Wednesday, August 31, 2011

Scenes from the Candlelight Memorial

Source: Barnes Jewish Hospital

An estimated 700 people attended the MidAmerica Transplant Services (MTS)  candlelight ceremony last night to honor organ and tissue donors. MTS is the area’s organ procurement organization. Donor family members, along with several recipients, attended the event at the the memorial park adjacent to the MTS offices.
The centerpiece of the park is a sculpture by St. Louis artist Don Wiegand. The 12-foot sculpture, backed by a wall of warm gold-colored stone, features bas-relief bronze figures holding lit candles – meant to depict donor families.  Last night’s ceremony mirrored the sculpture.
The ceremony included music and speeches. But the two most dramatic and moving parts of the night were the rose ceremony and candlelighting.

When signing in at before the event, donor families were asked to write the name of their loved one on a card.  Later,  as KTVI-TV news anchor Tom O’Neal, who emceed the event, read the names off the cards,  family members came to the stage to get a rose. 
The roses were handed out by organ and tissue recipients from the area’s transplant centers. Heart transplant recipient Megan Moss represented Barnes-Jewish Hospital.
It was a bittersweet moment for many families, to hear their loved one’s name, remember their loss and then, when they received a rose from a transplant recipient, to see a symbol of  how their loved one had passed on the gift of life .
Large votive candles, decorated by family members before the ceremony, glowed next to the stage throughout the program. At the end of the ceremony, everyone in attendance was asked to light a smaller candle in tribute to organ and tissue donors and honoring those who make the generous choice to donate.


The candles lit up the breezy night. And though the storms that had been predicted didn’t materialize, a few raindrops, and teardrops, fell.
 

August 31, 1968: One Donor + Four Patients = Medical History

by Tony Long | WIRED


One team at Methodist Hospital in Houston removed the heart, the lobe of one lung, and both kidneys from a 20-year-old woman, the victim of a gunshot wound. The organs were transplanted into four patients: A 50-year-old man got the heart, the partial lung went to a 39-year-old man, and two men, 41 and 22, each received a kidney.

The entire production, which began within eight hours of the woman’s death, involved more than 60 surgeons, nurses and support staff.

For DeBakey, it was another milestone in a spectacular career that saw him develop a number of surgical techniques and procedures now commonly used in hospitals the world over. Among the surgeries he either pioneered or had an early hand in developing were the heart transplant, the arterial bypass and the artificial heart.

He also invented the Dacron graft, which revolutionized aneurysm repair. His work during Whttp://blog-admin.wired.com/thisdayintech/wp-admin/edit.phporld War II played a major role in the development of the Mobile Army Surgical Hospital, or MASH, which saved countless lives by providing emergency surgery for critically wounded soldiers within a stone’s throw of the front line.

Source: Today in Science History, Department of Veterans Affairs

Photo: American heart surgeon Dr. Michael E. DeBakey takes a break from surgery at Methodist Hospital in Houston. (Brett Coomer/AP)

Changes to Distribution of Livers for Transplant Proposed

Source: Science Daily

ScienceDaily (Aug. 30, 2011) — Transplantation specialists have proposed changes to the allocation and distribution of organs used for liver transplants. The recommended policy modifications take into account the scarcity of available organs, ensuring rapid allocation and delivery of the organ to those most in need in order to reduce mortality for waitlisted patients. Details of the proposed model are available in the September issue of Liver Transplantation, a journal published by Wiley-Blackwell on behalf of the American Association for the Study of Liver Diseases.

A number of diseases affect liver function, including hepatitis B and C, nonalcoholic fatty liver disease, and autoimmune liver disease. The severity of liver disease ranges from mild to more severe forms that are life-threatening. When the liver fails (end stage liver disease) and patient life is at risk for death, transplantation is the recommended option. However, the scarcity of donor organs is one of the greatest concerns for transplantation candidates and a challenge for clinicians who treat them. According to the Organ Procurement and Transplant Network (OPTN) there are more than 16,000 Americans on the waiting list to receive a liver as of August 2011.
The current model in the U.S. defines allocation as the order of patients on a particular waiting list. Since 2002, the transplantation community has used the Model for Endstage Liver Disease (MELD) score and length of time on waiting list to rank patients for allocation of the available liver. Distribution is the determination of the area to which a donor liver will be offered, and uses a local, regional, national system to distribute available livers for transplant. The OPTN donation service area that is assigned to the organ procurement organization is the designated "local" region using this system.
In an examination of the allocation and distribution of livers for transplantation, the authors reviewed the system currently used to determine which patients receive organs for transplant and provided alternative models to promote a more equitable distribution. "Given the disparity between supply and demand of deceased donor livers, there will always be differences of opinion as to which patient should be transplanted first," said lead author Kenneth Washburn, M.D., with the University Transplant Center, a partnership of The University of Texas Health Science Center at San Antonio and one of its primary clinical partners, the University Health System. "Any system that redistributes organs from low-need to high-need areas will not please all stakeholders," he added.
The authors note that most deaths on the waiting list occur in patients with low MELD scores -- the largest patient group on the list -- and allocating organs to this group would not reduce the overall death rate due to the low and unpredictable individual mortality risk. Since the largest number of deaths on the waiting list cannot be prevented through organ allocation, the authors suggest a system should focus on patients with higher MELD scores who have the greatest risk of death.
Based on prior feedback from involved stakeholders, small incremental changes to the current system would be the best method for making allocation policy improvements. One potential next step, according to the authors, is moving from a "share 15" regional model to a "national 15" sharing model which would direct donated livers to waitlist patients with MELD score of 15 at the regional then national level before candidates at the local level whose MELD score is less than 15 would be offered a liver.
Another incremental change the authors propose is regional sharing for the sickest patients with high MELD scores (> 35). Redistribution of donated livers to this patient group results in a decrease in waitlist mortality for these patients who have the highest risk of death while awaiting a transplant. "We suggest focusing on amendments to organ distribution that decrease waitlist deaths with the least amount of additional sharing of livers and minimizes the distance the organs travel," recommends Dr. Washburn.
Story Source:
The above story is reprinted (with editorial adaptations by ScienceDaily staff) from materials provided by Wiley-Blackwell, via AlphaGalileo.

Journal Reference:
  1. Kenneth Washburn, Elizabeth Pomfret, John Roberts. Liver allocation and distribution: Possible next stepsLiver Transplantation, 2011; DOI: 10.1002/lt.22349

My First Health Fair, Ohio

Source: LifeLine of Ohio

Donate Life Ambassador and kidney transplant recipient, Judy Jackson, recently volunteered at her first health fair! All of our ambassadors go through training to learn the facts about donation and help central Ohioans make educated decisions about the “Gift of Life.” Judy put her knowledge to good use at our booth during the 10TV Health and Fitness Expo. She was excited to share her story and register five new organ and tissue donors. Below are her reflections on the experience:


How did people react when you approached them to discuss organ and tissue donation?

