Living Organ Donor Issues

If you are experiencing problems you need to call your transplant center and express the need for intervention. If the transplant center or surgeon is not available to assist you, then seek care from your personal physician or go to the local ER. The information on this website is not a substitute for any medical care or advice.

The Living Organ Donor's desire to donate an organ while they are living is based upon emotion, no matter who they donate to. The emotion of love for your fellow human being is usually the main driving factor since there is no physical benefit the Living Organ Donor derives from living donation. When an emotional relationship is evident between donor and recipient, the relationship often tends to intensify after donation when the transplant is successful.

1. LIVING ORGAN DONOR - Living Organ Donors experience a vast array of emotions and psychological issues before and after donation. Some are minor while others can be major issues. It is totally normal to have some anxiety and stress before donation. After all, this is a major operation with many facets for the donor and recipient.

Before donation, many donors have emotional ups and downs. The process can be very time consuming. Living Donors are focused upon relieving the pain and suffering the recipient experiences in everyday life. This can be very frustrating because the Living Donor wants to help, yet they have little control in the whole process.

Anxiety can be great during this time. There are the "what ifs" donors experience. Some donors have never experienced surgery and don't know what to expect. Ask the transplant center if there are other donors you can speak with concerning their experiences. If they are not able to put you in touch with other Living Organ Donors, express the problems you are experiencing. Sometimes just meeting with the surgeon and/or transplant coordinator can alleviate much anxiety. If the anxiety and stress are overwhelming, you need to relay this information to the transplant coordinator to see if there is someone in the hospital, such as a social worker you can speak to. Stress and anxiety can tax the physical body so these problems need to be dealt with before donation. If the transplant center does not have a support system in place, then see if your employer has a EAP (Employee Assistance Program). Many EAP's can offer assistance through counseling. If you belong to a church, go to the clergy to see if they are able to offer counseling. If the problems are severe, you should not donate until they are resolved. If all you need is to interact with other donors concerning their experience, try some of the websites for Living Organ Donors. Many of these sites offer moral support from other Living Organ Donors. Just talking with someone can help alleviate the stress. You may also call the LODAP donor hotline.

The donor needs to remember one thing, they can always change their mind about donating. NO DONOR should be coerced into donating. If you decide you can not go through with the donation, then contact the transplant center. Inform the transplant coordinator you need to speak with them concerning the donation. When you meet with the transplant coordinator, just tell them you have changed your mind. YOU DO NOT HAVE TO GIVE A REASON. This is a very difficult time for you and there are many things to consider. There is nothing wrong with changing your mind, this is your RIGHT and you should not feel guilty. The transplant center SHOULD NOT tell the recipient you have changed your mind. They will just tell the recipient you were found not to be a suitable match. Do not feel guilty because you have changed your mind, if you think this in not right for you, then it is not right for you or the recipient.

After donation some donors have experienced depression or a greater sensitivity to emotions. Donors attribute the increased sensitivity to various causes. Some donors feel as though there was a spiritual awakening, while others state they have a greater appreciation for life. Depression must be addressed. Depression can result from either emotional stress and/or physical factors. Depression must not be ignored and the Living Organ Donor needs to address the issue with a professional. The Living Organ Donor might need counseling and/or medication therapy. The Living Organ Donor must realize depression should be viewed as a medical condition that needs resolution, just like the recipient needed resolution to their organ failure. There have been Living Organ Donors who committed suicide, so depression should not be taken lightly.

2. FAMILY - Family members can be the most helpful or sometimes the most difficult when dealing with emotional issues. Each Living Organ Donor situation is unique and so is the family support system. If you are a family member who has come to this site, realize you are free to express your opinions and you don't have to agree with the donation, but emotional support is needed for every Living Organ Donor. The emotions need to be discussed before donation. If issues are not resolved by discussion, ask the transplant coordinator for intervention of a social worker or counselor before proceeding with the Living Organ Donation.

Opposition from family members is very difficult for the Living Organ Donor. Some family members can oppose Living Organ Donation whether the donor is donating to another family member, friend, or stranger. Donors must remember one thing about family opposition; they love you and worry about the risks. While usually family members understand donating to another family member, some members can be opposed if the disease causing the organ failure was self-induced.

