at an extraordinarily high level, demonstrating the physical success of transplant surgery and the need to increase organ donation. More..Canadian Transplant Association, Alberta Edmonton Transplant Games Aug 8-13, 2006

Tuesday, December 27, 2005

U.S. Transplant Games June 16-21, 2006 Louisville, KY

The U.S. Transplant Games is a four-day athletic competition among recipients of organ transplants. Competition in the U.S. Transplant Games is open to anyone who has received a lifesaving solid organ transplant--heart, liver, kidney, lung, and pancreas. Bone marrow recipients are also eligible to participate. As much as the Games is an athletic event that calls attention to the success of organ and tissue transplantation, it is also a celebration of life among recipients, their families and friends. More..Transplant Games

Sunday, December 25, 2005

April is National Donate Life Month in the U.S.

Now is the time to start planning activities in your community.

The History of National Donate Life Month (observed in April)

In 2003, President Bush first announced that the month of April will be observed as National Donate Life Month, a time to raise public awareness of the critical need for organ, tissue, marrow, and blood donation.

Originally known as National Organ and Tissue Donor Awareness Week and celebrated for one week in April, that observance was the result of smaller, independent efforts around the Nation to recognize the altruism and generosity of organ and tissue donors.

In 1983, the Congress of the United States "authorized and requested" the President to "issue a Proclamation designating April 22 through April 29, 1984 as National Organ Donation Awareness Week." Aware that many more tissue donations are made each year than organ donations, "Tissue" was soon added to the name, and the third full week of April became the traditional time of observance.

Over the years, many participating organizations and individuals found it restrictive to limit special donation awareness efforts to one week in April-especially as the week often conflicted with other observances such as National Volunteer Week, or at times, with Passover or Holy Week.

The change to a month-long observance of "National Donate Life Month" underscores the importance of donation of not only organs and tissues, but also marrow and blood. Having a month focused upon donation awareness and donation also gives donation and transplant organizations more time to sponsor public awareness activities in their communities.

Seasons Greetings

Wishing you the happiest of Christmases and Hanukkahs and Kwanzaas and Festivi, a beautiful holiday season and a new year of peace and happiness. Merv.

Friday, December 23, 2005

Reviews of Blogs

The Health Care Blog The Wall Street Journal says this is a “must-read” blog. It is hosted by Matthew Holt, a healthcare consultant, researcher, and strategist. The site is frequented by many industry and information tech professionals but also by many doctors, students, and patients. This blog has extensive links to other health and medical blogs that Holt rates highly. I especially liked the comparisons to health care systems around the world as the debate continues about our's here in Canada.

A Chance to Cut Is a Chance to Cure
A perspective on medical and other issues from a general surgeon. A highly recommended site with many excellent links.

Kristy Mitton
Kristy, 23, has Cystic Fibrosis and is waiting for a lung & liver transplant at Toronto General Hospital. Her passion is horses and she hopes to be able to enjoy them for many years to come. Her blog is a plea for organ donation.

Medicine and Man
Putting medicine into perspective. Continuously updated by a doctor practicing in India. Excellent and extensive links.

Kidney Notes
Notes on Medicine, Science & Technology from a Nephrologist in New York City. Well written and thoughtful posts. Extensive links. Highly recommended.

Slaying The Fat Monster
This is an excellent diet & nutrition blog.

Healthwise, Agewise
How to grow old healthfully and gracefully. A brother and sister publish this excellent blog with advice on lifestyle, diet and excercise. He is a physics professor and she is a medical doctor.

Breast Cancer Central
The latest information and resources for survivors and the ones who love them.

Two Hands
Jeannette from California is publicly sharing her breast cancer experience in the hope of educating people about breast cancer and how it impacts a person emotionally, spiritually, psychologically, and physically. Good links also.

Young Savannah's Liver Transplant
The story of a young liver transplant recipient who received a 2nd transplant December 9, 2004 and how this has brought economic hardship on a U.S. family. A photo of her 6 year-old donor is posted on the blog.

Tuesday, December 13, 2005

Lung Transplant Xmas party a big success

The lung transplant Christmas party December 7th was a huge success, with an excellent turnout. I took quite a few pictures and Joe Gomes contributed to the photo gallery also. You can view them at this link: Christmas Party Photos


Check presentation - click for larger photo

A highlight of the day was fundraising donations made to Dr. Shaf Keshavjee, Director, Lung Transplant Program, Toronto General Hospital. In this photo, lung transplant recipient Gerald Sutton, along with his wife Kathy Marceline and daughter Karleigh, are presenting a check for $6500 raised at their October 15h Rock N' Roll event for lung transplant research. Please see the separate post in Gerald & Kath's thank you letter below.

Here Dr. Shaf Keshavjee is receiving a donation of $5,000 from the Nirvana Cultural Society. These donations are fine examples of our transplant community "giving back". Fundraising activities are limited only by one's imagination and the Toronto General & Western Hospital Foundation will be very pleased to offer advice and guidance.
For information email:
Linda Ruickbie

Claudia Vico, Linda Ruickbie and Mary-Claire JankowskiThe Toronto General & Western Hospital Foundation was well represented and in this photo we have Claudia Vico, Linda Ruickbie and Mary-Claire Jankowski. The Hospital Foundation has been very supportive of our fundraising initiatives by providing their guidance, help and expertise.

Thanks for a Night of Rock 'N Roll

Transplant recipients are generally very grateful for their "second chance" and like to show their thanks by giving back. One of the ways to do this is raising money for transplant research and lung transplant recipient Gerald Sutton along with his wife Kathy Marcelline came up with a very creative initiative. Their letter below tells the story.

Dear Friends,

Saturday October 15, 2005, more than 200 attended A Night of Rock 'N' Roll at The Original Motorcycle Café & Lounge in support of Toronto General Hospital, Lung Transplant Research. Ticket sales, the raffle and donations raised over $6500!

Wednesday December 7, 2005, we had the enormous pleasure of presenting the cheque to the surgeon who performed Gerald's transplant in 2002, Dr. Shaf Keshavjee, Director, Lung Transplant Program, Toronto General Hospital. See photo

We are incredibly grateful to:

SPONSORS
Clevelands House, Muskoka
Jestlyn Products, Inc.
The Original Motorcycle Café & Lounge
Steve's Music Store
Tennis Canada
Toronto Argonauts

THE BANDS
The Well
Tyler Ellis Band
Last Call
Eugene Ripper
The Woodleys

Volunteers, and YOU for your support!

And we are forever grateful to Dr. Keshavjee, the entire Organ Transplant Team at Toronto General Hospital, and, the Donor Family.

Sincerely,
Gerald, Kathy and family

Friday, December 09, 2005

Snow Day in Waterloo

Snow Day Here's the view from my kitchen window this morning. I turned on the radio to hear nothing but news about traffic jams and accidents so I decided right then and there to make this a "Snow Day for Merv" and stay home to tackle the dreaded job of unpacking and settling into my new place in Waterloo, Ontario. Now that I've finally moved in I can resume regular posts to this blog. Stay tuned.

For my new address & phone number please email me:


The Laurence's Home, Mississauga, Ontario
After reading the above, lung transplant recipient Peter Laurence sent in this photo of what he and his wife Lynne woke up to this morning in the Toronto suburb of Mississauga. Looks like a lot of us had a snow day today.

Monday, December 05, 2005

Annual Lung Transplant Xmas Party Wednesday, Dec 7th, 2005 - 10am to 2pm

Xmas Party 2004 Courtesy Joe GomesDirections: New Clinical Services Building (NCSB), Toronto General Hospital. Take elevators from University Avenue lobby to the 11th floor west, Room 1135.

UPDATE: Dr. Shaf Keshavjee will attend between 11:30 am and 12 noon and will be accepting a donation of funds raised for lung transplant research by lung transplant recipient Gerald Sutton and his wife Kathy Marcelline. Gerald and Kathy held a "Rock N'Roll" musical fundraising event October 15th in conjunction with Toronto General & Western Hospital Foundation.
Mark your calendars and plan to attend this wonderful social opportunity for our lung transplant community.

Lung transplant recipient Linda Lycett, with help from Maureen O'Dell and others, has generously donated her time and committment over the years to make this an event to look forward to. I'll be there and look forward to meeting and greeting everyone. Merv.

