Transplant Athletes In Action

Transplant recipient Amy Holdorf from Toronto participated in the U.S. Transplant Games this past June and did extremely well in many events, as you will see from the photos she has posted on her Yahoo gallery. Amy received a kidney from her mother Diane July 28, 1994.

Amy is now 33 years old and has developed into quite an athlete. She took part in several events and her father John even ran the 5k race with her (the public could take part but were not eligible for medals).

For full coverage of the U. S. 2006 Transplant Games click here.

Amy is now looking forward to seeing her “Canadian buddies” at the Canadian Transplant Games in Edmonton this coming August 8th to the 13th.

Amy is truly an inspiration to others and she is a fine example of how a life can be transformed by an organ donation and the goals and achievements that can be attained.

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.

The Canadian Transplant Games web site posts a list of all registrants, and in addition to Amy, it’s wonderful to see so many transplant recipients making their way to Edmonton, Alberta to participate. I hope everyone has a great time and in my mind everyone is a winner for just participating and showing the world what is possible.

Some of the registered transplant recipients going to Edmonton that I recognize are: Mark Black, Carla Borton, Sharon Smith, Kurt Penner, Darlene McNeil, Dick Winter, Tom Awad, Sylvie Gauthier, Sara Murray, Frank Bialystok, Ian Robb and of course, Amy Holdorf. I’m sure you will recognize many more as you scan the list. Please join me in extending our very best wishes to everyone taking part in the games.

Study shows Neoral® provides kidney transplant patients with efficacy equivalent to tacrolimus and significantly lower incidence of diabetes

• New study demonstrates Neoral has equivalent efficacy to tacrolimus in preventing rejection of kidney transplants


• Results show incidence of new-onset diabetes following renal transplantation is significantly lower with Neoral than tacrolimus


• Diabetes is a major risk factor for cardiovascular disease - the leading cause of death in patients with a functioning graft

Basel, July 24, 2006 - A large-scale head-to-head study has shown that Neoral® (cyclosporine) and tacrolimus have equivalent efficacy in preventing organ rejection in kidney transplant patients, but those treated with Neoral had a significantly lower incidence of new-onset diabetes.

Diabetes is a major risk factor for cardiovascular death in transplant patients. The study results suggest that immunosuppressant efficacy is not the only factor to affect the long-term outcome for patients surviving organ transplantation. The findings of the study were presented today at the World Transplant Congress in Boston.

"The results of this study are especially important in view of the clear association between diabetes and the development of cardiovascular disease, which is the leading cause of death in post-transplant patients with a functioning graft," said Flavio G. Vincenti, MD, a kidney and pancreas transplant specialist with the Department of Medicine at the University of California at San Francisco. "By demonstrating the equivalence of Neoral and tacrolimus in preventing organ rejection, this study elevates the need to address diabetes risk as a new strategy to prolong life in transplant patients."..read full news release at Novartis web site.

Qualifications For Living Donors

Further to the previous post about 9 month old Kailey Simmons of Barrie, Ontario needing a liver transplant, there have been many questions about who can be a living donor and what organs are suitable for living donation. Several transplant recipients wanted to know if they would be eligible to donate part of their liver to Kailey. The Organ Procurement and Transplantation Network (OPTN) covers these issues extensively in their fact sheet and the following is an excerpt.

To inquire about Kailey's situation in Ontario, call The Living Donor Liver Transplant Assessment Office at 416-340-4800, ex 6581.

Qualifications for Living Donors

In order to qualify as a living donor, an individual must be physically fit, in good general health, and free from high blood pressure, diabetes, cancer, kidney disease, and heart disease. Individuals considered for living donation are usually between 18-60 years of age. Gender and race are not factors in determining a successful match.

The living donor must first undergo a blood test to determine blood type compatibility with the recipient.

As with any major operation there are risks involvoved in Living Donation.

Please read the complete overview at OPTN.

Organ Types for Living Donation

Living donor transplants are a viable alternative for patients in need of new organs. Many different types of organs can be delivered by living donors, including:

• kidney
  This is the most frequent type of living organ donation. For the donor, there is little risk in living with one kidney because the remaining kidney compensates to do the work of both kidneys.



• liver
  Individuals can donate segments of the liver, which has the ability to regenerate the segment that was donated and regain full function.



• lung
  Although lung lobes do not regenerate, individuals can donate a lobe of one lung.



• pancreas
  Individuals can also donate a portion of the pancreas. Like the lung, the pancreas does not regenerate, but donors usually have no problems with reduced function.



• intestine
  Although very rare, it is possible to donate a portion of your intestine.



