My Journey

By: Madhu Thibaudeau

When I was 13 years old, my mom got very sick and was in the hospital. After many days in the hospital, we found out she had a genetic disease that destroys kidney tissue function over time. The disease is called Polycystic Kidney Disease (PKD).  Our family took care of her as she underwent many tests, and a kidney transplant in 1984. Since then, my brother and I have watched our mom endure many hardships, including a second transplant (in 1992) that has lasted over 20 years (first one only lasted 8 years). My brother donated the second kidney to her, and it was at that point that I knew I would one day face the same fate she did.

Madhu and Roger Thibaudeau

Madhu and her husband, Roger, before her transplant and his donor surgery

I found out in my 20s that I had PKD as well. I researched about PKD and tried to live my life as best as I could, given the news. I took care of myself, ate a proper diet and exercised, knowing I would eventually need a transplant.

Fast forward to 2014, I had completed my transplant evaluation and was contacting friends and family for a living donor. In an unlikely place, a good friend’s husband wanted to get tested and we ending up matching a week before Christmas. What a gift!!

I had the transplant at the University of Maryland Medical Center in February 2015. We both recovered quickly and things seemed to go well, until I got a fever in mid-April. Only 2 ½ months after the transplant, what started out as a fever turned into my worst nightmare.

The new kidney wasn’t working and over 15 doctors were desperately trying to find out why this happened. It wasn’t rejection. After many tests and 2 weeks in the hospital, the only result was that the new kidney had developed microscopic blood clots that reduced blood flow.  No one at UMMC had ever seen this before, thus placing me in a very rare group of undiagnosed patients.

From April to August 2015, I was hospitalized 7 times. In that time, I had to start dialysis, have the donor kidney removed in June and had lots of other health issues that landed me in the ER. It was definitely stressful and depressing. My family was enduring along with me, and the worst was for my two teenage boys. Each time I was in the hospital, it would be for at least a week, and they had a hard time understanding why this was happening.

I will never forget August 5th, 2015. Dialysis equipment was being setup in my house, and my husband came home and told me promising news. He had signed up to be a Paired Donor in the University of Maryland Paired Kidney Exchange Program. Since he wasn’t a match for me, he would donate his kidney to someone, and I would get a kidney from someone that matched me. He told me he got a call about a kidney chain of 12 people and that we may fit into it. We both got additional testing done and waited to hear if this would work out. I tried not to get too invested because I knew many things could break the chain (if someone got sick, the chain could be cancelled) with multiple people involved.

Luck was with me because on August 26th, I got my second kidney transplant only 6 months after the first one. The second transplant involved removing my original kidneys, so it was a complex surgery.

Today I can happily report that I am doing great! Due to the first transplant complications, I am on the world’s most expensive drug, eculizumab, to prevent blood clots in the kidney. I receive an infusion twice a month for now to keep the kidney running smoothly. University of Maryland is conducting research and collecting information about this drug with me, in hopes of gaining knowledge if ever my situation arises with another patient.

Having endured the worst year of my life, I can honestly say I learned a lot about myself. I faced things that I never expected too, at times felt like giving up, and wasn’t sure it would all be OK. By having loving family and friends support me, I was able to make it through and have a deeper appreciation for life.

But I have to say, what impressed me most was the dedication of my doctors [at the University of Maryland Medical Center] who spent many long hours, weeks and months to help me each step of the way. I know I would not have been able to get through this without them. I’m specifically appreciative of Dr. Eugene Schweitzer, Dr. Matthew Weir and Dr. Beje Thomas, not to mention the fantastic nurses, technicians and hospital dialysis staff. They took care of me like I was part of their family. For that and so much more, I will be forever grateful. I would recommend to all who are in need of a transplant to visit University of Maryland.

I’ve learned that this disease doesn’t have to encompass my entire life. This is only a small part of who I am, and I won’t let this dictate the happiness I can find throughout my life. For those reading this, I hope this give you comfort and peace knowing that although this journey maybe long and arduous, it doesn’t have to feel like the end.  It’s just the beginning of great things to come.


