Liver transplant recipient celebrates 10 years of healthy living

July 27, 2012

Ten years ago, Edward Rosenbaum had a near-death experience when doctors told him he had only about 48 hours to live. Today, Rosenbaum shares his story with others who soon may be in the same condition.

Rosenbaum, a liver transplant mentor at Washington University and Barnes-Jewish Hospital Transplant Center, will celebrate a milestone anniversary as a liver transplant recipient.

Now 66, Rosenbaum has been a liver transplant mentor for the Transplant Mentor Program for nine years. He also represents liver patients as a member of the mentor steering committee.

 

The mentor program matches candidates for liver, kidney, lung or heart transplants with patients who have already undergone transplants. Mentors walk patients through the transplant experience, answering questions, providing reassurance and serving as a tangible example of the success of organ transplants.

After being diagnosed with primary biliary cirrhosis, Rosenbaum suffered with few effects for years. Then, in his early 50s, his liver began to fail and his health deteriorated. He was referred to the liver disease program, where he was put on the waiting list for a donor organ.

“I was basically going to die in the hospital,” says Rosenbaum. “But thankfully, while I was in the hospital, my wife received a call that changed everything. Doctors said I only had about 48 hours to live, so the call regarding a liver was right on time.”

He received his transplant in April 2002. 

Once he received a healthy liver, Rosenbaum made a quick recovery.  He was released from the hospital about a week after the transplant and returned to work as a plant engineer for a plastics company a few months later.

Now Rosenbaum spends his time mentoring liver transplant patients in hopes of easing their fear or concerns.

“I felt I needed to give back to society and the hospital for all I was given,” says Rosenbaum. “I also involve my wife as a resource for the caretakers. Caretakers are as involved physically and emotionally as the person having the transplant.”

When Rosenbaum is not mentoring patients, he enjoys outdoor activities, such as bird hunting, training bird dogs and teaching hunter education.

“I’m enjoying life and I can pretty much do anything I want now,” he says. “I have no limitations for being 66 years old.”

For more, read this story in the St. Louis Post-Dispatch from Harry Jackson.


From Friendship to Transplant

June 22, 2012

On June 19, Jami Loftin and Brandi Basinger arrived ready and in matching night gowns for their kidney transplant at the Washington University and Barnes-Jewish Hospital Transplant Center. Jami and Brandi were featured on our blog in May after finding out Brandi was a match for her friend Jami. For the two friends from Springfield, MO who met in a bootcamp class, the wait was finally over.

The kidney transplant procedure began Tuesday morning. Brandi’s donor kidney was removed by Maria B. Doyle, MD with a procedure called laparoscopic kidney removal, in which the surgeon makes three or four one-inch “ports” in the donor’s abdomen to remove the kidney with surgical instrument assistance.

In an interview with KOZL’s Melissa Stern, Dr. Doyle explained, “The living donors who are heroic enough to donate one of their organs, are carefully checked for all spectrum of disease and we would only remove a kidney from somebody who’s healthy and who we think will have a long life managing with one kidney.

After Brandi’s successful kidney removal, Jami’s transplant procedure was performed by Surenda Shenoy, MD. Jami was born with only one kidney that started to fail several years ago, which is when she began dialysis. Her strength and perseverance got her through to transplant.

The story was featured by their local TV station, KOZL, which has been following the story since the testing process began. Their transplant is featured in a two-part series, highlighting their journey to transplant and then the day of surgery.

The Washington University and Barnes-Jewish Hospital Transplant Center averages more than 200 kidney transplants annually. Learn more about our Kidney Transplant Program and the options for Living Donor Transplants.


Love our nurses? Tell BJC about it

May 9, 2012

At Barnes-Jewish Hospital, we love our nurses. The Rare Gift has an especially warm place in our heart for transplant nurses – from operating room nurses to the ICU and floor nurses to the transplant coordinators.

This week is national Nurses Week and to honor nurses in the BJC HealthCare system, our sister website, MakeMedicineBetter.org, has a forum just for people to share stories about their favorite nurses. You can add a story at http://www.makemedicinebetter.org/discussions/nurses-week/.