I was excited that the majority of the people that I met were already organ and tissue donors and a few of them were very willing to show their Driver’s License for verification. Other people had questions or concerns about the process.

What were the main concerns you heard from attendees?
There were many people who wanted to think about donation more and others with misconceptions. Some people were afraid they would feel pain during the donation process, so I explained organs and tissues are only recovered after death. Others didn’t think their religion supported it, while all major religions do support donation, and some were told they couldn’t donate any organs because a disease. I informed them that it’s up to the medical professionals to decide what organs and tissues are viable for procurement at the time of brain death.

How did it feel to register new donors?

It felt great successfully signing up my first organ and tissue donor. After the first sign up, it was so much easier and I felt much more comfortable talking to people about donation. I could hardly believe that I managed to sign up five people at my first health fair!

I was so happy knowing that I was able to give back to the community and to those who are still waiting for THE PRECIOUS GIFT OF LIFE! That was one of my most rewarding experiences! I feel challenged to double that number at the expo next year. After all, I owe my extended life to my unknown kidney donor.

You had the chance to share your story on the Donate Life stage, what was that like?

At first I was hesitant to share my story with the world. After some deliberation, I felt that it would encourage people to become organ and tissue donors after they hear from someone who was touched by donation. Secondly, it would give hope to those who are still patiently waiting and fervently praying that one of these days, their prayers will be answered with a transplant.

The interview was easy and fun and I hope we impacted the people in our audience!

Is there anything you’d like to say to the people who stopped by our booth and registered as donors?

To all of you who signed up as donors, we sincerely appreciate your unconditional willingness to help those who are still hanging on to dear life and have been patiently waiting for many, many years for a generous donor to give them THE PRECIOUS GIFT OF LIFE! We are very, very grateful and commend you for taking that extra step to make an impact on somebody’s life.

Feel proud of yourselves as every donor can potentially save eight lives and enhance 50 more. Please help us spread the importance of organ and tissue donation!

Now out on DVD - The 5th Quarter DVD Review and Awareness for the Luke Abbate 5th Quarter Foundation and Organ Donation

by: Outnumbered 3 to 1


FROM THE ASHES OF GREAT TRAGEDY
CAN COME GREAT ACHIEVEMENT

A Triumphant Story of Family, Faith and Football,
THE 5TH QUARTER Comes to Blu-ray and DVD August 30

Summary: When a close-knit family is nearly broken by tragedy, hope is restored by their eldest son who carries the weight of victory on his shoulders in THE 5TH QUARTER, coming to Blu-ray and DVD August 30 from Twentieth Century Fox Home Entertainment.

A recent recipient of the Dove Foundation’s “Family-Approved” seal for all audiences over the age of twelve and in the spirit of The Blind Side, comes this inspiring true story of family, faith and football. Aidan Quinn (Legends of the Fall, A Shine of Rainbows) and Andie MacDowell (Four Weddings and a Funeral, Groundhog Day) deliver emotionally stirring performances as the mother and father of Jon Abbate, a rising football star at Wake Forest University. Their lives are suddenly shattered when the family’s youngest son, Luke, is killed in a tragic accident. Inspired by Luke’s memory, Jon courageously leads the Wake Forest team to a series of last-minute victories - leading to a thrilling climax that will “make you stand up and cheer” (NYC Movie Guru).
The 5th Quarter came out today, and the funny thing is that this is the first day that I watched it even though I've had the movie for about a week! My busy schedule just hasn't allowed time for movie watching these days. But a few hours ago, I curled up on the couch and made some time!

Instantly, The 5th Quarter sucked me into the Abbate family because you could just feel the love between them, the love that every family should have. I watched in agony as Luke cried for his friend to stop the car, his parents searched the accident scene for him and the entire group of family and friends never left his side. The sad thing is I was also remembering sitting at my dad's beside in his final hours. I don't think that river of tears really stopped through the entire movie as I was either crying for him, or crying for them.

The saddest, but also most memorable fact about The 5th Quarter is that it is based from a true story, from a real family's tragedy, pain and finally victory over that pain. It was one of the most inspirational movies I've watched in a very long time and moved me in ways that no other movie ever has.

In memory of the "real" Luke Abbate, his family started the Luke Abbate 5th Quarter Foundation to help:

Raise awareness among teenagers and parents about the life-and-death consequences of teenage driving.
Raise awareness among teenagers and parents about the life-saving gift of organ donation.Having recently started raising my teenage brothers, I worry about these kind of things every day. Soon they will both be driving and when I look back at some of the stupid and reckless things I used to do, it scares the life out of me. We live in a rural area with a ton of winding roads that can be pretty dangerous, especially in extreme weather conditions. I almost don't want to let them drive, ever. Since I know that isn't the solution and could potentially only make matters worse, I talk to them now {before they start driving} about being safe. Now I will have them sit down and watch The 5th Quarter too, because it really opened up my eyes and I hope it will do the same for them.

Another thing that I do want to raise awareness of is that little orange donor sticker you can put on your drivers license. You know, when I was 18 I refused to do it. For many, many years I continued to refuse because I didn't want to be "all cut up" when I died. Now that I'm older, wiser and perhaps just a little bit more compassionate, I rethought that big time. I'm not sure exactly when, but somewhere around 5 years ago, I added that sticker so that someday maybe I can make a difference and save a life! I hope you will choose to do the same.

New Challenge confronts long-tome Glenview transplant survivor, Illinois

by Natasha Wasinski| Glenview Announcements


Over the past 14 years, Damian Neuberger has become an expert on his health.

The double-lung transplant patient monitors his spirometry levels on a near-daily basis. He has to be mindful of his salt, potassium and salt intake, and wears a face mask when working outdoors. Neuberger, 68, takes more than 20 pills a day, on time and every time.

As told in a story in the Announcements April 15, 2010, Neiberger, who learned in 1983 that he had idiopathic pulmonary fibrosis, received a pair of lungs from a 19-year-old man in 1997. With a typical survival rate of about five years, Neuberger’s 14 years with his lungs are extraordinary.

Charles Alex, Neuberger’s physician at Loyola University Medical Center, said Neuberger is very detail-oriented and “the type of patient who tends to do well. He takes very good care of himself.”

Yet despite a strict adherence to his treatment plan, Neuberger knows there are no guarantees.

Now Neuberger faces a new challenge: the immune-suppressing drugs he diligently takes to prevent transplant rejection are causing kidney failure.

Neuberger needs another organ.

His name was added to the National Kidney Registry last September when his health took a turn for the worse and he was nearly put on dialysis, he said.

Neuberger’s wife, Judy, was willing to donate a kidney of her own but the health requirements are so stringent that she didn’t qualify.

And so Neuberger has been waiting for a stranger to step forward.

