Jenna's hoping to get wait listed

[galvo]

A long drawn-out process, but the result will be worth it, eh?

[Rerun]

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.

       

[cariad]

Good luck, Jenna!!!

[okarol]

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.

       

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.

[MooseMom]

Oh, I hope all of these appointments will yield good results.  What a frustrating way to live.   Keep us posted, OK?

[okarol]

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

[Cordelia]

Best wishes!         

[Ken Shelmerdine]

I hope and pray Jenna can get a new kidney as soon as possible. Thinking of you both.

[Cordelia]

I hope she doesn't have to wait too much longer!

[okarol]

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.

[okarol]

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

[Chris]

Jenna has good taste in cars, color wellllll 
 
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.

[okarol]

Jenna has good taste in cars, color wellllll 
 
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.

She loves purple.

[cariad]

Wow! Great pics and Jenna looks so mature and relaxed. Love the photo of James behind the sign!

[galvo]

Good stuff!

[okarol]

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!

[justme15]

good looking family!!

[MommyChick]

Great Picture of your Family!     Happy Thanksgiving!

[jeannea]

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.

[okarol]

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.

[MooseMom]

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.

[jeannea]

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.

[Sunny]

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.

[okarol]

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.

[Zach]

You know what's best.
Stay Strong!