In the meantime, read this comment that Pat Janssen, wife of a liver recipient, left about Barnes-Jewish transplant coordinator Jessica Wagner:

My husband was placed on the Liver Transplant list March of 2011, he was given a transplant coordinator, Jessica Wagner. Any concerns or questions we could contact her. “OMG” she has been a true gift from GOD to us.

All concerns & Anxieties, she has always been able to put to rest for us.
Any time we called her, if she was on another call within minutes she always
called us back.

My husband was in the hospital on 3 occasions as a back-up for the transplant.

After every discharge as the back-up patient, we would no sooner get home and Jessica was calling to talk to my husband to make sure he was OK due to not receiving the transplant. To settle his anxieties and to make sure his mental state was OK.

In July 2011, my husband got the transplant, there was never a day that she didn’t check on him at the hospital & check on me as his wife as well.
All the medications for rejection that he is on any questions or concerns, she always gets the answers for us ASAP.

This wonderful lady has become almost like a family member of ours. She always has A beautiful smile, no matter how tough her day has been. She is one of a kind, we are so grateful she was the one chosen to be our transplant coordinator. The aren’t words to express how easy she made our waiting & the anxieties associated with being on the transplant list.

If hospitals had more nurses like her, it certainly would make your stay almost a pleasure.

How many of us can say we look forward to Dr. Appts. We do because we know we are also going to see Jessica, hear that wonderful laugh of hers and see that beautiful smile.


And just for fun, check out this video of nurses across Barnes-Jewish doing a Nurses Week happy dance.


Research sheds light on heart transplant longevity

February 27, 2012

Nick Belfiglio was 55 when he had his heart transplant at Barnes Hospital. The hospital’s program had just started. Doctors hoped his transplant would buy Nick five more years of life. They undershot a little.

Twenty-six years later,  Nick is doing well. But don’t blame the doctors for underestimating, says Dr. Greg Ewald, medical director of heart transplant at Barnes-Jewish. At the time, the discipline of heart transplant didn’t have much of a track record and no one was really sure how long a transplanted heart would last.

Johns Hopkins Hospital published the results of a study in the March issue of the Journal of Thoracic Surgery hat takes a look at who’s the most likely to live at least 10 years after a heart transplant. Ironically, Nick doesn’t really fit the profile of a long-term survivor.

The study indicates that patients under age 55 at the time of transplant have a 24 percent better chance of living at least 10 years. Also, patients who have their procedure done at a center that performs at least nine or more transplants a year tend to do better.

Nick was 55 at the time of his transplant, and the program at Barnes was in its first year and hadn’t done nine transplants total at the time.

That points to a couple of conclusions: 1) the young Barnes Hospital heart transplant program had a very talented, skilled staff caring for its patients, 2) chronological age is not necessarily a predictor of how well a particular individual will do after transplant.

The Barnes, now Barnes-Jewish heart transplant program has done more than 600 heart transplants since Nick’s, with an average of about 30-35 per year. There’s no doubt that more experience in heart transplant translates into better outcomes and longer lives.

There’s also no doubt that we haven’t yet reached a limit in how long a transplanted heart can beat.

-Kathy Holleman


A final best of 2011 transplant at Barnes-Jewish Hospital

December 23, 2011

This is generally known as the “season of giving.” And I’ve been taught that if you receive a gift, you say “thank you.” So, on behalf of those of our team, I want to offer a heartfelt thank you to all of you who have taken the time to read our blog and support transplant.

Special thanks go to the staff of the Washington University/Barnes-Jewish transplant center who do the work of saving lives through transplant; our friends at Mid-America Transplant Services who make transplants possible; the wonderful recipients, family members and friends who have shared their stories with us.

Please keep the donors and donor families, the people who exemplify “giving,” in your hearts this season. One of our favorite stories in 2011 was about one of those donors:


Transplant coordinator Jean Bowe is pure gold

November 29, 2011

One of the most important relationships a transplant patient forms – at Barnes-

Jean Bowe with kidney donor Cindy Clouse

Jewish Hospital, at least – is with their transplant nurse coordinator. 