Since the kidney is most sought-after transplant organ in the U.S., others are in need, too: 89,490 of them to be exact, according to the Organ Procurement and Transplantation Network.

The timing of a transplant depends on geographic location. In Chicago, the average waiting time for a kidney is six years.

Neuberger has set his sights on Madison, where the average patient waits between six and 22 months for a kidney.

The thing with transplants, however, is they sometimes fall through. Time is of the essence with organs from deceased donors, and not every kidney is a good match for the intended recipient.

Sometimes living donors decide they don’t want to give after all.

Under those circumstances, it’s back to the waiting list, Neuberger said.

“Seventeen people die every day waiting for an organ and that’s something that can be avoided,” Neuberger said. “Of all the people in Illinois, if 130 volunteered to step forward, it would wipe out the waiting list.”

Neuberger said myths — like the one that doctors won’t save patients who are registered donors — prevent people from considering donation their organs.

“What doctor wants to be known as a doctor whose patients always die?” Neuberger asked. “They’d be out of a job.”

Amy Lu, director of the intra-abdominal transplantation division at Loyola, explained that organs can only be salvaged from bodies that are still alive and functional. Once blood flow is cut off, the body begins deteriorating within minutes.

“If the doctors don’t save your life and don’t treat you, then you’ll never become a donor anyway,” she said. “It’s only until after you’re declared brain dead that the donor network is called in.”

Lu said while a transplant is not the only solution to treating kidney failure, it is certainly the best.

“A transplant not only provides quality of life but the life survival benefits, too,” Lu said. The life expectancy of patient with a kidney transplant is two times greater than one who receives dialysis treatments, she said.

Donors, Neuberger recognized, are extraordinary people.

“Those people are giving such an incredible gift” that can only be described as “agape,” he said, “the sacrificial giving of self for someone else’s benefit.”

Neuberger still chokes up when he discusses his lung donor, Chad, a 19-year-old boy from downstate Illinois, and his relationship with Chad’s family. “I’m grateful to them and will always be grateful,” he said.

Chad’s parents often tell Neuberger that he is their “ray of sunshine,” he said.

“They think something good came from tragedy,” he said, and that “a part of their child is still alive.”

Neuberger is especially grateful since fewer than half of lung transplant patients survive for five years, let alone a decade.
“I don’t know how people get through this without faith,” he said.”If these are coincidences, I better go out and buy lottery tickets.”
His luck is being tested again.
A few weeks ago Neuberger received a call at 2 a.m. that a hospital in Madison found a donor match.
Neuberger had to delay the procedure due to a previously-scheduled hospital appointment but says the transplant might happen in September.
“I’m trading dying for living,” Neuberger said. “It’s all about hope.”

Local Heroes Donate Blood, Sign up as Organ Donors, New Jersey

Story and Photo by Grace Lim | Fort Lee Patch


Cathi Goldfischer of Fort Lee lives to donate. The blood and organ donor has been a member of the Fort Lee Ambulance Corps for 30 years, and she got her start with EMS at the age of 16. Goldfischer says she knows a number of people who have illnesses that will eventually require organ transplants, and she wants to tell those people that she would be happy to assist them if she is a match.

“I think being a part of EMS is that you’re just so interested in helping people,” Goldfischer said. “You see tragedy around you, and you recognize that out of that tragedy comes life. So many people can be saved by organ donation and it’s something that I felt passionate about for a number of years.”

Goldfischer was one of the veterans who returned for Fort Lee’s sixth annual Emergency Services Blood Drive last Friday at the Jack Alter Fort Lee Community Center. The event attracted both veteran and first-time donors.

According to Maria Vedoya, a registered nurse, 25 people had stopped by to donate blood by 5:00 p.m., but she said the annual blood drive attracted about 50 to 55 donors by the end of the day.

This year’s blood drive featured for the first time a chance for blood donors to sign up as organ donors as well. Fort Lee PBA delegate Frank Pantaleo said the new addition was inspired by Jessica Melore of the NJ Sharing Network.

“I met Jessica last year at a function where she was giving a speech,” Pantaleo said. “I became an organ donor after listening to her speech; not just because of her story, which was very moving, but because of the information she put out there.”

Melore was a senior in high school and the co-captain of her tennis team with no history of any major health problems. One night, she started to feel lightheaded and had chest pains. She suffered a massive heart attack at the age of just 16.

A blood clot was lodged in the artery leading to the left side of her heart, and it was completely blocking off blood flow. Doctors tried to remove the clot, but Melore was not expected to make it through the night.

Doctors turned to a heart transplant as a last resort to save Melore's life, and she wound up having to wait nine months for an available heart. During that time, doctors implanted a mechanical heart assisting device that pumped the left side of her heart and ran on batteries that needed charging every two to four hours. Doctors had to amputate her left leg above the knee because of complications from surgery.

Melore received the heart transplant a few days before her high school graduation.

“It’s so fulfilling to me because I didn’t know anything about donation before I was put on the waiting list,” Melore said. “I saw so many people die in the hospital who didn’t receive organs on time. If you were ever in that position of needing an organ or someone in your family needed one, you would hope someone out there had made that decision to become a donor.”

Although Melore says organ donation remains a sensitive topic for many, she believes life can result from tragedy.

“Organ donation is something that people don’t always think about because they might not want to think about death,” Melore said. “But it’s really about life. And it’s taking what could just be a tragic situation and having something positive come out of it.”

Fort Lee resident Lee Wasserman took the initiative to attend the joint blood and organ drive. He has a personal reason for donating blood every year.

“My brother was in a fatal car accident and they had to continuously give him blood,” Wasserman said. “Somebody might need it, and maybe the favor will be returned to me someday.”

Goldfischer says her family understands that her passion to help those in need is her life.

“It’s who I am, and it’s what I do,” she said. “I’ve always been self-sacrificing, and I don’t think there’s ever a greater feeling, knowing that you helped someone. And that’s why I’m here. I feel like a hero.”

20 Questions about organ, tissue donation, Iowa

Story and Photo by Nick Hytrek | Sioux City Journal

What's involved with an organ donor program? Nick Hytrek talked with Mary Ann O'Dell, RN, donation services specialist at Mercy Medical Center, to find out.


1. What does you job include?

I do hospital development. I cover 23 hospitals in Northwest Iowa and I provide education in donation. We also do record reviews because we're all tied in to Medicare and Medicaid.

2. You encourage people to sign up to be organ and tissue donors?

I do donor awareness, of course, but my role probably isn't as big as our PR staff. I do presentations.

3. How well is the public aware of what they need to do to become a donor?

I don't feel the public is very well-informed. Most of us go to the DMV and get our license and they ask if you're willing to be a donor and you answer it yes or no. I don't think they really understand what they're signing up for. I think we need to do more education.