• heart
  A domino transplant makes some heart-lung recipients living heart donors. When a patient receives a heart-lung "bloc" from a deceased donor, his or her healthy heart may be given to an individual waiting for a heart transplant. This procedure is used when physicians determine that the deceased donor lungs will function best if they are used in conjunction with the deceased donor heart.

Barrie Baby Needs New Liver

The Barrie Advance; Friday, July 14, 2006

Nine-month old Kailey Simmons is fighting for a better life, but if she doesn't get a liver soon, she'll be fighting for her life. ... According to the Canadian Liver Foundation, a piece of an adult's liver may be transplanted into a child. ... [Her grandmother Angela] Henderson is encouraging people to sign their donor cards, and she would gladly take a cadaver donation or would appreciate a living donor coming forward.

Contact the Ontario Trillium Gift of Life Network at 1-800-263-2833 or visit their website for more information about being a donor. Toronto General Hospital runs a living donor program; call 416-340-4800.

Donorcycle Portrays Life as a Transplant Coordinator

This post from Medscape Transplantion should be of interest because it is an interview with a transplant coordinator in the U.S. who keeps a blog of her daily activities. Below is a link to the full interview as well as a link to Donorcycle's (her pseudonym) blog.

07/05/2006
Nicholas Genes, MD, PhD

When it comes to organ donation, everyone seems to have an opinion. But few people really understand all that's involved -- from the reluctant families of potential donors to the grateful recipients, and all of the medical and ethical decisions that must be made in between. One person who oversees every aspect of donation is the transplant coordinator.

And in one case, "TC" is not just a job title but also a pseudonym for a transplant coordinator who writes about her job at the blog Donorcycle. With her regular posts, she details the emotional and procedural complexities of this important, demanding job.

Read Dr. Genes Interview

My new world

Yesterday I spent the morning receiving hearing aids for both ears. It was quite a technological procedure, with the aids being digitally calibrated for each ear by computer software. Also, they are tracked by a GPS-like system that my speciaist can monitor for problems.

It was an exciting new experience, let me tell you. I never realized how hearing impaired I was until wearing the devices. All of a sudden there were noises and sounds I never knew existed, such as flourscent lights buzzing and birds chirping as if they were sitting on my shoulder. But the most mind boggling experience was at the supermarket. I could overhear conversations of other shoppers and other noise backgrounds that were previously not there.

Hearing aids have come a long way and are almost invisible, and not visible at all from a front view. So if you've been putting off getting your hearing checked, I highly recommend you do it. The resulting enhanced enjoyment of life will be well worth it.

Aspergillus website for clinicians, scientists, patients and their relatives

This site now offers new updates for a wide range of information about the fungus Aspergillus and the diseases it causes. It is designed to provide information for clinicians, scientists, patients and their relatives. There is a section devoted to the needs of patients suffering from the effects of Aspergillus and links to the Aspergillus Trust. Go to: Aspergillus website

On the site you will find:

• diagnostic and research laboratory protocols
• treatment and antifungal drug information
• articles of interest
• actual case histories
• relevant conference and course details
• abstracts from conferences
• a large image library (more than 400 clinical photos, scans and different.species of Aspergillus) and videos
• information on Aspergillus genomics
• clinical and laboratory discussion forums
• a current and historical bibliographic database
• news about Aspergillus
• mycotoxin and Aspergillus species information
• veterinary diseases caused by Aspergillus

There is also a section providing free educational materials. And slides sets for teaching purposes. Go to: Aspergillus website

Cystic fibrosis-related diabetes

Cystic fibrosis patients suffer recurrent episodes of infection and inflammation that slowly destroy the lungs. The pancreas is also affected, interfering with proper digestion. This University of Florida study sheds some light on the associated complications of diabetes.

University of Florida
Melanie Fridl Ross, 7/5/2006

A growing number of cystic fibrosis patients are battling a second, often deadly complication: a unique form of diabetes that shares characteristics of the type 1 and type 2 versions that strike many Americans.

Many of these patients are teens who take enzymes to help digest their food and undergo daily physical therapy to loosen the thick, sticky mucus that clogs their lungs. But despite treatments that are helping thousands to live decades longer than ever before, when diabetes strikes, their life expectancy plummets - on average by two years for men and an astounding 16 for women.

Now a University of Florida study in animals suggests diabetes in cystic fibrosis patients is not caused by the destruction of insulin-producing cells in the pancreas - as is often the case in patients with the traditional form of type 1 diabetes - but by differences in how these cells function.