Here's the announcement from Linda:
"Once again, we are holding our Annual Lung Transplant Christmas Party for pre and post lung transplant patients, their supports, doctors, nurses, and all other medical staff. As usual, this is a potluck affair, and we would appreciate any type of finger food. You can bring sandwiches, cheese plates, veggie plates, deserts of any type, etc. I will have the hospital cater the coffee and tea. We always have a wonderful array of food as anyone who has gone before can attest to. We are holding it in the regular meeting room on the 11th floor of the McEwen Wing, on Wednesday, December 7th, 2005. The time will be from 10:00 am to 2:00 pm. We have to leave by 2:00 because the room is booked for that time so please come early and enjoy meeting with old friends, and hospital staff. It is a great time to connect with post transplant patients, and get to know those pre-transplants on the list at the moment. Cepacia negative patients are invited between 10:00 am and noon, and Cepacia positive patients from noon to 2:00 pm. I look forward to seeing you all there. Linda"

For more information e-mail: Linda Lycett or Maureen O'dell

Tuesday, November 29, 2005

Another brief intermission

I'm making the final move from Ayr to Waterloo this week and will be unable to post new articles for the next few days. Meanwhile, please browse my previous posts and extensive links. Thanks, Merv.

Wednesday, November 23, 2005

Union Members are Big on Organ & Tissue Donation

After attending the Ontario Federation of Labor convention at the Sheraton Hotel in Toronto this week, I came away absolutely impressed with the interest union members showed in organ and tissue donation. The Trillium Gift of Life Network booth was swamped with a good percentage of the one-thousand union delegates seeking information and donor cards. Many commented on how important they felt this was.

Phil Goodwin and Doug Wiley
Above is a photo of Phil Goodwin and Doug Wiley, my partners in promoting organ and tissue donation. Working with Phil and Doug was an uplifting experience. At age 29, Phil was left blind as the result of a motorcycle accident. Then, from complications of diabetes, he became very ill and went on the waiting list for a kidney/pancreas transplant, which he received in June of 2002. Recently, he fell, broke his hip and now has a hip replacement. And for all this, I have never met anyone with a more positive attitude and outlook on life.

Being a union member from Oshawa, Ontario, Phil arranged to have the Trillium Gift of Life Network booth at the convention and he worked the booth enthusiastically promoting organ and tissue donation. What an inspiration!

Equally, Phil's friend, guide and companion, Doug Wiley, was an inspiration by his dedication to Phil and desire to help his fellow man through promoting organ and tissue donation. it was my great pleasure to get to know and work with them both.

Tuesday, November 22, 2005

New intraocular lens reduces need for reading glasses

Traditionally cataracts have been removed and replaced by an intraocular lens implant that resulted in most patients needing reading glasses, even if they never required them prior to the procedure. As I reported earlier, many transplant recipients such as myself develop cataracts caused by their medications. I had my lens implants a couple of years ago and promptly had to get eye glasses for reading. Now, there is a new lens available that reduces or eliminates completely the need for reading glasses. The Mayo Clinic's news release provides an excellent overview of this exciting new lens.

JACKSONVILLE, Fla., Nov. 21, 2005
Ophthalmologists at Mayo Clinic are implanting a new intraocular lens (IOL) during cataract surgery that promises to reduce or eliminate the need for reading glasses. Standard IOL implants are monofocal. They correct for distance vision but not close-up vision. For activities like reading or working on a computer, patients who've had cataracts removed usually require reading glasses. The Food and Drug Administration (FDA) approved the ReSTOR lens in March. In the clinical trial to gain FDA approval, 80 percent of patients who had the lens implanted reported they no longer needed glasses for any activity.

"To me the greatest thing this lens offers is freedom," says Mayo Clinic ophthalmologist Dr. Akbar Hasan. "You can focus at different depths. You can go into a grocery store, look down the lane and then pick up a can of soup and read the ingredients. You don't have to reach for your glasses." Dr. Hasan is quick to point out that the new lens doesn't offer better quality vision than standard implants, but rather, less dependence on reading glasses.

Friday, November 18, 2005

It's never too late to quit smoking

Boston - November 16, 2005
There is never a bad time to stop smoking, but there is no time like the present to quit. November is Lung Cancer Awareness month, and with the holiday season approaching, quitting smoking is the best gift smokers can give themselves, their families and their friends.

According to the American Cancer Society, smoking is the most preventable cause of death in the United States, accounting for 440,000 deaths, or nearly one of every five deaths, each year. It also causes more than 80 percent of all lung cancers and increases the risk for many other types of cancer, including oral, throat pancreatic, uterine, bladder, and kidney cancers.

"Our most effective tool for treating lung cancer is to prevent it from ever happening," explains Bruce E. Johnson, MD, director of the Lowe Center for Thoracic Oncology at Dana-Farber Cancer Institute in Boston.

Johnson emphasizes that it is never too late to quit. People who stop and remain a nonsmoker for at least 10 to 20 years can cut their risk of developing lung cancer in half. Even those who quit smoking in their 60s, 70s, and 80s benefit by reducing their risk of dying from a heart attack or from developing lung or head and neck cancer, says Johnson.

For the full news release and Dr. Johnson's tips to help people quit smoking goto: Kick The Habit

Medline also offers tips with extensive links to sites devoted to help people quit smoking:

Thursday, November 17, 2005

Scientists use stem cells to grow cartilage

This news release from the Faculty of Medicine at Imperial College in England may offer new hope for procedures such as hip replacements in the future.

London - November 16, 2005
Scientists from Imperial College have successfully converted human embryonic stem cells into cartilage cells, giving hope that replacement cartilage could one day be grown for transplantation.

Cartilage is the dense connective tissue usually found between bones to allow the smooth movement of joints.

Research to be published in Tissue Engineering shows how the Imperial team directed embryonic stem cells to become cartilage cells. This could allow doctors to grow cartilage for tranplantation for a number of injuries and medical problems, including sports injuries, new cartilage for people having hip replacements, and even for cosmetic surgery.

Dr Archana Vats, from Imperial College and first author of the paper, said, "The ability to grow cartilage using stem cells could have enormous implications for a number of medical problems. With the UK's increasing ageing population there will be an inevitable increase in problems created by people living longer. Although doctors have been able to carry out joint replacements for a number of years, it has not been possible to replace the worn out cartilage. By replacing the cartilage it may be possible to avoid the need for a joint replacement for some time."

Tuesday, November 15, 2005

Heart Transplant Craft Sale - Nov 24, 2005


(This announcement was received from the Heartlinks Group)

HeartLinks, the heart transplant patients of the Toronto General Hospital are holding their annual craft sale fundraiser on Thursday November 24, 2005 at Toronto General Hospital, Robert R. McEwen Atrium entrance (585 University Ave) 10:00AM – 3:00PM. Mark your calendars! It's time to start getting your sale goods ready. Please spread the word.

Crafts may be dropped off the day of the sale. For more information and instructions where to drop off or send items before the sale date send an email to Heartlinks or call Stella at (416) 351-0793.

Heart Transplant Christmas Party Thursday, December 8, 2005 1pm to 4pm

(This announcment was received from the Heartlinks Group.)

Location: 11th Floor, Room 1135, Fujisawa Conference Room
Directions: Take elevators from University Avenue lobby to the 11th floor west, Room 1135 NCSB (NCSB - New Clinical Services Building, Toronto General Hospital)

HeartLinks, the heart transplant patients of the Toronto General Hospital are once again holding our Annual Christmas Party for pre and post heart transplant patients, their supports, doctors, nurses, and all other medical staff. As usual, this is a potluck affair, and we would appreciate any type of finger food. You can bring sandwiches, cheese plates, veggie plates, deserts of any type, etc. We will have coffee and tea. We always have a wonderful array of food as anyone who has gone before can attest to. We are holding it in the regular meeting room on the 11th floor of the McEwen Wing, on Thursday, December 8th, 2005. 1:00pm to 4:00pm. Please come early and enjoy meeting with old friends, and hospital staff. It is a great time to connect with post transplant patients, and get to know those pre-transplants on the list at the moment. We look forward to seeing you all there. Info: Heartlinks

Monday, November 14, 2005

New mechanical heart implanted at McGill University Health Centre

This new procedure, a Canadian first, will reduce the need for some heart transplants.

Montreal - October 31, 2005
Surgeons at the MUHC (McGill University Health Centre) have successfully implanted a new kind of mechanical heart in two patients, the first time this new technology has been used in Canada. This new mechanical heart will allow some patients' damaged hearts to recover their normal function, and will reduce the need for heart transplants. This "bridge-to-recovery" technology promises to revolutionize the management of heart failure. The MUHC is one of only a handful of Canadian hospitals capable of installing the new mechanical hearts.

Until now, mechanical hearts were considered temporary devices designed to assist a diseased or damaged heart, in order to bridge the gap to a heart transplant. Patients who developed shock after suffering a heart attack were considered for mechanical hearts as a bridge to transplant, for example. "This new technology allows the patient's own heart to recover its normal function, thereby avoiding a heart transplant altogether," says Dr. Renzo Cecere, Director of the Mechanical Assist Program and Surgical Director of the Heart Failure and Heart Transplant Program of the MUHC.

