April is Donate Life Month, a chance to raise awareness of the importance of organ donation and the benefits of organ transplants. Because there is currently no treatment to prevent the development of kidney failure in people with Alport syndrome, this is a topic of great significance within our community.
However, for those either newly diagnosed or unaffected by Alport syndrome or other diseases that make transplantation necessary, the organ donation and transplant process can be confusing and lead to questions. Fielding questions from loved ones while still learning the answers themselves can be challenging. To help, below are some common comments patients with Alport syndrome may encounter and some appropriate responses:
#1: “I’ve heard some transplant horror stories, so I feel much safer on dialysis.”
Fact: The life expectancy of a transplant recipient generally exceeds that of a patient who remains on dialysis. Don’t take every “horror story” you heard or read online as fact. Many individuals with transplant issues have other health ailments or complications of which you may be unaware.
#2: “You’re relatively young so you should receive a kidney off the national waiting list in no time.”
Fact: Waiting times vary per state and depend on numerous factors including which organ(s) is/are needed, age, blood type and the nature of your medical emergency. With over 120,000 individuals on the national waiting list (of which 100,000+ require a kidney), many patients wait years before receiving the gift of life. It should be noted that during this time a patient’s health may drastically decline. According to the United Network for Organ Sharing (UNOS), on average 22 people die a day waiting for a single or multiple organ transplant.
#3: “It should be easy for you to find a kidney donor. I’m sure one of your friends or family members can help.”
Fact: Not everyone who wants to help you can. There are strict transplant criteria including blood compatibility, organ tissue typing, serum cross-matching and antibody tests. The donor’s health is verified by numerous tests including a 24-hour urine capture, EKG, chest X-Ray, psychological examination and more. Many transplant recipients have numerous living donors tested before they find their match.
#4: “I’d like to be a living donor, but my medical bills will be crazy and I’m living paycheck to paycheck as is!”
Fact: The recipient’s insurance will cover the organ removal expenses.
#5: “Now that you’ve had a transplant, you’re cured of your kidney disease, right?”
Fact: Kidney transplantation is a treatment, not a cure. A transplant only serves to replace the malfunctioning organ and in no way eliminates or cures a native disease. With this in mind, ASF continues funding research for a cure.
Which leads to the next question…
#6: “…but your hearing will return after transplant, right?”
Fact: Sadly, this is not the case. Damage to the ears from Alport syndrome is currently irreversible.
#7: “Your new kidney is good for life, right?”
Fact: While some transplants can last for an extended number of years, they are not permanent. Additionally, immunosuppressant pills designed to help combat organ rejection can damage the organ they are meant to protect, reducing the life of the allograft (transplant).
#8: “I’m too old to sign up to be an organ donor now!”
Fact: NOPE! The medical condition of you and your organs, not your age, is the deciding factor when determining if your organs can be shared.
This 93-year old man’s liver was donated after he passed away from a brain hemorrhage. His gift of life saved a woman suffering from end-stage liver disease.
This 85 year-old woman became the oldest living British donor when she opted to donate a kidney claiming, “I don’t need two kidneys to knit.”
It’s also important to note, you are never too young to donate either, as neonatal donors have saved lives through rare transplant procedures and can advance medical treatments via research on their donated organs. If you are too young to legally delcare yourself an organ donor, we encourage you to make your wishes known to your parents or legal guardians.
#9: “I have Alport syndrome so I cannot be an organ or tissue donor.”
Fact: Anyone, regardless of age or medical history, can sign up to be a donor. Alport syndrome leads to damage to your kidneys but your other organs and tissues are unaffected so you can still be a registered organ and tissue donor.
#10: “I’d like to be an organ donor to save a life, but my family and loved ones will be forced to have a closed-casket funeral for me.”
Fact: Organ donation from a single individual can save up to 8 lives including many more when tissue donation is factored in. Organ donation does not disqualify an individual from an open-casket funeral whatsoever.
These aren’t the only misconceptions Alport syndrome patients are likely to hear. Educate yourself on other Organ Donation: Facts and Myths in this informative video featuring Kelly Ripa and Dr. Richard Besser.
You can register today to be an organ donor by going to www.organdonor.gov.
Be sure to check out the additional resources provided below to learn more or if you have other questions we didn’t address.
Organ donation: Don’t let misinformation keep you from saving lives from Mayo Clinic
UNOS – United Network for Organ Sharing (UNOS)
Organ Procurement and Transplantation Network (OPTN) from the US Dept of Health & Human Services
About Donation & Transplantation – The Need Is Real: Data from organdonor.gov