COPING WITH A RECIPIENT'S POST-TRANSPLANT PROBLEMS OR DEATH
After an organ transplant, the recipient may experience a rapid improvement in his or her health that is often apparent
simply by observing the recipient's physical appearance. The recipient, the donor and others begin to see bright rays of hope
and a future full of promise. They might even start making plans for future events. Once this positive change
begins happening, those acquainted with the recipient might begin to lose sight of the fact that very recently the recipient
was extremely ill, remains quite fragile and is vulnerable to medical problems, despite receiving a transplant.
There is always the risk after organ transplantation that the recipient will have problems such as infection, rejection
of the organ or even death. For the Living Organ Donor, the news of such problems can be a devastating blow and is probably
the most difficult experience a Living Organ Donor can face.
Sometimes the medical problems recipients experience can be anticipated and treated successfully. Other problems
can be very serious, difficult to manage and may pose a risk to the life of the recipient. There are some problems such
as a stroke, that may be totally unforeseen and might be only indirectly related to the transplant.
The need for support for the Living Organ Donor at this time from family, friends, and professionals, cannot be overemphasized.
No amount of preparation by the transplant center staff prior to the transplant can be truly prepare the Living Organ Donor
for this experience. During the evaluation phase of Living Organ Donation, the Living Organ Donor can be provided with
information about the risks to the recipient, how to cope with recipient problems or even how to deal with the death of
recipient BUT until the problems occur, the Living Organ donor may not fully internalize the reality and seriousness of such
problems. Just a drivers of cars would likely never drive if the dwelled upon idea they could become involved in a serious
accident, Living Organ Donors would find it difficult, if not impossible to proceed with Living Organ Donation if they dwelled
upon the idea that recipients might have serious complications or die.
Thought it is illogical, the donor often feels a sense of responsibility for the recipient's problems. He or she
may feel a sense of personal failure. To the observer, it is easy to see the Living Organ Donor is not responsible for
the recipient's problems, even the Living Organ donor may know this intellectually. Nevertheless, the Living Organ Donor's
emotions might give them a different message, which may take a long time for the Living Organ Donor's emotions and mind to
agree.
While the recipient is experiencing problems, the Living Organ Donor may still be in the physical healing process from
their own surgery. The stress the Living Organ Donor experiences may exacerbate any physical problems the Living Donor
may be having or slow down the Living Donor's healing process.
If the recipient's situation improves and/or is resolved, the Living Donor experiences relief but may remain apprehensive
the problems may occur again. They might also be afraid other problems will develop so it may be quite some time before
the Living Donor can relax and be relieved of their anxiety.
RECIPIENT DEATH
1. THE LIVING DONOR'S INITIAL REACTION - If a recipient dies, the Living Organ Donor may go into a tailspin
of extreme anger, depression, questioning, self-blame and sorrow. The Living Donor might become depressed, or even suicidal.
It is important for those close to the Living Donor to be watchful, supportive and not to dismiss the death of the
recipient as "just a risk the donor must accept". Intervention by loved ones may be required to assist the Living Donor
in obtaining professional help if the Living Donor doesn't initiate seeking help. The Living Donor's transplant center
might not have a formal plan for helping the donor if the recipient dies. The Living Donor may need to seek their
own assistance in dealing with this very tragic situation. Depending the severity of the depression, counseling may be provided
by a clergy person or the Living Donor may need more professional invtervention from a licensed professional such as a psychologist
or psychiatrist. Since the Living Donor may be healing from their own surgery, the healing process may be slowed due
to the stress caused by the recipient's death. The Living Donor may be unable to return to work or resume normal activities
as anticipated.
2. THE LIVING DONOR'S UNIQUE LOSS - Like other, the Living Donor may experience stages of grieving that
accompany the death of a loved one. The Living Donor may not experience all stages of grieving in sequence. The stages can
occur at the same time, in various orders or the donor may go back to a stage they already experienced. The time for each
stage can vary depending upon the person, their coping skills, past experiences, support of family/friends and professional
intervention. Stages of grieving can be denial, anger, bargaining, depression, and acceptance.
However, unlike the death of a loved one, a Living Donor may experience additional aspects related to their loss.
- When the recipient dies, the Living Donor literally loses a living part of themself. The organ they donated is no
longer alive and in some mysterious way the Living Donor is often deeply affected by this loss. Some people liken it
to the feelings parent's have when losing part of themselves when a bably dies through miscarriage or at birth. In addition,
the thought the Living Donor's organ has been cremated or buried with the recipient may be eerie and emotionally disturbing
to the Living Donor.
- The Living Donor also loses any hope of seeing the recipient recover and live a higher quality, extended life. This may
lead to a sense of futility if the Living Donor concludes their gift was given in vain.
- If the Living Donor was related or close to the recipient and/or able to spend time with the recipient after the transplant,
the Living Donor loses the very unique bond the Living Donor and recipient tend to develop.
- If the Living Donor is acquainted with other Living Donors either personally or online networks who are celebrating successful
transplants, the Living Donor may conclude life has treated them unfairly and become bitter.
3. THE DEATH OF THE LIVING DONOR'S DREAM - The Living Donor dream for the recipient was life itself.
It's not easy to let go of any dream, especially those of living. The end of the recipient's life, no matter when or
how it happens, extinguishes the dream forever. It matters little if the recipient dies from causes directly related
to the transplant or indirectly related such as a stroke. The death may even occur a year or more after the transplant.
It is hard work for the Living Organ Donor to accept the death of a recipient and involves a long difficult process of
letting go.
4. THE DONOR'S GRIEVING EXPERIENCE - During the grieving period the Living Donor might:
- Experience a long period of sorrow which might be longer for than anyone, including the Living Donor expects.
