Tuesday, January 18, 2005

LARGO study - your help is needed

Dr. Shaf Keshavjee and his Lung Transplant Team at the Toronto General Hospital are world leaders in lung transplant research and he discussed new and ongoing initiatives and trials at the January 12 Support Group meeting. Not only are we world leaders in lung transplant research, we are THE world leader in number of lung transplants performed, with a total of 64 transplants in 2004.

One of these exciting trials is currently enrolling members and Dr. Keshavjee introduced Sassan Azad, Clinical Research Coordinator for Lung Transplantation who will be coordinator for the LARGO study that has been designed to try and find ways to prevent rejection. Dr. Keshavjee and Sassan say this is a very important study and that your help is needed if you are either a pre lung transplant or post lung transplant patient.

"Just let you know that we already started recruitment for LARGO study. Tthere is no exclusion criteria and all the lung transplant patients are welcome to participate, Pre and Post Transplant. Please see below forr the contact information and how to participate." said Sassan.

Clinical Trials
Department of
Thoracic Surgery & Lung Transplantation

Lung Allograft Rejection Gene Expression Observational Study

Title: LARGO Study

Principle Investigator: Dr. Shaf Keshavjee

For participation or more information, please contact the Study coordinator:
Tel. 416-340-4800 Ext. 6224
Pager. 416-790-4532
email Sassan

Thursday, January 13, 2005

Julia Lyons Trust Fund

Julia Lyons needs our help. She received a double-lung transplant in June of 1998 and unfortulately had to have another in November of 2003. The following article appeared in The Beacon Herald, Stratford, ON, Canada January 8th, 2005. As a lung transplant recipient myself and knowing Julia personally, I can tell you that this story accurately reflects Julia and her struggle to live. Please read it. If you wish to help Julia donations can be made to the address at the end of the article. I took this photo of Julia last June: Julia Lyons

A Stratford woman still in fight of her life.
One year after double lung transplant, Julia Lyons continues her courageous battle

By Laura Cudworth
Staff reporter

Imagine your child is seriously ill in a Toronto hospital and she is alone.

That's the problem eating away at David Lyons. His oldest daughter, Julia, has been battling cystic fibrosis her entire life. The genetic disease causes exocrine glands to secrete abnormally thick mucus which eventually destroys the lungs and obstructs the pancreas. There is no known cure.

In the year since she endured a second double-lung transplant, she has been in and out of Toronto General Hospital.

The cystic fibrosis creates a series of complicated illnesses and the transplants add new ones. Her body is a magnet for viruses, because the anti-rejection drugs suppress her immune system. Recently, she's been vomiting for hours at a time, develops a high fever and becomes dehydrated. Doctors don't know why.

It means more time in the hospital. Time that's often lonely.

"I'm not able to see my dad hardly", she said.

Her dad works in shipping and receiving at Festival City Fabricators. There are no government support systems that would allow him to take time off, so he takes holiday days to see her. But the costs are prohibitive.

To stay at the hospital residence costs about $60 a night. Then there are the added costs of meals and parking and gas.

"If I go down to Toronto, they (the hotel) give me a special rate, but if my child's sick for months at a time, what do you do? It's pretty well impossible to be there with her," he said, sounding defeated.

Since November, she's been in the hospital more than she's been out. She goes without the luxury of a TV or magazines to break up the day, and sometimes without a phone.

The trust fund set up for her at St. Willibrord Credit Union years ago has recently run out, leaving the family to rely strictly on Mr. Lyons income and Julia's disability pension.

Julia is beautiful and fairy-like. It's hard to believe someone who looks so delicate has withstood so much. At 21, she's under five feet tall and at this point weighs less than 70 pounds. She's bright and articulate. The question that haunts her father is, what would she accomplish if she were healthy? It's a question that lingers.

"She's got this wonderful soul inside her, but her body is letting her down," Mr. Lyons said.

