Information For Friends and Family
One of the greatest gifts you can give a loved one with PH is registering to be an organ donor. The need for donors is greater than the number of donors, and a single donor can save or enhance the lives of more than 50 people. So, sign an organ donation card, but more importantly, share your decision to share life with your family. Even if you have signed a donor card or indicated your wish to donate on your driver’s license, you need to tell your family since they will be consulted before donation can take place.
Here are a few common myths about organ donation and the truth behind them:
Myth: I’m too old, or too young to be an organ donor
Truth: People of all ages and medical histories are potential donors. Your medical condition at the time of death will determine which organs and tissue can be donated.
Myth: Organ donation will disrupt funeral and burial plans
Truth: Recovery of organs and tissues does not interfere with funeral and burial arrangements. An open casket funeral is possible for organ and tissue donors.
Myth: If I become an organ donor it will be a financial burden for my family
Truth: There is no cost to the donor’s family or estate for organ and tissue donation. Funeral costs remain the responsibility of the family.
Myth: If emergency room doctors know you’re an organ donor, they won’t try as hard to save you.
Truth: The number one priority for the doctors who will treat you in the hospital is to save your life. Organ donation can only be considered if you die and only after your family has been consulted. The physician who certifies a patient’s death cannot be involved in the removal of donated organ or tissues or in the transplant surgery.
Myth: Having organ donor noted on your driver’s license or donor card is enough to make you a donor.
Truth: Your family will be consulted before donation can take place. Signing a donor card or indicating your wishes on a driver’s license is not enough. Tell your family you want to donate life so they can help you share the gift of life.
Pediatric transplant varies in respect to adult transplant in several ways. Priority for available organs for pediatric patients is not determined using the LAS. Rather, wait time, blood type and location are used to determine priority for organs in pediatric transplant candidates. Organs from donors under the age of 18 will first be offered to pediatric transplant candidates before they are offered to adult candidates.
Pediatric transplant candidates will undergo many of the same tests and workup procedures as adults. The process of getting the call and arriving at the hospital, as well as the general surgical procedure are the same in children and adults. However, there are some important medical notes about pediatric transplant:
- Infants from the earliest months can undergo successful lung transplantation
- It is important to prevent illnesses before and after transplant surgery, so all childhood immunizations should be given prior to listing for transplantation. Patients also should be vaccinated against pneumonia.
- On the day of the transplant, the anesthesiologist may allow you to take your child into the operating room and stay with them until they are put to sleep. Ask your transplant team beforehand if this will be a possibility.
Any hospital experience can be scary for children, particularly one involving surgery. Here are a few tips to ease the anxiety that children may experience during pre-operative doctors visits, and during the transplant surgery and recovery:
- Make the hospital room feel like a familiar place by bringing toys, pictures of families and comfort objects from home.
- Try to have a family member or members with the child as much as possible.
- For children pre-school aged and up, pre-hospital teaching can help ease anxiety. Explain the hospital stay or visit and medical procedures in simple, non-threatening terms the child can understand. Make sure that your child’s doctors also explain things simply and in positive terms. You can ask the doctors, nurses and therapists to draw pictures to aid in explanations.
- Children are very perceptive: remaining positive will help them do the same.
- It is important that children understand that their illness is not a punishment but simply something that happened to them.
- Encourage your child to talk about his or her feelings. Listen when your child is talking and acknowledge his or her feelings.
- Encourage your child’s friends to visit, call, or write letters while your child is in the hospital.
For information about post-transplant life for pediatric transplants go to the Transplant Living website at http://www.transplantliving.org/pediatric/adjust.aspx
Standing by a loved one while they list, wait, receive, and recover from a transplant is a long, emotionally wearing process. Like everything else in life this process will have its ups and downs. While it is invaluable to the transplant candidate to have a friend, loved one, or family member by his or her side through this process, these caregivers must make sure that they also take care of themselves.
The transplant process does not only impact the patient; the transplant patient’s entire family is impacted by the reality of their illness, the transplant, and the changes that come after transplant. Financial pressures from the continued cost of transplant medications, changes in family roles, and other sources of stress can sometimes overwhelm families and marriages. As a caregiver, the key to maintaining emotional stability will be stress management. Stress management techniques are discussed in detail below.
