April 17, 2013
Every 10 minutes a new name is added to the national waiting list for various organ transplants. Do you have questions about transplantation issues or organ donation? Do you know anyone who is an organ donor or recipient? What is the role of a transplant center and organ procurement agency?
About the Speakers
Kareem Abu-Elmagd, MD, PhD is the director of Cleveland Clinic’s Transplant Center and program director of the intestinal transplant program at Cleveland Clinic's Digestive Disease Institute. Dr. Abu-Elmagd has earned an international reputation for significant clinical and technical contributions to the fields of intestinal, liver and multivisceral transplantation.
Dr. Abu-Elmagd completed his fellowship in transplantation and residency in general surgery at University of Pittsburgh Medical Center, in Pittsburgh. He is board certified in surgery. He received doctorate degrees from both Emory University School of Medicine, in Atlanta, and Mansoura University School of Medicine, in Mansoura, Egypt. Dr. Abu-Elmagd completed a research fellowship in surgery at Emory University School of Medicine, in Atlanta, and in pathology at Wayne State University, in Detroit. He completed surgery residencies at Mansoura University Hospital and Hurghada General Hospital, in Egypt. Dr. Abu-Elmagd completed medical school at Mansoura University School of Medicine, in Egypt.
Gordon Bowen, is the Chief Executive Officer of Lifebanc. Lifebanc is Northeast Ohio's federally designated, nonprofit organ procurement organization (OPO). Increasing organ and tissue donation for those awaiting transplant is one of Lifebanc's main goals. Working with more than 80 hospitals, Lifebanc is responsible for all aspects of the organ and tissue recovery and donation processes, public and professional education programs, and bereavement services for donor families. Lifebanc is a member of the United Network of Organ Sharing (UNOS) and an accredited member of the Association of Organ Procurement Organizations (AOPO) and the American Association of Tissue Banks (AATB). Lifebanc pursues a future in which the decision to donate is an honor and everyone waiting receives a transplant.
Micah Davis, MBA, is transplant administrator of Cleveland Clinic’s Transplant Center.
Let’s Chat About Organ Donation and Transplantation: Ask the Experts
Moderator: Welcome to our Online Health Chat on organ donation and transplantation with Dr. Kareem Abu-Elmagd, and Gordon Bowen, CEO of Lifebanc. We are thrilled to have them here today. Thank you both for being here to chat with us today.
Gordon, can you begin by giving us a bit of history about Lifebanc the local Organ Procurement Organization (OPO) in Cleveland, Ohio?
Gordon_Bowen: For 25 years, Lifebanc has helped to save and heal hundreds of thousands of lives in northeast Ohio through organ, eye and tissue donation. Lifebanc is responsible for coordinating the donation process, public and professional education, increasing the number of registered organ, eye and tissue donors, and providing bereavement support for donor families.
happy: How can someone register as an organ and tissue donor?
Gordon_Bowen: It is very easy to register as an organ and tissue donor. It only takes a few minutes of your time and it is free. A few minutes to register could help save and heal up to 50 lives. You can register as organ, eye and tissue donor by saying ‘yes’ when asked to be an organ, eye and tissue donor at the Bureau of Motor Vehicles. You can also register online at www.Lifebanc.org. Finally, you can also call Lifebanc to receive a registration form. Be sure to include organ, eye and tissue donation in your living will.
Selection of Transplant Center
Bar: What criteria should be considered when choosing a transplant center?
Kareem_Abu-Elmagd,_MD,_PhD: You need to know the history of the institution and their experience in the transplant procedure you need. You need to know whether they have a multidisciplinary team approach, including the donor and recipient organization. What is their current outcomes for transplant, and the experience of other patients that were transplanted at that institute (with live testimonials of other transplant patients). To learn more about the transplant center at Cleveland Clinic, you may visit www.clevelandlinic.org/transplant.
Carie: I am a 62-year-old female in excellent health and I am a registered organ donor (on my driver’s license). I read somewhere that organs from anyone over age 60 are not wanted. Is this true?
Gordon_Bowen: We do not have an age limit as we prefer to screen all possible donors following death for organ, eye and tissue donation. This is one of the most common misconceptions, so we ask everyone to register as an organ donor and let us make that decision upon your death.