Tuesday, November 08, 2005

Ontario East Support Group Meeting November 17th 12 Noon

Directions: (Junction 543 on the 401). College Hill Church, North Park Street, in Belleville

Susan Mintz, Director of Programming for The Kidney Foundation will be present and will be discussing opportunities for working together on public education about Trillium Gift of Life Network's Organ and Tissue Donation program, as well as support issues for those who are pre-transplant. We would welcome any visitors and guests who might wish to attend and perhaps gain new insight into this whole area of public medicine and healthcare.
For more information: e-mail Ian Robb

Monday, November 07, 2005

Ontario West Support Group Meeting Tuesday Nov. 8th 7:30 p.m.

Denise Secours asked me to remind pre and post transplant patients and their supports living in the Waterloo-Wellington (or beyond) area about the next meeting this Tuesday, November 8th. If you can possibly make it please plan to attend. These support meetings are a wonderful opportunity to share experiences and socialize with others who are waiting for or have received a transplant. Please pass this on to your contacts if you can. Thanks, Merv.

Ontario West Area Support Group Meetings start at 7:30 P.M. the first Tuesday of every month and are held at the Lions Arena, (corner of Rittenhouse & Block Line Rd.) in Kitchener, Ontario.

For more info please call Denise Secours at 519 578-0288.

Friday, November 04, 2005

A Plea for Help from a Lung Transplant Family

Brad & Rebecca Skiffington

What follows is a message I received from Dr. Susan Abbey followed by a heartfelt plea for help from Brad and Rebecca Skiffington. Dr. Abbey asked me if I had any ideas about getting assistance for them and the best thing I could think of was spreading the message throughout our transplant community by posting it on my network and asking you to forward it to your contacts also. Anything you can do to help will be greatly appreciated. Thanks, Merv.

"Dear Merv. There is a lovely young post-transplant couple who are currently living in a basement apartment. (He is on ODSP and she is in school) who need to move "above ground" (several episodes of aspergillus and now chronic rejection) but are constrained by finances. They have been advocating everywhere without success and I've been trying to help them without much success either!

Do you have any bright ideas? Do you know of anyone in the transplant community who can pull any levers re housing; is a developer or who works for a developer who might have an empty apartment they would rent at less than market rent? Do you know of any media folks who would do a news storey on them? Or church communities that are into helping individuals? Are there any E-mail lists I could encourage them to post to that might yield someone to help?"

Thanks, Susan."

Susan Abbey, MD, FRCPC
Head, Psychosocial Services, Multi-Organ Transplant Program, UHN
8EN-212, 200 Elizabeth St
Toronto, Ontario, Canada M5G 2C4


“Hi Merv,
Dr. Abbey referred me to you. My name is Rebecca Skiffington and I'm the wife of lung transplant patient Brad Skiffington who was transplanted January 26, 2002. He received a double lung transplant due to Cystic Fibrosis (CF). He was diagnosed with when he was 2 weeks old and received his transplant when he was 27.

Here is a little information on Brad and myself.

We have been trying to move out of our basement apartment in Ajax for a number of months. As Dr. Abbey mentioned Brad's has had a few bouts of aspergillus since moving into this apartment and now is dealing with chronic rejection. His lung function has gone from 79% only 3 months ago to 55% currently. Right now the Transplant Team is working on trying to stabilize his lung function and keep the rejection from progressing any further, mainly by switching his rejection medication.

We moved here from Newfoundland in July, 2001 so that Bradley could be placed on the transplant list. He was listed on September 12, 2001.

When we first moved to Ontario we lived in St. Catharines and stayed there until August of 2004. Since at that time Bradley's health seemed to stabilize I decided to return to school and finish my education. I was accepted into the Paramedic Program at Centennial College in Scarborough and we moved to Ajax. Unfortunately, the cost of living in the GTA is far greater than the cost of living on the Niagara Region, so we were forced to move into a basement apartment. Since August of last year Bradley has had different complications with his lungs that can be largely contributed to living in a basement apartment. Unfortunately, this was a realization that never came into light until we started to see a drastic decline in Bradley's PFT results and the rest you already know.

One of the big issues we are facing now is our current living arrangements. We know that living in a basement apartment is not helping Brad, or his lungs any and we need to move. I have been in contact with the Durham Regional Housing Corp. and we have been put on a waiting list. The waiting list is currently housing individuals who have been wait listed since October of 1997. We were told that we would be looking at a wait of 3-7 years. I have explained the situation, many times, to them but they do not take into consideration medical/health needs. They do offer emergency housing, but only to victims of abuse.

I have also been in touch with our MP, our MPP, Social Services, Durham Newspaper, The Toronto Star, Durham Community Legal Services and written a letter to Premier Dalton McGuinty and P/C John Tory.

To date everyone, who has responded, has said they are unable to help. I have yet to hear back from the offices of either McGuinty or Tory. I have accessed all the resources I know to access. I know someone out there has to be able to help, but have been unable to find the right person. There is always an exception to every rule and I strongly believe that a person's health is one of those exceptions.

Being a transplant patient yourself, you know of the importance in having clean, healthy and adequate housing. Brad, needs to be somewhere that is completely smoke free, warm in the winter, cool in the summer and free of dampness and its associated problems. It also needs to be affordable. Since I am a student and Bradley is only receiving ODSP we have a very limited income. The shelter allowance that Bradley receives is only $672/mth. Anything we pay for rent above this comes from our money allotted for other living expenses i.e. food, bills etc.

This is what we have been trying to deal with over the last few months. We are not looking for hand outs or pity, we just need someone to give us a helping hand. Dr. Abbey thought of you & asked if we would mind her contacting you. Both Bradley & I would greatly appreciate any assistance that you may be able to offer. Even if you have some ideas of people that I can contact that I haven't thought of yet - any ideas & suggestions would be wonderful. We are pretty much willing to try anything at this point.

I have attached a picture of us taken a few months ago which you can use freely, either within your network, or where ever you think it may help. If you need any further information or have any questions, please don't hesitate to contact us either by e-mail or phone (905-686-6811). Dr. Abbey also said that she would be willing to help in anyway possible.

Again we would be ever so greatful of any help, ideas or sugestions that you may have. Thank-you so much for your time. Take care, and stay healthy!
Rebecca Skiffington"
Phone 905-686-6811
E-mail Rebecca

Thursday, November 03, 2005

Raising Kidney Donation Awareness in Britain

This article in the British Medical Journal gives us a good insight into the state of living kidney donation in Britain.

News roundup
BMJ 2005;331:1042 (5 November), doi:10.1136/bmj.331.7524.1042-b
London, Kathryn Godfrey

A photographic exhibition aimed at raising awareness of kidney donation from live donors is being launched at a meeting of the British Transplant Society next week.

The photographs of donors and recipients, taken before and after donation, are accompanied by quotations from the subjects. The aim of the project is to address concerns and misconceptions that patients and families may have about living donation and to increase the uptake of this option.

Last year Susan donated a kidney to her long term partner, Richard, as life with a partner on dialysis and two children had become too difficult.

Speaking a year after the transplantation Susan said: "It’s like it never happened to my body. I feel better now than I did before. I did it not just for Richard but for me and our children, so that we could have a family life."

The interviews with the subjects of the photos show that some did not realise that you have two kidneys, that you can survive with only one kidney, and that removal of a kidney would be unlikely to affect your long term health.

Chris Rudge, medical director of UK Transplant, said that he hopes that the exhibition, which will be offered to renal centres across the UK, will raise awareness and offer a starting point for a discussion between relatives and doctors.

He said: "The problem is often how to get the process started. What can happen is that neither party says anything. The doctors are waiting for the relatives to come forward and offer. And the relatives don’t say anything as they think that if it is a good idea then the doctor will suggest it. So by default nothing happens."

Living kidney donation has principally been between relatives and close friends, but when the Human Tissue Act 2004 comes into force in April next year codes of practice will allow people to donate to someone unknown to them. Mr Rudge said that a number of willing volunteers are waiting for this change.

Rates of living donation vary across the world. In the United Kingdom 28% of people receiving a kidney transplant get them from living donors, whereas in the United States, where doctors are more blunt with patients about the need for them to find a friend or relative to donate a kidney, the rate is 50%.

Mr Rudge said ideally there should be no need for living donation in the UK because it does put the donor at some risk. But in the UK at the moment 5500 patients are on the waiting list for a kidney transplant.

He said that apart from reluctance from relatives, service shortfalls have contributed to the low number of kidneys from cadavers. "A better structure and more funding for the surgical process of removing the organs is needed. We need more funding for surgical teams and more transplant coordinators to increase the number of organs available," he said.

Tuesday, November 01, 2005

Lung Scarring Diseases Linked to Genes and Smoking

Here's more evidence that smoking may cause pulmonary fibrosis. Read on!

