I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Transplant Discussion => Topic started by: okarol on October 21, 2010, 09:37:10 PM
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Jenna has started the ball rolling to get listed again. Her local nephrologist recommended she start the process and begin to accrue time, even if she is inactive. It's a lot to do, but she's made contact with the coordinator and has a long list of things to achieve (pap test, dental check up, any imaging from her urologist, records from her transplant hospital, meds list, recent lab report, etc, etc.)
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I apologize if I've missed some crucial info along the way. I always keep my eyes open for new news about Jenna, but I could have missed something, anyway. Does Jenna's neph anticipate that she will lose her new kidney eventually, and that's why he is recommending she be waitlisted (and I am not sure I know what exactly that means), or has her condition seriously deteriorated?
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Is she listing at Scripps?
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I don't remember having to do much to get on the list, but I think it's kind of an automatic thing, unless there's a reason for you to not be on it. I think here, they put you on it automatically, then do the testing, and if something comes up where you shouldn't be on it, they take you off. I got my last kidney after being on dialysis for only a month. I don't remember if I'd gone through any testing besides blood at that point.
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Her GFR is below 20%, the threshold for being listed. It's actually 18% now, and has been steady since January. She can accrue time and hopefully eventually find a living donor and get a pre-emptive transplant. Otherwise the wait time here in Los Angeles is 6 to 8 years for deceased donor, and she's got a high PRA so it could be even longer. Her neph feels she should get listed and she can remain inactive but accrue time. He said barring an infection or dehydration she might last years at this level, but you never know. If it's anything like the first time, it took months to get through everything, and they have over 500 patients waiting for a kidney, so nothing is going to happen overnight. YLGuy, she is not listed at Scripps, but can dual list as soon as she completes the evaluation here.
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Wish the very best for Jenna.
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I'm sending Jenna my best wishes as she navigates the maze of testing and listing. And of course I'm sending you my love to continue supporting her as she does. :cuddle;
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Best of luck to Jenna.....
Probably very wise to get the ball rolling now...
Hope it all works out....
Love...
Darth...
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Jenna is always in my thoughts. It makes sense to get listed and start the clock ticking. When the time comes, do you think you will look for a living donor? I know you will do everything in your power to get that second kidney for her. We all need someone like you on our side. :cuddle;
Jenna can get through the evaluations :2thumbsup; She has done this all before and knows what to expect. I am praying the kidney stays at the current level for a long time. And in the meantime, she will be marking time on the list.
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:cuddle;
Better to be over-prepared, certainly. I hope she doesn't need one any time soon, but best to get going. There's a lot of hoops to jump through!
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Yes, queue up as soon as possible, I say.
Best of luck to you, Jenna. Perhaps the next one will be a preemptive, and ages away at that!
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Best wishes to you the pair of you.
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My caring thoughts are with Jenna (and you) at this time :grouphug; Hope everything goes well, and that she doesn't even need a new kidney for a long long long long time!
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you guys are soooo on top of things. I surely hope she wont need it for ever actually, but im so glad your prepared... :grouphug;
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:cuddle; I wish her nothing but the best. And I hope she can find another living donor before ever having to start dialysis again. I want to meet Jenna. Yet ANOTHER reason for Paris and I to come to L.A.!!!!
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I'm happy to hear she's getting listed. The wait can be so long that she should definitely shoot for that goal as soon as she can.
I hope her kidney continues to do well for her, but in the mean time, the list is the way to go for now. Good luck.
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:cuddle;
You never know what is in our future so I think it is a great move to get relisted now. She can accumulate wait time while her little kidney still chugs along happily at 18%. :) All the hoop jumping is a pain in the butt, so while she is feeling good get it over and done with. Jenna can pass all those tests, she has amazing courage and inner strength. Like Paris she is never far from my thoughts.
Maybe that magic little gift is out there just waiting for the right time for Jenna. :flower;
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Karol and Jenna. Thinking of you both. :cuddle;
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It must be hard to face all this again. I know the prospect of losing his kidney hit Gregory very hard when he had to consider the idea recently. Hopefully when the time comes, there will be a clear and straightforward path to a new kidney.
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After 2 months of waiting (Jenna completed the transplant questionaire, sent in her meds list, 6 months of medical history, her recent lab results and has gotten her dental and gynecological check ups done) she finally got a call to come in for a transplant evaluation. She has an appointment next week, all day, and will see the transplant coordinator, neph, social worker, financial, surgeon and give labs. Hopefully it goes well. It's been almost a year since she was treated for rejection, and had lost most of her transplanted kidney's function. She's still around 17 %.
