As American Idol comes to a conclusion this week, AI alumni are remembering their time on the show and updating what they’ve been up to since leaving it.
Season 8 contestant Scott MacIntyre was the show’s first visually impaired contestant, who finished in eighth place. Scott has been blind since birth, a rare genetic disorder called Leber’s Congenital Amaurosis.
Congenital Leber’s Amaurosis (LCA) is an inherited condition which affects both the light sensing cells in the retina causing blindness in children as young as two to three months of age. It is inherited as an autosomal recessive trait, meaning that both parents are carriers (they are unaffected but able to pass the trait) and their children have a one in four chance of being affected. It is a rare disease, with only 3 cases per 100,000 births. Symptoms in infants may include nystagmus (jiggling of the eyes) and frequent poking of their fingers in their eyes. Although mostly an eye disorder, neurologic, skeletal, muscular, heart, ear, and kidney abnormalities have been reported in association with LCA. There is currently no treatment for LCA, but research is ongoing.
The disease has also affected Scott’s kidneys, and had a kidney transplant in 2007. Unfortunately, his other kidney also began to fail in 2014, and he was put back on the transplant list. MacIntyre turned to the media to raise awareness about the need for kidney donors. A 23-yr-old mother of three heard his message and got tested. Lo and behold, she was a match for Scott and she donated her kidney to him last June. As Scott told People magazine:
“The anonymous donor heard about my situation and, out of the kindness of her heart, got tested. I can’t even begin to put into words how much I appreciate what she did for me. She gave me the chance to keep living and doing what I love.”
Scott and his wife, Christina filmed his kidney transplant journey and share it here:
If you have advanced and permanent kidney failure, kidney transplantation may be the treatment option that allows you to live much like you lived before your kidneys failed. Since the 1950s, when the first kidney transplants were performed, much has been learned about how to prevent rejection and minimize the side effects of medicines.
But transplantation is not a cure; it’s an ongoing treatment that requires you to take medicines for the rest of your life. And the wait for a donated kidney can be years long.
Healthy kidneys clean your blood by removing excess fluid, minerals, and wastes. They also make hormones that keep your bones strong and your blood healthy. When your kidneys fail, harmful wastes build up in your body, your blood pressure may rise, and your body may retain excess fluid and not make enough red blood cells. When this happens, you need treatment to replace the work of your failed kidneys.
Kidney transplantation is a procedure that places a healthy kidney from another person into your body. This one new kidney takes over the work of your two failed kidneys.
A surgeon places the new kidney inside your lower abdomen and connects the artery and vein of the new kidney to your artery and vein. Your blood flows through the new kidney, which makes urine, just like your own kidneys did when they were healthy. Unless they are causing infection or high blood pressure, your own kidneys are left in place.
The transplantation process begins when you learn that your kidneys are failing and you must start to consider your treatment options. Whether transplantation is to be among your options will depend on your specific situation. Transplantation isn’t for everyone. Your doctor may tell you that you have a condition that would make transplantation dangerous or unlikely to succeed.
If your doctor sees transplantation as an option, the next step is a thorough medical evaluation at a transplant hospital. The pre-transplant evaluation may require several visits over the course of several weeks or even months. You’ll need to have blood drawn and x-rays taken. You’ll be tested for blood type and other matching factors that determine whether your body will accept an available kidney.
The medical team will want to see whether you’re healthy enough for surgery. Cancer, a serious infection, or significant cardiovascular disease would make transplantation unlikely to succeed. In addition, the medical team will want to make sure that you can understand and follow the schedule for taking medicines.
If a family member or friend wants to donate a kidney, he or she will need to be evaluated for general health and to see whether the kidney is a good match.
If the medical evaluation shows that you’re a good candidate for a transplant but you don’t have a family member or friend who can donate a kidney, you’ll be put on the transplant program’s waiting list to receive a kidney from a deceased donor-someone who has just died.
Every person waiting for a deceased donor organ is registered with the Organ Procurement and Transplantation Network (OPTN), which maintains a centralized computer network linking all regional organ gathering organizations (known as organ procurement organizations, or OPOs) and transplant centers. The United Network for Organ Sharing (UNOS), a private nonprofit organization, administers OPTN under a contract with the Federal Government.
UNOS rules allow patients to register with multiple transplant centers. Each transplant center will probably require a separate medical evaluation, even if a patient is already registered at another center.
Kidneys are assigned to the best match regardless of geographic region. The Federal Government continues to monitor policies and regulations to ensure that every person waiting for an organ has a fair chance. The key to making waiting times shorter is to increase the number of donated organs.
How long you’ll have to wait depends on many things but is primarily determined by the degree of matching between you and the donor. Some people wait several years for a good match, while others get matched within a few months.
While you’re on the waiting list, notify the transplant center of changes in your health. Also, let the transplant center know if you move or change telephone numbers. The center will need to find you immediately when a kidney becomes available.
When a deceased donor kidney becomes available, the OPO notifies UNOS, and a computer-generated list of suitable recipients is created. Suitability is initially based on two factors:
If you’re selected on the basis of the first two factors, a third is evaluated:
If you have a living donor, you’ll schedule the operation in advance. You and your donor will be operated on at the same time, usually in side-by-side rooms. One team of surgeons will perform the nephrectomy -that is, the removal of the kidney from the donor- while another prepares the recipient for placement of the donated kidney.
If you’re on a waiting list for a deceased donor kidney, you must be ready to hurry to the hospital as soon as a kidney becomes available. Once there, you’ll give a blood sample for the antibody cross-match test. If you have a negative cross-match, it means that your antibodies don’t react and the transplantation can proceed.
You’ll be given a general anesthetic to make you sleep during the operation, which usually takes 3 or 4 hours. The surgeon will make a small cut in your lower abdomen. The artery and vein from the new kidney will be attached to your artery and vein. The ureter from the new kidney will be connected to your bladder.
Often, the new kidney will start making urine as soon as your blood starts flowing through it, but sometimes a few weeks pass before it starts working.
Your body’s immune system is designed to keep you healthy by sensing “foreign invaders,” such as bacteria, and rejecting them. But your immune system will also sense that your new kidney is foreign. To keep your body from rejecting it, you’ll have to take drugs that turn off, or suppress, your immune response. You may have to take two or more of these immunosuppressant medicines, as well as medications to treat other health problems.
You can help prevent rejection by taking your medicines and following your diet, but watching for signs of rejection-like fever or soreness in the area of the new kidney or a change in the amount of urine you make-is important. Report any such changes to your health care team.
Even if you do everything you’re supposed to do, your body may still reject the new kidney and you may need to go back on dialysis. Unless your health care team determines that you’re no longer a good candidate for transplantation, you can go back on the waiting list for another kidney.
Immunosuppressants can weaken your immune system, which can lead to infections. Some drugs may also change your appearance. Your face may get fuller; you may gain weight or develop acne or facial hair. Not all patients have these problems, though, and diet and makeup can help.
Immunosuppressants work by diminishing the ability of immune cells to function. In some patients, over long periods of time, this diminished immunity can increase the risk of developing cancer. Some immunosuppressants cause cataracts, diabetes, extra stomach acid, high blood pressure, and bone disease. When used over time, these drugs may also cause liver or kidney damage in a few patients.