Medullary Kidney Disease

Medullary Kidney Disease 1 Treatment

I have MKD1 and I am very worried that I will need a kidney transplant or need dialysis someday.  What can I do now?

At present, we do not have a specific treatment for MKD1.  It is important to stay generally healthy so that you will be a good kidney transplant candidate in the future.  This includes:

  • Having good blood pressure control
  • Making sure that your cholesterol is well controlled
  • Exercise and stay fit
  • Do not smoke
  • Try not to become overweight 

The goal is to be in as good shape as possible so that when kidney failure comes you will be a great candidate for kidney transplant.

I have MKD1 and my kidneys are getting worse and my doctor thinks I might need dialysis or a transplant soon.  What should I do now?

Patients with MKD1 are generally excellent candidates for kidney transplant.  This is because MKD1 only affects the kidney and the rest of the body remains healthy.  MKD1 patients also lose kidney function gradually, so there is a lot of time to prepare for a transplant.

It is important to identify any individuals who might be willing to donate a kidney to you - it can be very hard asking someone to donate a kidney!  A donor can be a family member or a friend.  If it is a family member, they should be tested to make sure they do not have the gene for MKD1.

One should be referred to a kidney transplant program when kidney function is less than 25% of normal.  You should ask your kidney doctor when is the right time to be referred for a transplant evaluation.  It can take some time to go through the evaluation tests and to have a potential donor evaluated.  

What treatments are needed when kidneys fail to the point of needing dialysis because of MKD1?

Dialysis or kidney transplant will be needed when kidney failure is very advanced.

Dialysis filters your blood to rid your body of harmful wastes, extra minerals, and excess fluid.  There are two types of dialysis.  Your doctor can help you decide which type is best for you, as each type has risks and benefits.  

  • Hemodialysis filters your blood using a machine as the filter.  Most hemodialysis patients go to a dialysis center to have dialysis, though some do it at home.
  • Peritoneal dialysis is done at home through a catheter that is placed in the abdomen.  It can be done at home and at night while the patient is asleep.  

Kidney transplant  is the best treatment for kidney failure. During this procedure, a surgeon will place a kidney in the lower abdomen and connects the artery and vein of the new kidney to the patient’s arteries and veins.  Usually the older kidneys do not need to be removed.  The new kidney can come from a relative or friend, or it may come from someone who died and volunteered to donate their kidneys to help others.

After a transplant, patients no longer need dialysis because the transplanted kidney takes over the work of the failed kidneys.  You will need to take medications for the rest of your life to keep your body from rejecting the new kidney.  This is because the kidney comes from an organ donor or living family member.  MKD1 does not come back in the new kidney, and the disease is cured with a transplant.          

Kidney transplant is the only cure for MKD1.  MKD1 will not come back in the transplanted kidney.  

This webpage provides only general information.  Please consult your physician for recommendations specific to your case.  If you think you may have this disease or another type of inherited kidney disease that no one can tell you the cause, please contact Dr. Anthony Bleyer at kidney@wakehealth.edu or call 336-716-4513.

Last Updated: 10-06-2014
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Disclaimer: The information on this website is for general informational purposes only and SHOULD NOT be relied upon as a substitute for sound professional medical advice, evaluation or care from your physician or other qualified health care provider.