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Good Luck to her! I hope she can hold on to 17% for a while longer! :cuddle; :thumbup;
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Wouldn't ya know it... I mention evaluation date and they call and postpone it. Luckily its only a week, Jan 4th, so Jenna can relax. She is taking a much bigger role and interest in the whole process, which is great. :bow;
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Good for her! It must not be fun for her to have to think about all of this. It's not fair that anyone should have to go through ESRD, especially if you are young like Jenna. I'm really glad she is doing what she needs to do to take care of herself. It's an attitude she will need to survive and to be healthy.
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I am praying for Jenna and you too Karol :angel;
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I'll keep her (and you) in my prayers. She is so young to have to go through all of this again. :pray;
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Ah, great news. So glad she is taking a proactive role now. Much better to captain your own ship. Love you two.
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Keeping Jenna and your family in my prayers.
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okarol how old is jenna? i feel for her or any young person (even though i'm pushing 30 eek!) trying to deal with this disease and all the pressures of being young.
xo,
R
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Good Luck to her on the appointment.
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okarol how old is jenna? i feel for her or any young person (even though i'm pushing 30 eek!) trying to deal with this disease and all the pressures of being young.
xo,
R
Jenna turned 25 last month. She was diagnosed at 15 years old, started dialysis her senior year of high school and got a transplant at 21.
You're very young too!
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aw another kinder spirit.... :)
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Karol I'm sending my thoughts and best wishes to you and jenna for the best outcome. I'll be thinking of you on the 4th of Jan. :cuddle;
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I'll be surrounding you and Jenna with lots of prayers and love on the 4th. She has taken such good care of herself this year. I'm proud of her.
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good luck :2thumbsup; :2thumbsup; :clap;
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I'm sure things will go well with the evaluation. Jenna's so lucky to have an incredible mother like you - you're truly in inspiration. I'm sending you and Jenna my hope and positive thoughts.
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Okarol
Like Paris you have contributed so much time to helping members on this board with helpful replies and links to vital information. Here's hoping what you have scattered comes back to you and Jenna in the form of a preemptive transplant and many years of vibrant life after.
Ed
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I have the iPad with me at the transplant evaluation so the waiting is less painful. But of course now they have taken every one of the the other 12 patients for their appts. And we are sitting alone, wondering if we have been forgotten.
They do the orientation in a conference room and each patient was required to bring a friend or family member with them to view the film and here whatbthe transplant nurse and living donor coordinator had to say. Only 2 people asked questions, and you know I was one of them. :)
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Bet it's been a long day!
Hope Jenna gets wait listed :pray;
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I hope all goes well and Jenna gets on the wait list soon!
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Yes, a long day. Took about 6 1/2 hours, then ten vials of blood.
7 steps
Nurse, vital signs
Evaluation class, video and living donor coordinator
Nephrologist, hepatologist
Surgeon
Social worker
Dietician
Financial counselor
Transplant coordinator
Next step is for the team to take case to the committee in 3 weeks. Hopefully it will be good news.
Then they want a pap smear, dental clearance, chest X-ray and abdominal ultrasound.
The wait time in Los Angeles is 10 years. They said that living donation is the way to go.
I asked if they accept altruistic donors met through church or internet or other ways. They do. Also asked if they do preemptive transplants and they said it is preferred. That's a big change from when Jenna was listed there 6 years ago.
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Oh man...did they make her sing and dance, too? What a long day!! I'm waiting for the good news!
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3 weeks will go by fast if you do not think about it and are busy with other things. Good Luck to Jenna.
Also, where you posting using the iPad? If so, I wonder why I can't with the iPhone since it is the same OS and browser. :urcrazy;
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:thumbup;
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hang in there Jenna and Karol!!! thinking of you...
xo,
R
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3 weeks will go by fast if you do not think about it and are busy with other things. God Luck to Jenna.
Also, where you posting using the iPad? If so, I wonder why I can't with the iPhone since it is the same OS and browser. :urcrazy;
Yes the iPad worked great (even though I am slow, and some things I just cannot figure out.)
I wonder if anyone else was posted using an iPhone - that would be a good topic Chris!
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Got lab results today. Another stable month for Jenna's Brave Little Kidney - still running at creatinine of 3.4 - and it's been one year since the rejection! She celebrates her 4th kidneyversary on Jan. 16. Her GFR is 16 and she could get a transplant anytime, but we'd love to keep this one going as long as possible. The best thing that has happened this year is Jenna's involvement in her care. She's learned so much, and has taken on more responsibility for her meds, appointments, communicating with the doctors and learning about the lab results. And she's taken good care of herself and her kidney. :bow;
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Good.
