Jenna's hoping to get wait listed

[rsudock]

thinking of you and Jenna.....

xo,
R

[okarol]

Jenna has stayed at around a GFR of 16 to 17 for the last year, which is great. As we know, however, that can change rapidly and we are hoping to work toward a transplant before she gets really sick.

Today she got a letter which says:
"The team has presented your case at the Candidate Conference and had determined that you are an appropriate candidate to proceed with a kidney transplant evaluation."

So that's good news. She needs a TB test, chest x-ray, GYN and dental clearances and an abdominal scan before they can add her to the national waiting list. Making progress!

[Darthvadar]

Great news!!!!!....

Onward and upward!!!!!!....

Darth...

[Wattle]

 

Yay Jenna!! I am doing a little happy dance 

They make you jump through so many silly hoops and test you for so many silly things, like you have picked up TB on your walks around Pasadena!

[lola]

  woooooohooooooo

[RichardMEL]

Great news!! A small but significant step for Jenna, and your whole family. YAY!
 

[Chris]

While that is great news, I find the letter confusing due to my experience. I guess they just do things differently across the US.
 
This letter means that they will examine her before putting her on the list?
I guess I just like things to have a standard on how things are done.

[okarol]

While that is great news, I find the letter confusing due to my experience. I guess they just do things differently across the US.
 
This letter means that they will examine her before putting her on the list?
I guess I just like things to have a standard on how things are done.

It is confusing. When she was evaluated in 2004 they examined her, ran tests and then she was listed. This time they've seen her, she met the whole team, gave blood samples, and now they are allowing her to proceed with the evaluation. Maybe it's different because she was on dialysis already in 2004, whereas now she is hoping for a preemptive transplant, if possible.

[paris]

Great news for Jenna!   And you!   

[okarol]

Jenna got a letter from the transplant coordinator on Feb. 17th telling her to come for an ultrasound and xray on Feb. 25 and and EKG on Mar 3 (weird they didn't plan it all on one day.) I took her for the appt. at 830 am this morning. Found it had been cancelled on Feb 18th. No one knows why. Coordinator was not in as she was "running late" and the nurse was out sick. They could not reschedule as no one knew why it was cancelled or had the authority to make a decision.

It's frustrating. It's not just the inconvenience, its the stress on Jenna, getting there early, morning traffic, negotiate the parking structure, not looking forward to the test, worrying if she'll pass. You get there, wait and wait, they make a few calls, sorry, it's cancelled. Go to the other building to find out why, but that's a dead end. It's like you're invisible. Pay for your parking, go home. 

[MooseMom]

OMG, what a total nightmare.  I would have stood there and cried.  I'm so sorry this happened.  How's Jenna? 

[okarol]

OMG, what a total nightmare.  I would have stood there and cried.  I'm so sorry this happened.  How's Jenna?

Once we got out of there she was relieved, I think. She went to her doctors office here in town to get her TB test read (also for the transplant eval, it was neg) so that's done.

I was proud of myself, and so was Jenna, for not raising hell. Usually I would, but there was no one there to scream at. 

[willowtreewren]

  to both of you!

Life should not have these petty frustrations in it. 

[cariad]

Jenna got a letter from the transplant coordinator on Feb. 17th telling her to come for an ultrasound and xray on Feb. 25 and and EKG on Mar 3 (weird they didn't plan it all on one day.) I took her for the appt. at 830 am this morning. Found it had been cancelled on Feb 18th. No one knows why. Coordinator was not in as she was "running late" and the nurse was out sick. They could not reschedule as no one knew why it was cancelled or had the authority to make a decision.

It's frustrating. It's not just the inconvenience, its the stress on Jenna, getting there early, morning traffic, negotiate the parking structure, not looking forward to the test, worrying if she'll pass. You get there, wait and wait, they make a few calls, sorry, it's cancelled. Go to the other building to find out why, but that's a dead end. It's like you're invisible. Pay for your parking, go home. 

Oh, man, it's like being back at USC! Hope you find out what on earth happened.

Oh, but wait. Pay for your parking??!! Karol, I know it's not really worth the hassle, but send them the bill. In Chicago, validated parking still costs $10. If they call me down there for nothing, they better have cash in hand.

Sorry to hear of the delays and other frustrations.

[okarol]

Wow - it gets worse.  The coordinator ASSISTANT, whose name is on the letter making the appointments - said the letter should NOT have even been mailed. She was training someone and it went out by mistake. Good Lord! Then she told Jenna she has to do a PSYCH evaluation in a month - then they will schedule the other physical appointments. Mama ain't happy... and you know that's gonna turn out bad.

[RichardMEL]

I was about to write if the procedure was cancelled then a letter should have gone out and/or a phone call. OK, so the intern stuffed up (that's human) but clearly it was noticed - either by the system or a human who cancelled it - yet didn't bother to inform you? SLoppy.

