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BLOG: WHY IS DONATING A KIDNEY SO HARD

INTRODUCTION

I recently started a group on Facebook called, " Why Is It So Hard To Donate A Kidney?"
https://www.facebook.com/share/g/B5gqoPe8EsqoeJtd/?mibextid=A7sQZp

I was inspired to start the group because s number of my friends have begun or completed the process of donating a kidney and have complained about the difficulty in doing so either in terms of rejection or the slow response of the transplant center staff to answer questions or to disclose test results.

As a result of these statements about difficulties in donating, I began to investigate and do a little research. As a Kidney Transplant Recipient, I have always thought donors were given more of a sympathetic path. I was wrong!

A REVIEW OF THE PROCESS: WHAT IS LIVING DONATION?

Living donation refers to a kidney transplant where a living person donates one of his/her good kidneys to someone else.

There are 2 types of living kidney donation:

A. Direct Donation: where the living kidney donor chooses a specific person with kidney disease that they want to donate to. Examples include a family member, co-worker, friend or a specific person in need of a kidney transplant.

B. Non-Directed Donation: Here the living donor does not have a specific Recipient in mind, but donates the kidney to a complete stranger. An example of this is a Paired Donation Program, where the Potential Recipient trades his non-matching donor to a recipient that the donor matches and in return, gets a donor from the second recipient that matches the original donor but doesn't match recipient # 2, or the charitable donation by the original non-matching donor moves the original recipient to the top of the kidney transplant list and the next donor who matches becomes his/her donor.

WHO CAN DONATE A KIDNEY: WHAT ARE THE REQUIREMENTS TO DONATE?

Every state and Kidney Transplant Center may have different requirements, but in general, to be a Living Kidney Donor one must:

A. Be 18 years of age or older;

B. Have 2 healthy, working kidneys;

C. Be healthy enough to donate.

AM I HEALTHY ENOUGH TO DONATE: CAN I MEET THE REQUIREMENTS OF A FULL AND COMPLETE HEALTH EVALUATION FROM THE TRANSPLANT CENTER?

Medical Conditions can be a cause for disqualifcation as a Potential Donor. You must be healthy enough to donate a kidney or certain medical conditions may disqualify you.

All Kidney Transplant Centers in the United States will require the potential Living Kidney Donor to undergo a full health evaluation before they will be permitted to donate a kidney. This evaluation will help the Donor Transplant Team decide if the potential donor us ready, mentally and physically to donate a kidney & if they are healthy enough to do so

This is where many Potential Kidney Donors get disqualified, discouraged or tripped up in the process. The Potential Donor will undergo many tests, exams and interviews to make this determination, according to the American Kidney Fund including:

"Blood tests, such as to learn your blood and tissue types;

Urine tests;

Heart and lung tests;

Blood pressure check;

A spiral CT (computed tomography) scan or other imaging of your kidneys;

Colonoscopy to test for colon cancer if you are older than 50;

Prostate exam if you are a man;

Mammogram (test for breast cancer) and Pap smear (test for cervical cancer) if you are a woman;.

You can get all of these tests at a time that fits your schedule, without having to stay overnight in a hospital.

You will also talk with a social worker. They will ask questions to make sure that you are mentally and emotionally ready to donate a kidney and that you have a support system to help you after the donation surgery.

If the donor evaluation team decides that you are healthy and you are a good match for the person getting your kidney, you may be approved to donate your kidney."

Throughout this entire process, the Potential Donor is continually asked questions to the effect, "are you sure you want to do this?"

WHO MAKES UP THE DONOR EVALUATION TEAM?

The donor evaluation team usually includes these team members:

Social workers who review your social support system and finances and help you with any challenges, such as emotions, physical side effects or finances:

Dietitians who review your eating habits and activity level and can help create a plan to make healthy choices before and after donation surgery;

Transplant surgeons who do the donation surgery;

Doctors who have special training in a certain area of medicine such as the heart, kidney or liver. They help make sure you are healthy enough for surgery;

Living donor coordinators who help organize your evaluation, prepare you for surgery and help coordinate follow-up care after surgery;

A living donor advocate who will make sure your rights are protected and that your choice to donate is voluntary.

WHAT TYPES OF THINGS MIGHT DISQUALIFY SOMEONE AUTOMATICALLY FROM DONATING A KIDNEY?

