Jenna's hoping to get wait listed

[Chris]

I still do not know what to write yet about latest happenings. It's frustrating to hear what is going on.

[RichardMEL]

Jenna may have the stick, but she seems to use it appropriately and politely (yet firmly). I like that she pointed out how she was being treated, but tried to do it in a fair and unbiased way (as in not singing out anyone). I thin the term "invisible" sums up so much of what's been going on for her so well. Yes, I would be proud of her too.

Let us hope the TC really *does* get back to her as promised and that things actually get better as opposed to lip service.

You can tell Jenna from *ME* she's way too good looking to be invisible!!  (alas I can not help with her transplant )

[okarol]

Jenna told me she got an email today from the assistant transplant coordinator:
...................
Hi Ms. F____,
We received auth approval for your Kidney Transplant. Maria  _____ your coordinator would like for you to come in for a Listing Class either on Tues August 16 @ 10a.m. or Wed. August 17 @ 9:30a.m.
 
Thank you.
.....................
She seemed pleased and I am too, I think. It doesn't really sound official, and I have never heard of a Listing Class, so it might still be something she has to do before she's actually on the transplant list. Who knows? 

[jbeany]

At least the word "approval" showed up in there.  Sounds like a step in the right direction to me.

[monrein]

Wow, a listing class?  Curiouser and curiouser exclaimed Alice!  I say just print up what you expect of ME and then YOU make sure you hold up your end(s) of the bargain.

I would very much like to know how people here in Canada are finding the process of getting on and staying on the transplant list.  I'm sure everything has changed since 1983 or so when I did it.  I don't recall any major hoops to jump through.  The transplant coordinator was brutally honest with me about risks and what to expect post transplant and she was also extremely kind and compassionate. 

I'm pleased too that Jenna is at this point and think she could probably teach the ^&%$* "listing class".   

[Chris]

Listing class?
Sounds more like lets get as much money from the insurance company as we can!
 This seems odd to me since I never had to do that with the two centers I was involved with.

[okarol]

The "listing class" is what appears to be the center meeting the UNOS requirement for providing education. The coordinator ushered in a group of 7 patients and some had family with them. She briskly ran through everything you needed to know about transplants in 25 minutes (or less.)
Then they took larger vials of blood and Jenna was done.
We don't know how long until she's officially listed, but Jenna emailed them to ask.
I learned a couple of things.
They work with a paired donation group (although when I asked which one, the coordinator did not know.)
She said that the patients accrue wait time based on the day they began dialysis OR to the date the GFR was below 20. I asked, to be sure, as I never heard about the wait time related to the GFR, I just knew patients have the right to be listed at that level, and she said yes, Jenna would get 20 months of accrued time. I hope she's right.
I'll feel better when we get a letter confirming she's on the list.

While waiting at the lab I spoke with a man who was transferring from another Los Angeles hospital. He said he had been waiting to get approved, on dialysis, for 8 years. He thinks his old hospital was milking his insurance all this time. His wife is a match for him, but they kept coming up with all kinds of stuff, months of dental work, unnecessary procedures, while both arms were needled to pieces and he's got no vascular arm access anymore. He's had a chest catheter for 2 years and at one point when he had to have it flushed out, he had a seizure. Jeez, poor guy, he's been through it all. Now he's getting listed! I hope he gets a transplant. His wife is ready and willing.

[Chris]

Not sure how to react to this.
I don't like hearing the rush through bit, not knowing who they use,, and something else. To do it so it meets a requirement and to rush people through it is wrong, it should be beneficial to both parties even though this is the first center I have heard of having this class.
 
To bad you couldn't tell the gentlemen about the problems you and Jenna have gone through there, he may have ran out though!
 
Maybe it's just me, but I wish there was a standardization of this process across the country of how one is listed with the ability to have each center having their own choice still of who they accept. Cut out some of these unnecessary test, keep all in the loop of ones care, especially the paitent, annnd Well it might cut down on Medicare and insurance expences and I'm not running for president, congressional seat, governor, mayor, or any other political party!

[MooseMom]

Nope, never heard of a listing class...never had any damn class of any kind offered to me.  Maybe here in Chicagoland, they want to keep us dumb.  I dunno.

Okarol, can you tell me more about how they let you accrue waiting time?  I have a listing date (27 July 2010), and my time has been accruing from that date.  My egfr went below 20 in Nov 2009 (and I have the labs to prove it), so why can't MY accrued time have started then?  Who decides that?  I have my first annual listing/pre-transplant workup that I'm trying to schedule (that's another story...they forgot me), so is this an issue I should bring up at my appointment?  I'd love to have an extra 7 months accrued!!!

[okarol]

Your state might be different. The transplant coordinator told me something that is different than it was a few years ago so I am going to keep researching to be sure it's accurate.