NIH News
National Institutes of Health

FOR IMMEDIATE RELEASE
Tuesday, November 1, 2005
New research shows that idiopathic interstitial pneumonia (IIP), a group of potentially fatal disorders that affects the lungs, may be caused by an interaction between a specific genetic background and cigarette smoking. In a study of 111 families that had at least two relatives with IIP, people who smoked cigarettes were three times more likely than non-smokers to develop the disease. The research was supported by the National Heart, Lung, and Blood Institute (NHLBI) and the National Institute of Environmental Health Sciences (NIEHS), both institutes within the National Institutes of Health.

IIPs are often accompanied by scarring and inflammation of the lung known as pulmonary fibrosis. Pulmonary fibrosis makes the delivery of oxygen to the body’s tissues difficult and is often fatal. About one-half of patients die within the first five years of being diagnosed with idiopathic pulmonary fibrosis. The study appearing in the November 1 issue of the American Journal of Respiratory and Critical Care provides new insight into what might cause IIP and new directions for preventing these diseases.

"This study illustrates the important role that a specific environmental exposure, in this case cigarette smoking, can play in the development of this type of lung disease among people who have a specific gene,” said David A. Schwartz, M.D., NIEHS Director and a lead researcher on the study. “It once again underscores why people should not smoke.”

“Pulmonary fibrosis currently affects approximately 100,000 people in the United States, with an estimated 30,000 people being diagnosed each year,” added Elizabeth G. Nabel, MD, NHLBI Director. “This study enhances our understanding of one form of pulmonary fibrosis, which could help lead us to strategies for genetic testing, prevention, and treatment of this devastating and complex disease.”

Saturday, October 29, 2005

Exercise a good prescription for aging

Exercise is good for everyone but it is especially important for transplant recipients as part of their overall program to live as long and as healthy as they possibly can. This announcement from Baylor College of Medicine helps us to focus on our prorities for living.

HOUSTON -- (October 27, 2005) --
Exercise can't stop the aging process, but experts at Baylor College of Medicine in Houston say that for the elderly, whether it's weight training, walking, swimming or biking, 30 minutes of exercise three to five times a week is a good prescription for aging.

"It's never too late to start exercising," said Dr. Robert Roush, an associate professor of medicine-geriatrics at BCM. "Being physically active and exercising regularly can help prevent or delay some diseases and disabilities as people age."

Loss of muscle mass typically begins in the 30s or 40s. As muscles shrink, fat cells take their place and that leads to a slowdown in metabolism and weight gain even if caloric intake and expenditure remains the same.

"Any type of movement can be considered exercise, but resistance weight training has been shown to be the best way to reduce the loss of lean muscle," Roush said. "Surprisingly, resistance training also increases cardiovascular fitness and it makes your bones stronger, too."

Strength training is especially important for women. Since women are generally smaller in stature and weigh less than men, they're at a greater risk for developing osteoporosis that can lead to fractures and immobility, making a weak person even weaker.

Exercise can improve your overall health, reduce stress, help weight control, provide arthritis relief and help you get a better night's rest.

Friday, October 28, 2005

Antibacterial soaps no better at cleaning your hands

Should we continue to use antibacterial soaps and sanitizing gels? Read the following from the University of Michigan and draw you own conclusions.

October 24, 2005
ANN ARBOR, Mich.—Germophobic Americans have antibacterial soaps in their bathrooms and kitchens, they carry hand sanitizing gels and wipes when they're away from home, and their grocery stores have even gotten into the act, offering wipes for the cart handles.

But Allison Aiello, assistant professor of epidemiology at the University of Michigan School of Public Health, is worried we might inadvertently develop superbugs, bacteria resistant to the arsenal of cleansers and soaps.

The concern, she explained, is that the ingredient triclosan, which most consumer antibacterial liquid soaps contain, changes the ecological balance on your hands by killing off some—but not all—of the bacteria there. In addition, laboratory tests have shown that use of antibacterials can lead to cross-resistance with oral antibiotics that are used to treat some infections.

Aiello appeared before the Food and Drug Administration's Non-prescription Drugs Advisory Committee Thursday to discuss the health benefits and risks of antibacterial soaps.

She told the committee that any kind of soap, with or without antibacterial ingredients, can help remove bugs from the hands. Soap helps to loosen dirt, so that water can rinse it down the drain. She feels it is unnecessary to use antibacterial soaps since research shows that those products are not any more effective than plain soap against common infections found in the household setting.

Thursday, October 27, 2005

Sport Fest Promotes Organ Donation Awareness

I met liver transplant recipient Tom Awad recently at a Trillium Gift of Life Network volunteer event and am happy to publish the following from his brother Roger. Check out their web site. There's no end to the innovative ways we can come up with to promote organ and tissue donation. Merv.

"My brother and I formed an organization called Sport Fest Windsor to promote organ donor awareness thru sporting, cultural and entertainment events.

Our website Sport Fest shows all the events and initiatives we have undertaken this year.

We have been very fortunate to have many businesses help financially thru generous donations. People like Tim Hortons, Local 444 and Valiant Machine Tool were major sponsors.

Our major funding initiative is an 18 MONTH HEALTHY LIFESTYLE CALENDAR where Jane Awad 2004 and 2005 IFBB North American Pro Figure Champion demonstrates workout techniques, lists foods to prevent breast cancer and organ donation facts are shown each month.

Selling this calendar has been challenging to say the least and your help would be appreciated.

We are hoping you would post this on your web site and encourage your readers to help us in any way by purchasing some calendars. Putting a link to our website would help as well. Sport Fest

Please add me to your mailing list as Tom advised me that he receives valuable messages from you.

Thanks and I look forward to hearing from you. Roger Awad."

Wednesday, October 26, 2005

$6500 Raised for Lung Transplant Research


Gerald Sutton and his wife Kathy Marcelline would like to thank all of their supporters for helping to make the Rock "N" Roll October 15th fundraiser a huge success. They raised $6500 for Lung Transplant Research at Toronto General Hospital and also increased organ donation awareness.

Congratulations to Gerald, Kathy and their team for this very successful fundraising initiative!

Monday, October 24, 2005

Lung Transplant Craft & Bake Sale a Big Success!

Linda Lycett reports the final tally is in from the Annual Lung Transplant Craft and Bake Sale held October 20th at Toronto General Hospital, and is happy to announce that they made $3063 with an additional $125 in committed donations still to come.

Linda also notes that this money will once again be donated to purchase equipment for the Treadmill Room and transplant floor.

Linda sends a huge thank you to everyone who contributed either items or money and to those who helped on the day of the sale. She also sends special thanks to Maureen O'Dell, Social Worker, Multi-Organ Transplant Program, for her help and support in making the event a success.

Congratulations to Linda and her team for a job well done!

Saturday, October 22, 2005

New antifreeze protein may allow longer storage of transplant organs

October 21, 2005 (Kingston, ON)
A new antifreeze protein discovered in tiny snow fleas by Queen’s University researchers may lengthen the shelf life of human organs for transplantation.

Drs. Laurie Graham and Peter Davies, from the Department of Biochemistry, found that the potent protein produced by the fleas to protect themselves against freezing is capable of inhibiting ice growth by about six Celsius degrees. This would allow organs to be stored at lower temperatures, expanding the time allowed between removal and transplant.

The results of the Queen’s study, funded by the Canadian Institutes for Health Research (CIHR), are published today in the international journal Science.

For full details goto: Press Release

Friday, October 21, 2005

"A Change of Heart" Oct 26, 8:00 p.m.

"A Change of Heart" takes us behind-the-scenes of a world renowned heart transplant program.

This coming Wednesday, October 26, 2005 at 8:00 p.m the renowned heart transplant program at Toronto General Hospital (TGH), University Health Network will be featured on the season premier of CBC's The Nature of Things. Hosted by David Suzuki, "A Change of Heart" follows the extraordinary team led by Dr. Heather Ross, Medical Director of the Cardiac Transplant Program at TGH, through weeks of intense work as they try and achieve the best outcomes for four remarkable patients in a race against time.

Thursday, October 20, 2005

Grant to build technology center will carry U.S. transplant system into future

News from UNOS
Release Date: 10/20/2005


Richmond, Va. -- A one-million-dollar grant from The Richard and Helen DeVos Foundation will help enhance the information technology infrastructure that is used to manage the nation's transplant system. Upgraded information technology will enable UNOS to optimize waitlist management, organ matching and distribution, ultimately benefiting the more than 90,000 people waiting for an organ transplant in the United States.

Through a contract with the federal government, the United Network for Organ Sharing operates the nation's Organ Procurement and Transplantation Network, serving as the central hub for organ sharing in the United States, and collects and manages clinical data on transplant candidates, organ donors, and all transplant recipients in the United States.

