I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: okarol on May 11, 2012, 04:27:27 PM
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I haven't posted much about Jenna as it taps in to that frightened voice inside me that whispers "I am scared."
We have known her transplant has been rejecting, bit by bit the function is getting less and less.
Why is she one of the lucky ones?
She was diagnosed at 15 years old, on dialysis at 18, transplanted at 21. She's young, which is hard, but she will also see major improvements in kidney issues in her lifetime.
She spent 3 years on in-center dialysis, and even though it kicked her butt, and made her feel like her "life was on pause," she did not have any major incidents or hospitalizations.
It was tough to have 9 potential donors found to be unsuitable, but then she was given a kidney by an altruistic donor, a woman we met online, who came to Calif. from Ohio to donate, and wanted nothing in return.
Even though she is losing this kidney after undergoing intense rejection rescue to save it, the Brave Little Kidney has lasted 2 years since then.
So I feel like for each difficulty, there's been some really lucky outcomes.
Please help by keeping her in your thoughts as dialysis seems to loom in the near future.
Thank you. :thx; :thx;
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I'll be keeping her in prayer.
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:grouphug;
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:pray; God bless her and you.
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:cuddle;
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It's so hard having this many problems at a young age. I hope she can get another transplant soon. I know you said her antibodies were 100%. I recently got one and I had 97% antibodies. I hope she can be as lucky as I was.
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I think knowing when you are lucky in life is a rare gift. I hope with all my heart she gets another transplant soon.
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I hope she gets another transplant soon too. I think of you and Jenna often and will keep you in prayers. I cant imagine how hard it must be to see your child go thru this.
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God bless you and Jenna both!
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My thoughts are with you and Jenna.
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So good that u see things that way, does Jenna feel the same? Im quite new here but have read some of your posts, I hope Jenna is able to get another transplant soon, is she listed already? that must've been rough having 9 donors not suitable i dont think id even get 9 people wanting to donate to me lol. It must be tough for u too, how do u deal with it all, how old is Jenna now? I'm 30 and have had this hanging over me all my life, (my parents too obviously!) my parents were told i would die when born as i had only one imperfect kidney and no bladder. Ive had bladder ops and check ups etc all my life, but in view of what u r saying i am so so lucky as my kidney has lasted 30 years and i have a 4 yr old son and 10mth old daughter. In 2 weeks my dad is giving me one of his kidneys. I am incredibly lucky that he is a good match (was slightly better than mum) and at 66 healthy enough to do it!! Apparently he has superb kidney function his kidneys think he's 40 not 60 :) Your post had made me feel slightly better as i was really down this morning as i have another uti (had none for 7 mths and now have one this is the 3rd time its come back, does it every time time i stop antibiotics, this time i got to 5 days after). My kids are having ultrasounds on monday just to check their renal set up is normal , i have no idea how i will deal with it if one of them is not ok with everything else that is going on with me!!
I really love your comment about how jenna will see improvements in kidney issues in her lifetime, as this is something, i , being relatively young hold on to. My ultimate is that dad's kidney lasts long enough for dialysis to be obselete and no-one else will need to donate to me (the artificial kidney i read about on here!) or the other thing i read on here about not needing anti-rejection drugs meaning in theory good matchs are not a problem so maybe my hubby could donate (ive already told him to start working out for it lol!!)
I also think its amazing how Jenna's donor came forward like that to give to a stranger, restores your faith in humanity, are u still in contact? Is altruistic donation more common in the US than the UK? I think my centre have done about 3 altruistic donations compared to 80 related/friend ones per year. Or maybe not per year that sounds a lot!
Sorry gone on a bit, i wish u and jenna all the best and hope her kidney hangs in as long as it can, august last year after i had my daughter i was at 10% and they said id need dialysis in weeks, well here i still am feeling fine eating fine and not on dialysis functions at 8% but only dropped in the last 6 weeks so u never know Jennas might have a couple more years left in it!!
Marie xx
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You and Jenna are in my prayers. What is her creatinine at this point?
:pray;
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Thinking of you both!
I had heard that once you had a transplant, if you lost it, you were automatically back at the top of the list. Is that true ore just wishful thinking on my part?