 

To learn more about UMMC’s Transplant Center and the Paired Kidney Exchange Program, visit our website. To make an appointment, call: 410-328-5408.

Thanking Donors with All of Our Heart

By: Hope Gamper, Editorial Intern

Most people know February 14th as Valentine’s Day,  but February 14th also shares the honor of being National Donor Day. National Donor Day honors donors of organs, tissues, marrow, platelets and blood. This Valentine’s Day, consider giving the gift of life to someone in need and celebrate the amazing generosity of former donors.

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A Great Need for Organ Donors

Every 10 minutes, someone is added to the waiting list for an organ. While UMMC offers multiple listing, potentially allowing a patient to receive an organ sooner, the need for donors is still great.

As the demand for organs rises, so does the need for organ donors. There are two types of organ donors: deceased donors and living donors, and both play an important role in healing someone in need.

A donation from a deceased individual can save as many as 8 lives and the process is facilitated by the Living Legacy Foundation. Deceased donors can provide tissues, corneas and organs such as the kidneys, pancreas, liver, lungs, heart and intestines. Donations are only considered after all life-saving efforts have been exhausted. To prepare for this type of donation, update your driver’s license donor status through the MVA.

The living organ donation process allows living individuals the ability to donate whole kidneys or parts of the liver, pancreas, lungs and intestines. Most of these organs either regenerate on their own or can function without a small portion. Receiving a transplant from a living donor is often an alternative to waiting on the national transplant waiting list. Learn more about living donation for a loved one.

Where Donations Go

Transplant surgeons at UMMC perform a total of more than 420 transplants, but there are currently more than 123,000 people in need of lifesaving transplants. You may direct a donation to a specific individual or your donation may go to the next eligible person on the waiting list. Patients who receive your donation will be matched based on an array of factors including blood type and severity of illness.

To those in need, donating an organ is an indescribable gift.  Successful UMMC transplant recipients for heart, kidney, lungliver and other conditions, have gone on to live joyfully once again.

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To the Heart of the Matter – Ways You Can Help

  • Consider giving the gift of life this Donor Day. Learn more about providing a living donation for a loved one from the UMMC Transplant Center.
  • Become an organ donor by opting in the next time you renew your driver’s license or filling out the online registry form here: https://register.donatelifemaryland.org/
  • Sign up with the Red Cross for a UMMC blood drive to donate blood or platelets.

And most importantly, thank an organ donor and their heroic and truly altruistic gift that has given thousands of people a second chance at life.

Nurses Run for their ‘Heart Kids’

By Jen Arrington, MS, RN, CPN, and Kristen Fantel, BSN, RN, CEN

On Oct. 12, 17 nurses and friends of the Pediatric Intensive Care Unit (PICU) will be running in the Baltimore Running Festival to raise money for the UMMC Children’s Heart Program. When people ask us why we run, there’s one easy answer. We run for patients like Brandon Kerrigan and all of the heart kids that we care for everyday.

When Brandon celebrated his 15th birthday on Aug. 16, no one had any idea that two days later he would be fighting for his life. Brandon was diagnosed with dilated cardiomyopathy, and went into cardiac arrest while being flown from Easton to the University of Maryland Children’s Hospital. Once Brandon was stabilized, his family was told that he would need a heart transplant. Since his arrival to the PICU, Brandon has been determined to get strong while he waits for his heart. He charms the nurses and staff with his bright smile and Nerf guns, just trying to be a normal 15-year-old, while cooped up in the hospital. You can see how charming he is in this picture of us with him at the bottom of our team page.

Brandon is only one example of a patient we are running for. We care for many cardiac patients in collaboration with the Children’s Heart Program. This program provides comprehensive cardiac care for children with a wide range of conditions — from rhythm abnormalities to childhood hypertension, from heart murmurs to serious birth defects requiring complicated heart surgery. While we care for these complex patients, they quickly become a part of our unit – we offer an encouraging smile to their parents in the hallway, we say our silent prayers. And on good days – we dodge Nerf guns as we enter the patient’s room.