When an emotional attachment is evident in the donation process, both donor and recipient need to openly discuss risks and other options before proceeding with the living organ donation. After donation is not the time for donors and recipients to discuss the risks involved. Some donors have experienced complications and even death after donating, which had devasting emotional consequences for some recipients. The risks are real and have an impact upon the recipient as well. Recipients need to be assured the donor is well informed of the donation process and the risks involved. If there are problems after donation, the recipient needs to realize the complications are not the fault of the recipient. Some donors might recieve the best care possible but in any major surgerical procedure, there are risks. If the donor's care was poor, the donor or recipient are not at fault. The recipient must realize the donor had the same faith in their transplant team as did the recipient, so any problems are not due to the recipient. There have been cases where even blood related recipients have chosen to severe ties with the donor and/or family members of the donor after complications developed. Recipients must be prepared to deal with the "what if's" before transplantation so relationships do not suffer, should problems arise.

If a recipient chooses not to have a Living Organ Donor, the potential donor must realize this is their choice. It is not a negative feeling towards the person offering to become a Living Organ Donor. The refusal is most likely due to the fact the recipient is so emotionally attached, they do not want to put the person at risk or have them suffer any discomfort. The level of risk for Living Organ Donor varies depending upon the type of organ transplanted. Some recipients are not prepared or might think the potential Living Organ Donor is not prepared to consider living organ donation. Some recipients realize they would not be able to emotionally cope, if the Living Organ Donor experienced complications. Sometimes the recipient is a parent and some parents have strong feelings about protecting their children even though the children are adults. This is not a bad thing, it is personal and should be accepted as the recipient's choice.

Sometimes the recipient has complications after donation. The donor and recipient must realize this is a risk and not a reflection upon the donor or recipient. Rejection is a real risk for the recipient along including the risks of any type of major surgery. If the recipient rejects the organ, the Living Organ Donor needs to know this is not the fault of the Living Organ Donor. Some recipients have complications that are resolved, while others do not. Some recipients have even died after transplantation. The Living Organ Donor needs to realize they have given a gift to the recipient no matter how well the organ functions for the recipient. Both recipient and Living Organ Donor need to support each other during this whole process before and after donation.

Discuss the Living Organ Donation with your employer. While most employers are very supportive of Living Organ Donors, there have been some who viewed the Living Organ Donor Transplant as a elective surgery. Most Donors rely upon a combination of vacation time, sick leave time and/or Short Term Disability. Write a Letter to your employer and ask how your time off work will be covered. Ask if there are provisions for coverage if there are complications and you need to be off work longer than usual.

Discuss the Living Organ Donation with your family and what support is available if you should be off work longer than anticipated. If you run into difficulties, call your local utility companies and ask if they will defer payments and explain the situation. Before you donate, discuss a plan with your family members. Some family members are more than willing to assist you with your income. While one family member might not be able to supply you with monies to cover all your expenses, many are willing to split the costs. For instance, one family member might pay your electric bill, another your phone bill, another buy groceries. If you are a family member reading this information, go to other family members, draw up a plan and present it to the Living Organ Donor. Many donors feel hesitant in asking for help, just preparing a plan for them will help put their mind at ease and make them feel as though they are not alone in this donation.

2. MEDICAL COSTS - Before you donate, write a letter to the transplant center and request a letter stating how medical costs will be paid. Request how medications needed after transplant such as pain medications will be paid. Some donors have experienced problems getting medications paid. Others had to pay for their own medications or furnish their own insurance card, in order to obtain pain medications before leaving the hospital. These problems need to be discussed before donating. You don't need to be sitting in the hospital ready for discharge and realize you don't have the monies for the co-pays to obtain the pain medications. In the letter ask for them to put information regarding medical treatment you might need post donation should you need treatment at a local hospital where you live. Some donors donate at centers far from their home. Once released, they might have complications and not be able to return to the center if the issues require immediate intervention.

3. HEALTH INSURANCE - While some donors do not have health insurance when they donate, it would be beneficial to have a health insurance policy in place before donating. Some donors have experienced health issues after donating, only to find the transplant center or the provider covering the donor surgery deny the health issue is a complication related to the surgery. Even though the donor was healthy, cleared of all health issues before donation, the problems after donation are not recognized as related to the donation. These donors have either used their own private insurance company or personal funds to obtain medical treatment. Remember just because you have a personal insurance policy, your treatments might not be covered. You need to review your personal insurance policy regarding coverage. Most donors have found they have not experienced problems using their personal insurance if the hospital or the recipient's provider denies the health issue as related to donation.

