Is your decision well informed?

Living kidney donations save many lives every year. It can be best described as the donation of a kidney from a healthy person, made of his or her own free will. Donating an organ gives you a sense of accomplishment, as you were able to save another person’s life. You can read many blogs where the donors have shared their experiences before and after the kidney transplant. One thing that is common to all of the donors is the gratitude of being able to help a patient in distress.

Kidney transplantation is one of the few transplants in which the donor is living. Getting a kidney from a living kidney donor is certainly more beneficial because of the following facts:

Benefits of living kidney donation

• A kidney donor goes through a battery of tests and procedures to make sure that his kidney is a perfect fit for the receiver. The living donor’s kidney works better than that of a cadaveric donor.
• These tests not only help the recipient but also the donor as even the smallest of ailments can be detected with these advanced tests
• The patient does not require dialysis after the transplant.
• Kidney donors live longer
• One transplanted kidney work as well as two
• As the kidney from a living donor is in a better condition, it often lasts longer than the one transplanted from a deceased donor.
• Surgeons have enough time to plan the surgery, which is not the case when a kidney is transplanted from a cadaveric donor.
• The donor can choose to save someone’s life. This results in unique thoughts and feelings that are specific to this treatment.
• Emotional bonding between the donor, recipient and their families is quite strong. This, of course, is different when it is an anonymous donor.

There are many blogs and websites where the donors and the receivers have shared their experiences while going through the kidney transplant process.

One website that particularly caught my interest is a blog by Michelle Rogers and Nancy Noble. It describes the experiences of both a donor and a recipient at one place. What is even more interesting is that the caregivers of both Mark Noble & Jim Walsh also share their thoughts and experiences, on the role of a caregiver in this complex process. Jim Walsh speaks about his girlfriend Michelle who decided to donate her kidney to Jim’s sister Nancy.

On the other side, Nancy’s husband Mark shares in one post the first thoughts that came to his mind after he came to know about the need for the transplant.

I wondered who would pay and how I could afford it (I even set up a website for fundraising), and, most of all, what would this mean for Nancy AFTER the surgery?  Would she have to wear a mask all the time?  Would she be able to work?  Garden?  Swim?  Travel?  Walk her “miles” of walking she’s used to doing in warmer weather?  I started to wonder all these things. And, as I explored more, I learned more.

Mark shares how the acts of kindness by his relatives, friends, neighbors and even strangers, boosted his and his family’s morale.

My success at being a Living Kidney Donor is a blog written by Amber Woodruff where she shares her story of being a kidney donor. As in most of these cases, the first planned date of surgery and the actual surgery date are often different, sometimes postponed for months. This can bring many anxious moments for the donor.

I would also like to add an interesting article “Beneath the Modest Alter Ego, I See My Superhero” by Angela Balcita, where she shares her story of receiving a kidney, first from her brother and then from her husband. She describes how distressing it can be for a recipient to see the donor in pain. It can be one of the main reasons why you don’t find many blogs written by the kidney recipients. In the podcast, Angela shares how after the pregnancy, she lost her husband’s kidney. At that time a friend of Angela’s decided to donate her kidney, which became Angela’s third transplant. You can read her book review here.

A study “Long-term medical risks to the living kidney donor”, observes that Living kidney donation benefits recipients and society but carries short-term and long-term risks for the donor. This review summarizes the studies that underlie our current understanding of these risks in the first decade after donation, with a view to improving the informed consent process. 

The writer of Donor Diaries shares a list of questions that comes to her mind before the kidney transplant. These doubts may seem small, but there should be a system where a donor can get answers to his/her unanswered questions at any time. She also shared how she felt anxious after the transplant and even the smallest of changes in her body gave her a new reason to worry. She joined a yoga class and found inner peace there.

One study found that there is a Risk of end-stage renal disease following live kidney donation. According to it,

When compared with matched healthy nondonors, kidney donors had an increased risk of end-stage renal disease over a median of 7.6 years; however, the magnitude of the absolute risk increase was small. These findings may help inform discussions with persons considering live kidney donation.

I would also like to add another blog post by a donor and a recipient. The donor shares some useful tips for kidney donors, with topics on issues before, during and after surgery. The mother of a kidney recipient has shared her tips at Helping Someone Who Is In The Hospital With A Sick Kid. This blog is a great place to see how a caregiver/parent feels when his or her loved ones are not in the best of health.

I stumbled upon another blog where Jackie, the donor, has both video graphed her experiences and also wrote posts about them. She has shared her health conditions after four years of surgery. There are many other blogs where you can find information on how the donors are doing at various time intervals post-surgery.

You can find information on the physical well-being of a kidney donor and a recipient. However, the post surgery psychological and physical impacts are often not given the same exposure as the transplant procedure itself. Kidney donation requires a major surgery, and a surgery always involves risks. Thus not only the physical but also the mental attributes are equally important during the healing process –These are further detailed below.

Impact of donation on a Donor

• There may be long-term medical risks to a kidney donor, which we will discuss in detail later in this post
• Every surgery involves complications, for which the donor may not be prepared emotionally
• Financial burden
• Donor may require a longer recovery time, for which he may not be prepared for mentally or financially
• The process of donating a kidney is lengthy due to the tests, assessments
• The donor may experience feelings of anger, regret, resentment, anxiety or depression
• The donated kidney may not function properly in the recipient after transplant which may negatively impact the morale of the donor
• There may be body image problems based on the scars from the procedure
• Insurance companies may not cover all the expenses of donating a kidney.
• Donating a Kidney May Carry Hidden Insurance Costs
• If it was a failed kidney transplant, the donor might start questioning if this was the right decision or not
• Transplanted organs don’t last forever

According to a study on living donors “Psychosocial Assessment of Living Organ Donors: Clinical and Ethical Considerations “As donors are susceptible to psychological complications both before and after donating, we recommend that comprehensive psychosocial services be integrated into a multidisciplinary team approach focused on caring for donors and members of their support system throughout the transplant process. Ideally, care should include pretransplant evaluation and cognitive testing, and where necessary, an in-hospital psychosocial liaison, and posttransplant follow-up. “

My aim is to inform the donor about what lies ahead and should not be seen as any kind of discouragement from kidney donation. I would like to add that behavioral and psychological health, along with the financial and social aspects, should be given the same weightage as physical tests. A donor should be counselled for both the short term and long term physical and psychosocial effects of the surgery so that he or she can make a well-informed decision. More studies in this field will definitely help us motivate more people to come forward for a living kidney donation.

“The purpose of life is not to be happy. It is to be useful, to be honorable, to be compassionate, to have it make some difference that you have lived and lived well.” ⁓ Ralph Waldo Emerson

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