The strength and resilience of these children, who battle against all odds, is simply inspiring. As nurses, we are often left with the feeling of wanting to do more. We carefully assess these patients for any changes in condition, we give medications, we advocate for their every need, and we attempt to play and create normalcy whenever we can. But we want to do more.

This is why we decided to run as part of the Children’s Heart Team. We don’t have a miracle drug and we can’t take away the heartache in the eyes of the parents of these patients. But we can run.

As with all of the patients we care for, the teamwork involved in the care of these patients is also inspiring. The team includes Nurses, Doctors, Child Life Specialists, Respiratory Therapists, OR and Cath Lab Staff, Rehabilitation Services – and many, many other people who deserve to be celebrated.

This strong team work was the inspiration for our fundraising efforts. We created a T-shirt that recognizes this team effort, and we are selling the T-shirt around the hospital in order to raise money for the Children’s Heart Program.

In addition to the shirt, we are also hosting a fundraiser at a local restaurant. Join us on Wednesday, Oct. 2, at Blue Hill Tavern in Canton. The restaurant will be donating 20% of its proceeds from the day to our cause. Schedule a lunch with your co-workers, dinner with your family, or join the PICU nurses for Happy Hour – and help an important cause.

Want to join us in our effort to do more? Contact us! Maybe today we can give back a little bit of the inspiration that we have received from these amazing children.

To make a donation: http://www.ummsfoundation.org/picuheart

The ‘Seeker’ Gives Through a Living Kidney Donation

Matthew Taylor writes about “living an authentic life in a world of artifice” in his blog, “The Seeker.” This week, he posted a frank and engaging piece about donating one of his kidneys to his wife, who suffered from polycystic kidney disease.  Here’s an excerpt:

“After some soul searching, I decided to give her one of mine. It was not an easy decision to make since there were many factors to consider, but I am at peace with it now. In fact, I’ve come to appreciate some things about a kidney transplant that I never would have thought of before.”

Taylor, a writer who lives in Rockville, Md., gave the University of Maryland Medical Center, where his donation and his wife’s transplant were performed, permission to direct readers to his post,  “25 Ways to Appreciate a Kidney Transplant.”

The University of Maryland Medical Center is home to the second-largest kidney transplant program in the country. The surgeons involved in Taylor’s donation and his wife’s transplant were Michael Phelan, MD; David Leeser, MD; and Stephen Bartlett, MD.

Man Celebrates Six-Year Anniversary of Heart Transplant during April’s Donate Life Month

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When I first found out that I needed a heart transplant, I didn’t believe it. I was in denial since I was in such good shape all of my life. I hardly even got a cold. I couldn’t believe that my heart was giving out.

Ten years ago after years of being an avid runner, I was growing more and more tired. I went to my general doctor who did an EKG, and he found something abnormal. It was determined that the right electrical node in my heart was not firing correctly, so I had a pacemaker put in. I continued running for the next two years. Then the same problem occurred on the left side of my heart and another pacemaker was put in.

After four years and two pacemakers, my heart started to completely deteriorate. I had an interview with Dr. Erika Feller who determined that I was a transplant candidate. I was added to the transplant waiting list and admitted to UMMC. Throughout the week they had to run tests on me. While at the hospital, I went into cardiac arrest, and I was upgraded to a pump. A couple days later a match was found. I felt great and relieved; it was only five days between the cardiac arrest and the time I got my new heart.

I didn’t wake up initially after the transplant. The toxins in my blood were at such a high level that they brought me into exploratory surgery where they discovered that I also needed my gall bladder removed.

Recovery was pretty good for me. The doctors and staff at UMMC were great. They took good care of me and got me up and walking soon after the surgeries. Two weeks after the transplant I returned home and continued walking around my community. In less than three months after my transplant, I was able to return to work.

It has been six years since my transplant, and I’m able to run again. Every weekend I go walking with the guys in the neighborhood, about 4 to 5 miles. I am also very passionate about sailing. I sail a fair amount and send Dr. Feller a picture of me on my boat every April, which is the anniversary of my transplant.