Although the transplant patient will have a variety of physical and emotional needs the caregiver must ensure that his or her own needs are being met. Throughout the process caregivers should maintain their friends and activities and make sure that they have time to relax and step away from the stresses that the transplant process brings with it.
To some caregivers this may seem impossible because of the vast amount of time that caring for the transplant patient requires. The key will be to enlist support. It is unrealistic to think that one caregiver can provide for all of the needs of a transplant patient. Rather, a support network should be formed of friends, family, social workers, physicians, mental health professionals and/or spiritual and religious leaders. In this way the transplant patient can receive all of the support he or she needs without too much stress being put on a single individual. Below are more caregiver tips:
- Watch out for signs of stress including:
- Denial
- Withdrawal
- Anxiety
- Depression
- Exhaustion
- Sleeplessness
- Irritability
- Inability to concentrate
- Unexplained anger
If you experience these, or other, signs of stress try to take a break or talk with someone about your feelings.
- Maintain as much of your normal routine as possible, be sure to make time for friends, families and activities you enjoy.
- Try to either act on or accept changes and challenges. If it is something you can change, act on it, if it is something you cannot try to work towards accepting it.
- Learn a relaxation technique such a deep breathing, meditation, prayer, visualization, guided relaxation or progressive muscle relaxation
- Set priorities, focus on achieving the things that are truly important, and either delegate or put off tasks of lesser importance
- Delegate responsibility. Though you may be the primary caregiver enlist a support network of individuals that can address all of the various needs of the transplant patient. Remember its ok to ask for help
- Share your thoughts and feelings with a friend, family member, spiritual/religious advisor or mental health professional
- Exercise is a great way to relieve stress and re-energize your mind and body
- In addition to exercise, be sure to keep a good sleep schedule and maintain healthy nutritional habits. Stress makes your body much more susceptible to disease, these good habits will help fortify you.
The following resources have been noted to be particularly helpful and informative for transplant patients and their families:
Organizations
Transplant Information and Support
Division of Transplantation
The website of this government agency (part of the Health Resources and Services Administration) links to all of the organ procurement organizations in the United States and to many organ donation and transplantation organizations and associations. It also provides general information about donation and transplantation.
Pulmonary Retransplant Registry
The registry, a collaborative effort among worldwide centers performing lung retransplants, includes data on 250 patients from 48 centers in North America, Europe, and Australia.
Second Wind Lung Transplant Association
This organization publishes a membership directory of lung transplant patients and the bimonthly newsletter Airways. The association also hosts an annual educational conference, provides support to patients, and is working to establish chapters of Second Wind throughout the country.
United Network for Organ Sharing
This nonprofit agency serves as a clearinghouse for matching donor organs with recipients. Its website includes statistics and information about transplantation.
The Lung Connection
TLC is an independent non-profit corporation designed by lung transplant recipients and their caregivers, both personal and professional. It is a comprehensive resource for families going through the transplant process, both before and after surgery.
Awareness and Education
Coalition on Donation
This is a nonprofit alliance of national organizations and local coalitions across the United States, dedicated to educating the public about organ and tissue donation.
Gift of Life Foundation
The foundation’s mission is to increase public awareness about organ and tissue donation, primarily in the business community.
International Association for Organ Donation
This group works to educate and promote the importance of organ and tissue donation and to attract additional donors through public outreach programs and educational materials targeted at ethnically diverse communities, locally and abroad.
National Council On Minority Education in Transplantation
COMET’s main goal is to increase the awareness of organ and tissue donation in the minority community.
Fundraising and Financial Assistance
PSI A.C.C.E.S.S. Program
PSI ACCESS offers representation to claimants with pulmonary hypertension who have applied for disability benefits from the Social Security Administration. In addition, PSI ACCESS staff members help explain benefit and entitlement options under Social Security Disability, Supplemental Security Income, Medicare, Medicaid, COBRA, HIPAA, FMLA, and various health care coverage alternatives provided by each state. PSI ACCESS also engages in a range of activities to educate and advocate on behalf of the pulmonary hypertension community. All PSI ACCESS services are offered at no cost. You can call them toll-free at 888-700-7010 for answers to your questions.
Children’s Organ Transplant Association
The association assists transplant patients and their families in organizing fund-raising events. It works with adults as well as children. Under its gift-matching program, patients can receive up to $10,000. All funds raised go to the individual; no administrative fees are collected.