Despite setbacks few can imagine, she started university at Wilfrid Laurier in the fall. Her major was global studies. She was doing well at the beginning of the semester, but complications from medications and from illness forced her to stop.

"I'd like to go back. I really enjoyed the classes, but doing the work I don't have the energy I did before," she said.

In fact, she' so tired at times that she sobs. After a brief trip to a fast food restaurant with her family, she's completely worn out. From one day to the next she doesn' know if she'l have the stamina to leave her home.

"The transplants worked out, but my body's worn out from the first one. I guess with the second I expected it to work as well as the first, but I wasn't on all the drugs with the first one."

All the drugs are listed on two typed pages with an x marking the times to take them. Some call for 23 units while others call for 81. It could take half a day just to take the medications. Some are anti-rejection drugs and others attempt to address complications caused by the cystic fibrosis, diabetes, liver and pancreatic problems, just to name a few.

Julia got out of the hospital two days before Christmas. Mr. Lyons drove through a snow storm to go get her. In their living room there's no evidence of the holidays. No tree, no lights and no wreaths. There are no scraps of wrapping paper or bows anywhere.

Cystic fibrosis has taken its toll on the whole family. Mr. Lyons looks strikingly older than he did just a year ago. He spent about 12 months seeing a psychiatrist to help him cope with the stress and the helplessness.

"It's crushing, the difficulties I encounter," he said. "I get depressed a lot because I feel I've got everything on my shoulders. I'm trying to work and keep Julia from leaving us. Sometimes I wake up in the middle of the night wondering, Damn what can I do?"

There's little he can do. In the meantime, Julia does her best to charge forward. She enjoys spending time with her siblings and other transplant recipients, though it often tests her courage further. She recently lost a friend to cystic fibrosis. The friend was 24 and waiting for a second lung transplant.

"You see people die. It's hard. You don't want to see that," she said through tears.

Julia was forced to have a second transplant after her body rejected her new lungs when she was being treated for lymphoma. It wasn't an easy decision to make. The surgery is traumatic and gruelling, but the first transplant gave her a shot at a life like the ones her friends enjoy.

Though she's been very sick since the second transplant, she doesn't regret her decision. She doesn't consider it courageous either.

"When you're dying it's this or nothing," she said.

"I think anyone faced with the same thing would make the same decision. It's not a question of courage, it's a question of the situation you're put in," she said.

There will be more trips to the hospital. The only one she can go to is Toronto General, where she had the transplants.

"If I take her to any hospital other than Toronto General they're stumped," Mr. Lyons said. Each time she's admitted the family will do what they always do. Her sister Emily will do whatever she can to find a way to visit and her father will try to hold them together.

Contributions to the Julia Lyons Foundation trust fund can be made at St. Willibrord Credit Union at 391 Huron Street, Stratford, Ontario. N5A 5T6.
P # 519-271-4883
F #" 519-271-3431

The Kiwanis Club will issue a charitable receipt.

LETTERS TO THE EDITOR re above article:
Please address letters “Letter to the Editor” and send by mail to The Beacon Herald, 16 Packham Rd., P.O. Box 430, Stratford, Ont., N5A 6T6; by fax to 1-519-271-1026; or by e-mail to bhletters@bowesnet.com. Please do not send e-mail attachments. If using e-mail please be sure to include full name, home mailing address and daytime phone number.

Saturday, January 01, 2005

A New Year and a New Birth

Seasons greetings and a very happy and prosperous New Year!!!

I also wish to thank you for your Holiday cards, letters, faxes, e-mails and phone calls. My birthday fell near the end of December and I was absolutely overwhelmed that so many friends and readers of my newsletter and this web log remembered my birthday along with their seasonal greetings.

As a lung transplant recipient who will celebrate three glorious additional years of life this coming April, New Year's Day has a very special meaning. I can now proudly say I made it to the year 2005 and on New Year's Eve I really did have something very special to celebrate; it was a celebration of the birth of a New Year and my second chance at life, not only for myself but for all transplant recipients. Merv.