Traf: Why are their age limits for donors? There are active healthy people in their 80s and there are people in their 50s in poor health. With the shortage of organs, this makes no sense.
Gordon_Bowen: At Lifebanc, we do not place an age limit on organ donation. Historically, I believe, the oldest organ donor in the United States was 92 years of age. At Lifebanc, our oldest donor was 78 years. We work closely with Cleveland Clinic to screen all potential donors, and obtain a medical social history from the donor family. Once we have all of the information, we make an effort to see if we can find a transplant center interested in organs from an older donor. There are times when a transplant center will take an older donor if they determine that the patient waiting is critical. We are aware that older individuals are in better health and living longer. More older patients are also being listed, so we make every effort to try and honor the wishes of the donor and their family—regardless of age.
adam9: Do all religions support donation?
Gordon_Bowen: Yes. All major religions in the United States support donation. Many consider donation the ultimate act of charity. If you have any questions, consult your church, synagogue or religious organization.
Dandy: Why is there such a need in the African-American community for transplantation?
Gordon_Bowen: Ethnic minorities are in desperate need of more organ and tissue donors. Minorities are 35 percent of the U.S. population, and approximately 55 percent of those are on the national organ transplant waiting list.
For example, in Northeast Ohio, of the 613 people in need of a kidney transplant, nearly 300 are African American.
People of minority backgrounds have a particularly high need for organ transplants because some diseases that can lead to organ failure are found more frequently in such populations compared to others. Although organs are not matched according to ethnicity, and people of different ethnicities are often matched through donation, those on waiting lists have a better chance of being a recipient if large numbers of donors are available from their ethnic background. This reflects the higher likelihood of compatible blood type and tissue markers, which is critical for donor/recipient matching, among members of the same ethnicity. Hence, greater diversity of donors may potentially increase access to transplantation for all patients on the waiting list.
Organ Recipient Criteria
scoop: Is there an age limit for transplantations, e.g. lungs? I'm 69 years old. Prior to my illness (sarcoidosis), I was an avid runner and participant in most sports. I have never smoked, drank alcohol or abused drugs. Even now, except for the effects of this disease in my lungs, my general appearance (such as weight and so on.) is good. I have been advised that my only option at this time is a lung transplant. Therefore, I ask again about the age limit—or is it based on a combination of one's overall physical condition?
Kareem_Abu-Elmagd,_MD,_PhD: If you really need lung transplant as a lifesaving receiver, age by itself is not a contraindication as long as your cardiovascular system and other organs are healthy. In other words, the biological age rather than the chronological age is the determining factor. Our transplant program at the Cleveland Clinic has no age limit as long as there are no contraindications for transplantation. You may visit our website for more information at www.clevelandclinic.org/transplant.
End-of-Life Standard of Care
life choice: Will doctors let you die if they know you are an organ donor?
Gordon_Bowen: No. The doctors working to save your life have nothing to do with donation or transplantation. Your status as a donor is considered only after all efforts have been made to save your life and you have been declared legally dead. Only organ and tissue recovery agencies have access to your donor designation, doctors and medical professionals do not have access to the registry.
Appearance of Donor Body
munnb: Does donation affect the appearance of the body or delay the funeral?
Gordon_Bowen: No. Donated organs and tissues are removed surgically in a routine and respectful operation. Donation does not disfigure the body. Most donations take place within 24 hours after the death, and should not delay funeral arrangements or a family’s wish for an open casket.
Effects on Organ Recipient
fabrun: What are the chances for pregnancy after transplant and once on immunosuppressive drugs (either female or male?)
Kareem_Abu-Elmagd,_MD,_PhD: You have a good chance of pregnancy and delivering a healthy baby as long as your reproductive system is functioning. However, you are considered a high-risk pregnancy and you should consult with your transplant physician and Ob/Gyn.
maggie: Why do you bruise so easily after a transplant?
Kareem_Abu-Elmagd,_MD,_PhD: Most of the bruises are due to weakness in the wall of your small blood vessels or you have a prolonged clotting time. This is common if you are on prednisone or a blood thinner. Also your physician should check your nutritional status.
Organ and Blood Donation from Organ Recipient
aberghaus: Can am organ recipient also be a donor?