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Such great news, Karol. Way to go, Jenna and, of course, the Brave Little Kidney! :clap;
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With her active involvement and an incredible roll model helping her, I think Jenna's got a great chance of holding on to her kidney for a good long while. I am keeping you guys in my thoughts.
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This sux, her needing another kidney...
Wish she wasn't going through it all again so soon :(
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thinking of you and Jenna.....
xo,
R
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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!
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Great news!!!!!....
Onward and upward!!!!!!....
Darth...
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:cheer: :cheer: :cheer: :cheer:
Yay Jenna!! I am doing a little happy dance :bandance;
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!
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:bandance; :bandance; woooooohooooooo
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Great news!! A small but significant step for Jenna, and your whole family. YAY!
:bow; :bow; :bow; :bow; :bow; :yahoo; :yahoo; :yahoo; :yahoo; :yahoo;
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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.
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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.
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Great news for Jenna! And you! :2thumbsup;
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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.
:banghead;
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OMG, what a total nightmare. I would have stood there and cried. I'm so sorry this happened. How's Jenna?
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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. :angel;
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:grouphug; to both of you!
Life should not have these petty frustrations in it. :thumbdown;
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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.
:banghead;
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.
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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. :stressed;
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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.
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I am so sorry this happened, okarol.
I do hope Jenna has better luck in the future.
Best wishes from Kristina. :grouphug;
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:o
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.
:banghead;
Time to submit a bill to them for your expences I say
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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
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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!! :clap;
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! :thx;
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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
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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?
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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.
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I can hardly imagine how frustrating this must be. :banghead;
Hoping things smooth out soon.
Aleta
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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.
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The plan was to get listed locally, then multi-list down south. The wait here in Los Angeles is 10 years and south is 6, so either way it's really long, and she will undoubtedly have higher PRA due to the first transplant. So she might need to be here at another hospital that does desensitization prior to transplant, or get into a swap program. For both of those she'd need a living donor, and right now she doesn't have anyone. She loved the hospital where she got her transplant and would gladly go there again, but they don't have these options that are available here in LA.
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Ahhh, the ol' Catch 22 :banghead;
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It breaks my heart to read this. Hammett's function held for years at pre-dialysis levels. I hope Jenna has the same success.
I hope you guys get great news fast. You should post her HLA information everywhere you can.
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what is up with hospitals making you jump through a ton of hoops? :stressed; It can be so frustrating!!! Yeah a mammogram on a 25 year old? Someone is not doing there job!! Get a PRA test to see how high Jenna's antibodies are...even though I am going to be on transplant number 2, mine are not that bad to warrant plasmaphersis. Maybe Jenna will get lucky too!! Hang in there Jenna!!!
xo,
R
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First, the good news! :2thumbsup;
Jenna's creatinine is lower on her June 8 labs: 3.15 with a GFR of 20 - this is the lowest creatinine and highest GFR since her rejection episode 18 months ago. By comparison, last month her creatinine was 3.48, GFR 17.
Last month's labs showed a Prograf level of 8.1 - so on 5/4/11 they had her reduce her Prograf from 3 morn/2night to 2/2.
Now her Prograf level is 3.2 so we decided to just go back to 3/2 - always a moving target.
The frustration with the transplant team continues. She met with the psychiatrist each of the last two months, as asked. It was a Mid April when Jenna asked why she needed to redo the voiding cystogram. After waiting 2 weeks for a reply she emailed the head of the transplant dept. He wrote back and said the urologist was the one asking for it (Jenna's never met him) and that they would get her prior scans and after "obtaining these we will keep you posted." That was April 27th.
Jenna's frustrated. I am pretty much done. This is the same lack of follow up and attention to detail that is a rerun of our experience with this hospital in 2004. They have promised it would be better, but it's not. If the patient doesn't push for action, either nothing happens or they come up with a list of things that do not apply to THIS patient.
This last Wednesday I sent a note to her nephrologist at Hospital A:
"Dear Dr. XYZ,
Jenna's wait list evaluation status has been basically dead in the water since this last
correspondence from Dr. ABCD 6 weeks ago. It feels like she has been forgotten.
What do you think about her switching to Hospital B?"
His response: "I will get back to you soon."
This is what's been going on since October 21, 2010. Nearly 8 months of slow progress and incomplete status. Jenna has done all that's been asked of her. She is entitled to be be actively wait listed. Yes, she might last a few years, but there are no guarantees. She could be getting desensitization, or working on a preemptive transplant.
