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Discussion Starter · #1 ·
Dd went in for her routine u/s today, and it doesn't look good.
: Her transplanted kidney has some substantial hydronephrosis (meaning the waste fluid is not draining properly), and the dr is concerned that she has urinary reflux and/or some kind of blockage. That is not good news for a transplanted kidney. I can't believe how scared and upset I am feeling tonight -- just like I've been broadsided by one more thing, ykwim? Dd isn't having any real symptoms or pain at this point, but I'm so worried about what this means in terms of treatment and the long-term outcome of her transplant.

We'll hear more tomorrow, and the dr. is hoping to schedule more tests for this week. . .
 

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Snuggly-I have no idea why I stumbled upon your post tonight, but I read your words and I really wanted to just give you some
My best to you and your family. There are so many wonderful mamas here. I hope you get the support your need during this time.
 

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mama. you don't have time or energy to be upset about things that MIGHT happen- focus on what is happening right now and the fact that she looks okay and acts okay at this moment. I have repeatedly made myself absolutely SICK over things that did not come to fruition. Concern is normal of course but don't let it take you over, I know it's hard.
 

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I just want you to know that my thoughts are with you. I hope the kidney recovers and this is just a small stumbling block. ((HUGS))
 

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((((hugs)))) transplant is one of the issues we face as well. Are you part of trankids, I think that's the group? Anyway...is corrective surgery for the reflux an option with a transplant?

mv
 

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Discussion Starter · #7 ·
Well, I just got off the phone with her transplant center, and they have scheduled her for two tests this week. I do think that surgery is an option, though I'm freaking out at the thought of it. I know we'll do whatever we have to so we can get through this. It's just so hard and I'm so worried.

Dd had such a crummy winter with tons of fevers, colds, and assorted illnesses that I just wanted her to enjoy the summer when she's so much healthier. She was supposed to have a minor surgery in a couple of weeks (ear tubes and adenoidectomy) which I already was stressed about. This just adds a whole new level! I hate that she has to keep going through all of this. She's five years old, and she's been through more he** with medical procedures than most elderly people! I'm feeling so bad for my older two as well, since this inevitably impacts them too.

Ok, I'm going to try and calm down.
: My older dd is trying to encourage me to meditate (she's such a great kid
), so I'm going to try and remember that I've handled a lot in the past, and I can handle this too. If I tell myself that enough, it will be true, right?
 

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(((Beth))) I"m sorry that you're going through this right now and I'm sorry that your daughter is going through this as well. I'll be thinking about all of you and praying that this is nothing too serious that can't be easily solved.
 

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{{{Hugs}}} My 37 mo ds has hydronephrosis but with a kidney he was born with not a transplant. I was told the thing to do was to *monitor* it via renal ultrasounds.

I am sorry that you are going through this. I wish your daughter the best care. I hope everything works out.

Sincerely,
Debra
 

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Hang in there! Just a word of advice, if you want to call it--but I would consider medical procedures during the summer as opposed to winter when hospital-born illness make recovery so much harder. This is just what we've been through and it sucked.
Hang in there. hugs to you all.
 

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The surgery now is endoscopic for reflux. And very high success rate. Very high. And I think it takes maybe 15-30 minutes....and can be outpatient....or at least only a several day stay, not the weeks it used to be.

It could be different with the transplant, but maybe not.

 

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Ugh! A transplant momma's biggest fear....something "not right" with the tranplanted organ! You will be in my thoughts this week. Being a transplant Mom with you makes me feel your anxiety even more. I hope that it corrects itself and surgery is not necessary. Feel free to e-mail me anytime! I'm here for you!
 

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Discussion Starter · #16 ·
We are headed to the hospital for testing tomorrow, but I don't know if we'll get any information at that point. I am having my bags packed and ready, though, in case we have to be admitted. I'll give an update tomorrow . . .
 

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Discussion Starter · #18 ·
We're back from testing, and we're not admitted to the hospital, so that is good news!
Dd has to go to the clinic tomorrow to consult with the transplant team as well as the urologist, so we should get more results from the test then. What I know right now is that she has a "kink" in the ureter which is at least part of the problem. Not sure what kinds of treatments options we'll be looking at, but I'm hoping to get more information at tomorrow's visit. Thank you for all the kind thoughts!!!
 
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