Gordon_Bowen: Yes. Very often we have organ donors following transplantation. Most of the time, they are able to donate organs other than the one transplanted. For example, we have recovered organs, such as heart and kidneys, from a previous liver transplant patient. Thank you for the question and please consider registering as an organ donor since this is a wonderful option to save more lives.
gabriellesena: As a transplant recipient, can we donate blood if we have normal red blood counts?
Kareem_Abu-Elmagd,_MD,_PhD: This is a very good question. Why not? If you do not have any other limitations for donating blood, such as hepatitis C or other viruses, you are qualified.
Dcattell: Is having the symbol on your driver’s license enough or should we register with Lifebanc was well?
Gordon_Bowen: The symbol on your driver's license is all you need to do. About 90 percent of Ohioans register through the Bureau of Motor Vehicles, but more people are beginning to register online through our website as well. You are a registered organ donor and we thank you in advance for being a hero. You can gain more general information by going to our website at www.lifebanc.org.
Small Bowel and Colon Transplant
Airedale: How long is the typical wait for a small bowel transplant once one has been selected to receive one?
Kareem_Abu-Elmagd,_MD,_PhD: If you need small bowel alone, the waiting time is relatively short, i.e., a few days to few weeks. If you need liver combined with the small bowel you may have to wait for a few months because of the large number of patients on the national waiting list for liver transplantation.
Airedale: How long is the typical hospital stay after a small bowel transplant?
Kareem_Abu-Elmagd,_MD,_PhD: Since I have been instrumental in the development of the procedure, the average length of stay at Cleveland Clinic is about three to four weeks. However, we had patients that were discharged within one to two weeks and others stayed for a few months. The international data registry reported an average of 44 days. According to a recent publication I wrote, when there is a longer duration of home parenteral nutrition (HPN) and the need for a liver transplant with the small bowel, this increases the length of hospital stay and slows the recovery. For more information about the small bowel transplant program at Cleveland Clinic call 216.445.1748 or visit www.clevelandclinic.org/transplant. You may also contact me directly at 216.445.8876 or Google my name for his most recent publications.
aberghaus: What is the longest living small bowel recipient?
Kareem_Abu-Elmagd,_MD,_PhD: For the small bowel alone transplant, the longest survival is a French girl who received the transplant in 1989 at the age of six months old. She is currently 24 years after transplant and enjoying a normal life. The longest liver plus small bowel transplant is a patient who is close to 23 years post-transplant. She is currently a wonderful teacher. You may also need to know that we have seven patients that were able to have healthy wonderful biological kids.
Airedale: I had a small bowel infarct, but know that I have at least 95 cm of viable small bowel left. Is that enough to possibly rehabilitate or would I require a transplant? I am in the process of making an appointment to see you, and was referred by Thomas Jefferson University Hospital, in Philadelphia.
Kareem_Abu-Elmagd,_MD,_PhD: We most likely will be able to rehabilitate your gut without transplant. With great confidence nothing is better than your own gut. I know we can do it together. I look forward to seeing you.
3HEARTS: I had a total colectomy eight years ago at Cleveland Clinic. Is there any chance of a colon transplant in the future?
Kareem_Abu-Elmagd,_MD,_PhD: You will certainly qualify for transplant if your absorption and nutritional needs mandates the requirement of intravenous nutrition and fluid supplement. The reason for that is that we have to weigh the balance between the risk of immunosuppression and benefit of transplant. Accordingly colon transplant is only performed in combination with the small bowel if indicated.
Kendra: I recently received a kidney transplant in September of last year. My blood counts (red and white) have been low. Is this normal after a transplant?
Kareem_Abu-Elmagd,_MD,_PhD: Your low blood count is not uncommon after any organ transplant including the kidney. The most common underlying cause is the immunosuppressive drugs and the antiviral therapy, such as CellCept® (mycophenolate mofetil), Valcyte® (valganciclovir hydrochloride ), Bactrim® (sulfamethoxazole and trimethoprim) and others. Also in some patients cytomegalovirus (CMV) infection can cause low counts. I am assuming that your question is related to the white cells. If you have low red cell count, ask your physician to check your iron and vitamin levels.
seymour: I had a liver transplant four years ago. It was very problematic, and I was in and out of the hospital. The bile duct was usually the problem. At 11 months I had a Roux-en-Y gastric bypass surgery which didn't resolve my issues. My bile duct continued to clog up and was unable to flow properly. Then I had tubes put in my side and chest going into my bile duct with a gradual increase of the size of tubes to try and increase the size of my bile duct. I wore the tubes for six months. This helped, but I still have episodes involving the bile duct flow. I will wake up freezing with shakes, and then get hot and spike fevers. My pattern has been having an episode approximately about once a month. They say it is more than likely acute ascending cholangitis. My transplant was due to hepatitis C—not cholangitis. Do you have any suggestions of anything that may help me with this issue?