I remember what it was like, the first time she was wait listed. She was 18 years old and had started dialysis halfway through her senior year of high school. We went to the transplant hospital and did all the tests. She met the requirements for financial and insurance coverage. Her final tests were a chest xray and EKG. Then she waited. And waited. Like so many other patients, we felt that surely we would get some word soon, hopefully good news, but something either way. Waited. Like good folks, patiently waiting. Finally, months later, we get a call. Ooopsie, her file sat in someone's in box because they were "between coordinators." :urcrazy;
Then, three years at that hospital before she was multi-listed and realized there was a much better choice out there.
It makes me so angry. Not just for Jenna (as I said, we've been down this road before.) But several times a week I hear from people who are waiting to hear something, anything. Some cannot even get an appointment for an evaluation! Others are waiting for word from their "team" and hoping to get the news that they are finished with all the tests and they are on the LIST. Some even have potential living donors, people willing to be tested! And yet, they wait to get the word, to have their evaluation finalized and to be approved to move to the next step. They are afraid to ask what's happening for fear of alienating the team they so desperately rely on to take them to the next chapter of their kidney life. Don't want to rock the boat. It makes me crazy, so mad and hurt - these are people - with a chronic disease - they have feelings, they need hope and encouragement - they need to feel supported! They are facing years on the wait list - help them to at least get started on the path.
No hospital is perfect. But some are certainly better than others. If a patient wants a transplant, why is it so difficult? And they have insurance and support at home. Why not shoot for a preemptive one if they are lucky enough to bring donors to the table? Why delay until they are so sick that they have to begin dialysis?? They should be able to obtain the care and service they desire, not go begging for it.
I would love to bring some patients to a hospital and give the transplant department some training. This is not a gas station you work in, or a Walmart. These are humans, facing their mortality -- give them some dignity. Return their calls. Check in on them. Act like you give a damn - or get out of the business of "caring" for patients.
:banghead;
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OMG Karol so sorry you and Jenna have to deal with this :banghead;
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Excellent post. I think many of us relate to the frustration part.
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It fails the imagination as to why this has to be so complicated. :cuddle;
I'm so sorry that you and Jenna are going through this AGAIN! :thumbdown;
:grouphug; :grouphug;
Aleta
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Your so right Karol and where do these people come from that they cant or arnt aloud to give a darn!!!! Breakes my heart knowing that your doing all you can and it just sits there. Bad enough when something trivial gets left to 'sit' but this is life were talking about.. Bet if it was your bill to them it wouldt be sitting. Makes me so mad.... I can only wish you more success than your getting and prayers for your precious Jenna.. And YOU !!
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Maybe say to Dr. XYZ that maybe we need to find another nephrologist to get the ball rolling better. But if I remember right from reading a few months ago, Jenna likes this doctor.
If he can't get answers then it's time to get out of the box and look for a new neph is my thought. And I thought my transplant center was bad (well still do :sarcasm; ) Seems they need to get off the pot or take...... as the old saying goes and either hire new qualified people who can help with their efficiency or start looking at ways to improve their care before they become that hospital in Florida you posted about in the news section.
My :twocents; , but after taxes, it's more like half a cent.
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First, the good news! :2thumbsup;
Jenna's creatinine is lower on her June 8 labs: 3.15 with a GFR of 20 - this is the lowest creatinine and highest GFR since her rejection episode 18 months ago. By comparison, last month her creatinine was 3.48, GFR 17.
Last month's labs showed a Prograf level of 8.1 - so on 5/4/11 they had her reduce her Prograf from 3 morn/2night to 2/2.
Now her Prograf level is 3.2 so we decided to just go back to 3/2 - always a moving target.
The frustration with the transplant team continues. She met with the psychiatrist each of the last two months, as asked. It was a Mid April when Jenna asked why she needed to redo the voiding cystogram. After waiting 2 weeks for a reply she emailed the head of the transplant dept. He wrote back and said the urologist was the one asking for it (Jenna's never met him) and that they would get her prior scans and after "obtaining these we will keep you posted." That was April 27th.
Jenna's frustrated. I am pretty much done. This is the same lack of follow up and attention to detail that is a rerun of our experience with this hospital in 2004. They have promised it would be better, but it's not. If the patient doesn't push for action, either nothing happens or they come up with a list of things that do not apply to THIS patient.
This last Wednesday I sent a note to her nephrologist at Hospital A:
"Dear Dr. XYZ,
Jenna's wait list evaluation status has been basically dead in the water since this last
correspondence from Dr. ABCD 6 weeks ago. It feels like she has been forgotten.
What do you think about her switching to Hospital B?"
His response: "I will get back to you soon."