Hope today is a good day for you both!
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My continous love and support for you both!
xo,
R
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If you have had a previous transplant you are not auto matically at the top of the list. However, there's a kind of points system and various things give you points that move you up on the list. A previous transplant is one of those things. So is the 100% antibody level. The theory is that you're so tough to match that if a match actually comes you should get it ahead of someone who has more possible matches. I think that my antibody level figured into my match coming earlier than expected.
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*huggles* for your whole lovely family!
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Thinking of you both!
I had heard that once you had a transplant, if you lost it, you were automatically back at the top of the list. Is that true ore just wishful thinking on my part?
Hope today is a good day for you both!
i thought it was if you donated one, and then went into renal failure and if u needed a kidney u would be put on top of the list.... bc if it was if u had a transplant and lost it, u would put top list, the fi4rst timers, like me, ould never get one
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Karol, you and Jenna are regular fixtures in my thoughts and especially since her trx started to go downhill. Always hoping for the best and most especially a new chance at a transplant. :cuddle; :cuddle; :cuddle;
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Will keep you both in our thoughts and prayers.
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I wish I had a magic wand. I'd wave it over you both and command that Jenna's kidney would heal itself. But in the meantime, I'll give you both my love, support and prayers for a new kidney that will enable her to avoid dialysis altogether. :grouphug;
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I will be keeping you both in my thoughts. I hope it a works out for Jenna. :grouphug;
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Please be assured of m caring thoughts and prayers. We have been with you and Jenna for this entire journey and we will continue to hold your hands. :grouphug; Definitely praying that she would be kept from D as long as possible.
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:grouphug; I often look for posts about how Jenna is doing after reading some of your lovely posts when I was on dialysis. I think you are such a strong person and always share such a wonderful attitude/outlook (even if you dont always feel it on the inside!) Hoping for a positive future for you and Jenna x x :flower;
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Just letting you know im sending prayers. :grouphug;
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Thank you everyone, the support is much appreciated.
You and Jenna are in my prayers. What is her creatinine at this point?
Last month it was 3.8 - labs this week show it's jumped to 4.6.
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Karol, I'm sending all good thoughts for Jenna. It's a tough struggle.
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Jenna and her amazing mama are always in my thoughts.
Love you both!
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:grouphug;
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I hold you, Jenna and your family in my thoughts and prayers. I have two children about Jenna's age and I think what you are going through must be very difficult. You have done so well for her in the past and I know you will continue to do so going forward. Hugs.
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I will be praying for her. I, too think it's wonderful that she had so many potential donors, but of course it is devastating to not have a good match. She is young, though, and I hope that new technology comes along that can give her a kidney that lasts indefinitely, and doesn't reject.....maybe they can grow her one like her native kidney,like those hamburgers they're working on! That's what I'm waiting for, my clone kidney!
I will pray that she can eek out some good time with this generously-donated kidney as well.
:grouphug;
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Jenna & Karol think of you both often...it is hard to be around the 4.5ish range...I remember thinking to myself I'm halfway there...Jenna stay tough. I know it is hard...the days that you are sad, its okay to feel that way...surround yourself with others that make you feel happy, strong, and positive too!
xoxo,
R
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It was six years ago today that Jenna received a kidney from stranger-turned-friend Patrice! While we hoped it would last longer, this Brave Little Kidney has continued to hang in there even after chronic rejection had the doctor saying she would be back on dialysis 3 years ago! This kidneyversary will always be a special day. We are forever grateful to you Patrice for giving Jenna 6 wonderful and healthy years!
I will make a cake and post it later!
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:bestwishes;
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:bestwishes; :birthday;
What was her last creatinine. Just curious.
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Creatinine is 4.2 and GFR is 13.
She is still too sick with this cold so I am going to try and make her cake tomorrow.
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Creatinine is 4.2 and GFR is 13.
She is still too sick with this cold so I am going to try and make her cake tomorrow.
Oh dear. She's definitely a fighter and so is that brave little kidney. She has been beating the odds for a long time now and I'm sure it's wearing her out. I'm sending healing vibes your way and keeping you both in my thoughts!! She has a lot of love and support at home and here on the forum! :grouphug;
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:2thumbsup; :thx; :-*
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Oh, I'm so sorry to hear Jenna has a bad cold. It's not the flu, is it? I hope she feels better soon. How are her spirits?