Kareem_Abu-Elmagd,_MD,_PhD: I am sorry to hear about your problem. It is a tough one, and therapy is commonly individualized according to the underlying cause. We will be more than happy to look at you and your records if you are willing to come to Cleveland Clinic. I am also certain that your current physicians are doing their best to take care of you. Nonetheless, a few patients like you may ultimately require retransplantation.
there4jsweetie: Regarding lung transplants, are there some blood types more difficult to match? How important is blood type in the donor/recipient match procedure?
Kareem_Abu-Elmagd,_MD,_PhD: Traditionally the donor and recipient should have the same blood type for better outcome. The reason for that is the high risk of rejection or hemolysis when we cross the blood type due to activation of the recipient immune system against the donor tissue. In addition there are other important match procedures, including the HLA (human leukocyte antigen) system and the presence of antibodies. You may also need to know that the lung and the intestine are organs that are more vulnerable to rejection and matching for blood type. Therefore , HLA and absence of donor specific antibodies are important for better outcome. To learn more about our lung transplant program contact us at 216.444.8282.
Jsweetie: How soon after being diagnosed with pulmonary fibrosis should you contact the transplant team for evaluation? Can a patient make that contact or does the patient have to be referred by the pulmonologist?
Kareem_Abu-Elmagd,_MD,_PhD: You should contact the transplant center if your disease is progressing and becoming oxygen dependent. The team at the time will decide if you would benefit for transplantation in a timely fashion. This is their decision. You have the right to contact the transplant center directly or through your pulmonologist. Please do not hesitate to contact us our lung transplant program at 216.444.8282.
Jsweetie: Would fundoplication surgery to correct acid reflux and hiatal hernia in any way be a negative thing to do if you are hoping to have a lung transplant?
Kareem_Abu-Elmagd,_MD,_PhD: It should not. However consult your pulmonologist before considering the surgery.
there4jsweetie: Regarding lung transplants, what is the normal time interval and maximum time interval between removal from donor and reinsertion into the recipient?
Kareem_Abu-Elmagd,_MD,_PhD: It is always better to shorten this time—what we term the ‘cold ischemia time.’ The lung, heart and intestine are the most sensitive organs to preserve in the cold solution outside the human body. As you may know we are launching an ‘ex-vivo’ (artificial environment outside of the body) preservation program at Cleveland Clinic to better preserve the organs in an environment similar to the human body. With this program more organs will be transplanted with better outcomes. We are already doing ex-vivo heart preservation and we are about to do the lung in collaboration with other centers in the U.S. A few livers already have been transplanted with ex-vivo normothermic perfusion in England.
fullvisceral: What is the quality of life after multivisceral transplant—if all goes reasonably well? Can you refer me to additional resources discussing the full visceral transplant? I have been trying to find more information on your website, but I see that only three multivisceral transplants have been reported. I ask in urgency to know more about survival expectations, complications, and so on concerning this most difficult procedure.
Kareem_Abu-Elmagd,_MD,_PhD: I spoke with your physician yesterday and I have complete medical information to answer your questions according to your case. Multivisceral transplantation is not a rare type of transplant. We have done more than 60 multivisceral transplants. The procedure includes transplantation of the stomach, duodenum, pancreas, intestine and liver together. The reason that you need all of these organs is because of the extensive clots that you have in your system that feed the abdominal organs. You are at a relatively higher risk because of your previous multiple surgeries. I agree with your physician that a liver transplant alone may carry a prohibitive risk in the operating room if the surgeon cannot restore the blood flow to the new liver. In addition, you could continue to bleed if the whole system is not replaced at the same time. Although it is a technically challenging operation, the outcome is usually very good because the liver protects the other organs from rejection. Your quality of life would be good with the transplant. There is more information that we can share with you when you come to visit us. If you provide us with your address, I will be more than happy to send you all of the publications. You may also Google my name and may be able to retrieve all of the publications concerning multivisceral transplantation. Please do not hesitate to call my office and I will be glad to discuss the matter in full details with you. My number is 216.445.8876.