This is what's been going on since October 21, 2010. Nearly 8 months of slow progress and incomplete status. Jenna has done all that's been asked of her. She is entitled to be be actively wait listed. Yes, she might last a few years, but there are no guarantees. She could be getting desensitization, or working on a preemptive transplant.
I remember what it was like, the first time she was wait listed. She was 18 years old and had started dialysis halfway through her senior year of high school. We went to the transplant hospital and did all the tests. She met the requirements for financial and insurance coverage. Her final tests were a chest xray and EKG. Then she waited. And waited. Like so many other patients, we felt that surely we would get some word soon, hopefully good news, but something either way. Waited. Like good folks, patiently waiting. Finally, months later, we get a call. Ooopsie, her file sat in someone's in box because they were "between coordinators." :urcrazy;
Then, three years at that hospital before she was multi-listed and realized there was a much better choice out there.
It makes me so angry. Not just for Jenna (as I said, we've been down this road before.) But several times a week I hear from people who are waiting to hear something, anything. Some cannot even get an appointment for an evaluation! Others are waiting for word from their "team" and hoping to get the news that they are finished with all the tests and they are on the LIST. Some even have potential living donors, people willing to be tested! And yet, they wait to get the word, to have their evaluation finalized and to be approved to move to the next step. They are afraid to ask what's happening for fear of alienating the team they so desperately rely on to take them to the next chapter of their kidney life. Don't want to rock the boat. It makes me crazy, so mad and hurt - these are people - with a chronic disease - they have feelings, they need hope and encouragement - they need to feel supported! They are facing years on the wait list - help them to at least get started on the path.
No hospital is perfect. But some are certainly better than others. If a patient wants a transplant, why is it so difficult? And they have insurance and support at home. Why not shoot for a preemptive one if they are lucky enough to bring donors to the table? Why delay until they are so sick that they have to begin dialysis?? They should be able to obtain the care and service they desire, not go begging for it.
I would love to bring some patients to a hospital and give the transplant department some training. This is not a gas station you work in, or a Walmart. These are humans, facing their mortality -- give them some dignity. Return their calls. Check in on them. Act like you give a damn - or get out of the business of "caring" for patients.
:banghead;
That is what's wrong with the medical field...many do not have patients best care at heart b/c we aren't people just a paycheck. All those people who work at a hospital...you would think that more people would get put on the list in a timely manner. It is so sad...Hang tough Okarol and Jenna!
thinking of you...
xo,
R
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Jenna had an appointment the end of June and she told the neph she'd had pain in her transplanted kidney. The doc ordered an ultrasound to be sure there was no fluid accumulation, or blockage or other problem. All looked ok. Jenna was started on antibiotics and also had labs done to see what was up. The labs took a few days and by then she was feeling better. When we left that appt. I told the neph how long and dragged out the transplant process was at the hospital, and we were very unhappy. He said he would try to find out what the delay was.
So here we are - a month later, and Jenna's having more pain. (more here http://ihatedialysis.com/forum/index.php?topic=23774.0 )
She has been seeing the psychiatrist as part of the transplant team. Yesterday her brother took her to the appt. and they checked in a few minutes early, hoping to be finished on time as her brother had something to do later. After 40 minutes he texted me and said she was still waiting, so I told him to have her check in again at the desk. There was no one in the waiting room the whole time. The person at the desk seemed surprised, then realized no one had told the psych she was there. So they took her in 15 minutes later, took her vitals, and had her wait 15 more mins. while the psych was on the phone. So by the time Jenna was in there, she was upset. She told her it wasn't the first time that she had been forgotten. And she said she didn't want to be difficult, but she had been waiting 9 months to get wait listed and there was no end in sight. The psych was sympathetic and offered to have the transplant coordinator come in right then to discuss it. That really upset Jenna as she was not prepared to go over what had or had not been done. She didn't feel comfortable and started to cry. They made an appt for Jenna and me to meet with the transplant coordinator and the psych on Aug. 3. Jenna told me she just wanted to get out of there, after 2 hours. She was a little ashamed that she didn't take the opportunity to speak with the coordinator, but I was proud of her for speaking her mind and being authentic about what she was comfortable with.
She's been hurting for days, and I will update that in the other thread. Yesterday I spoke to her neph who just came back from Indonesia, discussed her pain and just before we hung up I told him, "Jenna's done with your hospital." I described the psych appt. and he was very angry and upset. I think he wants to find out what's going on, but I don't think even he realizes he has no power to fix up the pathetic transplant team.
Now today we get a form letter (dated 7/19 but postmarked yesterday) which says:
"The following tests need to be completed to proceed you on the UNOS Kidney Transplant List. Per our surgeon Dr. ________ recommended a VCUG and Pelvis Ultrasound for a repeat since the last one was done in 2007. We are also awaiting pap smear test results."