4. What surprises people the most when you talk to them about organ donation?

I think the amount of people that can be helped through the gift of organ and tissue donation. One organ donor can save up to eight lives and one tissue donor can save or positively impact the lives of 50 to 60 people.

5. What are the most common myths or misconceptions people have about organ donation?

The one probably is that you can recover from brain death and that organs are still being sold to people who can afford them.

6. Are men or women more likely to be a donor?

It seems studies indicate women are more likely to donate than men.

7. What's the most common donation people agree to?

Organ donation is usually easier for people to comprehend than tissue donation. You know right up front lives will be saved, whereas with tissue donation you don't always see results right away.

8. Any guess on the percentage of people who are donors?

We know that in Iowa, approximately two-thirds of residents who are eligible have signed up through the DMV to be donors. Right now there are 1.4 million Iowans who have signed up.

9. How many people would need to be signed up to meet the need?

Right now there are 111,000 people in the United States waiting for donations. In Iowa there are 630 people waiting for organs. Every year in the United States there are 1.5 million procedures done that require tissue grafts. There are millions of people who suffer from corneal blindness who could benefit from corneal transplants.

10. How big a need is there for organ donation?

Every day, 18 people die waiting for an organ transplant across the United States. Annually, around 25,000 organs are recovered for transplant.

11. What conditions would prevent someone from being a donor?

Some things right up front like if you're being treated for active cancer, but you still may be able to donate corneas. Basically every case is looked at on an individual basis.

12. Do you meet with families of accident victims in the hospital to talk to them about possibly donating?

I do meet with the families here.

13. How difficult is it to meet with someone in that situation?

It is the toughest, saddest, most horrible time in their lives. It is a privilege to meet with these people and provide them with this information.

14. How do you approach them?

I go up and let them know I am here to talk to them about donation. By the time I meet with them, they know their loved one has died. I tell them that they have the possibility of helping save the lives of many people and that I am there to help them with the process if this is something they choose to go forward with.

15. What kinds of reactions do you get?

The reactions can be from families who will approach the hospital staff and let them know they know about organ donation to others who say that under no circumstances would they consider it.

16. Have any families ever gotten hostile with you?

Yes.

17. What percentage of families you meet with in those situations agree to donate their loved one's organs?

At Mercy last year, three-fourths of the families in this situation did agree to go forward with donation.

18. Do you ever get to witness meetings between organ recipients and the donor's family?

I've not actually see reunions, but I have had the pleasure of meeting several recipients, and the gratitude they express for their donors is unbelievable.

19. What's that like for you to meet these people?

It is probably the most humbling experience in your life to know their life may have been saved because of something you may have done.

20. How can one become an organ donor?

You can sign up when you renew your driver's license. You can go to the website, www.iowadonorregistry.org and you can literally sign up for everything there. You can also go to www.iowadonornetwork.org or you can send in a brochure.

District authorities set up helpline to promote organ donation - India

Source: Indian Express News

To spread awareness on the benefits of organ donation, the District Administration in association with Sewa-Sehyog — a federation of NGOs— has set up an eye and organ donation helpline booth at the Suvidha Centre in the District Courts complex. Deputy Commissioner Rahul Tiwari inaugurated the project on Tuesday.

Addressing the gathering Tiwari said people in our society had accepted blood donation but organ donation was a cause which required greater awareness. Since a large number of people visit the Suvidha Centre every day it is an ideal venue to spread the message, he said. “The volunteers of Sewa Sehyog will be present at this booth on all working days to educate the public about different aspects of organ donation. Printed material will also be made available at the booth” said the president of Sewa Sehyog, Nilam Kapoor.

Dr B S Aulakh and Project Co-ordinator Ranjodh Singh said organs from a single donor can save or help as many as 50 people. “Human-to-human transplantation of organs has been accepted by doctors worldwide as the best line of treatment and often the only one. Organ transplantation has been one of the greatest advances of modern science that has resulted in many patients getting a renewed lease of life. A living person can donate organs, after natural death or after 'brain death'. After natural death only a few tissues can be donated (like cornea, bone, skin and blood vessels) whereas after brain death almost 37 different organs and tissues can be donated including critical organs such as kidneys, heart, liver and lungs,”said Dr Aulakh.

Exam delight for Temperley pupil despite kidney transplant blow, UK

by Matthew Davis | Manchester Evening News


A star pupil is back on the transplant waiting list after a kidney donated by his dad had to be removed.

Edward Lobley went into school to pick up his exam results despite the potentially fatal ordeal.

The 16-year-old underwent the transplant at Royal Manchester Children’s Hospital on July 14 after his father David donated the organ.

But 10 days later the kidney had to be removed when Edward suffered internal bleeding.

His mum, Sarah Robinson, 37, who lives with Edward in Timperley said: "He would have died had he not been hospital.

"His blood pressure plummeted in the middle of the night and doctors discovered he had an internal bleed. To get to the bleed they had to take the kidney out.

"He should be on the road to recovery, but we are now in a worse position than before."

Edward, a pupil at Wellington School, gained five As and seven Bs in his GCSEs and was set to start sixth form next week but is now in hospital undergoing dialysis.

He said: "I am happy with my results, they could have been worse after what has happened. It was difficult to keep my mind on my exams when all I could think about was the transplant."

Dad David, 46, who lives in Hyde, said he hoped the transplant would have allowed his son to live a normal life. He said: "You don’t even think about it, it is your son and I said yes to donating straight away.

"It was a bit of a shock that it failed, it feels like we have gone back to square one.

"I feel bad, after the past three years I hoped the transplant would be the end of it and he could start sixth form and not let this get in his way.

"The last thing we wanted was this crucial time in his education to be disrupted."

Edward was diagnosed with chronic kidney failure four years ago.

His condition deteriorated in April and he was put on dialysis at home three times a day, seven days a week, during his exams in the run-up to his transplant.

Mum Sarah added: "I am really proud of him, he has to put up with a lot compared to other kids and his condition makes him very tired"

Ryan excels at Games, UK

Source: Marpeth Herald



A PONTELAND teenager was successful at a national sporting event after a family member gave him a new lease of life.

Ryan Dobinson was very poorly as one of his kidneys was on the verge of failing and so his mother – Gill Childs – agreed to donate one of hers last November, with the operation taking place at the RVI in Newcastle.

The 16-year-old made an excellent recovery and earlier this month he took part in the British Transplant Games in Belfast.

He competed in four events – archery, table tennis, fishing and ball throw – and won silver medals in archery and fishing.

Gill said: “Ryan was on the organ donor waiting list for five months and his was a rare tissue match which meant he could have had to wait a lot longer, so I decided to give him one of my kidneys.

“The RVI always takes a team to the Games and as Ryan had made a remarkable recovery, he was asked to take part.

“I’m so proud of how well he did, especially in archery as he had only done it a couple of times before the event. He goes fishing regularly with his granddad and has started to do a bit of sea fishing.”