Post-Organ Transplant Medications and Care
Miller3: Can you talk about some general questions about all of the drugs a person may be on post-transplant? What is the expense and do you have ideas on how to fund? Are there interactions between drugs, particularly the immunosuppressants and other drugs? Are there drug interactions with foods? Finally, when is the best time for taking all of these drugs?
Micah_Davis,_MBA: Medication costs post-transplant are dependent on the individual’s insurance and prescription coverage and co-pay requirements. Patients who don’t have coverage or lose coverage can experience costs upwards of $2000 per month. We always recommend having adequate or securing secondary prescription plans to cover post-transplant medications—this includes our patients with Medicare coverage. Co-pays vary by insurance plan, and can still cost $0 to $300 per month. I recommend calling your plan provider to determine whether transplant medications are included in your benefit prescription plan. If so, what co-pays or out-of-pocket expenses can you expect? You will also want to ensure that the coverage is not for a limited window, e.g. only three years post-transplant. A financial counselor will review your benefits and prescription coverage during the referral for transplant. He or she will discuss your coverage and options for obtaining additional coverage if needed. Additionally, they can also discuss fundraising opportunities that can assist with co-pays and out-of-pocket costs.
Bird song: There is a significant cost post-transplant for care when coming for visits—particularly for the cost of housing. Is there an area that can help coordinate inexpensive housing options, coordination of appointments, etc.? Currently, it takes me several months to set up appointments (up to eight different departments. The cost of travel, housing and the length of stay for appointments may be a few weeks, which can run me $6000 twice per year. It would be helpful to have a coordinator post-transplant that could help with these things.
Micah_Davis,_MBA: The Transplant Center subsidizes transplant housing for all of our patients at the InterContinental Suites Hotel. For more information, please visit: Transplant Hospitality.
Nutrition and Transplantation
wild child: What types of food are recommended to eat healthy after a transplant?
Kareem_Abu-Elmagd,_MD,_PhD: You can eat anything you want if you have a good transplant including the intestine. However, certain dietary restrictions may apply if you have high blood pressure, high cholesterol and other health conditions that may require some dietary restrictions. You may also visit other websites for transplant and nutrition, as well as the Center for Human Nutrition.
busyb: What dietary changes are recommended prior to a transplant? Would dietary changes delay the need for a transplant or possibly avoid it altogether?
Kareem_Abu-Elmagd,_MD,_PhD: The dietary changes that you may need prior to transplant depend on the organ failure you are experiencing and your overall health issue. Your BMI (body mass index) is an important since it affects the outcome after the transplant— regardless of the type of organ transplant. The only factor that universally will delay your transplant is if your BMI is greater than 30. Most centers recommend a diet regimen for weight loss. However, if transplant is urgently needed, the transplant team may proceed with the transplant. For more information, please visit www.clevelandclinic.org/transplant.
Donor and Recipient Relationship
cranb: I know most of us would like contact with our donor families. There seems to be a difference in the handling of that in Ohio and other places.
Gordon_Bowen: At Lifebanc, we devote much time to honoring and following the family following organ, tissue and eye donation. If the donor family permits, we follow all families for a minimum of two years with letters, calls and potential meeting with the recipients.
First we need to make sure that the donor family is ready and/or interested in meeting with the recipients. This process differs for all families—with some wanting to correspond immediately, some wait months or years following donation and others never have that desire. At Lifebanc, we begin with written correspondence from the donor family, and work closely with the transplant center to coordinate the correspondence from the recipient side.
Initially, all information is blinded due to confidentiality for both the donor and the recipient. Once the written correspondence continues and both agree that they would like to meet, Lifebanc coordinates the meeting. At times, Lifebanc is present for the meeting and at other times, the donor family and recipients prefer to meet alone at a mutual location.
3HEARTS: What happens to those of us well past the two years you mention? I am still interested in meeting my donor families. I have never had a reply from them. I am out 13 plus years.