[Chris]

MM, we share a system with Indiana, and either Ohio or Wisconsin. TRIOS is invplved with the the lisitng that works with UNOS from what I remember. I will have to look froom my information. Not sure if it is on my bookshelf or in the basement. I'll try to find that by tomorrow.

[okarol]

 
Jenna got good news yesterday - she is now on the US national organ transplant list. As you may remember, she got a kidney transplant nearly 5 years ago and after a rejection episode 20 months ago, she's been stable at about 18% function. Her Brave Little Kidney keeps on truckin! This last month her function was the best it's been - we just marvel at that tough little bean!
The wait time in Los Angeles is now 10 years for a deceased donor kidney, so she hopes a living donor will be a possibility for her. Getting listed is the first step! It means she can look forward to the future.

Thanks everyone, for following her story - and all the support. 

[Darthvadar]

Great news!....

Hope the call comes VERY soon....

Love...

Darth...

[jbeany]

 

[MooseMom]

I hope someone will step up for her again.  This is really good news!  I know you all have had some frustrating times getting her listed.

[cariad]

Jenna got good news yesterday - she is now on the US national organ transplant list. As you may remember, she got a kidney transplant nearly 5 years ago and after a rejection episode 20 months ago, she's been stable at about 18% function. Her Brave Little Kidney keeps on truckin! This last month her function was the best it's been - we just marvel at that tough little bean!
The wait time in Los Angeles is now 10 years for a deceased donor kidney, so she hopes a living donor will be a possibility for her. Getting listed is the first step! It means she can look forward to the future.

Thanks everyone, for following her story - and all the support. 

Fantastic! Listing class was a new one on me, but it sounds like it was relatively painless aside from the hassle of blocking off time to go. They must have changed these requirements in the 3 years since I was listed in SoCal. The only Cal orientation I ever had to attend was at UCSF. UCLA wanted me to go to some daft FOUR HOUR lecture and I essentially told them not if you were the last hospital on earth!

I hope this all works out for Jenna and there is no second round of dialysis.

[lou]

Hey Okarol, ive been away for the summer and just got back and read this. Really glad Jenna is now on the list after all the stress you have had getting there. Here's hoping a living donor becomes an option for her really soon.
Love x x

[rookiegirl]

I've been away for such a long time from IHD and I'm so sorry.  I just wanted to let you know that I'm praying for Jenna and the rest of your family.

[rsudock]

Alright great news!!

xo,
R

[Sunny]

I'm glad to hear Jenny's on the transplant wait list. Very good news. I hope she is successful in finding a living donor transplant. Thinking of you!

[okarol]

 

[tyefly]

Updating myself with Jenna's progress.... and I am glad she is now listed.... I was worried..... I too was in the process of transfering to a transplant hospital who does paired donation because I had a donor with wrong blood match.....  I have been calling and calling all summer, been trying to get transfered since early this year... ... all my testing is done but the hospital is still in contracts with my insurance..... they said that it may take two years for contracts but that they will  bring me in to keep the testing current....Yes I am thinking  they are too milking the insurance....  my donor who has not had any testing because they wont test him untill contracts are done has almost given up anyway.....  This system is very hard to sort thru and push thru....  I realize that everything needs to be paid for but how many times... again ... the bottom line is Jenna's is now listed..... Now to find a living donor.....  Karol you will find a living donor for Jenna... you have the resources and knowledge...it will happen.... bottom line.....  Jenna    let find you a kidney......

[okarol]

The hard thing is that I feel like we are proactive, knowledgeable and willing, but this nearly 10 month struggle has humbled me once again. It boggles the mind, how difficult it has been. The communication is the biggest problem, and as I have said before, some hospital staff have no idea what it is like to wait for guidance, wait for a response, wait for the next step. If we didn't push this would not have happened. I am one of those people who believe "things turn out for the best" but that doesn't mean sitting on our hands and expecting something to happen. Each step of the way you have to know what you want, and you need to ask questions, ask for appointments, check on results and follow up. That being said, we tried doing all that, but despite our best efforts, it took nearly three times as long as it should have to get wait listed. I know not everyone is eligible for a transplant, but for those who can get one, I hope your process goes better.

[The Noob]

bless your heart, you are such a go-getter! in michigan, when your cleared for the list, your wait time/position/ starts from the day you started dialysis. good in MI as the wait time is now over 6 years average. ohio doesn't do this, but we were told by tx clinics that a few other states do. ohio has a short wait time, 18 months average.
course we were told that from the time we attended the info meet, it would 2 months (with living donor who had not been tested yet) till surgery. its 3 months now. the fact that someone comes voluntarily to offer is a miracle. the feet dragging is infuriating!

[okarol]

Jenna is waitlisted in Los Angeles, and next week she has an appt. to multi-list in San Diego. The week after that she has an appt. at another Los Angeles transplant hospital to hopefully be evaluated. Each step is slow. Luckily she is feeling OK despite a GFR of 14 and creatinine of 4.1.