I mean look, if you're set for the 25th early in the a.m. and the nurse or whatever calls in sick, I can understand that - you show up and there's not much that can be done, but it was cx a week before... sorry, bad deal. People don't need that.

re psych test and then further tests - yes, our lot did that with my sister - they only went so far with the phys tests, then waited on the psych test. The excuse I heard was that some of the later physical tests could be more invasive(or maybe expensive??) so they wanted to hold those off until passing the psych test (this was all on the donor side, since I never did ANY tests and only showed up at the psych test because I was told to, but it never made sense to me).

I hope this lot can sort themselves out and redeem things for you guys - added aggrevation, time and hasle nobody needs to waste. Of course I would also say try to not sweat the small things - in th egrand scheme of things it's pretty minor as long as she gets listed.. but I know that doesn't help when you're being screwed around.

[kristina]

I am so sorry this happened, okarol.

I do hope Jenna has better luck in the future.

Best wishes from Kristina. 

[Chris]

 

Jenna got a letter from the transplant coordinator on Feb. 17th telling her to come for an ultrasound and xray on Feb. 25 and and EKG on Mar 3 (weird they didn't plan it all on one day.) I took her for the appt. at 830 am this morning. Found it had been cancelled on Feb 18th. No one knows why. Coordinator was not in as she was "running late" and the nurse was out sick. They could not reschedule as no one knew why it was cancelled or had the authority to make a decision.

It's frustrating. It's not just the inconvenience, its the stress on Jenna, getting there early, morning traffic, negotiate the parking structure, not looking forward to the test, worrying if she'll pass. You get there, wait and wait, they make a few calls, sorry, it's cancelled. Go to the other building to find out why, but that's a dead end. It's like you're invisible. Pay for your parking, go home. 
 

Time to submit a bill to them for your expences I say

[rsudock]

okarol just wondering how the waitlisting is going?  How are you and Jenna doing? Did you see on another thread I met Patrice?  Aaron's uncle, who lives in Wooster, passed away and I met her at calling hours! What a small precious world. It really made my day!!

xo,
R

[okarol]

okarol just wondering how the waitlisting is going?  How are you and Jenna doing? Did you see on another thread I met Patrice?  Aaron's uncle, who lives in Wooster, passed away and I met her at calling hours! What a small precious world. It really made my day!!

xo,
R

How did I miss that you met Patrice?? Wow that is amazing. I love that!! 

Jenna did meet with the psychiatrist. They want to be sure she is prepared to go through what it takes to be waitlisted. She gave permission for them to speak to her psychologist. Not sure where they are with that.

Jenna is in apparent limbo at the moment. The "assistant to the transplant coordinator" sent another letter that said Jenna had to have a "voiding cystogram" which is where they expand your bladder to the ultimate capacity to check what the pressure is, and how well the bladder empties. Jenna has called once and written 2 emails explaining that she probably should not have the test as the pressure could damage her remaining 17% function. Also, she had the test numerous times BEFORE her bladder augmentation, which was done to resolve her bladder pressure, which is what originally damaged her kidneys. We cancelled the test while they sort it out. It's been three weeks and someone should eventually call someone, but we have heard nothing.
The assistant also added a note on the cystogram notice for Jenna to bring in results of her most recent mammagram. HUH? How many 25 year olds have had a mammogram?? Once again it's a case of the pencil pusher not reading the patients file.
I am very close to ending the evaluation with the LA hospital and asking Jenna to go 2 hours south to the other hospital. We hoped to get it done closer to home, but it's beginning to feel futile.

Thanks for checking on Jenna! 

[Chris]

Wow, starting to sound like it is time to try other center with all the dilly dallying around. If they damage her bladder, what are they going to do next? They need to look at her whole file and not just the first page.
 
Good Luck to Jenna

[Sax-O-Trix]

You would think the second time around would be a bit easier...  I think you should start up with the 2 hr. away transplant clinic, it sounds like your current one is dragging it's feet for some reason.  Is this the hospital Jenna had the first transpant at?

[okarol]

The current LA evaluation is not where she got her transplant. She had been wait listed there for 3 years but when we multi-listed her down south, she decided to switch her wait time down there because they were so efficient and kind to her. Then we met her donor and the south hospital was very good about follow through. (Sorry, this may sound confusing but I as you may know I am purposely not identifying the transplant centers to avoid the possibility of prejudice against Jenna due to my posts.)

But I think if things continue as they are Jenna will be better served elsewhere. It's more driving and overnights down south, but they will do their best to schedule everything in one day, two at the most.

The reason we have tried to be tolerant of the current center is because Jenna's fabulous nephrologist, one of the best in his field, is here in LA at that center, and he had hoped to help Jenna through the process. But even he could not have imagined all the detours and delays that have come up.

[willowtreewren]

I can hardly imagine how frustrating this must be. 

Hoping things smooth out soon.

Aleta

[Chris]

I'm thinking why wait. If the doctor is surprised at the facility he works at, to me that is not a good dign. How much could it hurt to talk with the other facility to get the ball rolling. If it's a pain now, how will you and Jenna feel with the post care? You want someone or someplace you can trust and feel comfortable with, which at this point so far is not hapening and is becoming more stressful that is not good for either of you.