Upgrading the equipment and software necessary to maintain the nation's waiting list and match potential candidates with donors that become available, which are not covered under the contract, will be funded through the grant as will system repairs, placements, upgrades and enhancements.

Full press release: News Release

Tuesday, October 18, 2005

Quitting Smoking Could Save Your Teeth

"Quitting smoking could save your teeth," this study shows.

Smokers who give up are much less likely to lose their teeth prematurely than those who don't kick the habit, pioneering research has shown.

Dental researchers at the University of Newcastle upon Tyne, UK, observed a group of cigarette smokers with chronic gum disease over one year and found some symptoms were more likely to improve in the people who quit during the study period.

Chronic gum disease, which is characterised by inflamed gums that increasingly recede from the teeth, can lead to tooth loss in its advanced stages if preventive action is not taken.

The researcher's findings, revealed in the academic publication, the Journal of Clinical Periodontology, therefore provide yet another reason for the 12 million UK adult smokers (just over one-quarter of the adult population) and smokers worldwide to quit their habit for the good of their health."

Read the full press release: Press Release:

Sunday, October 16, 2005

Annual Lung Transplant Craft & Bake Sale This Thursday, October 20th 8:30am-5:00pm

Craft Sale

This was originally planned for the Elizabeth Street entrance lobby but will now be held in the more spacious McEwen Atrium.

The annual craft and bake sale fundraiser for the lung transplant program is Thursday, October 20, 2005 at Toronto General Hospital, Robert R. McEwen Atrium entrance (585 University Ave) 8:30AM – 5:00PM. Mark your calendars!

Baked goods and crafts may be dropped off the day of the sale. For more information and instructions where to drop off or send items before the sale date e-mail Linda Lycett or Maureen O'Dell.
You can also call Linda at (416) 245 9306.

Linda is a lung transplant recipient who has continued to give back in many ways over the years and she says that if, in addition to friends and support people, we even get one donation from each transplant patient we will be doing very well this year.

Linda also notes that it seems to be the same patients, friends and support people who contribute every year and she would like to see more people involved this year to help raise money to provide equipment for the transplant floor and Treadmill Room. This will eventually benefit us all.

Eating Fish Once A Week Associated With Slower Cognitive Decline



Here's another article on the importance of eating fish regularly.

CHICAGO – October 10, 2005 - Consuming fish at least once a week was associated with a 10 percent per year slower rate of cognitive decline in elderly people, according to a new study posted online today from Archives of Neurology, one of the JAMA/Archives journals. The study will be published in the December print edition of the journal.

Martha Clare Morris, ScD, of Rush University Medical Center, and colleagues analyzed six years of data from an ongoing study of Chicago residents, 65 years and older, first interviewed between 1993 and 1997 and every three years in two follow-up interviews.

Morris found dietary intake of fish was inversely associated with cognitive decline over six years in this older, biracial community study. "The rate of decline was reduced by 10 percent to 13 percent per year among persons who consumed one or more fish meals per week compared with those with less than weekly consumption. The rate reduction is the equivalent of being three to four years younger in age," she said.

Full news release: Rush News

Saturday, October 15, 2005

Rock 'N' Roll Fundraiser, Saturday, October 15th

Gerald Sutton called to say there were still plenty of tickets available at the door. Why not go out for a night on the town and at the same time help transplant research?
Rock 'N' Roll Oct 15/05
Gerald Sutton (lung transplant recipient) and his wife Kathy Marcelline have organized this fund raising event to support lung transplant research at Toronto General Hospital. This is another fine example of the creative initiatives we can take to help raise money for our transplant "team". For more info send an email to Gerald at: Rock 'N' Roll

Tuesday, October 11, 2005

Help Hurricane Flood Victims

Updated as of today.October 11, 2005 - The American Red Cross is responding to multiple natural disasters and is relying on people to help aid hurricane survivors by supporting the Disaster Relief Fund.

Goto Donate Now

There's no need for me to describe the horrendous events that have unfolded in the U.S. gulf area. First Katrina and then Rita. The papers, TV and other media are providing non-stop coverage of the flooding, death and destruction, as they should. My heart goes out to those suffering such great loss of loved ones, homes, jobs and the necessities of life and I am urging my readers to donate to help these poor victims of the worst storms in U.S. history. My charity of choice is the American Red Cross.

To help the victims of these catastrophic storms the Red Cross has organized the largest mobilization of it's kind in history, and has mobilized thousands of staff and volunteer relief workers. As of October 11, 2005 this is what the red cross has been able to accomplish:

Situation Updates:
This disaster relief operation is constantly changing. All numbers are approximate. Please note the date of last update when using facts or numbers in news stories.

Sheltering Operations
  • Since Hurricane Katrina made landfall, the Red Cross has provided more than 3.3 million overnight stays in nearly 1,100 shelters across 27 states and the District of Columbia. To date, the Red Cross and the Hurricane Katrina and Rita special accommodations program, which will be funded by FEMA and is being administered by the Red Cross on behalf of the federal government, has provided more than 5.8 million overnight hotel stays for hurricane survivors in nearly 9,700 hotels/motels in 5o0 states and the District of Columbia.

Relief Workers
  • Nearly 187,000 Red Cross workers from all 50 states, Puerto Rico and the Virgin Islands have responded to Katrina. During this effort, the Red Cross has trained tens of thousands of people in specialized disaster relief skills.

Feeding Operations
  • The Red Cross, in coordination with the Southern Baptist Convention, has served more than 24.4 million hot meals and more than 15.3 million snacks to hurricane survivors to date.

Financial Assistance
  • The American Red Cross is expanding the variety of its efforts to provide financial assistance to more than 1.1 million families (more than 3.4 million hurricane survivors) to date. Assistance is provided in a variety of ways, including client assistance cards, vouchers, checks and cash.

When disaster strikes anywhere around the world, the Red Cross is always among the first and biggest aid organizations to set up relief efforts. The Red Cross always finds a way to bring support staff, food aid, shelter, and medical care to areas of great need even in the most dangerous and difficult conditions imaginable.

American Red Cross disaster assistance is free, made possible by your voluntary donations of time and money.

Funds Received
The Red Cross has received approximately $1.15 billion in gifts and pledges to date for the hurricane relief.

The Red Cross has a four-star rating from Charity Navigator for its effective use of donations. At least 91 cents of every dollar donated to the American Red Cross goes directly to assist disaster victims.

Estimated Cost
The American Red Cross estimates that relief efforts will exceed $2 billion, meeting the needs of nearly one million families in three key areas:

Food and Shelter — $110 million
Transient Hotel Accommodations/Lodging Expenses - $134 million
Emergency Financial Assistance to Disaster Survivors — $1.06 billion

As of October 11, 2005, approximately $1.51 billion has been spent or committed for hurricane relief efforts.

Please help by donating your time or money for Katrina victims.
Goto Donate Now

Additional Information & Resources can be found under Hurricane Season 2005. To learn more about the coordination of efforts among the many organizations and agencies helping hurricane survivors and for additional resources, visit USA Freedom Corps

Wednesday, October 05, 2005

Living Kidney "Paired Donation" a Success - Hopkins Study

HOPKINS STUDY SHOWS LIVING KIDNEY "PAIRED DONATION" AN EFFECTIVE STRATEGY IN OVERCOMING DONOR-RECIPIENT INCOMPATIBLITIES
--Results suggest technique can offer transplants to many more patients--

OCT. 4, 2005 - A Johns Hopkins study has affirmed the success of living kidney "paired donation" (KPD) as a means of efficiently finding more kidney donors who are a match for patients in need.

In the study, published in the Oct. 5 issue of The Journal of the American Medical Association, Hopkins surgeons report successfully performing KPD transplants on 21 out of 22 kidney patients whose willing donors were incompatible by matching them up with other incompatible pairs. Robert Montgomery, M.D., Ph.D., the director of the Comprehensive Transplant Center at Hopkins and lead researcher in the study, said the results could pave the way to a national matching registry that would enable hundreds and perhaps thousands of patients who cannot receive a kidney from a loved one to be transplanted by exchanging donors with a stranger.

"This is especially important," Montgomery said, "because it offers hope to patients who have compatibility issues that make it difficult for them to find suitable donors."

KPD is a process in which living incompatible donor-recipient pairs are matched with other living incompatible donor-recipient pairs in order to find successful matches. For example, an incompatible donor-recipient pair with blood types A and B, respectively, might be successfully matched with a donor-recipient pair who has the opposite incompatibility --- blood types B and A. The kidneys would be exchanged between the two pairs so that the A recipient then would receive an A kidney and the B recipient a B kidney.

Montgomery, an associate professor at Hopkins, said KPD is also effective with patients who have tissue incompatibilities. Tissue incompatibility can occur when a patient --- who has either been pregnant or had a blood transfusion or a previous transplant --- mounts an immune response against the foreign tissue. The condition, called HLA antigen sensitization, can cause a kidney to be rejected and make patients incompatible with donors who share their tissue type. As a result, donor matches are more difficult to find.

