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Mary Kaiser, M.S.W., L.C.S.W.-C., has |
Feeling in control, having a say in what happens to us, is fundamental to our sense of self worth and dignity. Chronic illness can take away many of our choices, but we always have the right to decide “yes” or “no.”
Whether or not to have a transplant is one of the most important decisions you will ever make. Transplant requires a tremendous commitment, so it is important to consider all aspects of transplant prior to saying yes (or no). Making a decision to have a transplant involves looking at medical, financial, social, and emotional aspects.
MEDICAL
The obvious medical benefit of transplant is prolonging life. Ask yourself:
Do I understand my illness and treatment options fully? What is my prognosis with or without transplant? What treatments are currently available? What side effects come with transplant and medications? How long will recovery take? What are my responsibilities? Do I feel comfortable with the transplant team? Do they inspire trust? Do they have time for me? Are they knowledgeable and honest? Am I comfortable with the hospital reputation and physical environment?
SOCIAL
What will happen to my job? How will I manage my expenses while I am recovering? How will I get to and from the hospital, my appointments? Who will take care of me while I recover? Who will take care of my family/pets while I recover? Who can I turn to when I need emotional support? Do my family and friends support my decision for transplant? Do they understand what is involved? Are they willing to assist and be an active partner in transplant?
The National Family Caregivers Association (NCFA) offers
resources for caregivers who may be having difficulty with some of these questions. NCFA was organized to educate, support and empower for those who care for chronically ill, aged or disabled loved ones. Contact 1-800-896-3650 or www.nfcacares.org
FINANCIAL
This is a very important. Access to health care in our society is dependent on a payment source. You must be familiar with your insurance coverage and understand your personal financial obligations. Also, you need to be sure that you maintain insurance plans and follow-up with renewals, etc. If you do not feel you can take care of managing the financial aspects of transplant, there must be a person in your life who agrees to do it for you. You cannot rely on outside agencies to manage your health insurance or personal finances. You must be prepared for a lifelong commitment to ensuring coverage is in place to manage your health care needs. Remember, treatment continues after surgery, financial planning continues for life.
EMOTIONAL
What do I expect from transplant? Do I expect it to fix all areas of my life? Are my goals realistic? Am I prepared to follow the post transplant plan of care no matter how difficult or inconvenient? Do I know what to do when my mood is down or I feel overwhelmed? Am I willing to seek help when needed? How have I coped with illness and loss so far? Am I OK, ready to take the next step? Do I make this commitment with full knowledge and understanding, for life?
This is your life, your choice. A successful transplant patient makes an active decision for transplant with a full understanding of the impact, both positive and negative.
Be honest with yourself. Your transplant social worker is available to discuss planning for transplant and any issues or concerns you may have.
The Decision to Become a Living Donor What are the criteria for living donation? It is important to realize that living donation criteria examine a number of factors pertaining to the health of the donor. With their growing experience, the medical team knows what to look for. Health status, not necessarily age, is the most important factor for donors. If you are considering donation it is best to ask the team about your suitability. On the CTC Patient Zone web site (http://www.hopkinsmedicine.org/transplant/patient/living_liver) there is information on living liver donation, including matching and physical criteria. Living kidney donors can click to the site: http://www.hopkinsmedicine.org/transplant/patient/living_kidney For information and for a self-referral form go to this site: http://www.hopkinsmedicine.org/transplant/forms/donor. Patients can also ask their coordinators for information on living donation. How can I find a Living Donor? Patients should let their family know they want to consider a living donation. Sometimes a family member will volunteer. Friends, when told of the need, may step forward. Announcements to church groups and organizations the patient belongs to may result in a potential donor. Word of mouth is very important. The task of finding a donor is an opportunity to educate people about organ donation and how they can help, even if they do not become a donor for a specific patient. What is the donor evaluation process like? Living donation involves surgery and the medical team wants to make sure the donor will not be harmed by it. The donor undergoes a stringent, independent medical and psychological evaluation that can take several months (about 3-6 months for liver donors and around 3 months for kidney donors). During this time the donor needs to become educated and think over the decision. At any step the donor can opt out of the process. What if a donor has doubts? A donor can opt out at any time and should feel free to do so. If a donor feels hesitation, even up to the day of surgery, it is his or her right to cancel. A donor should not feel pressured. An independent medical evaluation of the donor can disqualify someone on medical grounds. Where can I get more information on living donation? The CTC web site has self-referral forms for liver and kidney donation. The patient’s Hopkins physician and nurse can answer questions and provide literature to study. Call 410-614-1164 for living liver information and 410-955-5045 for living kidney information. —Nancy K. Boyle, R.N., B.S.N., C.C.T.C., Supervisor Clinical Transplant Coordinator, contributed to this article. |