Ryan benefited from the Children’s Kidney Fund during his stay in hospital and it was chosen by staff at Sainsbury’s Ponteland as its charity of the year after it received a number of nominations.

So in order to collect funds for it and the trip, Gill, Ryan and other members of the charity held a bag pack at the store which raised £70.

Ashford boy gets mum's kidney in new procedure, UK

By Jack Maidment


AN ASHFORD boy who desperately needed a kidney transplant in order to avoid going on dialysis was saved thanks to a groundbreaking medical procedure and the love of his mother.

Nine-year-old Nabeel Nanuck had been waiting on an organ donor list for more than two years when his parents, Bibi and Noor, were told they might be able to give him one of their kidneys.

A brand new and innovative transplant operation makes it possible for adults to donate organs to children who have a different blood type.

Previously the donor and the recipient had to have the same blood type for the transplant to work.

Nabeel was born with chronic renal failure, a condition which means dialysis is the only option if an organ donor cannot be found.

Mr Nanuck, 35, said: "When Nabeel went on the transplant list in 2008 we wanted to donate but because we are different blood groups we couldn't. You had to be compatible.

"The medical procedure changed quite recently this year which meant that we could donate.

"When we got the news that we could donate it was a big relief in terms of not having to wait any longer, otherwise he would have had to go on dialysis and he couldn't wait any longer.

"At the same time there was anxiety because it was a new procedure. It was the first time the hospital had done the procedure with this team."

Following a host of tests, Mrs Nanuck, also 35, was judged to be the best match for Nabeel and the successful transplant operation took place at the Evelina Children's Hospital in Central London earlier this year.

She said: "It was something new. When we knew we would be able to donate we were obviously excited and then we had a series of tests to do, but at least there was that action.

"[While he was] waiting on the transplant list, nothing was happening and we didn't want Nabeel to be on dialysis.

"I was relieved and happy to be able to donate a kidney to Nabeel," Mrs Nanuck added.

Just six days after the operation, Nabeel was able to return to some sort of normality and attend the hospital's school.

His mother spent a week in hospital before going home to carry on resting, and the family then welcomed Nabeel home for good two months later.

Mr Nanuck said: "Now we are enjoying a better quality of life, especially Nabeel.

"We go swimming on a Sunday and we wouldn't have been able to do that [if he had gone on dialysis]."

Tuesday, August 30, 2011

Ohio State University Medical Center Dr. Amer Rayab focuses on islet cell transplantation

Source: Ohio State University Medical Center

video
INSIDE THIS LABORATORY AT THE OHIO STATE UNIVERSITY MEDICAL CENTER... A COMPLICATED RESEARCH PROJECT IS UNDERWAY. DOCTOR AMER RAJAB IS A TRANSPLANT SURGEON, WHO SPECIALIZES IN THE STUDY OF THE PANCREAS. AND RIGHT NOW, HIS FOCUS IS ON ONE PARTICULAR PORTION OF THE PANCREAS...KNOWN AS THE ISLET (EYE-let) CELLS.

only 2-3 percent from the whole pancreas is called islet cells. those islet cells make the hormones and insulin that control our sugar.
so when you have diabetes, pancreas that makes enzymes (for digestion) only 2-3 percent stop working.

IN EXTREME CASES, WHEN A PATIENT SUFFERS LIFE-THREATENING HYPOGLYCEMIC EPISODES, AND IS UNABLE TO REGULATE THEIR BLOOD SUGARS, A PANCREAS TRANSPLANT COULD BE AN OPTION.

currently the most successful treatment is the whole pancreas transplantation. Ohio State is one of the top few centers in the world doing this procedure but it is a complicated operation. few qualify for the procedure"

SO NOW THE QUESTION IS... CAN WE JUMP-START THE PORTION OF THE PANCREAS THAT HAS STOPPED PRODUCING INSULIN? DR. RAJAB BELIEVES THE ANSWER LIES IN THE EXTRACTION AND TRANSPLANTATION OF ISLET CELLS... INSTEAD OF THE ENTIRE PANCREAS. HE AND HIS TEAM CAN EXTRACT THE ISLETS FROM THE PANCREAS OF A DECEASED ORGAN DONOR. THE ISLETS ARE THEN PURIFIED AND PROCESSED. THE THEORY IS THAT ONCE IMPLANTED DIRECTLY INTO THE recipient's Liver, THE CELLS CAN BEGIN TO MAKE AND RELEASE INSULIN.

we don't have to do anything...just infuse the islet cells laporoscopically

RECOVERY TIME WOULD BE DRAMATICALLY EASIER THAN THE MAJOR SURGERY OF A PANCREAS TRANSPLANT. HOWEVER, RIGHT NOW THIS PROCEDURE IS STILL CONSIDERED RESEARCH... OSU DOES HAVE A FEW PATIENTS ON THE WAITING LIST FOR THE ISLET TRANSPLANT, WHILE THE DOCTORS WAIT FOR appropriate DONORS

there's two major issues...as we mentioned, the supply of islet. we are depending of the generosity of a human being, we are still using a deceased donor organ.

THE OTHER MAJOR ISSUE... THE TIME AND EFFORT TO CONDUCT THIS RESEARCH IS EXTREMELY EXPENSIVE.

it's clinical research so not covered by insurance. Ohio state because they are so serious and so committed to science and for their patients, they are the one who put the grant, the money, to cover the whole procedure, which is so expensive.
all ohio state leadership put the money grant for me to proceed. they are getting nothing back except patient care and excellent science. which is very significant.

NO ONE KNOWS HOW LONG IT WILL TAKE TO MOVE THIS PROCEDURE FROM THE RESEARCH PHASE TO A ROUTINE TREATMENT. More than one MILLION PATIENTS WITH TYPE-1 DIABETES ARE HOPING DR. RAJAB AND HIS TEAM CAN HELP MAKE THAT A REALITY.

Organ donor’s selfless act wins her the grand prize in Mercedes contest, Malaysia

Source: The Star

A NOBLE cause becomes a reality, a family passion kindled in a young heart and a daughter voices admiration for her father’s road to success — these were the top three photo stories that captured the judges’ hearts in a recent contest organised by Mercedes-Benz Malaysia in conjunction with its 125! Years of Innovation celebrations.

Grand prize winner Chew Hoong Ling, shared her experience of donating part of her liver to a hepatoblastoma patient. Her reward, besides a great feeling of joy at being able to share something so near and dear, is a Mercedes-scar on her belly.

Inspired by an article written by monks entitled “The Joy of Giving” in a booklet called Life’s Great Gifts, the 31-year-old professional emcee, moderator and motivational speaker has been a passionate advocate of organ donation since the tender age of 13.

