Monday 22 June 2015

Q&A about kidney donation: A donor's perspective

What is living donation?

Living donation takes place when a living person donates an organ (or part of an organ) for transplantation to another person. The living donor can be a family member, such as a parent, child, brother or sister (living related donation).
Living donation can also come from someone who is emotionally related to the recipient, such as a good friend, spouse or an in-law (living unrelated donation). Thanks to improved medications, a genetic link between the donor and recipient is no longer required to ensure a successful transplant.
In some cases, living donation may even be from a stranger, which is called anonymous or non-directed donation.

What organs can come from living donors?

The organ most commonly given by a living donor is the kidney. Parts of other organs including the lung, liver and pancreas are now being transplanted from living donors.

What is the recovery period and when can the donor return to normal activities?

The length of stay in the hospital will vary depending on the individual donor's rate of recovery and the type of procedure performed (traditional vs laparoscopic kidney removal) although the usual stay is 4 to 6 days. Since the rate of recovery varies greatly among individuals, be sure to ask the transplant center for their estimate of your particular recovery time.
After leaving the hospital, the donor will typically feel tenderness, itching and some pain as the incision continues to heal. Generally, heavy lifting is not recommended for about six weeks following surgery. It is also recommended that donors avoid contact sports where the remaining kidney could be injured. It is important for the donor to speak with the transplant staff about the best ways to return as quickly as possible to being physically fit.

How does living donation affect the donor?

People can live normal lives with only one kidney. As long as the donor is evaluated thoroughly and cleared for donation, he or she can lead a normal life after the surgery. When the kidney is removed, the single normal kidney will increase in size to compensate for the loss of the donated kidney.
Physical exercise is healthy and good for you. However, it's important for someone with only one kidney to be careful and protect it from injury. Some doctors think it is best to avoid contact sports like football, boxing, hockey, soccer, martial arts, or wrestling. Wearing protective gear such as padded vests under clothing can help protect the kidney from injury during sports. This can help lessen the risk, but it won't take away the risk. Talk to your healthcare provider if you want to join in contact sports.
Donors are encouraged to have good long-term medical follow-up with their primary care doctors. A urine test, a blood pressure check and a blood test for kidney function (GFR) should be done every year.

Does living donation affect life expectancy?

Living donation does not change life expectancy, and does not appear to increase the risk of kidney failure. In general, most people with a single normal kidney have few or no problems; however, you should always talk to your transplant team about the risks involved in donation. Some studies report that living donors may have a greater chance of developing high blood pressure. It is recommended that potential donors consult with their doctor about the risks of living donation.

What can I expect emotionally after donating a kidney?

After donation, living donors often report a wide range of mixed emotions, from joy and relief to anxiety to depression. The process of getting through the evaluation and surgery can be so time-consuming that donors do not always have time to process everything they are feeling. It is normal for these emotions to come to the forefront after the donation and transplant take place.
Living donors generally rate their experience as positive. Different studies indicate that between 80-97% of donors say that in retrospect, they would have still have made the decision to donate.
However, concerns about the recipient's outcome (as well as the donor's recovery) can contribute to feelings of anxiety, and may donors report a feeling of "let down" afterwards. Feelings of depression among living donors are not uncommon, even when both donor and recipient are doing well.
While extensive data on these issues is lacking, some studies have reported the following psychological outcomes:
  • Less than 1% regretted the decision
  • 3 to 10% reported depression
  • 10% reported "family conflicts"
  • 7% reported anxiety disorders
  • 16% concerned about negative financial consequences of donation
  • 3 to 15% concerned about a negative impact on their health
Living donors who are struggling with these issues are encouraged to:
  1. Talk to the transplant hospital's Transplant Social Worker for advice
  2. Seek professional counseling or other outside help to manage difficult emotions, and
  3. Talk with other living donors who can be particularly supportive if they have experienced the same feelings.

What are the long-term risks of donation?

You will also have a scar from the donor operation- the size and location of the scar will depend on the type of operation you have.
Some donors have reported long-term problems with pain, nerve damage, hernia or intestinal obstruction. These risks seem to be rare, but there are currently no national statistics on the frequency of these problems.
In addition, people with one kidney may be at a greater risk of:
  • high blood pressure
  • Proteinuria
  • Reduced kidney function
You should discuss these risks with your transplant team, and ask for center-specific statistics related to these problems.

Are there any dietary restrictions after donation?

After donation you should be able to go back to a regular, healthy lifestyle. If you are in good health, there will probably not be any specific dietary restrictions. Talk with your transplant team about your specific dietary needs.

Will I be able to obtain insurance coverage after donation?

Your health insurance should not be affected by donation. The Affordable Care Act has made it illegal for health insurance companies to refuse to cover you or charge you more because you have a pre-existing condition.
However, some living donors have reported either having difficulty getting life insurance or facing higher premiums for life insurance. In such cases, it may be necessary for transplant centers to inform the insurance carrier of existing data that report that the patient is not at increased risk of death because of donation.
If you already have insurance, check your insurance contracts carefully to see if living donation would affect your current policies. You might also want to consult with a lawyer who is knowledgeable about insurance law.

What if I donate, and need a kidney later?

This is something potential donors should discuss with the transplant team. Talk to your transplant team about any pre-existing condition or other factors that may put you at a higher risk of developing kidney disease, and consider this carefully before making a decision about donation.
There have been some cases in which living donors needed a kidney later - not necessarily due to the donation itself. It is considered a potential risk of donation. UNOS policy give priority on the waiting list to living donors.

Can I become pregnant after I've donated kidney?

Pregnancy after donation is possible but is usually not recommended for at least six months after the donation surgery. Living donors should talk to their ob/gyn and transplant team before getting pregnant about pregnancy and make sure that they have good pre-natal care.
Generally, living kidney donors do well with pregnancy after their donation. However, some studies have shown small increases in some risks like gestational diabetes, pregnancy-induced hypertension, protein in the urine and pre-eclampsia. Living donors should inform their ob/gyn about their donation to allow monitoring for these potential complications.

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