An appointment was listed on the following page for her to be at radiology at 8AM on July 29.
Fat chance. >:(
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Oh Karol, this is all so horribly frustrating. It always seems to me that it's not the necessary stuff that we must go through that's the hardest but rather the stupid, mindless burden add-ons that leave us feeling trapped and/or forgotten. So sorry to hear about this tough time Jenna's having and I send you both my best thoughts. :grouphug;
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man, you guys hit it head on. i doubt much if anyone on the transplant team (or the D clinic/docs office) has ever been on D or a wait list. their attitude would be different.
several months ago when hubby met surgeon to do first fistula, we told of the difficulties we were having. right there in the exam room he called and griped out the nurse on the team. that got the ball rolling. now we are again having issues. there is only one living donor nurse who is heck to get hold of (daughter says) and our nurse, though very sweet, is also same. living donor nurse is on vacation and they can't get anymore info till she gets back.
its the "doing more with less" thing i think.
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It is very frustrating to navigate the healthcare system and deal with healthy folks who aren't giving it there all...so sorry Jenna that you are in pain too while you deal with imbeciles!
xo,
R
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:banghead;
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I have been reading yours and Jenna's story for a while now. So so very agonizing, what you have been going through. Your strength is an inspiration.
I think dealing with kidney disease is so very overwhelming, even for doctors and nurses that deal with us. Its easy to fall through the cracks if we set back and wait, like good little patients :sarcasm;
Keep pushing on and NEVER KEEP QUIET!! No hears quiet!
I wish you the best :grouphug;
Olivia
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I'm so sorry for what you and Jenna are going through. I've been following your story and it's unbelievable how inefficient and uncaring the transplant team seem to be. So many false dawns. I can only hope things improve for Jenna. :grouphug;
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Karol, this really sucks and I'm so sorry you and Jenna are going through this. :cuddle; I don't know what is wrong with people sometimes; how hard is it to just DO YOUR JOB? Seems like most of the people in the medical field nowadays have no business being there. Bet if it were their own child they'd be raising holy hell. Hang in there!
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Due to dealing with the pain issue, Jenna called the transplant team on July 27 to cancel the VCUG scan. Radiology called on July 29 on my cell phone to ask why Jenna had missed her appt - they never got the cancellation from the transplant team.
???
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Due to dealing with the pain issue, Jenna called the transplant team on July 27 to cancel the VCUG scan. Radiology called on July 29 on my cell phone to ask why Jenna had missed her appt - they never got the cancellation from the transplant team.
???
What a surprise! ::)
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I don't know what will actually come of today's meeting but I am so proud of Jenna for getting her point across. The psychiatrist was 1/2 hour late, had a meeting come up, and the scheduler had called everyone but Jenna. Helloooo? It was the perfect way to start the meeting. Jenna said she felt invisible. She said the communication needed to improve. She said she didn't want to criticize anyone or say they are doing a crappy job, but, "This is my LIFE!" The transplant coordinator came in (first time meeting her) and we went through a few of the examples of delays and missteps. She was apologetic and seemed to have constructive suggestions to remedy the issues. She said she will bring up Jenna's situation in their team meeting today and get back to her with a final decision on the scan. After that she would be on the UNOS list (well, after insurance approval.) I told them that Jenna could have had a baby by now, it's been 9 months. So we'll see. I am so jaded, I don't have much hope, but either way, their next steps will determine ours.
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:cuddle; Way to go Jenna!
Maybe having them all in the one room will show them the inadequacies in the way Jenna has been treated. You can only wait and see if the rocket has gone off under their butts! >:( :grouphug;
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Oh, Karol, I am proud of both of you!
When I switched hospitals in SoCal, I told the coordinator exactly why I was doing it, leaving out the part where she offended me (more than once). I told her all the scheduling problems that I had, that everytime I went in there, no one knew who I was or why I was there and I basically had to wait as everyone filled out papers and prescriptions that should have been waiting for me when I got there. I went in for my echo and as I was sitting there, a young man came stumbling in, out of breath, saying he just got a call while at dialysis saying he needed to report there immediately. They had no idea why! And he looked like he was dressed for work, so who knows what he canceled to get there. I told the coordinator that that place clearly had no respect for my time and all she could say was "So, that's a problem with scheduling!" Yes, I'm sure she was quite pleased with herself that she got out of there without having to face her contribution to the problems that are entrenched in their system. It is all of their faults!