When a 13-year-old girl was in need of a transplant, Chew knew it was time to walk the talk but never imagined she would permanently carry her dream car’s distinguished three-point star so close to her.

“I never knew of the ‘Mercedes-scar’ until the doctors briefed me prior to my surgery and I expected a C-Class sized scar judging by what the doctor drew in the air. But it turned out to be a 14-inch S-Class one instead!”

“It was quite an experience, as I had the opportunity to undergo something that I have been extremely passionate about and in the process gain a unique and pleasant reminder of my deed,” she said.

Chew walked away with a three days two nights vacation package to Club Med Cherating and will have the luxury of driving to her destination in her favourite Mercedes-Benz, the C-Class. She also received a limited edition Mercedes-Benz model car.

The entire Mercedes-Benz Malaysia photo-story contest which ran for nine weeks from May to July was conducted via Facebook. It invited owners and enthusiasts to share their special moments and experiences affiliated with the brand.

Nostalgia ruled the day for second prize winner, 37-year-old Alvin Chia Oon Wah, as he reminisced about the first time he drove a Mercedes-Benz.

He recalled how, as a 17-year-old, he was not able to move his uncle’s classic Mercedes-Benz for half-an-hour trying to negotiate the manual-transmission.

“The thing that struck me most was the superb quality and the solid build of Mercedes-Benz cars. While my passion is inspired by my family, I have had the opportunity to experience it first-hand and discover its amazing qualities,” he said.

Chia bought his first Mercedes-Benz, a Cosworth 2.3-16, more than ten years ago and has enjoyed every minute of it.

Having lost everything including his beloved first Mercedes-Benz W123 purchased in 1978, Yong Kim Nyam put his heart and soul in his work to revive his business to get it all back.

He, like many others, considered the Mercedes-Benz a symbol of success and achievement, and his road to success would not be complete without one.

Five different E-Class models later, Yong still holds the brand in high esteem. But it was his daughter, Yong Siow Mei’s, 30, moving recount of her father’s story that claimed third prize.

“He has worked hard each step of the way and every Mercedes-Benz owned is a true reflection of his hard work paying off,” said the younger Yong in full admiration for her father.

The three received their prizes from Mercedes-Benz Malaysia vice-president for sales and marketing Kai Schlickum, who credited customers and enthusiasts for the company’s success. Five consolation prize winners bagged a Mercedes-Benz model car each.

Tulsa World participating in the "Circle of Life" Campaign


Circle of Life
Circle of Life logo
In an effort to honor those who have donated either organs, eyes or tissue, the Tulsa World is participating in the "Circle of Life" campaign sponsored by the Global Organization for Organ Donation (GOOD).

If your loved one was a donor, please inform the funeral director if you would like to have the "Circle of Life" logo placed in his or her listing.

Brain dead person’s kidney to be transplanted to needy people, Nepal

Source: Nepal Mountain News


Bir Hospital, the country’s oldest hospital, is all set to use kidneys of clinically dead (brain dead) patients to transplant it to needy patients.
Speaking at a programme Tuesday, Dr Pukar Chandra Shrestha, chief, Kidney Transplant Unit (KTU), Bir Hospital, said due to lack of kidney donors, kidney transplantation was not possible for many kidney failure patients.

He stated around 100 people have brain death every year, from which they can get 200 kidneys to transplant it on patients with kidney failure.

The hospital has recently established a desk to fill form for organ donation in KTU. He said, “It is estimated that there are three million patients with kidney failure in Nepal. Only 10 per cent of patients with kidney failure have access to dialysis — temporary treatment for removing waste and excess water from the blood of a patient with acute disturbance in kidney functioning.”

He stated that since dialysis was costly and there was risk of transferring communicable diseases such HIV/AIDS, Hepatitis B and others while using dialysis machine, kidney transplant was a reliable life saving option for patients with chronic kidney malfunction.

Dr Shrestha said Bir Hospital and Tribhuvan University Teaching Hospital (TUTH) began kidney transplantation in 2004 and 2008 respectively. Till date, 63 kidney-failure patients have had successful kidney transplant from Bir Hospital.

He also charged the government of not having flexible policies for kidney donors.

New Continuing Education (CE) Course on Transplant Available at HealthForumOnline for Health Professionals

HealthForumOnline (HFO) announces a new online continuing education (CE/CEU) course entitled Solid Organ Transplant - A Biopsychosocial Perspective to their inventory of nationally-approved CE/CEU courses for psychologists, social workers, counselors, and nurses. In recent years the number of solid organ transplants has risen by an estimated 30%. As transplant medicine advances and becomes more available for individuals with organ disease, more patients, families, and potential donors will be presented with complex and voluminous health-related information to digest and behavioral challenges to confront as they move along the transplant continuum. The biopsychosocial implications of solid organ transplant are significant and require careful consideration by an integrated healthcare team in caring for patients both pre- and post-transplant. This course presents an overview of the transplant experience from a biopsychosocial perspective across this continuum. The role of the mental health professional as a central part of the integrated healthcare team is emphasized. Relevant theory- and evidence-based research on coping and adjustment post-transplant are presented. HFO’s over 75 online CE/CEU courses are fast, convenient and cost-effective with free ongoing access to course updates.



Quote startThe psychological needs and emotional experience of the transplant must be attended to across the transplant care continuum – from donation through post-transplant survivorship.Quote end
Philadelphia, PA (PRWEB) August 30, 2011
HealthForumOnline (HFO), a nationally-approved (APA, ASWB, NBCC, PSNA, CA-BBS) provider of online continuing education (CE) for psychologists, social workers, counselors, nurses and other allied healthcare professionals announces the addition of a new online CE/CEU course, Solid Organ Transplant - A Biopsychosocial Perspective to their extensive online CE resource library.

In the past fifteen years the overall number of solid organ transplants has risen by an estimated 30%. Despite these advances, there is a paucity of available organs and a set of complex decisions surrounding organ donation. The transplant experience includes three distinct phases – pre-transplant, waiting-candidacy and post-transplant. Medical assessment and diagnostic testing generally define the pre-transplant phase as patients become increasingly disabled by organ failure. During the pre-transplant phase illness becomes increasingly real and intense negative feelings about illness and the transplant process arise and compete for a hope for a return of normalcy and a healthy future. The waiting-candidacy phase is the period of time when an individual has been accepted into a transplant program and is actively waiting for an organ to become available. This phase can last indefinitely and is generally defined by declining health and uncertainty; maintaining hope and possibility for a post-transplant life in the midst of the stark reality of illness and death represents a central focus of this phase. The post transplant phase is characterized by significant physical and emotional shifts, as well as challenges related to psychological well-being. While quality of life as it relates to physical function, activities of daily living and social function is statistically improved following transplant, the same is not necessarily true for psychological function; with evidence of depression, anxiety, low self-esteem, limited social function and occupational choice common post-transplant themes. Additionally, individuals must adhere to a rigorous, life-long medical regimen including potentially toxic immunosuppressant medications and physical rehabilitation. Unfortunately, the biological aspects transplant can override the consideration of the patient’s internal experience.

