By Lara E. Tushla, LCSW
Everyone talks about the success rates of kidney transplants. Rarely do we talk about what happens when transplants fail. People will quote the official statistics that 97% of kidney transplants are working at the end of a month; 93% are working at the end of a year; and 83% are working at the end of 3 years*. Those are some pretty good odds.
In the transplant evaluation process, transplant programs talk about the success rates and risks, including that the kidney may never work or won't work for long, but everyone thinks they will be one of the successes.
We rarely talk about the 7% of people whose transplant failed within a year or the 17% of people who have lost their transplants within 3 years. It's hard to find any guides or brochures for patients and families about how to deal with a failed transplant—for the nearly 3,000 people who lose their kidney transplants in the first year or the over 6,000 people who lose their transplants within 3 years. At 10 years, 54% of transplant kidneys are still working. In fact, over 20% of kidney transplants every year are re-transplants.
There are many reasons why a kidney transplant can fail:
- Clot: This is usually when the blood vessels to the transplanted kidney clot, so the kidney has no blood flow. This seems most likely to happen shortly after the surgery.
- Fluid collection: If there is fluid collection around the kidney, there can be damage to the kidney from the pressure if it is not treated.
- Infection: Having an infection in the kidney can cause permanent problems with the kidney, especially if it is not found and treated early.
- Side effect of medicines: Some medicines can be harmful to kidneys.
- Donor kidney problems: Transplant surgeons will only offer you a kidney that they believe will work, but sometimes there are problems with the donor kidney that are not expected and the kidney never works well. If the kidney never works well, it is not likely to last long.
- Non Adherence (aka non-compliance): Some people stop taking their anti-rejection medicines or miss doses. The anti-rejection medicine prevents your body from recognizing the kidney as a “foreign object.” Without enough of the medicine in your blood, your body “sees” the kidney and begins to attack it. Eventually you will damage enough of your kidney that you have to go back on dialysis. Non-Adherence can also cause problems if a person misses their appointments, lab tests, or other treatments.
- Recurrent Disease: Although it is not very common, it is possible for the disease that damaged your original kidneys to come back and damage the transplanted kidney.
- Acute Rejection: The type of acute rejection that happens right after the transplant surgery is pretty rare now, but this can happen at any time.
- Chronic Rejection: This is the most common reason that kidney transplants fail. It is the long term damage done by the body's immune system for a lot of different reasons.
I think it is important to say that transplant patients have NO CONTROL over most of these causes of transplant failure. Transplant patients do HAVE CONTROL over taking their medicines and following treatments as prescribed, calling their transplant care provider when they are not feeling well, and otherwise staying as healthy as possible. Most people take good care of their kidney, but it can fail anyway.
There are a lot of reactions that people have when their transplanted kidney fails. Since every situation is different, it's impossible to determine the “usual” response.
When the transplant stops working shortly after the transplant, often the most common responses are shock and disappointment. In my experience, the most common cause of an immediate transplant failure is a clot in the blood vessels to the kidney. The surgeons will see if they can remove the clot and save the kidney, but if it cannot be saved, the kidney will be removed. So, you've had two surgeries with the accompanying pain and have no working kidney! Some people say that they feel abandoned by the transplant team when this happens. They are in a kind of grey zone (not a transplant recipient and not back in the community of their dialysis unit). Although signing up for another surgery is the last thing people are thinking about, the transplant center can request for the person to get their wait time back if the transplant kidney has failed within 90 days.
There is another group of people who are relieved when their transplant has failed. In my experience, this happens when there have been many complications with the transplant. This can mean multiple hospitalizations and treatments or symptoms of kidney failure on top of the side effects of the medicines. If you feel better on dialysis then after the transplant, sometimes it is a relief to stop the anti-rejection medicines and return to dialysis.
For a lot of people, it seems that there is a theme of frustration and sadness when they have to go back on dialysis. No matter how long the kidney worked, it is discouraging to be told that you will need to go back on dialysis, and some people consider it devastating news.
Some of the struggles people have when they first learn of kidney disease are also experienced by people who are returning to dialysis after transplant. They wonder what they did wrong and why they have to go through this again. They sometimes consider not returning to dialysis and are angry and sad all the time. Some people aren't ready to deal with the reality of having to return to dialysis.
As the kidney is failing, many people start the process to get back on the waiting list and begin talking to potential living donors before restarting dialysis. This can help give back a sense of control in a situation where many things are out of your hands. In fact, I think that focusing on the things that will help you move toward a positive future is one of the most helpful ways to deal with the disappointments related to a failed transplant.
*The transplant statistics are the most recent overall numbers from the Scientific Registry of Transplant Recipients at www.ustransplant.org. The results are different for deceased donors and living donors. You can check the results from a particular transplant program on this site.
Lara is a social worker at the Rush University Transplant Program in Chicago.