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Long Term Effects of Bilateral Ureteral Reimplantation

I had bilateral ureteral reimplant surgery when I was 3 years old. I am now 20 years old and I'm having concerns about my future. I've had chronic UTI and Bladder infections over the course of my life, and visit my urologist every 6 months for routine tests. There have even been some scares of hydronephrosis on my left kidney.

I'm worried that in a few years, when I hope to have children, that complications may occur due to scar tissue built up around my lower abdomen, or even anything more serious from the pressure of the growing child on my body.

Should I be worried? Are there usually any complications for a mother who has had the surgery as a child? What are the worst-case-scenarious?
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Avatar universal
You should be able to have healthy pregnancies, I was treated with macrobid in pregnancy. You should closely monitor your BP, as in all pregnancies. Most importantly, you should get to neonatal imagining specialist to have your child evaluated. I am not a doctor, but a journalist, who has worked reporting in the medical field, and more importantly, I am a parent of a child with VUR, and I have some first-hand experience that may be of benefit for you.

Let me explain my family history and the experience with my own family.

First of all, I should tell you as our specialist told us when our newborn daughter was diagnosed, that VUR can be and often is hereditary. If there is a question in anyone's mind about this, let me tell you our family's history:

My great-grandmother died of renal failure, we can't know if she had VUR because on imaging studies were done, also one of her children failed to thrive and died at age 3, the symptoms in both cases followed what would indicate ESRD (renal disease). My cousin had VUR on one side (unilateral), which had to be fixed with reimplantation in the 1980s. My sister low-grade one side reflux. I had duplicated ureters and infections during my first pregnancy on one side, I had high blood pressure in 3 of my 4 pregancies. I did not know that reflux had a genetic component at the time, and had not disclosed that to my OBGYN. I had had childhood infections but had never been evaluated for reflux. I had to take microbid multiple times during my first pregnancy, but my child in that pregnancy was born healthy. So, on the second child, as the first, we did not do specialized imaging studies inutero, and even if we had the reflux or the defects might not have been apparent until after birth. Either way, we took our daughter home thinking that she was healthy, just as our first child was. HOwever, just 2 weeks later, we were rushing into hospital with my child. She was septic, with a severe klebsilla pnemoniae infection. Both kidneys were swollen, she had severe polynephritis and hydronephrosis. Over the next 21 days in the children's hospital, they stablized her with powerful IV antibiotics and did a VCUG that found she had been born with both megaureters and duplicated ureters, bi-lateral, (both sides). She had degree 5 reflux. Fortunately, our doctor is an expert at the condition, teaching at hospitals across the nation on the proceedures to treat reflux in children. (He specializes in pedi cases.) We chose this course of treatment: 1) prophylactic antibiotics until 10 months, then treatment with deflux. The deflux failed, (this was expected, given her structure and case, but it was the option our family chose because it had a better chance of long-term success and lower complications on the later reimplantation surgery at a older age.) There was some conflict with some family due to the additional costs, but I did not see that as the priority -- I wanted our daughter to be healthy. At age 9, she was then given reimplantation (with taper, join of duplicates, and stents used to restructure ureters) this was done at a later age because this will be the better chance for success.

One thing you need to know, our doctor told us any blue-eyed, light haired sibling should always be evaluated for VUR (but he recommended all siblings in our case be tested). For those with these characteristics, the chances were higher, but in general I believe he said the chances are 1 in 3 that a sibling could have it. Our daughter's case was an extreme, most children do not have this high a degree of reflux, and certainly not on both kidneys, nor do they have the combination of types of malformations my daughter has had. She just had the most severe of each type.

In any case, we had all our our children evaluated with sonogram because of the risk, and 2 of 4 have some reflux, but one is negligible, the other, my second, well as you can see she is a severe case. Most cases of VUR now can be easily treated with deflux surgery. http://www.deflux.com/hcp/about-deflux/efficacy-long-term-results/  it is a very simple proceedure and we have had really good success with it in our family, we have been through 2 deflux surgeries. We understood that our 2nd daughter would have to have an additional surgery later, because her megaureter was larger than that of adult, Because of this, as she grew it would not decrease her reflux, as it does in some children, so surgery was necessary.

