Jenna's hoping to get wait listed

[jeannea]

That test is so awful. I can see why you don't want her to do that. Keep being a great advocate!

[natnnnat]

I read this last night at 2am and found it so confusing I couldn't think how to reply.  I decided maybe it would make more sense in the morning.
It doesn't.
Lucky you knew the doctor!  Or perhaps, lucky that doctor was thoughtful?  But what if a different doctor had been there instead?  So much in this game depends on luck.   

[okarol]

I read this last night at 2am and found it so confusing I couldn't think how to reply.  I decided maybe it would make more sense in the morning.
It doesn't.
Lucky you knew the doctor!  Or perhaps, lucky that doctor was thoughtful?  But what if a different doctor had been there instead?  So much in this game depends on luck.   

LOL as I was typing it - I realized it might be confusing but was too tired to backtrack!
My point was that the test was requested by a urologist who never examined her - he was just curious how her bladder augmented with bowel material (and made larger to reduce pressure, which originally damaged her kidneys) and he really never gave the transplant team a reason why he wanted it.
When i asked, the coordinator just said, it's required.
This made me uncomfortable. The test fills the bladder with lots of fluid (seems like gallons!) which could put pressure on her already frail little kidney (functioning now at 13%) and I was concerned it would be the death knell for it. Plus, anything invasive could cause an infection, another risk.
Yes, the risk was low, but why are we taking a risk??
The would not budge. We would not yield. This was required to list her at that hospital. So we said, no.
But then they decided to list her, not telling us she would be on inactive. Coordinator said she told Jenna on the phone, but she had called and woke Jenna from a nap weeks ago, and Jenna had no idea what she said.
Hahahaa I don't know if I am making more sense or less!
Bottom line was - yes, lucky for Jenna that a new doctor was in the picture. And he supported what we were concerned about.

[natnnnat]

Perfect sense, its the situation that makes no sense.

Coordinator said she told Jenna on the phone, but she had called and woke Jenna from a nap weeks ago, and Jenna had no idea what she said

Oh gosh this is so familiar, we constantly had this kind of nonsense when Gregory's mother was in her last months.  They tell the patient, while they are groggy / ill / freaking out and don't tell anyone else!  Nice one!

[MooseMom]

Just goes to show that you should never let down your guard and that you have to second guess just about everyone.  Good on ya!

[okarol]

Jenna got a call from the transplant coordinator today, she's active again! 
How nice to have a doctor follow through and do what he said he would do.
I hope it's a sign of good things to come.

[jeannea]

Fabulous! Gotta be active to get a call. Hope it works soon.

[natnnnat]

 

[lola]

  but at the same time I'm sad Jenna has to go through this again

[okarol]

but at the same time I'm sad Jenna has to go through this again

You and me both! My head gets in to a pretty bad place sometimes, because I probably know too much. I know you know too Amy.
xoxoxxo

[okarol]

I updated in another thread http://ihatedialysis.com/forum/index.php?topic=26504.0

[phyl1215]

Happy news, hope she doesn't have to wait to long.