I would highly recommend that people indicate they want to be organ donors on their driver’s license. Organs are greatly needed, and you may save someone’s life. You never know when tragedy may strike or when your health may deteriorate. But even with a sad tragedy, some good can come out of it. If it had not been for the generosity and foresight of my donor, I probably would not be here.

Young Accountant Reaches Professional Milestone One Year After Living Donor Liver Transplant

By Jennifer Dietrick

Baltimore, MD

FEBRUARY 18, 2013 — As of today, I am officially one year post-op! One year ago, Dr. Barth and Dr. LaMattina had finished the living donor liver transplantation that saved my life!  When the doctors returned to the waiting room to update my family, the entire room erupted in applause! My boyfriend, Rob, was the donor.  Here’s what I’ve been up to in the past year:

I’ve been very busy with work. Being an accountant, this is our busiest time of the year so I am trying really hard to keep up. My biggest goal is to become a CPA (Certified Public Accountant). The test is VERY difficult. It is split into 4 grueling sections which require about 2 months of intensive studying each, while working a full-time schedule.

Before I went into acute liver failure, I had passed 2 parts of the exam (halfway!) but unfortunately, all 4 parts of the exam must be passed within an 18-month time frame. I lost the 2 parts that I had passed during the past year while I was focusing on my recovery. It was very disappointing. In December of 2012, I finally started getting some energy back after struggling with persistent anemia and a hematocrit between 28-30 (36 is normal). I studied really hard during the holidays and took 1 part on January 4 and I just found out that I PASSED!! Now I am on my way again to achieving my goal — and I am only 1 year post-op.

It’s such a wonderful feeling! During the past year, my recovery was really difficult and it seemed like I would never get better and now, 1 year out, I am down to 2 pills, twice a day and living a completely normal life!

I wanted to share this with other patients in hopes that it may provide some hope for anyone recovering or for those who have loved ones recovering from transplants or any other major surgery. There IS a light at the end of the tunnel and it is frustrating getting there but if you keep on working at it, you WILL go on to live the life you imagined and more!

You don’t have to be defined by the fact that you are a transplant recipient or let it hold you back from accomplishing your goals and dreams! Yes, I received a liver transplant but hopefully in the future I will be defined as Jennifer Dietrick, CPA!!

 

UMMC Mentorship Plants Seeds of Discovery With Local Student

by Lauren Goldschen

As a rising senior at Atholton High School in Howard County in August of 2010, I was excited to start my Intern/Mentor Program provided through my school. This program encourages students within the Gifted and Talented Program to apply for internships/mentorships with professionals who hold careers students admire. I’ve always wanted to become a doctor, and I envisioned my mentor as a local physician who would teach me how to schedule patients and take vital signs.  I did not anticipate that the reality of my internship would actually entail observing transplant surgeries and becoming a published author in the #1 peer-reviewed surgery journal, Annals of Surgery.

Finding a mentor for the program was certainly a struggle as I applied to numerous physicians throughout the area. My high school teacher, Mrs. Natalie Kelly, and I received numerous rejections from local physicians. I stumbled upon the University of Maryland Medical Center’s (UMMC) website, which conveniently listed physicians’ names with contact information and their ongoing research projects. I selected a variety of doctors and sent emails explaining the intern/mentor program and asking if they would serve as my mentor.

Although I anticipated more negative feedback, I was amazed that multiple doctors at UMMC responded and agreed to participate as my mentor. It was even more incredible that the first positive response came from Dr. Stephen Bartlett,  Peter Angelos Distinguished Professor at the University of Maryland School of Medicine, Chair, Department of Surgery at UMMC, and Surgeon-in-Chief and Vice President of the University of Maryland Medical System, who graciously agreed to serve as my mentor.

On my first day with Dr. Bartlett, I watched him perform a kidney transplant. And on my second day, I met Dr. Bartlett’s colleague,  Dr. Rolf Barth, assistant professor at the University of Maryland School of Medicine and transplant surgeon at UMMC, who would become another one of my mentors.