The findings were published this month in the American Diabetes Association's journal Diabetes..full news release

Is it a side effect or just plain old age?

At a few recent events, especially those that were held in large rooms such as auditoriums and cathedrals, I had a heck of a time hearing anything at all. At the memorial service for donors and donor families at St. Michaels Cathedral in Toronto June 9th I couldn't understand a word the speakers were saying. Last week, at a support group meeting at Toronto General Hospital, I couldn't make out what someone sitting nearby was saying nor could I understand a question from the back of the room.

This problem has been creeping up on me for a couple of years and I first noticed it during my year-long course of high-dose gabapentin for treating postherpetic neuralgia following shingles. Hearing loss is a reported side effect of gabapentin but is my situation really a side effect of the drug or is it just a coincidental result of aging? I guess I'll never know for sure.

So, after the embarassment of not understanding some speakers and remarks from the audience last week I picked up the phone the next morning to arrange a hearing test.

My worst fears were confirmed; I need hearing aids for both ears. They are now ordered and being custom made to fit my ear canals.

Stay tuned. I'm looking forward to getting my hearing back very soon.

It's not just jewelry, it's art!

Go directly to the jewelry store: Handmaid Jewelry

Below is an article written by the owner of a store on e-bay. What in the world has this got to do with organ transplants? you might say. But please read on.

Around the time of my lung transplant in 2002 I met Jocelyn Schryver, a young woman recovering from a double lung transplant due to cystic fibrosis. She was full of joy with her "new life" and quickly endeared herself to just about everyone she came in contact with at the hospital, including patients and staff. Sadly, complications set in and Jocey was eventually re-admitted to Toronto General Hospital where she passed away August 23, 2004.

On September 1, 2004 a memorial service was held for Jocey at Toronto General Hospital. I don't know of any other transplant recipient for whom such a service was held at the hospital. She was so well liked the room was packed as you can see by the photo journal I posted at Jocelyn's Memorial.

I also got to know Jocelyn's mother, Joette Kruger and her stepfather Peter Kruger. Joette's life and world was transformed by Jocey's passing and now, as you can read in her own words, she has re-invented herself. Out of this has come Handmaid Jewelry, an e-bay store you can visit at Handmaid Jewelry which I am very happy to promote here on my site. Merv.

It's not just jewelry, it's art!

In August of 2004 a tragedy befell my husband and I. Our only child passed away from complications of a double lung transplant (she had Cystic Fibrosis) and so you can appreciate how our lives changed. She was a ball of fire, always living each day to the maximum, talented in all of her endeavours, always smiling and taking the time to help anyone who needed. She was an extraordinary person and she was always coaxing me to take risks. I can just see her smiling at me over my shoulder as I write this.

It has always been my dream to one day make jewelry and actually have people like it enough to wear it....in my real life I have worked very hard for many years in the Financial and Human Resource fields but often I would sit at my desk and daydream about having my designs being worn by stars at the Academy Awards ceremonies! I've gone from being a bean counter to a bead counter! As Kramer on Seinfeld once said "I'm out there Jerrry, and I'm loving it!"

I've always played it safe in life. I was a very responsible and serious type, being an accountant does that to you. So taking this risk, showing the world my work, has been a complete departure from my old self.

Needless to say, since that time, my husband and I have to re-invent ourselves. Jocelyn was our primary focus and suddenly we were left with no place to put all that energy. For the first 18 months I walked around in a daze, and then suddenly in January of this year I decided to make Jocelyn proud and to follow my dream. She taught me to see how short life is and how valuable time is so here I am.

My jewelry designs are primarily the type of jewelry most women would be comfortable wearing. I have made some "mad" pieces but I do not yet show them on e-bay because I prefer to offer classic, and classy, pieces. I love working with Swarovski crystals and pearls but I am beginning to venture into gemstones and chain. I love the look and feel of beadwork and I only display on e-bay what has passed the inspection of my friends and relatives, my husband, and even some strangers. I am my most severe critic and so I am very careful with what I create and display.

Even though I am a designated accountant you would think I would be smart in financial areas with regard to my jewelry. But take heart! I am not yet confident in my sales strategies and I tend to offer my pieces at the cost price. So far I've made no profit, but that's okay for me, and for you as the buyer. My bidding starts much lower than many sellers and my store inventory pieces are priced at cost. So please know you are getting a very good deal when you purchase my pieces.

Please visit my e-bay store: Handmaid Jewelry. New items listed regularly! Featuring lovely gemstone articles!

I hope I haven't bored you with these musings. Thanks for taking a look!
Joette Kruger