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

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.”