My internship project was to compare patient satisfaction rates of living kidney donors who donated via the novel single-port donor nephrectomy versus living donors who donated via the standard multiple port technique. UMMC’s single-port donor nephrectomy utilizes a single incision in the belly button to remove a kidney from living donors. UMMC was the only the third hospital in the country to adopt this single incision donation technique as the standard of care for all living kidney donors.

The UMMC transplant team believed that this technique, which is more cosmetically appealing and less invasive, could attract more living kidney donors and help decrease the growing kidney transplant wait list. But before the procedure could be promoted, the surgeons first needed to determine if donors preferred this novel single-incision procedure to the standard multiple port procedure.

I began my internship project by writing a survey for living kidney donors that addressed their pain levels after donation and satisfaction rates with the overall donation process. The surveys were distributed to UMMC donors of both the novel single-port and the standard procedure. Read about the survey data that were published in the Annals of Surgery.

My internship was extremely rewarding and memorable, and I’m continuing my internship with the transplant team now as a college student. I enjoy accompanying the doctors on hospital rounds and observing the transplant surgeons interact with their patients. There have been numerous teachable moments, especially in the operating room in which I get to learn about anatomy from a truly unique perspective. I also value the advice that both Dr. Bartlett and Dr. Barth share with me regarding college decisions and future medical career plans.

Although I always knew I wanted to be a doctor, I had never before considered the research aspect of medicine. However, this internship experience has certainly sparked my research curiosity. Currently, I work in a cell biology lab studying the aging process of kidneys, and this summer I am again working at UMMC with Dr. Bartlett and Dr. Barth to investigate the transplant results of different immunosuppressant drugs.

This fall I will be a sophomore Biology Major/Spanish Minor at the University of Pittsburgh. I plan to attend medical school, and due to the wonderful opportunities provided by Dr. Bartlett, Dr. Barth, and the UMMC team, I know that research will always be a fundamental part of my medical career.

UMMC Kidney Transplant Team Hangs on for Dear Life

Contributed by Michelle Klein
Pre-Transplant Coordinator, UMMC Division of Transplantation

Scared. Panicked. Frightful.

What am I doing?

These were some of the feelings I was having in the final moments before I rappelled 32 stories from the Baltimore Marriott Waterfront Hotel on Saturday, June 9, 2012.  I am scared of roller coasters and water slides. I won’t even ride Space Mountain at Disney World, yet here I was for the second year, strapped into a harness, about to dangle from 32 stories high to benefit Rappel for Kidney Health, a fundraising event hosted by the National Kidney Foundation of Maryland.

Yet as the rappel volunteers lowered me off the roof, a sense of calm came over me. Instead of being scared, all I could think about was how much my jump, along with the rest of the rappellers, was giving someone else a shot at a new life.

I thought about how fearful and scared some of my patients are when facing surgery to receive a transplanted organ or how they feel when they find out for the first time that their kidney failed without warning. I thought about how many trials and tribulations my patients go through even before they reach transplant surgery. I thought about how the National Kidney Foundation of Maryland, through donations and events like this one, is able help so many patients, especially the ones I work with daily at UMMC.

I remembered how excited I was to tell Kelly Meltzer (Director of the National Kidney Foundation of Maryland) that I am not rapelling alone this year – that I had convinced three more people to join me because they also believe in the mission. My fellow team members from UMMC included Deb Evans, Heather Hurley and Michele Postol. I had such a great experience last year that I volunteered to be part of the Rappel for Kidney Health Committee for this year.

These thoughts overpowered any fear I had about rappelling 32 stories. As I made my way down the side of the Marriott, a funny thing happened, I actually began to enjoy it! It was great to have to a bird’s eye view of the Inner Harbor and the water.  It was an honor to be part of the Rappel for Kidney Health event and I can’t wait for next year’s jump!

