Mind the Gap

August 11, 2014 at 10:42 PM 4 comments

For the next stop in our guided tour of end stage renal disease, I draw your attention to the left of the carriage where you’ll see the elusive Bilateral Radical Nephrectomy.  That’s Bilateral (both sides) Radical (taking out the whole thing) Nephrectomy (removal of the kidney).  Let’s hear it for Latin!

Eliana is going into the hospital this week to have her kidneys removed. The plan is that she’ll be arriving on Tuesday the 12th, with surgery on the 13th.  Seems like almost everyone comes up with some of the same questions when they learn about the surgery, so we figured we’d just go ahead and post several questions and answers here so you have an idea of what’s going on.

Q:  Ewwwww!
A:  Yeah, but you get used to it.  Seriously.

Q:  But what will she do without kidneys?
A:  Thing is, her kidneys don’t work anyway, so for all practical purposes there will be very little change to her daily routine. She will still be on dialysis for 12 hours a day, and will still get all sorts of shots and dietary supplements to take care of everything that’s not happening in the organs today.

In fact, it’s possible that life with no kidneys will be slightly better. There’s really no good way to directly measure the actual functioning of the kidneys; all of that gets measured by looking at levels of various things in her blood. So it’s possible that her existing kidneys are doing a little bit here or there on a sporadic basis. Removing them will ensure that there’s truly nothing going on and might even make things a little more predictable.  Long story short, this is a good thing, and it’s been part of the plan all along.

Q:  So is she getting a transplant too?
A:  Nope.  This is all about taking the kidneys out – not putting one back in.  A transplant is somewhere down the line, maybe 6-12 months or so.  The doctors will let us know when they think she’s ready.

Q:  But what’s so important that they need to be taken out before the transplant?
A:  Eliana has a rare condition called Denys-Drash Syndrome, which is a very rare hiccup in the WT1 gene. Did we mention it’s rare?  This defect creates an extremely high likelihood – right around a 100% chance – that she’ll start growing things called Wilms Tumors on her kidneys (that’s where “WT” comes from). The kidneys are coming out now so they’re out before any tumors can start forming.  Things get REALLY complicated if that happens, and all other things being equal we’ve had it UP TO HERE with complications.

Q:  So if she’s not getting a transplant, what’s going into the spots where her kidneys are now?
A:  Nothing. Nada. Zip. Zero. Bupkus.  I must admit that this one had me flummoxed, as I’d somehow envisioned the kidneys as a ‘flow through’ organ where all the blood in the body goes in the top and comes out the bottom (or something like that).  With that mental picture I was envisioning that something would have to fill the gap so the vessels could all connect back up.  But really, the kidneys are on renal veins/arteries that branch off from a main vein and artery (the inferior vena cava and descending aorta, if you must know), so they can pretty much just take out the kidneys, tie off those branches, and the blood keeps going up and down in the main vessels.  For her transplant, they will actually put the new kidney in her abdominal area and attach it to different vessels…but that’s a Q&A for some other time.

Q:  Ewwwww!
A:  Uh-huh. See above.

Q:  How long will she be in the hospital?
A: Doctors estimate anywhere from 3-5 days, if all goes well.  A lot will depend on how quickly they can get her back on dialysis and renormalize all her levels – the fewer complications and the better she feels, the faster we can get her back to her routine.

Q:  Is there anything I can do?
A:  We’ll let you know if there’s anything we need locally, but most of all we’d love to have any positive thoughts you might send our way.  Every little bit helps.  We’ll be sure to update after the surgery.


Entry filed under: Uncategorized.

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4 Comments Add your own

  • 1. Bubbe  |  August 11, 2014 at 11:20 PM

    Lots of love and good vibes heading her way. I know more about kidneys than I care to. Ewwwww!

  • 2. Cory & Stan  |  August 12, 2014 at 6:15 AM

    If positive thoughts will help, know that they are being transmitted from New Jersey. The air waves and heart waves (kidney waves too) are filled with them from us, prayers too! With love & hugs,
    Cory & Stan

  • 3. Susan Nathan  |  August 12, 2014 at 7:59 AM

    Sending good thoughts and prayers to Eliana and all of you!

  • 4. Sandra Pittman  |  August 12, 2014 at 10:29 AM

    Brian and I are sending lots of love, good vibes, positive thoughts and prayers for a successful, umm, Bilateral Radical Nephrectomy for your little angel. It sounds like a good plan for her and for her very strong and exhausted loving parents. A big hug goes out to the entire family! I’ll be waiting for the updates. We’ll be thinking of Ewwwwwww!
    Sandra and Brian


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