A. Age: age is sometimes given as a reason to disqualify. Depending on your transplant center, the minimum age to be a kidney donor is 18-25 depending on your transplant center. There is no official maximum age limit, however; certain centers have their own set limits and it tends to be more difficult for an older person to qualify to donate. According to the Organ Procurement and Transplantation Network, (OPTN) only 2.4 %, of living kidney donors in the US have been over 65 & only 23% have been between the ages of 50 & 64.

With the invention of new technology, recently this number has been increasing. In 2023, 6.4% of donors have been over 65 and 31.9% have been between 50-64. The NKR has helped people to donate in their late 70's and one man was 84.

B. Weigh/BMI : Weight or Body Mass Index is another potential disqualifer. A BMI of 30-35 falls into the group of persons felt to be obese, making surgery more risky and raising the possibility of developing diabetes or other complications. If the BMI is over 35, those potential donors are usually rejected. From 30-35, they are asked to lose weight. Communication after weight loss may be an issue. Some centers may wait a while to see if the weight stays off.

C. Disease or Medical Condition: Kidney Donors must be healthy to donate.They may be disqualified if they have a serious health condition.

There are some health conditions that may prevent you from donating a kidney, including:

Heart, lung or blood vessel diseases;

Uncontrolled High blood pressure, in most cases;

Kidney disease;

Diabetes;

Cancer, except for certain skin cancers;

Hepatitis;

Acute or recurring infections

Serious mental health conditions; A psychological examination will be conducted to determine if you are completely voluntarily and free of pressure or guilt in your decision to donate a kidney.

Certain infections, such as HIV;

Drug or alcohol use disorder;

Being very overweight (obese);

Drinking alcohol to excess;

The NKR recommends that you do not disqualify yourself if you have one of these conditions, but you should allow the transplant center to do that. Medical science, guidelines and criteria are constantly changing , and they may have an answer for you. An example of such a change is with HIV. Prior to 2019, this was an automatic disqualifyer, now HIV to HIV Transplants are more common in the US.

D. Mental Health Issues: You may also be disqualified if you have serious mental health issues, are misusing drugs or alcohol, have dimensia or are mentally compromised in a way that would make a kidney transplant difficult.

Most mental health issues are not alone a disqualifyer and the transplant team may have individual recommendations to help.

E. Coercion:. Donations must always be voluntary. If they feel there is pressure being placed on the donor or compensation is involved ( not reimbursement from legitimate sources) you might be disqualified.

F. Options for Disqualified Donors: Many conditions can be managed or improved, your transplant center can help make recommendations. You can seek a 2d opinion.

G. NKR DONOR SHEILD: Through the National Kidney Registry's Donor SHEILD Protections, some of these issues can be addressed if you qualify. Donor Sheild Protections include:

I. Lost wage reimbursement up to $2,000/wk for up to 6 weeks;

Ii. Travel and Dependant Care: Up to $6,000 for Travel and Dependant Care Costs;

III. Kidney Prioritization: In the event the donor ever needs a Kidney, all living kidney donors in the US are automatically prioritized for a deceased donor transplant if they ever need a transplant. Kidney prioritization includes living kidney donor transplants and transplants through NKR's Voucher Program, and Kidneys for Life Program, which ensures better matches & less graft failures.

IV. Voucher Donation: This is a type of living donor assistance that allows a donor to donate to help someone with a kidney transplant in the future. There are 2 types of vouchers, a standard voucher & a family voucher.

a. Standard voucher: you can donate according to your schedule while providing a voucher to someone in need. When the voucher holder is ready, they can activate the voucher, and be prioritized for a kidney transplant.

b. Family voucher: The donor can donate according to his schedule while providing up to 5 family members with vouchers who are not in immediate need of a transplant.

WHAT ARE THE BENEFITS AND RISKS OF DONATING A KIDNEY!

WHAT ARE THE POSSIBLE BENEFITS OF DONATING A KIDNEY!

Some of the possible benefits of donating a kidney are to:

Help the recipient (the person who gets your kidney) live a longer, healthier life;

Save the life of another person;.

Better understand your own health and health problems through the in-depth evaluation;

WHAT ARE THE POSSIBLE RISKS OF DONATING A KIDNEY?

When donating a kidney, there are possible physical, emotional and financial risks. The donor evaluation team will review the possible risks with you. They will not let you donate if you have a high risk.

PHYSICAL RISKS:

Kidneys Donation involves major surgery which has risks like bleeding, infection, blood clots, and nerve damage.