The transplant coordinator not only acts as a liaison between the patient and the medical team caring for them, but also educates the patient and their family about transplant, guides the patient through pre-transplant evaluation and post-transplant testing, but often arranges the logistics of the transplant itself.  It’s a hard job.

But Barnes-Jewish is lucky to have transplant coordinators who do that hard job very well, and often for a long time.

One of those is Jean Bowe, who has been a transplant coordinator for 20 of the 25 years she’s been a nurse. Jean, with colleague Jennifer Colletta, coordinates many of the living donor kidney transplants at Barnes-Jewish. She was also worked closely with transplant administration and Washington University transplant physicians in setting up the Barnes-Jewish paired kidney exchange program.

Recently, Jean was honored for her work at the Barnes-Jewish Employee Recognition Awards ceremony as one of the David A. Gee Meritorious Service Award winners. These winners are honored for going above and beyond their  job description. They’re nominated by their co-workers or managers, then vetted by a panel of administrators, managers and other employees.

Jean was nominated by Gene Ridolfi, transplant center director, who said in a video shown at the ceremony that Jean “exemplifies the kind of employee any manager or director would love to have.” More than that, he said, she is always open to improving herself so she can give her patients better care, and  “she is recognized nationally as a ‘go-to person’ in the field” of paired kidney exchange.

Ridolfi also thanked Jean for her commitment to the hospital, to transplant and to her patients.

At the ceremony, Jean and the other David A. Gee Award winners received gold-colored employee badges. These badges are kind of a big deal around Barnes-Jewish. Not only do you get a free parking spot in the garage (quite the perk on this campus), but people with gold badges have a certain cachet about them. They’re known as extraordinary performers.  They’re like the Seal Team 6 of the hospital.

Now, all of our transplant coordinators are special – you have to be to do the job. But if you run into Jean, just know that you’ve come across someone who’s pure gold.

 

 

 


BTW, I had a ♥ tx. LOL!

October 19, 2011

If you can read the headline on this post, you obviously know how to text, and you’re   probably a Gen Xer, or younger. If you’ve also had an organ transplant,  you’re in a select group.

As a group,  transplant patients tend to be older adults. For instance, in 2010, Washington University physicians at Barnes-Jewish Hospital performed  413 organ transplants, while  St. Louis Children’s Hospital performed 59.

It makes sense – adults get diseases or their organs are damaged or wear out for various reasons. Children don’t have the time for this to happen. Most transplants in children happen because of congenital problems (and most of these transplants are successful).

But what happens when a child who has a transplant grows  into an adult? Obviously, these patients have to transition to follow up care at an adult transplant center. That can be a rough transition, and we don’t just mean that you no longer get a SpongeBob sticker and a lollipop after a successful blood draw.

Transplant social workers at Barnes-Jewish are currently developing a program to help patients transition from care at a pediatric hospital to an adult transplant center. Their transplant mentor program includes several people who have already made the transition.

Also, there are blogs by people who have grown up with their transplant. One we found one by a young heart transplant patient, “@hearttxxx,” is funny and frank. It discusses topics such as telling your boyfriend/girlfriend where you got your scar, getting busted by a doctor for skipping your anti-rejection meds, bizarre questions about your transplant, and more.

For instance, here’s @hearttxxx on being growing up and taking meds:

Once you leave the children’s hospital, the hardest part about going to the adult hospital is that you have to be an adult. I think I got the heart of Peter Pan. I don’t want to grow up!

Now, I have to order my pills, pay for my pills, layout my daily pills and then finally take those pills. There’s no adult to tell you to do that because you’re the adult now. Sure, the pills keep us alive, but when you’re this healthy, it’s easy to take it for granted. Life just got so awesome that I often forget to be an adult about it and take my damn pills. Who’s to tell me that the chest pain I feel is something to worry about?  Who’s to remind me to put on sunscreen?

The adult. And now, I’m the adult. It’s gratifying, but it’s a lot of responsibility.

Here’s the link for “Life after Transplant.”

Tell us what useful and entertaining transplant blogs you’ve found.

-Kathryn Holleman


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