Jenna - one of the lucky ones - let's hope it continues

[Wenchie58]

My thoughts are with Jenna and her Mom!  Hoping for all the best for you in this journey.  Keep up the good fight!    XOXO

[plugger]

From one parent to another,  to Jenna!!

[okarol]

Jenna's appointment on Tues. was a dialysis consult. Since her creatinine is now 4.7 they want her to be ready for dialysis. She is feeling frustrated because, as she told the doctor "Everyone has been saying I will need to start dialysis SOON.... for 3 years!" She started crying and the Phys. Asst., surgeon and coordinator all had tears in their eyes. They were gentle and caring and treated her so well, reassuring her but also being direct about the future.

Her fistula that she had for her first 3 years of dialysis quit on her transplant day 6 years ago. She had vein mapping a couple of years ago and the surgeon at her ex-hospital (she moved her wait time to another) said that she should have a submerged vein lifted and tacked in place to create a new fistula. Now the surgeon at the consult said he could knock her out, scope her abdomen to see if she's a good candidate for PD, and if all looks OK he would put a tube in. BUT if all doesn't look good (she had a bladder augmentation 8 years ago) he would try to reconfigure her old fistula to see if he can get it to work.

We have been working toward a preemptive transplant, but of course that looks pretty impossible given Jenna has 100% antibodies. In the last 6 months over 90 people have "said" they would call the transplant team (many from facebook, craigslist and twitter) but so far only one person has progressed to the point of actually getting scans, in-person interview and tissue matching. He is a great guy, a facebook friend of Jenna's Godmother - we met him Tues. and he is totally committed to this. He said he will do a swap or ABO incompatible or whatever is needed. (His blood type is A and Jenna is O so they are checking his titer to see if he can be ABO.) A swap would be our first choice, but we'll have to see what they decide.

Jenna has though all along she would do hemo, either in-center or home (not that she likes hemo, but it's "the devil you know", I think.) The surgeon suggested she give PD a try for at least 6 months. He feels it will be better for her. They recommended she talk to PD patients to get their perspective so she's doing that next week.

Of course I am feeling freaked, tired, sad, panicked, cautiously optimistic and hopeful, well, I bounce through those emotions hourly but today I am about 10% calmer. Nothing is moving fast enough. Due to Hippa laws, the coordinator cannot give us specific info about who is testing, or has dropped out, or anything except that there are a couple of other people in the process. I don't know if there's anything else we can do to slow the progression of her transplant failing, or to speed the donor evaluation process.

When we left the hospital we went to the flower fields, which have just started blooming. Jenna had a strawberry shake and felt better (another thing she will have to give up.)

I know many of you are long term dialysis patients, some waiting for transplants, and some ineligible to even be listed. So please forgive my post, I do not want to offend anyone. I know many of you have been through much more. It's my baby and I want so much for her life to be easier. Just wanted to update about where we are today. I don't share all of this on facebook, most people would not understand it all.

[kitkatz]

Boo to her having to start dialysis again.  I hope everything goes well for her.  PD might be a good fit with her being so young.

[MooseMom]

Okarol, I think you've reached the point where there is just nothing left for you to do.  That desire to DO something is so powerful.  My lowest moments over a span of 8 years were when I realized that there was just nothing that I could do to improve the situation, but it must be worse if it is your CHILD that you are fighting for.

It is hard to come to the realization that it is now time to have to trust in something/someone other than yourself.  Maybe the man you met will be the answer to your prayers.  Maybe the answer will come from a person you had never considered.

Has Jenna's surgery been scheduled yet?  I'm really glad to hear that the surgeon, et al were kind and gentle.  It must have been a hard day for everyone.

[okarol]

I think you're right, about acceptance. And faith.
No surgery scheduled yet. Jenna is going to meet with Lori Hartwell next week. She was on PD for 9 years, until it stopped working.

[lou]

Hi Karol, im really sorry its getting to this time and feel gutted you both have to go through all these emotions again. I'm hoping there is some really good news coming Jenna's way very soon. Sending lots of positive thoughts and love your way xxxxx

[MooseMom]

Karol, I know it's ultimately Jenna's decision, and I know her decision might be determined by what the surgeon can do, but if both modalities were appropriate for her, which do YOU think might be best for her, in YOUR opinion?  You've read so much about all modalities here on IHD, so what do you think?