There are risks to any surgery. Possible risks from surgery include:

Pain at the surgery site;

Bloating;

Feeling weak and tired ;

Bleeding and blood clots;

Problems from being put to sleep, such as pneumonia (lung infection);

Blocked bowel (being unable to pass stool, or poop);

Infection;

A scar from the surgery;

Feeling sick to your stomach;

Possible Death: Recently researchers at NYU Langone Health found the risk of death from donating a kidney had gone down to less than 1 death in every 10,000 kidney donations from a 3 per 10, O00 cases risk. Although it is lower, the researchers caution that risk still exists.

EMOTIONAL RISKS

After surgery, some people who donate a kidney may have:

Anxiety or feel guilty if the kidney they donated isn't working well;

Stress;

Depression;

Fear;

Talk with your donor evaluation team during evaluation and after donation for help coping with your feelings.

FINANCIAL RISKS

Medicare, Medicaid or the kidney recipient's insurance will cover the medical costs of donating a kidney. But most insurance companies do not cover:

Time off from work;

Childcare: If you have young children, or other b dependants, you'll need to consider who will care for them during the evaluation, surgery and recovery.

Travel, parking and gas during the donation process;

Hotel costs during the donation process;

Meals;

There may be programs to help with the costs that insurance will not cover. Talk with your donor evaluation team to learn more.

A possible solution is the Donor Sheild Protection from the National Kidney Registry...

Donation can sometimes change your ability to get or afford health, disability or life insurance. Learn more about disability insurance and government help to pay for the donation process.

Employment issues may crop up if your employer is not supportive of your Kidney Donation.

You may also have issues getting work in military service, law enforcement, aviation and fire departments because they may not accept people with only one kidney.

One possible future solution is the Living Donor Protection Act. The act if passed would:

Prohibit discrimination against living donors in insurance, employment, and other areas of life
Ensure that living donors have Family and Medical Leave Act (FMLA) protections to take time off work to donate and recover

Require the U.S. Department of Health and Human Services (HHS) to update materials on living organ donation to educate the public
Help change how chronic kidney disease (CKD) is identified and treated

The LDPA would:
Prevent insurance companies from denying, limiting, or charging higher premiums for life, disability, or long-term care insurance to living donors

Codify the Department of Labor's (DOL) opinion that organ donation is protected under FMLA
Direct the HHS to update materials on living organ donation to reflect new protections
This enables a living donor to take time off if work and recover from kidney donation under the directive from the department of labor, to prevent firing, demotion or wage loss as a result of donating a kidney. The DOL has said that the Family Medical Leave Act applies, which allows eligible employees to take up to 12 work weeks of unpaid leave during any 12 month period to care for a seriously I'll family member.

The bill would also require that within six months after enactment, the Secretary of Health and Human Services review and update materials related to living organ donation in order to educate the public on the benefits and risks of living organ donation and the impact of living organ donation on the access of a living organ donor to insurance.

MATCHING THE RECIPIENT

One of the major qualifications requirements is that you must undergo a medical exam to ensure that you are a match for the recipient. This includes blood and tissue typing & a crossmatch test to see if your blood cells are compatible with the recipient. This may include a newer test for epilet matching. If you are incompatible, you may not be able to donate to that person. One solution here is to consider entering a Paired Donation Transplant Program.

POSSIBLE SIDE EFFECTS OR HEALTH PROBLEMS AFTER DONATING A KIDNEY

After I donate a kidney, will I have any side effects or health problems?

After you recover from the donation surgery, you should feel and be well. You can live with just one healthy kidney. Your remaining kidney will be able to do most of the work of both of your kidneys.

It is rare to have long-term physical problems from donating a kidney. But people with one kidney may have a higher chance of high blood pressure, which doctors may treat with medicine.

POSSIBLE COMPLICATIONS FROM THE KIDNEY SURGERY ITSELF

What is kidney donation surgery like?

Most kidney transplant surgeries are done laparoscopically. A laparoscopic surgery is a type of surgery that uses very small cuts on the body and a laparoscope, which is a thin, lighted tube used to see inside the body. In kidney donor surgery, the surgeon makes small cuts (only a few inches long) on the donor's stomach and removes the kidney.

The surgery takes two to three hours and the donor usually recovers in the hospital for one to three days.

After Kidney Donation, it's important for the Kidney Donor to have regular health checkups, including kidney function tests and blood pressure checks.

The Mayo Clinic points out that there may be long- risks from Kidney Donation. Although there are few long-term risks for healthy donors, risks still exist.