Denial of insurance can be an issue. Some donors have expressed problems in obtaining health and life insurance after becoming a Living Organ Donor. Some donors have been denied insurance, while other have experienced an increase in their premiums. It will all depend upon whether the insurance provider has a "pre-existing" clause in their policy. Some donors have experienced just the opposite obtaining insurance. Some insurance companies view the Living Organ Donor as a healthy person since they could not have donated unless healthy. Check with the provider concerning their policies.

1. Pain - Pain is common amongst all Living Organ Donors. The type of pain and severity will depend upon various factors. One factor depends upon the organ donated and type of surgery used to recover the organ. In the past, an open nephrectomy was used to remove the kidney while many centers now use a laproscopic method. The laproscopic method is usually less painful with a shorter recovery period. Another factor to consider is all people have different levels of pain tolerance. If someone's pain is more severe than another's, this is not a reflection upon the donor, rather just the way their body was made.

Living Organ Donors need to discuss pain management options with their surgeon and anethesiologist before surgery. People react differently to certain medications. If you have experienced problems with pain medications such as nausea and vomitting, you need to alert the surgeon to this issue. One medication can be effective for one person while it doesn't relieve pain for another. Inform your surgeon what types of medications have worked for you in the past. Another thing to address with your surgeon is medication management after surgery for common ailments such as a headache. Some doctors suggest certain over the counter medications be avoided depending upon the organ in which they are processed. For instance, some doctors advise people with one kidney avoid Ibuprofen.

2. Infection - Infection is a common risk with any type of surgery. Infection is a serious issue and should not be ignored. While in the hospital the donor should alert the nurse and/or surgeon to any problems they might be experiencing. The Living Organ Donor should not just wait it out and see if it resolves on it's own. After the donor is released from the hospital, they should should contact their surgeon or private physician immediately, if problems arise. If the donor is experiencing severe problems or can't contact a doctor, they should go to the local ER. The donor must make sure they finish all medications prescribed and follow-up with a doctor as suggested. Just because the donor is feeling better they shouldn't ignore medical follow-up.

3. Organ Failure - There have been Living Organ Donors who have needed transplantation after donating an organ. The total number of Living Organ Donors who have needed transplanted after donation is not known. There are several reasons for the lack of numbers. OPTN didn't start collecting demographic data on Living Organ Donors until 1987. The OPTN didn't begin collecting Social Security Numbers on Living Organ Donors until 1994, which means they can't track individual Living Donors until after that time. OPTN follow-up data collection on Living Organ Donors didn't begin until 1999, which means they do not have data on Living Organ Donors before that time, other than demographics. The OPTN policy to award 4 points to Living Kidney Donors placed on the transplant list didn't go into effect until September of 1996. The OPTN is reliant upon the centers notifying them when a person placed on the transplant list was a Living Organ Donor. With this information in mind, we must realize the current numbers cited for Living Organ Donors might not reflect the true numbers of Living Organ Donors who needed transplants. In the 1950's, the first kidney transplant in the US was done using a Living Kidney Donor. Living Organ Donors paved the way for organ transplantation.

4. Recovery - Recovery will depend upon the type of organ recovered, type of surgery used in recovering the organ, complications and the Living Organ Donor's own body. Most donors state they feel tired and need frequent naps after donation. The Living Organ Donor should realize their body is compromised and in the process of healing. Any type of surgery has a healing process and the body needs to rest. The Living Organ Donor's body is also trying to adjust the loss of an organ or part of an organ. This process of readjustment takes time and the donor must listen to their body. This is not the time to push yourself and try to find your limitations. The Living Organ Donor needs to take time to heal properly.

Sensitivity at the incision site, even month later has been known to occur with Living Organ Donors. Bleeding, collapsed lungs, pneumonia, plueral effusion, bowel problems is a risk and has occured with any major thoracic and/or abdominal surgerical procedure. Lymphatic leaks and adrenal gland disfunction have been expressed by kidney donors. Some liver donors have noticed increased swelling and acites with donation.

Some problems take time to develop and/or can occur at anytime. Just because you have been released from the hospital, doesn't mean you are in the clear of developing complications. If you have any problems such as severe pain, breathing, excessive weight gain, redness/drainage/heat at incision site or anything that seems abnormal contact the surgeon immediately. If you can't reach the surgeon or the problem is severe call 911.