Full press release: Paired Donation

Tuesday, October 04, 2005

Pfizer Provides Easier, Broader Access to Clinical Trial Information

Now On Web: Results From 314 Clinical Studies On 35 Medicines, Enrollment Information For 265 On-Going Studies

NEW YORK, October 3 -- Pfizer Inc said today it has posted information on more than 500 company-sponsored clinical trials on two easy-to-access web sites. Results from 314 studies involving 35 Pfizer medicines are posted on the Clinical Study Results Database at Study Results

The Clinical Study Results Database was created by the pharmaceutical trade group PhRMA as part of an industry-wide effort to expand access to clinical trial data. Moving forward, Pfizer will continue to post data from the company's late-stage clinical studies for marketed medicines.

Patients interested in participating in an on-going Pfizer clinical trial will find registration information at the National Institute of Health's web site at Clinical Trials. Currently, 265 on-going Pfizer studies are posted there. Pfizer regularly updates the site when new studies begin enrollment.

For full news release goto: News Release

Friday, September 30, 2005

Antibiotic Reverses Airflow Obstruction in Lung Transplant Recipients

News from Medscape Pulmonary Medicine

NEW YORK (Reuters Health) Sept 15 - The long-term survival of lung transplant recipients is limited by the development of bronchiolitis obliterans syndrome (BOS), a condition thought to be irreversible, but UK researchers suggest that the drop in lung function can, in fact, be reversed through treatment with azithromycin (Zithromax).

Encouraging findings from a pilot study, led Dr. Paul A. Corris, from The Freeman Hospital in Newcastle upon Tyne, and colleagues to retrospectively evaluate the effects of azithromycin on lung function in 20 lung allograft recipients with established BOS.

Azithromycin was introduced at a mean of 82 months after transplantation, according to the report in the September issue of the American Journal of Respiratory and Critical Care Medicine. All of the subjects were treated with immunosuppressive regimens that included a cell-cycle inhibitor, oral corticosteroids, and a calcineurin inhibitor.

After 3 months of treatment, azithromycin therapy was tied to a 110 mL median increase in FEV1 (p = 0.002), the authors point out. Moreover, the majority of patients who experienced an early benefit showed sustained improvements at up to 11 months.

"This case series," the authors observe, "confirms the benefit of azithromycin in not only halting, but reversing the declining lung function seen in patients with BOS."

"Low-dose macrolides," they conclude, "offer a new and exciting therapeutic strategy for the treatment of progressive BOS, and further clinical and translational mechanistic studies are required."

Am J Respir Crit Care Med 2005;172:772-775.

Thursday, September 29, 2005

Drug Firms Launch Web Site to Disclose Trials Data

LONDON (Reuters) Sept 21 - The global pharmaceutical industry launched a new Web site Wednesday, Sept 21 giving details of clinical trials on new medicines in a bid to allay patient fears over drug safety.

The new portal Clinical Trials established by the International Federation of Pharmaceutical Manufacturers and Associations, links available online information about clinical trials worldwide

The pharmaceutical industry recognizes that a broader access to clinical trial information can be of significant benefit to patients as well as to the medical community in that it can help to facilitate medical decisions about potential therapies.

In a joint EFPIA/IFPMA/JPMA/PhRMA position on the disclosure of clinical trial information via clinical trial registries and databases that industry issued in January 2005, it committed to make information available on ongoing clinical trials (Clinical Trials Registries) as well as on results of clinical trials (Clinical Trials Results Databases).

By providing a single user-friendly entry site, the IFPMA portal aims to facilitate patients' and doctors' searches for comprehensive information on clinical trials.

(For example I entered a search for "pulmonary fibrosis" and received hundreds of results. Merv)

What information can you find by using this portal?

The new internet search portal establishes links to IFPMA member company websites as well as other commercial and government-sponsored websites containing information on clinical trials provided by pharmaceutical companies.

Firstly, the portal can be used to search the mentioned websites for information on newly initiated clinical trials that are performed to determine the therapeutic benefit of a given medicinal product. Here, patients (in conjunction with their healthcare providers) will find as well information on how to enquire about enrolling in the ongoing trial they are interested in.

Secondly, the portal enables the user to find results of clinical trials conducted on medicinal products that have been approved for marketing. Industry committed to disclose these results in a non-promotional summary, regardless of the trial outcome.

Wednesday, September 28, 2005

Inheritance, Smoking Spawn Mysterious and Deadly Lung Disease

9/27/05
DURHAM, N.C. – An incurable, deadly lung disorder, "idiopathic interstitial pneumonia" (IIP), whose causes were mysterious, arises from a combination of a genetic predisposition and damage due to inhaled chemicals, notably from cigarette smoking, Duke University Medical Center researchers have found.

They said their findings could lead to a treatment, but more immediately represent a warning to people with the genetic predisposition, not to smoke.

IIP is a form of pulmonary fibrosis, a group of diseases characterized by scarring of the lungs. The condition, for which no treatment exists, typically kills its victims within five years. While the prevalence of the disease is unknown according the National Institutes of Health, estimates indicate the numbers are rising with as many as 15,000 new cases of idiopathic pulmonary fibrosis -- a form of the disease having unknown causes -- diagnosed yearly in the U.S.

Read the complete report: Pulmonary Fibrosis

Tuesday, September 27, 2005

Health consequences of smoking 1–4 cigarettes per day

This study, published in Tobacco Control, adds to the mountain of evidence about the health risks of smoking.

Objectives: To determine the risk in men and women smoking 1–4 cigarettes per day of dying from specified smoking related diseases and from any cause.

Design: Prospective study.

Setting: Oslo city and three counties in Norway.

Participants: 23,521 men and 19,201 women, aged 35–49 years, screened for cardiovascular disease risk factors in the mid 1970s and followed throughout 2002.

Conclusions: In both sexes, smoking 1–4 cigarettes per day was associated with a significantly higher risk of dying from ischaemic heart disease and from all causes, and from lung cancer in women. Smoking control policymakers and health educators should emphasise more strongly that light smokers also endanger their health.

Read the full abstract: Tobacco Control

Sunday, September 25, 2005

Dark chocolate may reduce blood pressure, improve insulin resistance

For chocloate lovers who've been told their favorite treat was "unhealthy" there is now a suggestion that dark chocolate may reduce blood pressure and improve insulin resistance, according to a report in Hypertension: Journal of the American Heart Association.

Researchers report in this article that if you have high blood pressure, a daily bar-sized serving of flavonol-rich dark chocolate might lower your blood pressure and improve insulin resistance.

Previous studies suggest flavonoid-rich foods, including fruits, vegetables, tea, red wine and chocolate, might offer cardiovascular benefits, but this is one of the first clinical trials to look specifically at dark chocolate's effect on lowering blood pressure among people with hypertension, said study author Jeffrey B. Blumberg, Ph.D.

Read the full report: Dark Chocolate

Thursday, September 22, 2005

Fund Raising For Lung Transplant Research

Merv Sheppard, Dr. Lianne Singer, Dr. Shaf Keshavjee, Kim Cassar, Peter Laurence

Lung transplant recipients Kim Cassar, Peter Laurence and Merv Sheppard organized the Transplant Open Golf Tournament, with the support of Toronto General & Western Hospital Foundation and other volunteers, to raise funds for the Lung Transplant Team at Toronto General Hospital. Golf Photos

At a lung transplant support group meeting September 21, 2005 Kim, Merv and Peter proudly presented a check for $13,184 to Dr. Shaf Keshavjee, Director of the Lung Transplant Program and Dr. Lianne Singer, Lung Transplant Program Medical Director, in support of lung transplant research. Next year's tournment is June 7, 2006 at Castlemore Golf & Country Club in Brampton, Ontario. We hope to double the above amount next year. Mark your calendars!

Check presentation photos: Presentation

Wednesday, September 21, 2005

New Relief From Postherpetic Neuralgia (PHN)

One of the most debilitating experiences I ever had in my life was with the pain caused by postherpetic neuralgia (PHN) that followed my bout of shingles. Many immune-suppressed patients who have had chicken pox as a child suddenly now find themselves overcome by shingles and the ensuing pain. So these announcements from Pfizer bode well for the future management of PHN.

This is the U.S. announcement. The Canadian announcement is similar.
NEW YORK, September 21 -- Pfizer Inc announced today that Lyrica® (pregabalin) capsules c-v, a new prescription medication for the management of neuropathic pain associated with diabetic peripheral neuropathy (DPN), postherpetic neuralgia (PHN) and adjunctive treatment of partial onset seizures in adults with epilepsy, is now available in U.S. pharmacies.