The psychological needs and emotional experience of the transplant must be attended to across the transplant care continuum – from donation through post-transplant survivorship. The biopsychosocial implications of solid organ transplant are significant and require careful consideration by an integrated healthcare team in caring for patients both pre- and post-transplant. Further, as transplant medicine advances and becomes more available, more patients, families, and potential donors will be presented with increasingly complex and voluminous health-related information to digest and behavioral challenges to confront as they move along the transplant continuum. This online CE course will present an overview of the transplant experience with an emphasis on the role of the mental health professional as a central part of the integrated healthcare team. Relevant theory- and evidence-based research on enhancing coping and adjustment across the transplant process will be presented.

Psychologists, social workers, counselors, nurses and other allied health professionals can chose from HFO’s 20 categories of continuing education (CE) topics related to health psychology and behavioral medicine (i.e., ethics, cancer adaptation, women’s health, cultural diversity, eating disorders, reproduction/sexuality, aging/gerontology, pediatric behavioral medicine, assessment, chemical dependency, chronic/acute illness, clinical intervention, group therapy, infectious disease, long-term care, neuropsychology, pain management, spirituality, LGBT issues) containing more than 70 online CE courses that are fast, convenient and cost-effective. All HFO CE courses and supporting materials are available online or as downloadable, transportable PDFs. Participants print their own CE certificates. Lastly, HFO routinely updates our online CE courses and enables customers to review these updates for free even after they have completed the CE activity and generated their CE certificate.

For more information on this course or a complete listing of titles in our online CE resource library, visit HealthForumOnline.com.

About HealthForumOnline:

HealthForumOnline (HFO) is approved as a provider of CE courses by the American Psychological Association, the National Board of Certified Counselors, the Association of Social Work Boards, and several state professional organizations, including the Pennsylvania State Nurses Association, an accredited approver by the American Nurses Credentialing Center’s Commission on Accreditation, and the California Board of Behavioral Sciences. HFO’s CE Program’s Advisory Committee and authors are comprised of over 60 nationally-recognized experts in behavioral medicine.

It’s time we all signed the organ donor register, UK

by Lisa Salmon, Evening Chronicle

As shocking new organ donor statistics are released, Lisa Salmon reports on why so few people are signing up to save lives

IF you have never got around to joining the Organ Donor Register, do it now and help stop three people a day dying as they wait for a transplant, say organ donor specialists.

While 90% of Britons are in favour of organ donation, only 29% of them are actually on the register, according to a recent survey from UK Transplant, meaning a huge shortage of donor organs.

There are currently around 8,000 people in need of a transplant, yet last year only 1,000 people donated organs after death, allowing 2,700 organ transplants to take place.

Officials believe the massive disparity between people’s support for organ donation and them actually joining the register is largely due to them simply never finding the opportunity to sign up.

The Government has tried to address this life-threatening procrastination this month, by forcing all driving licence applicants who apply through the Driver and Vehicle Licensing Agency (DVLA) website to state whether they want to donate their organs in the event of their death.

The organ donation question on the DVLA form was previously non-compulsory, although it still prompted many registrations: of the one million new organ donor registrations every year, half came through the DVLA.

It’s hoped that making the question compulsory will double the percentage of people choosing to join the organ donation register when applying for a driving license.

Transplant surgeon Prof Peter Friend, director of the Oxford Transplant Centre, thinks it’s a great idea.

He said: “This brings it to people’s attention and I think that’s all we need.

“It’s clear that the majority of the population is in favour of organ donation and transplantation – but most people just don’t get round to it.

“People need to stop for a second and think, ‘It could be me or my family that need a transplant’.”

In June, NHS Blood & Transplant (NHSBT) figures showed that a record 18 million people are now on the NHS Organ Donor Register.

However, the figure needs to be much higher, says the NHSBT, as just being on the register doesn’t necessarily mean you’ll be able to donate your organs when you die.

This is because organs, particularly hearts and lungs, deteriorate rapidly without an oxygen supply and then can’t be used for transplantation.

As a result, most organ donations come from people who’ve died while on a ventilator in an intensive care unit, as the ventilator can keep blood and oxygen circulating after death.

Improvements in road safety and medical intervention also mean fewer organs are being donated from road accident and brain haemorrhage patients.

Conversely, the number of people needing a transplant is expected to rise steeply over the next decade, due to an ageing population, an increase in kidney failure – sometimes caused by adult-onset diabetes – and scientific advances resulting in more people being suitable for transplants.

In fact, the NHSBT released figures last month showing that despite the bigger pool of potential donors, patients face increasingly long delays, with the average wait for a new heart rising almost 70% over three years up to 2009, and the average wait for a new kidney rising 20%.

The surgeon describes the success of organ transplantation as spectacular.

But he warns: “There are almost 8,000 patients waiting, and a substantial proportion of them won’t live long enough to receive a transplant.

“This is one thing we can all do that costs nothing and will transform the lives of so many others.

“A lot of people can benefit a great deal from just one donor’s organs.

“Anyone who would wish for transplantation for themselves or a member of their family should think about registering as a donor too.”

Prof Friend says it’s hugely frustrating that patients have to wait for transplants, and the wait can be very risky.

“Many of them are living difficult, fragile lives and aren’t sure if they’ll live long enough to receive a transplant,” he explained. “The majority of transplants are successful. It’s totally life-transforming, and patients live normal lives afterwards.

“I’ve done a lot of surgery outside transplantation, and it’s the most transforming surgery you can do.”

Potential donors are urged to speak to their family before signing up to the register.

Trish Collins, an NHSBT specialist organ donation nurse, said: “In my experience, when families are faced with the question about whether their loved one’s organs are to be donated, if they don’t know what the person wanted, it makes it very difficult.

“Some families will say yes to donation because they want something positive to come out of something so tragic, knowing that anything from two to eight people’s lives could be saved by donating their loved one’s organs."

Man Walking Across Country To Give Transplant Patients A Second Chance

Kendra Potter | KKTV, CBS, Colorado


An adventurous newspaper editor from California is walking 3,300 miles across the country, in hopes of giving others a second chance to dream.

An adventurous newspaper editor from California is walking 3,300 miles across the country, in hopes of giving others a second chance to dream.

Mike Tittinger walked through Pueblo Monday on his coast-to-coast trek that will benefit transplant patients and their families. His long journey began on June 18th at Fisherman’s Wharf in San Francisco and will end in Ocean City, New Jersey, which is his wife’s final resting place.

Tittinger says going about three miles an hour, walking nearly 20 miles each day, he expects his journey to last about six months.

