Jenna's hoping to get wait listed

[okarol]

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.

[Chris]

Ahhh, the ol' Catch 22

[lawphi]

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.   

[rsudock]

what is up with hospitals making you jump through a ton of hoops?  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

[okarol]

First, the good news! 
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." 

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.

 

[lola]

OMG Karol so sorry you and Jenna have to deal with this

[paris]

Excellent post.  I think many of us relate to the frustration part. 

[willowtreewren]

It fails the imagination as to why this has to be so complicated. 

I'm so sorry that you and Jenna are going through this AGAIN! 

 

Aleta

[boswife]

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 !!

[Chris]

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 ) 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 , but after taxes, it's more like half a cent.

[rsudock]

First, the good news! 
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." 

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.

 

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

[okarol]

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. 

[monrein]

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. 

[The Noob]

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.

[rsudock]

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

[lola]

 

[olivia]

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 

Keep pushing on and NEVER KEEP QUIET!! No hears quiet!

I wish you the best

Olivia

[Ken Shelmerdine]

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.

[Desert Dancer]

Karol, this really sucks and I'm so sorry you and Jenna are going through this.  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!

[okarol]

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.
 

[MooseMom]

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!

[okarol]

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.

[Wattle]

   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!     

[cariad]

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. 

[jbeany]

Jenna's got the stick today!  Look out!