More tests for my kids

[cariad]

My husband and I are preparing for him to donate a kidney to me in October. As part of that preparation, we had our two boys tested for kidney issues. I was told that what I had was not genetic, and I believe this.

We had our older son Aidan tested about 4 years ago. They found something. Not what I had, but something. The children's hospital did more tests, which led to more tests, and finally we met with a nephrologist who told us that the results were unclear and that we should follow up once a year. We have not done this yet.

We tested the second boy. In the ultrasound room, I tried to get the tech to talk to me, and even though she was not supposed to, she did. She said he had no sign of Aidan's issue, and no sign of my original issue.

My GP phoned with the official results just last week. There is a new issue. He kept telling me it was probably nothing but that I need to follow up on it.  Apparently, Liot has one kidney larger than the other, and according to the doctor's report, his larger kidney is "compensating" for the smaller one. Oh, and the doctor that examined the ultrasound film is concerned about Liot having the same issue that I had. That was when I lost all composure.

I don't know what to do with this information. We have a Tuesday morning appointment for our son at the children's hospital. When our GP was trying to calm me down, he said that they have to follow up on everything. What does that mean exactly? That we are just putting our son through this so some hospital can protect themselves from a lawsuit? They never told us everything was OK with our older son, in fact, the urologist specifically retracted his statement that my older son would not go into renal failure. So, where is this leading exactly? More and more tests, only to get this useless "inconclusive" response. If the hospital will never tell us that we have tested our sons enough, then it is up to us to make that call, and that forces me to make medical decisions after paying the doctors for their so-called expertise. They know my history, they know that I will never feel comfortable ignoring any little hint of a problem.

[willowtreewren]

I am hoping that this is "simply" a case of the medical profession covering their butts. But I know this is added stress for you.

 

[silverhead]

I think Lawyers and Lawsuits have forced the medical profession to say things in a way that leaves the patient in limbo, and the doc's out of the courtroom.......

[Goofy]

Gosh, what a horrible position to be in.  Its bad enough you have to worry about yourself and now you have to worry about your children.  I hope you get good news and I hope you get it soon.

[Rerun]

They will never tell you what these "tests" cost.  You must have good insurance so they are going to run them all. 

It is sad but I think and have seen this to be true.

[kitkatz]

I hate that the medical profession likes to keep secrets, especially from the parents. Good luck and I hope you get answers soon.

[cariad]

Thanks so much for the support, everyone!

The hardest part for me is that I actually started this.... again. You would think I would learn from the first horrible experience. That, of course, is what I am trying to do - learn from my own experience. If my doctors and parents had been more on top of things, I may have never needed a transplant. How do I keep from going totally paranoid with that information always at the back of my mind? I really don't want to have to guess the difference between "necessary" and "fleecing an insurance company".

Thanks again. I will update when I know more. 

[Hanify]

It's better to know!  You might be in a position to avoid further problems.  Thinking of you this week.

[cariad]

We saw the doctor this week for my son Liot. She was very nice, and very good with him, and he is often not the easiest child to charm.

She looked over the ultrasound report and told us why it had been suggested that we follow-up. One kidney is at the very minimum size for normal for his age group. The other is 3 cm longer, which is actually the minimum for normal for an adult. The doctor told us that anytime there is more than a 1.5 cm difference between kidney sizes, they recommend follow-up, but because of my history, they thought it an especially good idea.

She said she was not particularly concerned by what she saw. She asked if we had any questions and I said yes, we have the ultimate question, is he going to experience renal failure and need a transplant. She said no.

She also listened to our concerns about Aidan, our older son, and she said that it would be a good idea to repeat an ultrasound on him, to compare to his earlier records and make sure the kidneys are growing and functioning still.

She ordered a urinalysis and a blood draw for Liot. We received the results this afternoon. Creat of .4, no protein in the urine. Follow-up in a year and a half to monitor the growth of the kidneys.

I am so relieved. Thanks for listening everyone! 

[okarol]

  That's such great news!

[monrein]

I love good news!