Those long-term risks include:

A. The possibility that the Kidney Donor may slightly increase his risk of kidney failure for himself. This is especially true for Black men. There's less than a 1% chance of future kidney failure after donating, but the risk is still there.

B. Growth of the Donor's remaining kidney; it gets a little bigger because it takes on extra blood and has to work a little harder to filter waste.

C. The normal risks from any major surgery.

SELF- EVALUATION: QUESTIONS TO ASK YOURSELF BEFORE DONATING A KIDNEY

You may find it helpful to ask yourself these questions before you decide:

Why do I want to donate my kidney to someone else?

What other questions do I have about the donation process or the risks and benefits?

Am I ready to deal with any physical, emotional and financial problems during and after donation?

What will happen if I have unexpected problems after surgery?

Who can I rely on for support during surgery and recovery?

How will I feel if my donated kidney does not work? Will it affect my relationship with the person who got my kidney?

Will I be changing my job in the near future? If so, how would donation affect my ability to get a job or life insurance?

Your transplant center has a social worker who can help you make your decision. You may also want to talk about living kidney donation with people you trust, such as family and friends.

You can stop the donation process at any time and for any reason.

CONCLUSIONS:

From the Cleveland Clinic :

"Deciding to donate a kidney is a big decision, and the process of becoming a donor can take time. You must go through extensive tests to make sure the donation won’t compromise your health. And you must be fully aware of the risks and complications that may arise after donating a kidney. Still, many people willingly and proudly go through the process to save a loved one’s life and celebrate their new, healthy chapter.

Talk to a healthcare provider if you have any questions. They can help you decide if you’re a good candidate to donate a kidney and discuss your risks."

REFERENCES:

What To Consider Before Donating a Kidney
https://www.kidneyfund.org/kidney-donation-and-transplant/organ-and-tissue-donation/what-consider-donating-kidney#what-is-living-donation

https://weillcornell.org/services/kidney-and-pancreas-transplantation/living-donor-kidney-center/about-the-program/risks-and-benefits-of-living-donation

https://www.ajkd.org/article/S0272-6386(22)00723-5/fulltext

https://www.mayoclinic.org/tests-procedures/nephrectomy/expert-answers/kidney-donation/faq-20057997#:~:text=Kidney%20donation%20involves%20major%20surgery,2%20nights%20in%20the%20hospital

https://www.kidney.org/transplantation/what-to-expect-after-donation#:~:text=What%20are%20the%20long%2Dterm,Reduced%20kidney%20function

https://my.clevelandclinic.org/health/procedures/7457-kidney-donation

https://optn.transplant.hrsa.gov/patients/by-organ/kidney/questions-and-answers-for-transplant-candidates-about-the-kidney-allocation-system/#:~:text=It%20is%20hard%20to%20find,system%20that%20rejects%20most%20kidneys.

https://www.mayoclinic.org/tests-procedures/nephrectomy/expert-answers/kidney-donation/faq-20057997

https://my.clevelandclinic.org/health/procedures/7457-kidney-donation

https://www.kidneyregistry.com/for-donors/kidney-donation-blog/is-life-harder-after-donating-a-kidney/

https://www.kidney.org/transplantation/what-to-expect-after-donation

https://www.nhsbt.nhs.uk/organ-transplantation/kidney/receiving-a-kidney/living-donor-kidney-transplant/

https://www.pennmedicine.org/for-patients-and-visitors/find-a-program-or-service/transplant-institute/living-donor-kidney-transplant/living-with-one-kidney

https://www.kidney.org/news-stories/kidney-donation-safe

https://www.kidney.org/kidney-topics/long-term-risks-living-donation#:~:text=Sign%20Up%20Today-,New%20Health%20Issues,can%20get%20pregnant%20after%20donation.

https://www.kidney.org/transplantation/what-to-expect-after-donation

https://www.kidney.org/kidney-topics/becoming-living-donor#:~:text=Living%20kidney%20donation%20is%20when,surgery%2C%20and%20help%20you%20recover.

https://www.kidneyfund.org/kidney-donation-and-transplant

https://www.nhsbt.nhs.uk/organ-transplantation/kidney/receiving-a-kidney/living-donor-kidney-transplant/#:~:text=20%2D25%20years-,Receiving%20a%20kidney%20from%20a%20living%20donor,can%20be%20a%20living%20donor?

https://www.kidneyregistry.com/for-donors/am-i-qualified-to-donate-a-kidney/