Gordon_Bowen: At Lifebanc, we follow our donor families as long as they prefer. Also, we keep records for all donors indefinitely—so, often we get a request from donor families and recipients to begin correspondence well after two years. The process is the same, where we contact the transplant center if the request comes from the donor family or the transplant center calls Lifebanc if the request comes from the recipient. It must be noted that we pass along the information to the donor family or the recipient, but it is their decision whether they choose to respond. There have been instances where families hold a letter years before they choose to open and respond. There will also be times where they prefer to keep the donation private and will never respond. We honor that decision as well.
3HEARTS: What is the worst situation which has come from a donor family and recipient meeting? I have heard only good stories.
Gordon_Bowen: I have been at Lifebanc for 13 years and have not come across an instance where a meeting between a donor family and recipient went ‘bad.’ I strongly believe that it relates to our strict guidelines to protect the donor family and work with them in preparation for initial correspondence and/or a future meeting. By the time they meet, they have corresponded in writing or phone several times.
Dcattell: Our son died on April 5, 2013 and was a donor. Lifebanc staff was amazing. Thank you, Lifebanc, for helping those in need to help those in need. We bought wristbands for all at the memorial service, and posted on Facebook about ‘Rock Green and Blue Day’ on April 19th. You have made our loss a little easier! Keep up the good fight for life!
We wish our son could have donated more organs, but he lived 13 hours after taken off technology. How do we find out more about who got help from Conor's donation?
Gordon_Bowen: First of all, my greatest sympathy goes out to you and your family and your willingness to think of helping others during that terrible time of you life. Lifebanc is honored to have been a part of your life and appreciate your kind comments about our team. I will pass along your comments to them. April is Donate Life Month, and Conor was and continues to be a hero to those that were waiting for that miracle from Conor. Thank you. Please see my previous responses about contact between donor and recipient families through Lifebanc.
Moderator: I'm sorry to say that our time is now over. Thank you again Dr. Abu-Elmagd and Mr. Bowen for taking the time to answer our questions today about Organ Donation and Transplantation.
Kareem_Abu-Elmagd,_MD,_PhD: Thank you for all of your questions. I am sorry that I was unable to answer all your questions, but will email you the answers.
Gordon_Bowen: Remember that April is donate life month. It is easy now and anyone can register as an organ or tissue donor. Registration is easy. You can indicate your desire when getting your driver's license with the BMC, tell your family of your intention to donate, tell you family physician, attorney, include organ , eye and tissue donation in your living will . You may also contact Lifebanc at 888.588.LIFE (5433) or go online to register at www.Lifebanc.org.
For More Information
On Cleveland Clinic
Cleveland Clinic's Transplant Center is a national leader in transplantation, performing bone and soft tissue transplants, bone marrow transplants, heart transplants, lung transplants, corneal transplants, kidney transplants, pancreas transplants, intestinal transplants, liver transplants and more. The recruitment of exceptional transplant specialists and scientists, combined with technical innovation and cutting-edge research, has made Cleveland Clinic one of the world's most comprehensive transplant centers. More information about the Transplant Center can be found at www.clevelandclinic.org/transplant.
Cleveland Clinic's Liver Transplant Program is among the most comprehensive in the world, and includes a living donor liver transplant program. Patients on our wait list receive transplants nearly twice as fast as the average expected national rate, and our one-year survival rate of 91.2 percent exceeds the national average for expected survival rate. Cleveland Clinic also offers a unique living donor program for select patients who require liver transplants. Cleveland Clinic's Intestinal Rehabilitation and Transplant Program offers comprehensive services to patients by a world-class team of medical and surgical specialists in gastrointestinal diseases, total parenteral nutrition (TPN) experts and transplant surgeons. Cleveland Clinic is one of only 15 CMS-certified intestinal transplant programs in the nation, and one of only eight specializing in caring for adult patients.
Cleveland Clinic’s Lung Transplant Program is a national leader in lung transplant, both in terms of patient volumes and successful outcomes. The transplant program has established a reputation for accepting and transplanting challenging, complex patients, which has led to our high referral rate. Fifty percent of our patients receive a transplant in about 3.7 months as compared to a national average of 50 percent receiving a lung in 4.7 months or less. The majority of our patients spent an average of about 161 days on the waiting list in 2011 before they were transplanted.
Cleveland Clinic’s partnership with Lifebanc provides life-saving organs to transplant patients, and a strengthened commitment to educating communities on the importance of organ donation.
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