His cause is what gives his motivation to take each step. It’s one that is dear to his heart. Ten years ago, his young wife Deanna died after a failed heart transplant. Not only does he put on foot in front of the other in her memory, but also in support of patients and their families who endure the same trials.

By trekking across the United States, he hopes to raise awareness about organ donation. Tittinger says walking down Highway 50 in Pueblo reminded him of a saying, “One organ donor can save eight lives and can change 50."

But his main goal is to raise money for a scholarship fund he created in his wife’s memory. He hopes it will not only help patients across the U.S., but also their families.

“A transplant really affects the whole family, everyone around the person having the transplant; everyone puts their lives on hold. So I hope the scholarships will give them a second chance to live, which is a second chance to dream,” said Tittinger.

He adds, “So if they get to the point where they can pursue the goals that they put off then I want to be there to help them do that.”

Tittinger’s non-profit organization is called “The Onny and Oboe Scholarship Fund”. It’s named after the twin imaginary friends his wife had as a child. They kept her company when she was sick. At age 10, she was diagnosed with cardiomyopathy, a congenital enlargement of the heart. She was not expected to live past her teens, but surpassed doctor’s expectations and married Tittinger at 27.

“Something in me, I just felt I needed to do something. I always wanted to go back and do something to help similar people with conditions like that. It’s ten years, I turned 40, and it was just like all the signs pointed to go,” said Tittinger.

Tittinger plans to award the scholarship annually to those who persevere with resilience and optimism, overcoming great odds. He hopes to raise $25,000, in order to make it nationally endowed. Tittinger says walking coast to coast seemed like the perfect way to further the cause.

“Walking kind of symbolizes a heart patient’s road to recovery. It’s just day in, day out, it’s a long journey. It’s gonna take me six months, so I just saw that as symbolic of a patient’s road to recovery. They can only do their best each day, and not get ahead of themselves, it’s a long process. That’s why I chose to walk,” said Tittinger.

He told 11 News that many people along his journey have been very helpful and have reached out to help with the cause, whether by donating, or offering him a place to stay.

He says the hardest part is not the physical aspect, but the mental one. He says eight hours of walking a day can be wearing not only your body, but your mind. It’s something bringing him new perspective on life, teaching him to be present in the day and to always stay focused on the positives.

But Tittinger did not start this journey alone. He is now happily remarried and his second wife Brooke walked with him for a few weeks, along with other family members. Tittinger says Brooke has been his motivator, helping him create the scholarship fund and go on this long journey.

Tittinger says this emotional journey is one he sees as a “celebration, not a memorial.”

If you would like to follow his journey, or donate to his cause, visit www.mikeywalks.com.

Tittinger says all donations to the fund go 100 percent towards patients and their families and are tax deductible.

Hanover Township man says life is ‘phenomenal’ after double lung transplant

Source: CF Worldwide Blog


Jim Fahr’s breaking point involved a six-pack of Ensure protein drinks.
The then-39-year-old Hanover Township resident had resolved that he wouldn’t live much longer without the benefit of a double lung transplant. He had been fighting cystic fibrosis for almost four decades and he had already surpassed the average lifespan of 37 for someone with the disease.
“I figured I had a good run,” Faher said of the disease that deteriorates the lungs and digestive system. “Do you really want to go through the pain and suffering for something you’re not sure will work?”
Then one day in May 2009, Fahr returned home after buying a six-pack of Ensure. On the short walk from his driveway to the back door, he had to stop and rest and barely made it into the house.
That’s when Fahr realized he didn’t want to die that way.
“That’s when I said, ‘Yeah, we’re going for it,’” he said. “My quality of life was zero at that point.”
That month, he started the long process of getting on a donor list for a double lung transplant. You must be sick enough to need the transplant but well enough that the lungs wouldn’t be wasted. The recipient must be able to afford both the surgery and the continued heavy drug regimen so the body won’t reject the foreign lungs.
In December 2009, doctors told Fahr he fit the criteria. But doctors also informed him of a setback — Fahr learned he had AB-positive blood, one of the rarest. He was advised to place his name on multiple regional lung transplant lists.
Fahr first registered in Philadelphia, where he had been going to the University of Pennsylvania hospital for consultation. Fahr was planning to join a list in the New York region, as well, when he received a call May 19, 2010, that there was a matching set of lungs waiting for him in Philadelphia.
Fahr’s rare blood type — which he feared was a major obstacle — turned out to be a major advantage. It’s such a rare blood type that Fahr was on the top of the list for a transplant among people with AB-positive blood.
Surgeons performed the transplant May 20, 2010, and Fahr and his wife, Denise, celebrate its success the 20th of every month. Recovery was extremely difficult at first — Fahr said he could do little more than lie around for the first few months — but his quality of life has miraculously improved since the transplant.
His lung capacity, which had dropped to 23 percent, increased to 80 percent, a level he hadn’t been at since he was 13. Even minimal physical activity used to exhaust him.
An avid baseball fan, Fahr loves attending New York Yankees and Philadelphia Phillies games and the Fahrs enjoy Musikfest. He was physically unable to attend a single baseball game in 2009 or 2010, and the couple’s trips to Musikfest were always brief.
Fahr managed to attend a few games this season, and he out-walked Denise during this summer’s annual music festival.
“I have a new husband,” Denise Fahr said.
It’s fairly rare for a person with cystic fibrosis to undergo a double lung transplant, according to Mary Ann Sofronie, development director for the Northeastern Pennsylvania Chapter of the Cystic Fibrosis Foundation. In the chapter’s 15-county region, Fahr is the only person the foundation staff knows who has had one, she said.
“Not that many people have lived that long to have a double lung transplant or you’re on the waiting list for so long,” Sofronie said.
The foundation will honor Fahr as one of its Finest Top 20 Under 40 this October. While the 41-year-old Fahr doesn’t technically meet the age requirement, the organization let him slide because he was too ill to be honored last year, Sofronie said.
The transplant has far from solved all of Fahr’s health problems, though. His main stomach nerve was damaged during his operation so he now has more digestive problems than before and his cystic fibrosis has caused major damage to his liver, pancreas and gallbladder, the latter of which doctors want to remove.
But Fahr says the net difference in his quality of life before and after the transplant is extraordinary.
Because he never knew how long he had to live, Fahr said, he always worked extremely hard at his goals. A former bodybuilding champion, Fahr has returned to lifting weights and to his job at Air Products, where his aim is to become an executive.
Active in local political campaigns, Fahr says he’s also considering running for office.
“Life now is phenomenal,” he said.
Jim Fahr needs to raise a $1,500 donation as part of his Finest Top 20 Under 40 honor from the Northeastern Pennsylvania Chapter of the Cystic Fibrosis Foundation. He’s hosting a fundraising motorcycle and car poker run Oct. 23 beginning and ending at SteelStacks in Bethlehem. For information, visit steelhorsepokerrun.com.