The doctor has told us that he expects my daughter will be able to have healthy pregancies, but when she does she should be quite careful to monitor her BP, and discuss with OBGYN putting on a low-sodium plan, and diet such as they would use for a woman with risk of high bp in pregnancy. Additionally, they should monitor keytones and blood  in urine, they have strips that you can use during your pregnancy to monitor at home, and someone with your history, such as my daughter, would just need to monitor it more closely, with using test stirips 2x per day at least and also monitoring bp closely.

According to an Aug 1995 article in the Journal of Urology, Aug;154(2 Pt 2):787-90, "Of 37 women with primary vesicoureteral reflux and no surgery with an average followup of 25.5 years there was a 15% prevalence of urinary tract infections with pregnancy in 21. ... Women with urinary tract infections and reflux as children have high rates of cystitis with the onset of sexual activity whether or not they underwent reimplantation as children. Those who underwent reimplantation as children are at significant risk of urinary tract infection in pregnancy but not at a higher risk of miscarriage than the general population. Education, screening and antibiotic prophylaxis during pregnancy should be considered."

Good luck with your pregnancies.

No matter what, know that this condition is treatable, and normal healthy life is the most likely outcome for you and  your children. My daughters are my joy, reflux or not.

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1 Comments
At age 5 surgery for VUR on my left side. Now at age 52 I have repeated UTI and pylonephritis before I get off one antibiotic the infection is back. I have high fevers at times with these infections and some times no fever this is affecting my personal life as well as my ability to work. What else can be done so tired of this
Avatar universal
I had bilateral reimplantation done at the age of 1 I think and I am now 33. I had my son when I was 19 going on 20 after having urethral dilatation at 18 because of severe chronic UTIs after intercourse. He was born at 32 weeks because of eclampsia because I wasn't followed as a high risk pregnancy even with my extensive surgeries. Also, after having him I haven't had UTIs as often until here recently, like this past summer. It is possible to have children and be fine!
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Avatar universal
Hi I just read these posts and wanted to tell you that my daughter had this surgery when she was 11 years old. When she was pregnant with her first baby she did have numerous kidney infections. She was under the care of a high risk doctor. She delivered a healthy baby girl. At her next pregnancy, she didn't have any problems and hasn't had any issues at her third pregnancy too. She has today 5 beautiful children and she doesn't suffer any infections at all. I don't think you have anything to worry, just be under the care of a good doctor when you are pregnant and let him know your history.
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Avatar universal
Hi missv9,

I think we are in a very similar boat.

I also had bilateral ureter reimplantation surgery when I was 2 years old. I am now 20. Around the age of 17, my UTIs started to become more chronic. When I was 18, one resulted in a kidney infection. I finally met with my doctor and realized that they became more prevalent as a result of sexual intercourse. I was prescribed Macrodantin and so I take it each time after intercourse as a preventative measure and luckily haven't had one since.

Let me know if you find out any complications of having children. Like you, I would also like to have children someday and not have to worry about severe effects.
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Avatar universal
Hi,
     How are you? Vesico ureteral reflux is treated by ureteral reimplantation. Usually VUR is treated conservatively for stages 1 to 3. But in cases who are in stage 4 or who are not treated successfully by conservative treatment they are subjected to surgical correction by reimplantation of the ureters.

Potential complications include bleeding, infection, urinary leakage, and bladder spasms shortly after the surgery (usually resolve in 2 to 3 weeks), and ureteral obstruction or persistent reflux later. The latter two complications are managed differently if they occur. In your case, I think it is persistence of reflux which is causing recurrent UTI’s and hydronephrosis of the left kidney. Other surgical methods that may be performed include laparoscopic correction and using an endoscope to inject a bulking agent (e.g., Deflux) at the ureteral opening. If the VUR does not correct even with this a revision surgery can be considered.
Consult a urologist for further assistance.
Best.

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