Neuropathic pain, one of the most debilitating forms of pain, is caused by nerve damage that can result from underlying conditions, such as diabetes or shingles. Nearly half of the 18 million Americans with diabetes will develop some form of diabetic neuropathy over the course of their disease. Some will develop painful DPN which is often described as burning, tingling, sharp, stabbing, or pins and needles in the feet, legs, hands or arms.

PHN is a complication of shingles, a painful outbreak of rash or blisters on the skin caused by a reactivation of the same virus that causes chicken pox (the herpes zoster virus). Each year, about 150,000 Americans develop PHN, which is often characterized as constant stabbing, burning, or electric shock-like sensation.

Full U.S. press release: Lyrica Now Available in U.S.

Full Canadian press release:Lyrica Now Available in Canada

Tuesday, September 20, 2005

Hospital Cafeteria Food a Recipe for Illness?

We are starting to see more and more articles and news items claiming that hospital cafeteria food is a recipe for illness, and this new report by the Physicians Committee for Responsible Medicine (PCRM) indicates that high-fat, high-cholesterol meals increase the risk of heart disease and cancer for hospital staff and visitors.

But I think there's more than meets the eye here. Read on and see what you think about the pros and cons of what's being advocated.

I've excerpted the report below with a link to the full news release.

Thursday, September 15, 2005
WASHINGTON—Nutrition scientists with the Physicians Committee for Responsible Medicine (PCRM) have conducted a nationwide survey to determine if hospital cafeterias and restaurants are meeting the need for low-fat, cholesterol-free foods that can help people maintain a healthy weight and prevent heart disease, diabetes, and some cancers. While there are some promising trends, such as the wide availability of whole-grain products and fresh fruit, there is an urgent need for improvement. The survey reveals that fewer than one-third of hospitals offer either a daily salad bar or a daily low-fat, cholesterol-free entrée. Moreover, a nutritional analysis reveals that many entrées described as healthful by hospitals are actually very high in artery-clogging fat. Sixty-two percent of these “healthiest entrée” offerings derived more than 30 percent of calories from fat, and a few derived more than 50 percent of calories from fat.

For the full news release go to: PCRM

Contact: Jeanne S. McVey at 202-686-2210, ext. 316, or cell 415-509-1833;
jeannem@pcrm.org


At first the above article caught my attention and I said yes, some hospital food is unhealthy, with so many burger and pizza fast food restaurants springing up in hospitals all over the country.

But when I dug into this more deeply PCRM seems to be an organization advocating a total vegetarian diet with only about five percent of it's members being actual physicians.

Here's what ActiveCash.com had to say recently:
The Physicians Committee for Responsible Medicine (PCRM) is a wolf in sheep’s clothing. PCRM is a fanatical animal rights group that seeks to remove eggs, milk, meat, and seafood from the American diet, and to eliminate the use of animals in scientific research. Despite its operational and financial ties to other animal activist groups and its close relationship with violent zealots, PCRM has successfully duped the media and much of the general public into believing that its pronouncements about the superiority of vegetarian-only diets represent the opinion of the medical community.
“Less than 5 percent of PCRM’s members are physicians,” Newsweek wrote in February 2004. The respected news magazine continued:

[PCRM president Neal] Barnard has co-signed letters, on PCRM letterhead, with the leader of Stop Huntingdon Animal Cruelty, an animal-rights group the Department of Justice calls a “domestic terrorist threat.” PCRM also has ties to People for the Ethical Treatment of Animals. An agency called the Foundation to Support Animal Protection has distributed money from PETA to PCRM in the past and, until very recently, did both groups’ books. Barnard and PETA head Ingrid Newkirk are both on the foundation’s board.

ActiveCash.com is part of the ConsumerFreedom.com network, and is committed to providing detailed and up-to-date information about the funding source of radical anti-consumer organizations and activists. They have analyzed over 410,000 pages of IRS documents to create their database, and new information will be added every month.

go to this link for the full article:
A Wolf in Sheep's Clothing

So what's right and what's wrong here? I would be interested in you comments. Merv.

Monday, September 19, 2005

Freedom from eye glasses for cataract patients?

This looks like good news for transplant recipients that develop cataracts.

After being on high doses of Prednisone before and after my lung transplant, I developed cataracts and was starting to go slowly blind. Thanks to the miracle of an intraocular lens implant in both eyes I now have perfect 20/20 vision as far as distance goes, but need glasses for reading. Now, there is news that a lens has been developed that provides correction for both near and far sightedness.

Emory Eye Center is the first to offer a newly FDA-approved intraocular lens (IOL) for cataract patients. The lens provides them with a new option for post-surgery vision correction -- that of freedom from glasses. The lens provides near, intermediate, and far vision capabilities.

Alcon Corporation's new AcrySof ReSTOR Apodized Diffractive IOL provides those with or without presbyopia a quality range of vision. Presbyopia ('old age vision') is a refractive condition with a diminished power of accommodation due to a loss of elasticity of the crystalline lens. Typically, those over 40 have this condition.

The new lens allows those patients freedom from glasses following their IOL implant(s). Older IOLs, typically implanted after cataract removal, normally require patients to use reading glasses or bifocals for near vision. In clinical trials with patients who have bilateral cataract removal, 80 percent of them used no glasses following their surgery.

The ReSTOR lens is a foldable IOL that replaces the diseased cataract lens. The complementary technologies of apodization, diffraction and refraction allow patients to experience a full-range of vision without the need for glasses.
'This device is an exciting opportunity for patients and physicians,' says J. Bradley Randleman, MD, a cornea specialist at Emory Eye Center. 'We now have a lens option that may provide high-quality distance and near vision for our cataract patients, and significantly reduce their dependence on glasses for their everyday lives,' he says. "

Full press release: Intraocular Lens

Wednesday, September 14, 2005

Intermission

Regular posts will resume next week. I'm away on Organ Donation Awareness business for the next few days. Meanwhile please browse my previous posts and links. Thanks, Merv.

Saturday, September 10, 2005

Lung Transplant Support Group Meetings September and October, 2005

Support Group Meetings in Toronto and Kitchener are on-going as noted. Please read below for location and directions.

TORONTO SUPPORT GROUP MEETINGS – Wednesdays at 11am – Pre & Post Transplant patients please read:

The support group has a pre-transplant focus and is intended for pre-transplant patients/families and those who are up to about 3 months post-transplant. All post lung transplant patients are invited to attend any meeting where a physician is speaking.
Support persons may attend all meetings.

Cepacia negative patients may attend from the 1st to the 15th of the month. Cepacia positive patients may attend either meeting from the 16th to the end of the month.

Out of town patients who have the opportunity to attend only during occasional visits to the hospital should feel welcome to come at any time.

Meeting Schedule - September and October, 2005 (subject to change without notice.)

  • September 7th Sarah Greenwood – relaxation techniques

  • September 14th - General Meeting

  • September 21st - Special Event: Dr. Shaf Keshavjee, Director, Toronto Lung Transplant Program , will attend and be presented a check by post-transplant patients, Kim Cassar, Peter Laurence and Merv Sheppard, who, along with other volunteers, organized a very successful golf tournament to raise funds for transplant research. This is an open meeting and everyone is invited. Let's have a good turnout in support of Dr. Keshavjee and his team.

  • September 28th - Speaker: Post transplant coordinators, Debbie Zogalo and Josie Dorosz

  • October 5th - Speaker: Transplant Pharmacist will discuss transplant medications and answer questions

  • October 12th - General Meeting

  • October 19th - Sarah Greenwood – relaxation techniques

  • October 26th - Speaker: Lung transplant Civitan members will update us on their work and their goals designed to assist lung transplant patients

Meetings are at 11am, 11th floor west, Room 1135 NCSB
(NCSB - New Clinical Services Building, Toronto General Hospital - take elevators from University lobby)


Contact:
Maureen O'Dell MSW RSW
Social Worker, Multi Organ Transplant Program
Toronto General Hospital, University Health Network
200 Elizabeth Street, Toronto, Ontario, Canada, M5G 2C4
Tel: (416) 340-4800 ext 4612
Email Maureen!

"WAITING IN HOPE” Mondays 11am to 12 Noon in NCSB 12C Room 1202, Toronto General Hospital - "Waiting in Hope" offers a place for patients and/or support persons to gather together and share their experience and how it impacts their sense of spirituality, faith and understanding of life.
Info: Maureen O'Dell (see above)

KITCHENER-WATERLOO AREA SUPPORT GROUP MEETINGS start at 7:30 P.M. the first Tuesday of every month and are held at the Lions Arena, (corner of Rittenhouse & Block Line Rd.) in Kitchener, Ontario. For more info please call Denise Secours at 519 578-0288.