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Get better Jenna... sending love and prayers and happy kidneversary :)
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I hope that Jenna will be ok soon. I watched a movie on youtube about Jenna: Are you my type. Wonderful video.
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Oh, I'm so sorry to hear Jenna has a bad cold. It's not the flu, is it? I hope she feels better soon. How are her spirits?
I don't think it's the flu. She had sore throat, stuffed nose and cough. No fever or chills or body aches. She's been sick for 6 days so she's pretty tired of it. I got her a steam vaporizer going now so I hope it helps the cough. :thx;
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Ms. Karol, I've been keeping both you and Jenna in my thoughts lately. Even though I've never met the little lady I feel a real connection with her through your posts. I think you and my own momma would have lots to talk about and have many stories to share. lol And I know what it's like to be sick with a transplant, I think it makes you feel 20x worse; even with a common cold. I sure hope Jenna starts feeling better soon. Send her our love.
:grouphug;
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Here are Jenna and her sister Becca volunteering at the Renal Teen Prom held yesterday in Los Angeles, CA. Jenna is still recovering but feeling better.
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They look great! Glad she got to go.
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april and i think of you guys often. facebook and ihd help to know what's going on. just wish we lived closer so i could give you a big hug. :cuddle;
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Get better Jenna... sending love and prayers and happy kidneversary :)
I hope that Jenna will be ok soon. I watched a movie on youtube about Jenna: Are you my type. Wonderful video.
Ms. Karol, I've been keeping both you and Jenna in my thoughts lately. Even though I've never met the little lady I feel a real connection with her through your posts. I think you and my own momma would have lots to talk about and have many stories to share. lol And I know what it's like to be sick with a transplant, I think it makes you feel 20x worse; even with a common cold. I sure hope Jenna starts feeling better soon. Send her our love.
:grouphug;
They look great! Glad she got to go.
april and i think of you guys often. facebook and ihd help to know what's going on. just wish we lived closer so i could give you a big hug. :cuddle;
Oh, I'm so sorry to hear Jenna has a bad cold. It's not the flu, is it? I hope she feels better soon. How are her spirits?
:grouphug; :thx; :thx; :thx;
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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
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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
:cuddle;
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Hope Jenna gets lucky and soon!!! She is such a beautiful young woman and she deserves a better youth. Prayers for both of you my midnight friend. :grouphug;
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:cuddle;
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My thoughts are with Jenna and her Mom! Hoping for all the best for you in this journey. Keep up the good fight! :boxing; XOXO
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From one parent to another, :bestwishes; to Jenna!!
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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.
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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.
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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.
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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.
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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
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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?
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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
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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.
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:cuddle;
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:grouphug;
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big big hugs to you both !!!
:cuddle; :cuddle; :cuddle; :cuddle;
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.
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there is absolutely nothing wrong hoping for the better of your family members.
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:'( :cuddle;
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.
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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.
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Both you and Jenna are regularly in my thoughts Karol and I so wish that things were different. Much love to you both. :grouphug;
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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. :waving; :thumbup; :2thumbsup;
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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. :thx; :thx; :thx;
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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!!!! :yahoo;
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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. :cuddle;
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That is great news Karol and Jenna! So glad she is able to get with someone that can answer her questions.
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My caring thoughts and prayers are with you both. :grouphug;
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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.
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:thx; :thx; :thx; Thank you
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Okarol, does Jenna's doc want her to make a decision by a certain date? This must be so very hard for your entire family. I wish you all well.
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Okarol, does Jenna's doc want her to make a decision by a certain date? This must be so very hard for your entire family. I wish you all well.
I think it is impossible to predict. They have been saying "soon" for 3 years. Her GFR is 13 so we know its approaching but as far as symptoms are concerned, she is doing well. No fluid retention, loss of appetite, headache, nausea, or vomiting. She is a little fatigued.
Thank you.
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I have continued Jenna's story as her training for peritoneal dialysis began http://ihatedialysis.com/forum/index.php?topic=29459.0