I really hope Jenna gets listed, then takes her wait time and beats a path to another hospital. :grouphug;
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Jenna's got the stick today! Look out! :Kit n Stik;
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I still do not know what to write yet about latest happenings. It's frustrating to hear what is going on.
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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!! >:D >:D >:D >:D (alas I can not help with her transplant :( )
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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? :waiting;
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At least the word "approval" showed up in there. Sounds like a step in the right direction to me.
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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". :grouphug;
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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.
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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.
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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!
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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!!!
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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.
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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.
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:clap;
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. :thx;
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Great news!....
Hope the call comes VERY soon....
Love...
Darth...
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:bandance; :bandance; :bandance;
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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.
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:clap;
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. :thx;
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. :bestwishes;
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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
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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.
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Alright great news!!
xo,
R
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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!
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:thx; :thx; :thx; :thx; :thx;
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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......
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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.
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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!
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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.
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A long drawn-out process, but the result will be worth it, eh?
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I'm not sure how it would be to feel "well" and get the call........ But, she has been on dialysis before so I guess she would welcome the call. Hope one comes soon. They would probably leave in the working transplanted kidney and just put the new one on the other side.
:yahoo;
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Good luck, Jenna!!!
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I'm not sure how it would be to feel "well" and get the call........ But, she has been on dialysis before so I guess she would welcome the call. Hope one comes soon. They would probably leave in the working transplanted kidney and just put the new one on the other side.
:yahoo;
Unfortunately her antibody level is very high so it's very unlikely that she'd get the call. She most likely needs to bring a living donor to a center that can do desensitization so she can match her donor. But even that isn't easy. We are still researching.
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Oh, I hope all of these appointments will yield good results. What a frustrating way to live. :cuddle; Keep us posted, OK?
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Jenna is now wait listed at a Los Angeles area hospital and one in the San Diego area.
Due to her high PRA she will probably need many friends to be tested.
Or perhaps one of them would be willing to enter a paired donation program.
Holding off on desensitization for now as the long term results for someone so young are not in.
I have been following some of the advice from the Living Kidney Donor Network to help a donor find Jenna.
Their webinars are really helpful. Here's the link if anyone is interested http://lkdn.org
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Best wishes! :cheer:
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I hope and pray Jenna can get a new kidney as soon as possible. Thinking of you both. :grouphug;
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I hope she doesn't have to wait too much longer!
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The wait time here in Los Angeles is 10 years for blood type O for a deceased donor.
With 100% antibodies she's going to wait a long time.
Docs are hesitant to do desensitization since Jenna is so young.
So it will be necessary to look at a large pool of donors, or bring a nonmatching donor to a paired exchange program.
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On Sunday Jenna was the featured guest at a local ArtFest and Car Show. They had a big sign and announced that they were raising awareness about organ donation, and that Jenna needed a kidney donor. She was also asked to choose the "honorable mention" trophy which she awarded to a lavender colored 1958 Cadillac Coupe de Ville. Her brothers passed out flyers and spoke to folks about all the people on the organ transplant wait list. It was a great day.
Please visit Jenna's facebook page at https://www.facebook.com/pages/Wanted-Kidney-donor/246787398756603 and click on LIKE - thanks!
Photos:
Jenna and her brothers, James (behind the sign) and Johnny
Jenna and James and a nice roadster
Honorable mention
Jenna introduced
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Jenna has good taste in cars, color wellllll :rofl;
Sounds like a fun day there and hope something worthwhile comes out of it by putting a human face to it and not just paper.
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Jenna has good taste in cars, color wellllll :rofl;
Sounds like a fun day there and hope something worthwhile comes out of it by putting a human face to it and not just paper.
:flower; She loves purple.
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Wow! Great pics and Jenna looks so mature and relaxed. Love the photo of James behind the sign! :clap;
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Good stuff!
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Jenna had her birthday, she is 27 years old today. She's doing ok, sleeping more, not able to do as much. Dialysis is going to happen, it's just impossible to predict when.
These are my kids: Becca, Jenna, Johnny and James
Happy Thanksgiving to everyone!
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good looking family!!
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Great Picture of your Family! Happy Thanksgiving!
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That must be hard, dreading dialysis. I got to start dialysis while completely out of it. Otherwise I don't know how I would have done it.
I hope she had a fabulous birthday.
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Nearly 5,700 views to Jenna's video http://youtu.be/D9ZuVJ_s80Y
She has over 1,000 LIKES on her facebook page https://www.facebook.com/WantedKidneyDonor
We place ads every week on craigslist in 4 cities http://losangeles.craigslist.org/sgv/vol/3532968469.html
She has been featured on Living Kidney Donor Search http://www.livingkidneydonorsearch.com/our-stories2/jenna-franks2/
Also featured on Find a Kidney Central https://www.facebook.com/notes/find-a-kidney-central/a-list-of-those-in-need-of-a-kidney-on-this-page/166662046784598
Her story has been tweeted numerous times...