Here are some key kidney facts from the National Kidney Foundation:

  • More than 90,000 people are on the waitlist for a kidney transplant.
  • 10 people die each day while waiting for a kidney transplant.
  • 26 million Americans have chronic kidney disease, and most don’t know it.
  • Every 5 minutes, someone’s kidney fails.
  • More than 380,000 people depend on dialysis for survival.

As a Pre-Transplant coordinator at the University of Maryland for 6+ years, I am honored to be a part of this institution. We have surgeons who are so technically advanced that they can care for the most complex patients when other centers can’t offer them any options. I have the pleasure of working with the pre- transplant coordinators, assistants, and nurses who live and breathe transplant all day, every day.

I believe that early detection of kidney disease, having a living donor transplant when possible, and getting an early referral to the transplant division can help kidney transplant patients have their best outcomes.

We are still raising money to help fight kidney disease, so feel free to donate to our UMMC Transplant team.

Rappel on!

 

 

 

 

 

A “Transplant Miracle”

Twenty-six-year-old Drew Sollenberger wanted to donate a kidney.

Two-year-old Ethan Hatton needed a new kidney to live.

Their separate stories became one thanks to the University of Maryland Medical Center, whose doctors removed one of Drew’s kidneys and inserted it in Ethan on January 19, 2011.

Watch the videos below to learn the whole story and to see the first meeting between donor and recipient. You will be glad you did.

The (Non-Directed) Donor: “Giving a little child another chance at life seemed like a no brainer.”

The Recipient: “How do you get an adult kidney into a two-year-old?”

The Meeting: “He’s almost part of the family now, because he gave Ethan the one gift he needed — a new kidney.”

Say “Yes” to Organ Donation

By Dr. Matthew Cooper
Director of Kidney Transplantation

Americans always seem to seek a cause to champion. We have benefits for causes ranging from “Save the Whales” to “Protect the Rainforest.” We have dates on the calendar to celebrate and remember special people and months to promote greater awareness of important causes (e.g., Black History Month, Breast Cancer Awareness Month). The question is, do we lose the value of our intentions with so many of these causes given their just due? I certainly hope not.

April is Donate Life Month! It’s a time when we attempt to bring into focus the remarkable opportunities available through organ and tissue donation. It challenges all of us to consider organ donation at a time when we’re not faced with making such a difficult decision. It calls us all to think of someone else’s needs above our own. It asks us a question — do I have what it takes to be called a hero?

Organ transplantation saves lives … and makes lives better! There is no question about it; the optimum treatment for end-stage organ failure is organ replacement. Study after study support this basic fact. The problem, however, is that just like any valuable resource, there exists a serious supply and demand problem. The number of patients on the national waiting list continues to grow exponentially and organ availability remains essentially unchanged.

For each person who receives the gift of life, many will die waiting. It’s one of the most difficult conversations to have with a patient — telling them we know how to help through transplantation, but not having the resources on hand to make it happen. And so the waiting lists grow…

All that changes with someone saying ‘Yes’ to organ donation. It may not always be an easy decision, but it’s one worth making.

I had the opportunity to participate in a Ceremony of Remembrance this week that celebrated all the living and deceased donors and deceased donor families over the past year. It was a truly moving experience, and one I will never forget. I was surrounded by groups of people that see organ donation as the only option, and their stories were remarkable. There were also a number of organ transplant recipients simply there to say thank you. It reaffirmed for me the incredible humanity that makes organ transplantation a miracle.

I would ask everyone reading this to make this year’s Donate Life Month the time you say yes to organ donation and consider adding your name to your state’s organ donor registry at organdonor.gov, confirm your status as an organ donor on your driver’s license, and be certain to make your loved ones aware of your decision to become an organ donor.

I would also ask you to consider becoming a living kidney donor by contacting your local transplant center and requesting data on the process. Living kidney donation, now performed through minimally invasive surgical techniques — after careful and thorough pre-operative evaluation — is not only a safe process, but allows individuals to return to their normal daily activities in a few weeks. Again, you’ll be saving a life.

What better time than Donate Life Month to make organ donation your cause to champion by becoming an organ donor!