Kidney Issues

Some of you may know about the kidney issues my son has, and what we have previously dealt with. We are unfortunately facing some new challenges yet again. Not cancer thankfully- but with his Hydronephrosis. I wanted to write this just a to put my many thoughts on paper, and secondly to try to have an explanation to direct people to.

Brief History:

My son was diagnosed with kidney issues when I was pregnant with him. He has a condition called “hydronephrosis” excess urine in his kidneys- causing damage, originally caused from poor drainage issues with his ureters (the tube that runs from your kidney into your bladder). For him- the tubes entered in straight- instead of in an “s” curve -which as the bladder fills with urine the pressure pinches off the “s” -preventing reflux of urine back up the tube and into the kidney. So as his bladder filled the urine was back-flowing through the straight-entered ureters; causing further damage. When my son was 1 he had a major operation, to surgically re-implant both ureters into his bladder at the correct angle. After the operation, his bladder simply stopped working. We were seeing wet diapers- but this was basically the overflow valve on your bathroom sink- urine that was leaking out because he was so full. We did not realize this until about a week after, I noticed he hadn’t peed, and he was really lethargic. He was admitted to the hospital with a creatinine level of 5. He was in acute renal failure and almost died. We were in the hospital for a week. I ended up having to learn how to catheterize my 1 year old, in order to drain his bladder. I did this 5-6 times a day for a month, when it was decided to place nephrostomy tubes into his kidneys. These are surgically placed drains that directly drain his kidneys into something similar to a leg catheter bag. I then spent 5-6 months carrying these bags, and tubes, taped up to these drains in his kidneys. I never stopped unless he was asleep- and then he was on my chest or I was outside of his crib in fear he would wake up and rip out the tubes. Every time the tube came out- it was a trip to the ER, a surgical procedure, more anesthesia. I honestly believe I have PTSD from the months of dealing with this. 9 months after the first surgery, our urologist preformed a second reimplantation surgery on the right kidney. The result of all this showed ZERO reflux on either kidney- 100% success.


The white areas are empty areas of damage which get filled with urine- the tumors can be seen left top and right bottom (the right kidney is smaller with most hydronephrosis damage.)

 It was a follow-up ultrasound from the second surgery that discovered the bilateral Wilms tumors- kidney cancer. At just over 2 years old my son had a partial nephrectomy of his left kidney to remove his tumor. They cut away the bottom portion of his kidney. After the surgery his bladder stopped working again- this time thankfully for only about a week before it began functioning normally. Post chemotherapy, He goes in for scans, MRIs or ultrasounds every 3 months.

Fast forward to 2014:

The past 9 months, after his scans, I am hearing there is some concern that the hydronephrosis looks worse. But it could be the day, or the person reading the scan, we aren’t too concerned etc. Until his last scans a month ago. Something was definitely amiss. The hydronephrosis looked worse on both kidneys, and the left ureter. We have spent the past month doing a few tests, Ultrasound, blood work, a VCUG-where he had to be catheterized, bladder filled with a dye/isotope, and x-rayed to watch if there is any reflux. (There was NONE!-which was good news- except- why are we seeing hydronephrosis?). Next we did  a renal function study- where a dye is injected into an IV, then we watch as it is taken up by the kidneys, filtered, and excreted after lasix is given to make him urinate. In a normal person, after lasix is given, it only takes 20 minutes for the dye to be flushed from the kidneys and ureters. After 20 minutes- none was gone. So, there appears to be a drainage problem on both sides.

Upon returning from a trip to Florida last Wednesday, we went directly to an appointment with our Urologist. I had read the scan results, and basically assumed that we were looking at having to either do nephrostomy tubes again (which would drain the kidney- but not solve the issue- not ideal!). We could place stents into the ureters. Theoretically, this would open the ureter and allow drainage, however we have tried stents multiple times in the past to no avail. So again, not likely to fix the issue. Our surgeon, (Urologist) believes we are looking at possibly having to repeat the bilateral reimplantaion surgery. This fills me with dread on multiple levels. He is older now, this could really traumatize him. What if his bladder stops working again? Then we factor in his cancer-risk for the left kidney, and that his right kidney is sub-par- only functioning at about 20%. How much work do we put into fixing a crappy kidney? -But we don’t want to remove it either- because if something happens to the left kidney- a crappy kidney is better than none. A transplant would not even be an option unless he only had 20 % total function and you must be cancer free for 2 years to be put on a transplant list.

The next step will be a procedure under anesthesia, to inject dye up both ureters to see what is going on, use a scope to visually inspect and possibly to implant stents to try to help drain the ureters. Depending on the results from this testing, we will then have to see what the next step will be. If it is the surgery, it is a major operation taking 6-7 hours to do. I don’t know how soon it may happen- but likely in the next month or two.

All we can do for now is wait for the next procedure, and the results, and go from there. To answer a few questions, He seems to feel fine for now, and shows no signs of any issues. All his many conditions are not connected- The EoE,  allergies, asthma are one; The hydronephrosis is one, and the Hemihypertrophy- (with the Wilms tumors, scoliosis, etc.  are related).

~To be continued…

Next appointment will be in one week.

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11 Responses to Kidney Issues

  1. Jenny M December 1, 2014 at 1:17 pm #

    Sending prayers and positive thoughts to you, your family, and your dear son.

    • Olive December 8, 2014 at 7:28 pm #

      My heart goes out to you. I pray that this condition can be resolved.
      Love and hugs to all.,Olive

  2. Libby December 1, 2014 at 1:25 pm #

    Thanks for the long post. You had mentioned the kidney problems, but I didn’t want to pester you for details while you were supposed to be enjoying yourself. Lots of hugs to you and both your boys.

  3. Selena Bluntzer December 1, 2014 at 3:35 pm #

    (((HUGS))) I know this has been a seemingly unending series of events, and I hope that the doctors are able to get everything under control. (((MORE HUGS)))

  4. Caroline December 1, 2014 at 7:07 pm #

    Sending you love and prayers, but I am thankful you are sharing with the community that loves and supports you. It’s not easy to share this kind of information and put your life out there. Now, you can hear the crowd cheer you on as you move forward trying to find solutions. We are here for you!

  5. Karen Joseph December 2, 2014 at 11:51 am #

    Jenny, I’m so sorry your son is faced with another round of tests and possible surgeries. What a rock you are for him and for the rest of your family. Before kids, I was a nephrology social worker. It was then that I learned that kidneys do so much more than create urine! Thanks for sharing your story so openly. I wish the best for all of you!

  6. Brynn December 2, 2014 at 9:35 pm #

    Wow, what a story. I knew you were a strong woman, but didn’t realize the extent of it! Sending every possible good wish and prayer to you and your son. I will imagine the best possible outcome for him and pray that one day, this is all behind him.

  7. Kathryn @ Mamacado December 3, 2014 at 3:25 pm #

    Sending you and your family prayers and good thoughts for the future. Stay positive throughout it all and praying your son’s health improves.

  8. Cheryl December 8, 2014 at 5:48 pm #

    My pediatrician once said to me, “You must be really smart cuz they don’t give kids like this to dumb parents.” You, Jenny, are as smart, driven, compassionate and courageous as they come – and more importantly, no matter how unlikely it may feel, as Jacob needs. You are an inspiration to us all, and we are all behind you AND your boys. Please keep us posted, and keep strong.


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