And yet, she has no donor.
A few people have contacted the transplant team, and they couple who are being evaluated are complaining about the "lack of urgency" from the coordinator.
Her GFR is 13. Her antibody level is 100%.
She's waitlisted at 2 transplant centers.
It's so frustrating. I know she will have to start dialysis soon but I cannot think about it.
She may have to start with a tunnel catheter.
I am feeling lost, I wish this wasn't so damn hard.
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Okarol, for the life of me, I can't think of one more thing that you can do. That's what makes this so frustrating. You've taken control over the situation to the greatest extent possible, yet you can't control the inaction of others.
I'm disappointed in the lack of urgency from the coordinator. Have you talked to him/her about this?
How does Jenna feel about the ever growing possibility that she will have to soon start dialysis? Does she ever talk about it?
I know how hard it is to see your child struggle and not be able to take away all of their troubles, especially when those troubles are not even their fault. It's just such a horrible feeling. I'm so sorry.
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I too wish it wasn't so hard. You're doing all you can. Don't give up hope. I know waiting times are worse out there. It must be awful. So sorry.
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You are doing all you can. Jenna is lucky to have you for her mother. I hope she can find a match through all the efforts you are pursuing. Wishing Jenna many more wonderful years ahead and the opportunity for a kidney transplant soon.
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It's been a few weeks since we got news, out of the blue, from one of the transplant hospitals that Jenna's waitlist status was put on inactive pending a voiding cystourethrogram. You may recall that we said we didn't want to her to do that test as it involves filling the bladder to bursting with fluid and contrast dye, and x-rays are taken from various angles while the bladder is full. Then images are taken while you empty your bladder. WE said NO because we're trying to hang on to what little kidney function she has left, and there was no reason given why this was needed, and why weren't they willing to wait until she started dialysis? Jenna and I spoke on the phone with the coordinator and basically told her we were surprised she was put on hold without a medical necessity. They were removing the option of her getting a deceased donor kidney in the very rare event that she could get called for a match. The coordinator said that it was required by the urologist, period.
I told the coordinator that we would not be bringing any living donors to be evaluated until this was straightened out. She said "Oh you can bring us donors, we can stil get them moving through the process." I said no. Honestly I was so pissed I really had to keep from screaming at her. Jenna moved her wait time to this hospital because they have a good desensitization protocol, but I was wondering if we had made a mistake. The other hospital never had Jenna on hold, even before her first transplant and she needed to have her bladder augmented to lower the pressure.
So we were at a stand-off. I didn't feel comfortable referring donors to them if they weren't going to try and work with our request. Maybe I come off as a bitch but I don't care. If they screwed Jenna up, do you think they'd take responsibility?? Sometimes you wonder if these transplant hospitals have the patients best interest at heart.
So a few days ago we got a call from the coordinator. She said their urology group for transplants was changing, and she happened to mention to one of the new urologists Jenna's case. He said, "Is this Jenna? I know her!" Turns out he's the guy that diagnosed Jenna's "non-neurogenic, neurogenic bladder" 12 years ago, when she was a pediatric patient! He said he'd like to see Jenna and decide how to proceed.
Today we went to see the doctor. He remembered her story. He asked tons of questions and went over what happens when they attach the ureretor to the bladder with someone who has had bladder augmentation, and said he would be present during the transplant. He said that there was no benefit to doing a voiding cystourethrogram, and that he felt he could get enough information from an ultrasound and pelvic xray. He said he would send notes over to have her status changed to active immediately.
Whew! What a relief!
I still am sending potential donors to the other transplant hospital, but until we get the green light from this one, we'll stay away. I need to know that Jenna is their priority, and I'm a still a little turned off by the experience. Jenna feels the same, but we may need them later if a swap doesn't pan out through paired donation.
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You know what's best.
Stay Strong!
:-*
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That test is so awful. I can see why you don't want her to do that. Keep being a great advocate!
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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. >:(
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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.
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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!
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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!
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Jenna got a call from the transplant coordinator today, she's active again! :2thumbsup;
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.
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Fabulous! Gotta be active to get a call. Hope it works soon.
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:thumbup;
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:clap; but at the same time I'm sad Jenna has to go through this again
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:clap; 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
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I updated in another thread http://ihatedialysis.com/forum/index.php?topic=26504.0
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Happy news, hope she doesn't have to wait to long.