[GoingThere]

On Wednesday I was at a clinic and there was an older gentleman who was told his Transplanted kidney 'died'. There were a lot of emotions and I felt really sorry for him.
I think of Jenna a lot and I was really hoping she would get a transplant before going back to D.
I'm so sorry okarol for what your whole family is going through. Lets hope that a kidney will emerge soon.
Due to her high antibodies isn't she a candidate for desensitisation?

Prayers,

GT

[jeannea]

Of course you want to make things easier for her. Never feel bad about being a loving parent.

It's too bad you can't find out who might want to donate. You could encourage them to get their testing done. But in the end someone has to really want to do it.

All you can do now is what you're doing. Be her advocate with the doctors. Support her emotionally. Love her.

[Zach]

 

[galvo]

 

[RichardMEL]

big big hugs to you both !!!

 

It's so hard when bit by bit things are out of your(or Jenna's) control.. like working to a preemptive tx, or avoiding dialysis etc... she's soldiered on very well for some years now and who knows.. maybe soon can stretch out more but she needs to think of her longer term health also

you guys are in my thoughts.

[Relentless]

there is absolutely nothing wrong hoping for the better of your family members.

[natnnnat]

 
It is so very very hard to watch them having to face dialysis, having to choose a modality (I CHOOSE NONE OF THEM! said Gregory).
She will eventually get another transplant, this business of antibodies doesn't sound like its an absolute dealbreaker (just a deal complicator extraordinaire?).  So this is a matter of getting through dialysis.  Which is a rough road, and so is the next transplant.  We are all gunning for her and the kidney that could, and the next kidney that can.  If that makes sense.

[Joe]

Karol, that has got to be so tough. As hard as you've worked on finding a donor to finally reach that point and not have somebody in the bullpen. PD isn't bad, for dialysis. If Jeanna wants to talk to someone else about it, give a call. I'd be happy to share my experiences on PD.

[monrein]

Both you and Jenna are regularly in my thoughts Karol  and I so wish that things were different.  Much love to you both.   

[dublin]

Finally got to celebrate Jenna's SIX YEAR KIDNEYVERSARY!
The cake tasted a lot better than it looked! She is wait listed for a new transplant as hers is only working at 13%, and puttering out. Each day is a gift. Love all our kids for coming to celebrate.
Nothing lasts forever - here's her kidney search page https://www.facebook.com/WantedKidneyDonor

What a lovely picture and smiles to match good luck.

[okarol]

So Jenna met with Lori Hartwell, I left them alone because Jenna really needs to explore this on her own. After a couple of hours Jenna seemed confident and much more knowledgeable. They discussed many aspects of hemo and PD, plus what it feels like to do PD, body image, time, lots of stuff. I think Jenna feels more able to make a decision now and I think she will try PD. The good thing is, if she doesn't like it, she can still get a fistula and train for home hemo later.

We heard from a man who has been evaluated for Jenna as a donor. He is type A and Jenna is O, and unfortunately he does not have the A2 blood titer that would allow him to donate to Jenna, but he is healthy in every way and the transplant team will be reviewing his case and hopefully will enter him into a paired donation program for to swap, as he is willing to do this.

There have been about 18 people contact the transplant team on Jenna's behalf, but he is the only one that we now know his status. It has taken since August to get him to this point. It feels like slow, slow motion.

Thanks for the good wishes and support. 

[RichardMEL]

Lori is so awesome. I'm so glad she got to help Jenna out and provide insight and information. It is a wonderful thing you were able to hook them up (of course I remember Lori had you on Kidney Talk ).

And so many people stepping up to help is also amazing. Jenna is such a lovely and lucky young lady to have you in her corner(and as her mother) and everyone around her supporting, loving and looking to help in any way.

Good news!!!! 

[lola]

Karol I'm sending you both BIG hugs!!!! Just know we are heal holding you up, remeber how FREAKED I was when Otto started OMG. So glad you have someone for the paired exchange program.

[Joe]

That is great news Karol and Jenna! So glad she is able to get with someone that can answer her questions.

[Bajanne]

My caring thoughts and prayers are with you both.

[BobN]

Karol, you and Jenna are in my thoughts and prayers.

It is so painful to think of someone so young having to go through this.  But she sounds like a strong and brave young lady, and I'm sure that with your love and support, she will do okay.

Bless you both.

[okarol]

  Thank you