New here: anyone know if large or cystic kidney can get better?

CantWait2Be

ds was diagnosed yesterday with one of his kidney's being too big due to a blockage (that was either not present or overlooked at our big u/s), if I recall correctly the doc said something briefly about his kidney being too big and cystic but he then moved on quickly and briefly talking about the blockage and what the plan for monitoring him and possible surgery after birth.? This was an unexpected discovery and meeting with the doc as a result and dh wasn't there for this news so it was a lot for me to take in by myself.? The doc said the blockage may be repared or may need to take the kidney but I guess they won't know until after he's born.? Does anyone know if a large kidney or a cystic kidney can get better or function just fine after a blockage is fixed? Anyone been through this and willing to share your experience? Tia

duchess0727

My daughter had enlarged kidneys in utero but her fluid was always fine so clearly there was function.  They resolved after birth.  Her initial u/s after birth (which we were told is inaccurate until 10 days after birth - just in case they do one when your baby is born) showed a possible cystic kidney.  They told us that as long as one kidney was functioning fine, they wouldn't remove the other and they would just let it shrink (which is basically what will happen to a nonfunctioning kidney).  Once they did the follow up u/s when she was 2 weeks old, it showed that her kidneys were fine.  One of my close friends went through something similar to you where they were confident there was a blockage until he was 4 months old and then they finally were able to confirm that he was fine and no surgery was required. As far as I read, enlarged kidneys is the most common abnormality discovered in utero and it does often resolve before birth.  Good luck!

Jen&Len

DS was born with enlarged kidneys in utero.  He was put on prophylactic antibiotics for the first 6 months of his life and had several followup u/s.  His kidney have slowly decreased in size and he never developed any clinical issues or UTI's.  He had his last U/S a few months ago and was cleared! 

JaysonandKristin

My MIL and BIL both have bilateral cystic kidneys.  From the information I have gathered from them (MIL is a nurse), if only one was affected they'd both be in GREAT shape.  At some point they will both have to be put on dialysis, but MIL is 54, and still fine.  If she continues on her same track, she'll likely need dialysis nearing her 70s.  

So, take it FWIW, but it's probable that your LO will never have any issues or that if there are real issues, they won't manifest until they are older. 

Maywed05

Both of my son's kidneys were enlarged and full of fluid at our 20 week ultrasound.  We had follow up ultrasounds every 4 weeks until he was born.  His right kidney kept getting smaller and by the time he was born it was normal sized.  I had my last ultrasound on Friday and he was born the following Monday.  The left kidney stayed the same, enlarged and full of fluid.  His left kidney is in his pelvis instead of in his abdomen. For some reason it just never ascended.  At about 8 weeks old my son had an ultrasound and a VCUG.  The ultrasound showed that his left kidney was cystic and the right was slightly enlarged.  The VCUG is used to look for reflux which could indicate a blockage.  They use a catheter to fill the bladder with contrast and then take a special x-ray.  My son did not have a blockage.  He has had several follow up ultrasounds and each one shows the left (non-working) kidney shrinking and the right enlarging.  My son's urologist told us that a cystic kidney will not function at normal capacity.  My son's works at about 10%.  The right one is enlarged to take over the work of the left one.  We were also told that the only reason to take out his non functioning kidney would be if it were causing problems, like if it were blocked or if he was getting UTIs. 

Sorry this is really long. I think once a kidney is cystic it will not function normally and can not become not cystic.  An enlarged kidney can go back to normal size if it is enlarged due to Hydronephrosis (can be caused by a blockage) and the cause of the problem is resolved before any scarring occurs.  Not all enlarged kidneys are a problem.  Like my son's some are enlarged to take over for the other kidney. Our doctor also assured us that one kidney is all our son needs.  Although he did caution us that he would need special protection if he ever played contact sports seriously since damage to his good kidney could be a large problem.

I'm sorry you had to get the news without your DH.  I know my husband and I were so upset when we found out.  Luckily for my son everything has worked out well.  Good luck.  I hope everything resolves on it's own.

CantWait2Be

Maywed05, thank you for sharing your experience. I really appreciate it. I am happy to hear things are working out well for your son, it is encouraging. I hope he continues to do well. Will they continue to monitor him?

Maywed05

We went in for his last ultrasound in December and the doctor said we should wait a year and a half to two years to come back.  I think if he continues to do well and the kidney continues to shrink we will probably end up seeing the doctor every couple of years and then maybe to get an order for a protective vest if he needs it for sports.

slacy

My youngest son was diagnosed with Multicystic Dysplastic Kidney in utero.  One of his kidneys was enlarged and cyst-covered (the other was fine).  We had testing done shortly after birth (he was cathed to see if there was reflux - which is one of the biggest problems) and they also tested the function of the normal kidney (to make sure that it was doing the job for both - which it was).  We also had a renal ultrasound at birth (3 days), 6 months, and a year.  The enlarged cystic kidney ended up involuting on its own (it shriveled up and went away), so he'll never have to have surgery.  He only has one functional kidney, but will live a normal, healthy life.  They'll watch his blood pressure as he grows to make sure that it doesn't become an issue, but other than that, he's perfectly fine.  We will have another renal ultrasound at 2 (in September), and if that shows the right kidney as normal, we'll be cleared from the pediatric urologist.

Sara

smerka

I know I'm a little late here, but hopefully this will help.  I don't know the name of my son's condition, but his kidney didn't form right.  He has too many connections between the bladder and the kidney and they are all in the wrong place.  He has level 5 reflux on a scale of 1-5 and his kidney functions at ~15%.  His other one is fine. 

Because the function is borderline, we have three choices.  Do nothing and assume that he will get bladder/kidney infections later on (I should add we only found out about this after his 4 month checkup when the doc felt something funny.  He showed no signs of a problem).  Option 2 is removal.  Option 3 is reconstruction.  Even at 15% function, if the reconstruction works that would be enough function to keep him off dialysis if the good kidney goes bad.  We're opting for the reconstruction and it's scheduled for next month.  And yes I'm freaking out. 

I don't know if that answers your question.  But all along every one has been telling us that no matter what he's going to live a perfectly normal life even if he winds up with only one kidney (if the reconstruction fails).  Good luck!