Thursday, September 01, 2005

Another Brief Intermission

Because of my wife Joan's diagnosis of breast cancer and the subsequent surgery, etc. my posts to this blog have been a bit sporadic and will probably be so for the next little while. Thanks for your understanding and patience. Merv.

September 1st, 2005
Here’s the latest on Joan.
The surgeon had a meeting late last week with his committee (microbiology, oncology and surgery) to discuss Joan’s case. The consensus was that rather than proceed with further surgery (which would delay radiation treatment by several weeks or a month) they recommended that Joan start radiation therapy now, 5 days a week for 6 to 8 weeks plus systemic therapy. The committee felt this should eradicate the remaining cancer cells. Meanwhile, Joan has been having a lot of pain with the huge hematoma and the surgeon drained 90cc’s of fluid Wednesday. Joan has now been referred to an oncologist and we are waiting for a call from the Cancer Clinic, which should be next week. The last couple of days have been rough for Joan but she seems to be much better today and hopefully this bodes well for the days to come. We hope you have a great Labor Day weekend. More updates later. Merv.

August 22, 2005
We met with the surgeon today and he reviewed the pathology report from Joan's surgery. The sentinal lymph node contained cancer cells and was an indication that the cancer had spread away from the original tumor site and he felt further surgery will be required; but he wanted to discuss Joan's case with the breast cancer specialists at a meeting this Thursday, Aug. 25th and will call us to confirm the next steps after that meeting. The surgeon also said that Joan will definitely require at least six weeks of radiation, five days a week and undergo systemic therapy such as tamoxafen. Thanks to all for your wonderful support. Merv.

August 17, 2005
Joan had a clinic appointment with the surgeon today, Aug. 17th. He removed the drainage tube that has been causing a lot of pain, but unfortunately he still did not have the pathology report back; however he called us a short while ago to say he had a “verbal” confirmation that she has Ductal Carcinoma with only one of the lymph nodes involved. (A condition called "atypical hyperplasia" occurs when abnormal cells of the breast cluster. As these cells continue to divide rapidly, changes or mutations can occur in the cells and they can form what is known as "intraductal cancer" or "ductal carcinoma in-situ " (DCIS). Carcinoma in-situ stays "in place" from where it started and has not spread to other areas of the body).

Joan’s cancer has been classed as stage two.

We have another clinic appointment next Monday, Aug. 22nd. The physician will review the pathology report with us and confirm the type of Ductal Carcinoma (there are several types) and the initial treatment. At the very least Joan will have to go on a course of radiation plus systemic therapy and the Cancer Clinic has already been called to arrange this.

It looks as if the cancer has not spread beyond the right breast area which is certainly hopeful news.

I’ll update this post after our next clinic appointment.


Email me at: Merv Sheppard

August 15, 2005
Joan is resting comfortably at home now. During the surgery for a partial mastectomy of her right breast the surgical team also removed the relavent lymph nodes. A drainige tube was sutured into her armpit area and this will probably be removed early this week. We still do not know the type or extent of her cancer and hope to learn more during our appointment with the surgeon scheduled for Wednesday, August 17th. I'll update this post regularly. Merv.

Email me at: Merv Sheppard

Joan, Myrtle Beach, 7-9-05
August 8, 2005
I haven't been able to publish regular posts here for the past week or so and probably won't be doing much this week either. A little over a month ago my wife Joan received a report that her yearly mammogram showed a suspicious mass. She then had a biopsy and we learned last Thursday that she has breast cancer. She's been fast-tracked for surgery; the pre-surgery clinic was today and she will have the operation tomorrow, August 9th. So as you can see I'll be busy and away from the blog. Thanks for your patience.

Tuesday, August 23, 2005

Remembering Jocelyn Schryver

Jocelyn Schryver
Jocelyn Schryver passed away one year ago today. She received a double-lung transplant in June, 2002 and it was my great pleasure to get to know her at that time and become her friend. Unfortunately, that transplant did not work out and she went on the waiting list once again, but left us before another donor was found. I am pleased to post the following letter to the editor published yesterday in the Toronto Sun. Merv.

"Tomorrow, Aug. 23, marks the first anniversary of the passing of my beautiful daughter, Jocelyn Schryver, while she was waiting for a lung transplant.

To honour her memory, and the valiant struggle she fought to live, I implore everyone who reads this letter to consider signing an organ donation card and to discuss your final wishes with your family and friends.

In Canada we are blessed with the facilities and the brilliant doctors who are able to perform these life saving procedures. I know that for most people the thought of ever needing an organ, or going through with an operation of this magnitude, seems overwhelming and frightening and so they avoid making the decision to donate.

However, there may come a time when they will need a lung, a liver, a kidney, a pancreas, tissues or corneas, or a loved one, possibly their own child, who will require the unselfish gift of life from a donor even if right now it seems unthinkable.

My daughter became a donor instead of a recipient and I miss her every minute. However, she was a keen proponent of organ transplantation and it was her wish that as many lives could be saved as possible.

We have the resources; now it is up to each of us to let others live if we no longer can.

Joette Kruger

Toronto


(What a beautiful tribute to your daughter. Everyone should sign a donor card)"
Toronto Sun, August 22, 2005.

Thursday, August 18, 2005

Find The Lowest Gas Prices In Your Area


Gas prices are skyrocketing and changing almost hourly. But there are bargains to be had if you know where to go. By using the free GasBuddy web site below I just found a Shell station 10 minutes from where I live with prices 10 percent lower than other stations in my area.

Since gasoline prices change frequently and may vary by as much as 20 percent within only a few blocks it is important to be able locate the gas station with the lowest priced fuel. GasBuddy Organization web sites for the U. S. and Canada allow consumers to both share information about low priced fuel with others as well as target the lowest priced stations to save at the pumps.

"What's this got to do with organ transplants?", you might say. I know many transplant recipients who are under great financial hardship caused by their illness and hopefully this will help them to save a few dollars. Merv.

Click here and select your area: GasBuddy

Tuesday, July 26, 2005

Alan Korpela's Passing

We were very sorry to learn about Alan Korpela’s passing. Al received a double-lung transplant April 1, 2004. We extend our deepest sympathy and condolences to Al’s wife Barbara and family. I received the following note from Barb yesterday. The photo was taken just shy of two months post transplant. Merv.

“Merv: it is with great sadness that I tell you about Al's passing on June 30. Al picked up a bacteria and within hours it took his life. He lived life to the absolute fullest never once complaining, he always said if I could get one year with my new lungs it will all be worth it, and he did, he celebrate his first year anniverary April 1st. Please pass this message on.”
Barb. Korpela (al_korpela@hotmail.com)

Alan Korpela

Monday, July 25, 2005

Mark Black At The Games

Mark Black, Heart & Double Lung Transplant recipient, took part in the World Transplant Games in London, Ontario, Canada in July, 2005 and we are pleased to announce that he placed 5th in the 1500 meter race. Congratulations to Mark for his amazing accomplishment. Mark received his "Gift of Life" at Toronto General Hospital in September, 2002. He was born with a congenital heart defect and until his transplant he was unable to participate in sports. But now just look at him go!

Duble Lung transplant recipients Peter Laurence and Dave Reynolds met Mark at the games and Peter sent me this photo of Dave, Mark and his fiancé Marise.

Dave Reynolds, Mark Black & fiancé Marise

Just prior to the games I received the following from Mark's Mother, Monique and it looks like Mark deserves another nice round of applause for this accomplishment also.

"Mark and Marise just left....

...they gave us the OK to announce their engagement!! Mark did a great job with his planning - right down to getting parental approval (we saw the ring this morning, then Marise's parents....) will let him relate the whole plan...suffice it to say it was very elaborate and theatrical...one for the books:)

We are thrilled - Marise is wonderful and they suit each other perfectly! She was completely caught off guard...we leave for the long trip to Ontario (for the transplant games) tomorrow and we all expected Mark's main thoughts to be the Games...little did we know:)

Current thoughts are for a wedding next summer! FUN, FUN, FUN...we're the parents of the groom - no work for us right?",
Monique.

Saturday, July 23, 2005

Photos - World Transplant Games 2005

Based at the University of Michigan, All About Transplantation and Donation (www.transweb.org) is a nonprofit educational web site serving the world transplant community. Their team of reporters and photographers has provided extensive coverage of the games in London, Ontario, Canada July 16th-24th and their site offers a wealth of stories and photos: Games Coverage

Wednesday, June 29, 2005

Brief Intermission

I'm away for a holiday. The photo gives a good clue as to what we will be doing. Regular posts will resume when I return July 23rd. Meanwhile, please browse my previous posts and links. Merv.
p.s. July 23rd - We're back from Myrtle Beach fully refreshed and rejuvenated. Just what the doctor ordered! If you would like to see what the Myrtle Beach area is like I've put a few photos on my web site: Myrtle Beach

Myrtle Beach, South Carolina