National Transplant Assistance Fund
This group provides fund-raising expertise for patients raising money for transplants, educational information, and financial support to patients through medical assistance grants.
Books
I Call My New Lung Tina: Inspiration from a Transplant Survivor
by Shirley Jewett, 2002
The Lung Transplantation Handbook (2nd ed.)
by Karen A. Couture
Trafford Publishing, 2001
Written by a double-lung transplant recipient, this comprehensive book covers many aspects of lung transplantation before, during, and after the procedure. Couture wrote the first edition just one year after her operation in the hopes of providing patients with relevant information all in one place. To order, go to www.trafford.com.
Pulmonary Hypertension: A Patient’s Survival Guide (3rd ed.)
by Gail Boyer Hayes
Pulmonary Hypertension Association, 2004
Members of PHA’s Scientific Leadership Council call the Survival Guide series “The Bible of PH.” This 300-page book, written by a PH patient and medically reviewed, tells the PH story in easy-to-understand language, with intelligence, caring, and humor. To order, go to www.phassociation.org/Store/
Articles and online resources
Patient Information
New Lungs
This is an online guide to preparing for, obtaining, recovering from, and living with a lung transplant. Created by a double-lung transplant patient, the site also offers a list of resources, major transplant centers, and patient support sites.
Organ Donation: A Health Spotlight Special Report
This report on the “NewsHour with Jim Lehrer” website illustrates the organ shortage and provides a clear overview of organ and tissue donation and transplantation.
Organ Transplantation: Coping with the wait
(locate by searching for the keywords “Organ transplantation”)
This useful online article from the Mayo Clinic also links to related site content.
Transplant Living: Organ Donation and Transplant Information for Patients
Transplant Living is a project of the United Network for Organ Sharing (UNOS), a nonprofit organization that maintains the national Organ Procurement and Transplantation Network (OPTN) under contract with the Health Resources and Services Administration of the U.S. Department of Health and Human Services.
Medical Issues
Advances in Pulmonary Hypertension, Vol. 4, No. 2 (Summer 2005)
“New UNOS Lung Transplantation Allocation System to Optimize Outcomes”
Gundeep S. Dhillon, MD and Ramona L. Doyle, MD.
Available online
Advances in Pulmonary Hypertension, Vol. 3, No. 1 (Spring 2004)
This issue focuses exclusively on transplantation for the PH patient.
Available online
“Psychiatric Aspects of Transplantation, II: Preoperative Issues”
by Catherine Crone, MD, and Thomas Wise, MD
In Critical Care Nurse, Vol. 19, No. 3 (June 1999), pp. 51-63
To purchase back issues, go to www.critical-care-nurse.org/
“Psychiatric Aspects of Transplantation III: Postoperative Issues”
by Catherine Crone, MD, and Thomas Wise, MD
In Critical Care Nurse, Vol. 19, No. 4 (August 1999), pp. 28-38
To purchase back issues, go to www.critical-care-nurse.org/
Insurance and Financial Issues
“Developing a Financial Strategy”
In What Every Patient Needs to Know, United Network for Organ Sharing (2004), pp. 23-38.
For a free copy of this brochure, call 888-894-6361 or go to
http://www.unos.org/resources/brochures.asp (PDF download)
www.unos.org/resources/productCatalog.asp. (Free online order, S+H not included)
“Financing Your Transplant”
In Partnering with your Transplant Team, Division of Transplantation, Health Resources and Services Administration, U.S. Department of Health and Human Services (2004), pp. 21-32
For a free copy of this brochure, call 888-894-6361 or go to http://www.unos.org/resources/brochures.asp (PDF download)
www.unos.org/resources/productCatalog.asp. (Free online order with free S+H)
“A Guide to Understanding Healthcare Insurance Benefits”
This guide, updated in September 2004, is online at the Pulmonary Hypertension Association website.
http://www.phassociation.org/insurance/guide/
Transplant Center Directories
Medicare Approved Lung and Heart-Lung Transplant Centers
This list reflects up-to-date information from the Centers for Medicare and Medicaid Services.
UNOS Member Directory
The search function on this Web page allows you to locate all transplant centers designated by the Organ Procurement and Transplantation Network, sorted by organ or location.
