FAQs About Kidney Transplants for FAP

Familial amyloid polyneuropathy (FAP) is a rare genetic disease that results in the buildup of amyloid fibrils, or protein clumps, in organs that include the kidneys. When this accumulation disrupts the kidneys’ ability to work as they should, a kidney transplant may be necessary.

How does FAP affect the kidneys?

FAP is caused by a mutation in the TTR gene, which carries the information necessary for cells to make a protein called transthyretin (TTR). The TTR protein helps transport retinol (vitamin A) and the hormone thyroxine throughout the body.

Mutations in the TTR gene cause the TTR proteins to misfold, so they don’t to function correctly. They also stick to each other, forming large clumps of protein or amyloid fibrils. These fibrils do not break down and start to accumulate inside various organs. The buildup of amyloid fibrils in the kidneys damage nephrons — units of the kidney responsible for filtering blood — and can lead to end-stage renal disease (ESRD), also known as kidney failure.

Can a kidney transplant cure FAP?

No, it will not. A kidney transplant without first getting FAP under control will result in the return of progressive kidney disease  at some point. Some studies have found that combining a kidney transplant with a liver transplant can lead to better outcomes for the kidneys. This is because the liver produces most of the amyloids in the body.

Might I be eligible for a kidney transplant?

If you are still in the early stages of FAP, you might be a good candidate for a liver transplant with a kidney transplant sometime in the future, should your kidney function deteriorates. If you are still in early disease stages but already have poor kidney function, you may be a candidate for a joint liver and kidney transplant. Without a liver transplant or other means of stabilizing disease progression, a kidney transplant is not a good option. This is because amyloid fibrils will again begin to build in the new organ, causing kidney problems to reoccur.

Criteria covering medical and logistical factors go into determining eligibility for a kidney transplant. The United Network for Organ Sharing (UNOS) handles the distribution of organs from deceased donors. UNOS decides the order of the kidney transplant waitlist based on several criteria. These include waiting time, immune compatibility of the donor and recipient, distance between the donor and transplant hospital, survival benefits, the donor organ’s size and patient’s age, and whether the recipient was a prior living kidney donor.

What is a living donor transplant?

A living donor transplant involves getting a kidney from a living person, like a family member, friend, or a compassionate stranger. People can live with a single functional kidney, so a donor can give one to another person and remain healthy.

Living donor transplants can reduce the time you have to wait for a new kidney. A shorter waiting time means less time on dialysis, and with a living donor you can plan for a surgery at a time more convenient to you both. Living donor transplants also usually have better results, since the kidney is outside the body for lesser time.

What is the wait time for a donor kidney?

Waiting times for a kidney transplant from a deceased donor waitlist — someone who agreed to donate their organs upon their death — average three to five years at most centers. Depending on your geographical area, however, the wait can be longer; in regions of Pennsylvania, for instance, it is placed at about five to seven years.

What are the risks of a kidney transplant?

With kidney transplants as with any other major surgery, several risks are known. These include risks associated with general anesthesia, infection, rejection or failure of the donated kidney, blood clots, leakage at the site where the kidney is reattached, and side effects of medications. You will need to be on anti-rejection medications for the rest of your life, which among other side effects can lower your immune response to make you more susceptible to infections.

Is a kidney transplant preferable to dialysis?

Dialysis helps to clean the body, but it is not as effective as a working kidney. Dialysis can also lead to other health problems. Patients who receive a transplant often live 10 to 15 years longer than those who remain on dialysis. Dialysis also requires frequent visits to a dialysis center, which can limit your ability to travel and plan other activities.

How long will it take to recover?

Most patients start to feel better about two weeks after surgery. Your recovery time may vary depending on factors that include your overall health and age.

How long might a new kidney last?

Kidney transplants tend to last around 10 to 12 years. Factors such as diet, smoking, alcohol consumption, and how well your FAP is controlled can affect the longevity of a donated kidney.

Are lifestyle changes necessary?

After your kidney transplant, it is recommended that you don’t smoke or drink alcohol, and that you exercise regularly and eat a healthy diet. It’s also good to avoid contact sports that could damage the new kidney.

Because your immune system will be compromised due to medications to prevent your system from rejecting the donated organ, you should take extra care to avoid infections.

Last updated: Oct. 15, 2020

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FAP News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health providers with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.