- Question his or her most fundamental beliefs about life's meaning, the concept of "gift", his or her religious convictions
or beliefs about the spiritual nature of life.
- Struggle to find meaning in the experience of losing the recipient.
- Ponder the question "Was it worth it?" (Hopefully, Living Donors will remember they believed it was worth it when they
donated even though there were risks and conclude they did the best they could with the informaiton, beliefs and hopes they
had at the time. No one can expect more than that.
- Blame the transplant center or its staff for the recipient's death even if the recipient died due to circumstances beyond
the transplant centers control. If the transplant center was responsible for the recipient's death, the Living Donor
might fell betrayed and angry.
- Blame themselves for the recipient's death, however illogical it may seem.
- Find life to be very mundane and "gray". They may not find anything to be excited about or challenged for quite some time.
- Conclude they will not find anything that will be personally fulfulling as the experience of Living Organ Donation. Hopefully
this is temporary.
- Consider changing occupations, seeking more meaningful ways of contributing to the world through their work.
- Temporarily resent the physical scar because it is a poignant reminder of the emotional pain they are enduring.
- Often feel stuck and can't seem to find their way back into the normal rhythm of life.
5. HELP FOR THE DONOR - There are several sources of help and support for the donor.
LOVED ONES - The Living Donor can be helped by the love ans upport of those close to them, even though
loved ones might not understand what the Living Donor is experiencing. The Living Donor's overwhelming feeling of loss
reflects the depth of their love for the recipient and the hope the donor had for him or her. It is important for everyone
close to the Living Donor, and the donor themself, to continue to honor the Living Donor's tremendous gift to the recipient.
The Living Donor should never be told to "snap out of it" , they are being "silly" or other similar comments. This
devalues the Living Donor's own sense of the Living Donation experience, shows disrespect for the Living Donor
and can lead to more complex problems. The Living Donor shuld also be gently reminded, if appropriate, not to use this
type of self-talk.
The Living Donor maybe be preoccupied with processing their own grief and become emotionally distan from others.
The Living Donor's loved ones may need to exercise a great degree of patience and "watchful waiting" for a long time.
This may be difficult due to their own grief and need for support. Loved ones may need to rely upon other's
for support instead of expecting support from the Living Donor.
The Living Donor may expect to receive support from the deceased recipient's spouse or relatives but this might be an
unrealistic expectation. The spouse or relatives of the deceased recipient might be so occupied with their own
grief, they may have little awareness of others' needs or little emotional energy to give.
OTHER DONORS - Living Donors can be helped by the support from other Living Donors who have experienced
the same things related to Living Donation. WHile a recipient's death immediate death following transplantation is not
the common norm during transplantation, there are other Living Donors with the similar experience that can give support and
comfort to the Living Donor. These Living Donors can be found on various websites listed on this website. Living Donors
may also contact LODAP for support from other LODAP members who have experienced a recipient's death.
CLERGY OR MEMBERS OF THE LIVING DONOR'S RELIGIOUS GROUP - If he Living Donor is a person of faith,
they might find comfort from clergy members, other members of their faith, or through exercise of familiar religious practices.
Conversely, the Living Donor may turn away from the practice of their religion, considering it to be shallow or lacking
in meeting their needs.
COUNSELING - Psychological counseling can be helpful to the Living Donor, though they may find such help
somewhat limited if the counselor is unfamilira with the "transplant world". If psychological counseling is needed,
the counselor mst, at a minimum, be familiar with and have experience with grief counseling. There is probably much
that is unknown about what the Living Donor experiences when a recipient dies. Hopefully in the future, they dynamics
of the Living Donor experiences of loss will be studied and grief therapy designed specifically for Living Organ Donors will
be developed.
6. THE LIVING DONOR'S FUTURE - After a period of physical and emotional healing, the Living Donor will
hopefully find peace and comfort. They may even be able to reach out, without bitterness or anger to help others.
There will always be emotional scars, but the Living Donor should find the pain of the experience lessens with time.
Living Donors might think about their donation experience every day since they have the physical scars as reminders.
To them, it will probably continue to be very important, though other family members and friends may appear to have forgotten
about it or not understand how important it was and still is to the Living Donor.
The Living Donor might discover changes in the dynamics of groups of friends of which the recipient and the Living Donor
belonged. This may require the Living Donor to make some adjustments in how they relate to those friends.
If the Living Donor and the spouse of the deceased recipient are good friends, the Living Donor may find it emotionally
difficult when, in time, the recipient's spouse begins a romantic relationship with someone new. The Living Donor may
not be on the same grieving "timetable" as the spouse. The Living Donor may know the new relationship is a natural and
postitive occurence, yet fell the spouse is being disrespectful to the recipient's memory. With time, the Living Donor's
feelings should resolve, and hopefully the Living Donor will continue to be part of his or her friend's future, as well as
a valued part of their past.
Hopefully, Living Donors will feel they have benefitted personally from donating, will not regret their donation and
will discover they have grown in ways they never could have imagined. Living Donor can know that even though they were
araid, they were also tremendously courageous and generous. Living Donors should always be extremely proud of their
themselves and their gift. There shouldn't be any guilt or shame on the Living Donor's part. They should remember
their gift will continue to positively affect the lives of many other people in years to come.
LODAP ASSISTANCE
If you are a Living Donor whose recipient is having problems or has passed, and you would like assistance from a LODAP
member, please send an e-mail to Kathryn at
kjones@lodap.com .
Please note LODAP members are not professional counselors. They can share their own experiences and provide emotional
support to other Living Donors. LODAP members cannot offer psychological or psychiatric counseling. Such care
needs to be sought form a licensed professional.
