I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: okarol on February 17, 2010, 03:59:29 PM
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Jenna and I drove to the transplant hospital and even with no traffic it took nearly 2 hours. She is getting an IVIG infusion that will take 8 to 12 hours, depending on how she tolerates it. The lab tech needled around in her arm to get some blood - poor Jenna - tears were streaming down her face, it hurt so bad. I felt sick to my stomach. We are trying to reserve her other arm for a fistula eventually but she has no veins left so she made them use it. The infusion is now going and they gave her benadryl so thankfully she's asleep. I was feeling cold, sitting here in the dark room, and the sweet nurse just brought me a toasty blanket fresh from the warming oven. Man that feels good. Hopefully the hours go by quickly.
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Think of the blanket around as hugs from us.
:grouphug;
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Yes, ditto from me. God bless you both.
You know what the picture is for....
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Those blankies feel sooooo good. Thinking of you both. Will say a prayer for you both at mass tonight when I get my ashes.
Mark
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Having a warm blankie at a time like that is as good as if they gave you a down comforter. What a great staff they must have. Prayers for Jenna. And you. :pray; :pray;
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Amazing what a warm blanket can do. :cuddle; Saying lots of prayers for Jenna. :pray;
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:grouphug;
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Its the simply things in life that we often cherish the most.... warm blankets... hot cups of chocolate.... the eyes of our children when they discover something new....... :cuddle;
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Thinking of you both, and sending prayers from NJ- :pray;
Anne
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Jenna finished her treatment at 10:45 and we were on the road by 11 PM. No traffic (but last time I drove at night there were miles and miles of construction delays) so we went a different route - got home in less than 2 hours. Jenna had slept all day and on the way home too. I fed her and got to sleep by 2:30. What a day. Her creatinine is 3.9, her IVIG's are done, and she will now see her regular local nephrologist in the coming weeks. It's been a month since we found she was in rejection and it's been exhausting. Hopefully we can get back to normal (whatever that is??) Thanks for the good thoughts!
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I hope that you can get some sorely needed rest, Karol, and it really makes me cry every time I think of how much I want Jenna's body to stop rejecting her transplant. :grouphug;
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Karol you have a tough road ahead because I know that when our children are going through the fire we are right there by their side. We all are here for you, if you need anything don't hesitate to ask. :grouphug; :grouphug;
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:pray;
I really don't know what to say as I am just beginning this journey of kidney transplant. I found Jenna's story to be a source of hope and inspiration. Now the reality soaks in that there are no guarantees and their are risks that accompany this treatment, but I still believe that it is the best choice for me too. I still pray for a rebound in kidney function for Jenna and if not, I pray she receives another transplant soon. She is too young to be confined by dialysis.
At my last appointment for my transplant evaluation. There was a 9 year old girl in kidney failure, she LOOKED ill. I felt so sorry for her, SO young, yet you could see that she was a trooper.
After years of denial, it is all becoming very real to me now.
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Three years seems short but it was honestly the best years - better than I could have dreamed of - so even going through this rejection, it was worth it. She would love to get another chance for a kidney, when this one finally ceases to work, if it's meant to be.
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After years of denial, it is all becoming very real to me now.
I am coming up on 1 year of dialysis. Hopefully next week I will be approved to be on the list. I do not know how to explain it but this does not feel real. I sit in the chair and look around at all the other patients and feel that I do not fit in.
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Karol you and Jenna have been through so much already - and it seems more to come. I was very touched and, ahem, warmed (moved) by your comments about sitting in the cold dark room while Jenna slept and being given a warm blanket. I can't begin to imagine how you felt seeing her there in agony as they probed around her arm not to mention everything she has gone through lately with this rejection thing.
I know I say now that I'd adore to get 3 years out of a transplant.. but as you say it's sooo short.. and she's so young.. in a flash it's gone. However for now she'll ALWAYS have Paris, and her other memories. And who knows how long this one will last...
my thoughts are with you, Jenna and the entire family :grouphug; :grouphug; :grouphug;
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Okarol - I'm sorry- I didn't know Jenna was in rejection mode. I know you girls will hang tough together.
:grouphug; :grouphug;
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:grouphug;
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tears of love shed for you and Jenna
okarol, you are just the best mother anyone could have
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Jenna will get another chance for a kidney. Dialysis is just a bridge. A Bridge too damn far sometimes!
:cuddle;
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Jenna and I went to Chinatown yesterday and watched the New Years Parade. We walked all over and had lunch with fellow photographers I know from flickr.
Seeing her walking in the sunshine, with a pretty silk parasol to keep the heat off, I can hardly believe she is at Stage 5 ESRD. She looks great. I hope her insides continue to match her outsides and she can remain stable for awhile.
Thanks for the good wishes. You guys are great.
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I'm smiling wide at the image of Jenna and her parasol in the midst of a Chinese New Year celebration. Every day of feeling OK and getting out and about is a great day...looking good doing it is the icing on the cake. :flower;
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I'm really glad to hear Jenna is up and about. Its good to get out and enjoy everything life has to offer.
The best to you both.
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I want to say that dear, sweet, beautiful Jenna is inspiring. With all of this that is happening, the threat to her still new(I feel) kidney and everything.. she's out there LIVING as best she can. That's real character and something that I admire. Should I wind up in a similar situation I hope I can draw strength and inspiration from how she is handling things now. My thoughts are with you guys.
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Jenna and I went to Chinatown yesterday and watched the New Years Parade. We walked all over and had lunch with fellow photographers I know from flickr.
Seeing her walking in the sunshine, with a pretty silk parasol to keep the heat off, I can hardly believe she is at Stage 5 ESRD. She looks great. I hope her insides continue to match her outsides and she can remain stable for awhile.
Thanks for the good wishes. You guys are great.
One day at a time. It is so nice for you two to have time to spend together. Hope Jenna continues to follow the path she started with her trip to Paris and schooling.
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What a lovely sight she must have been. Did you get a picture of her with the parasol? Your family lives with such determination and you inspire the rest of to life strong! :2thumbsup;
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Here's Jenna in Chinatown.
Today she was beat, too tired to go to the RSN meeting, but I went and had a great time.
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What a lovely photo...fantastic colours and composition.
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Sweet picture. Nice job Okarol. :2thumbsup; I bet Jenna is still trying to recover from all her body has been through this month. I am glad you two had a nice day yesterday.
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We saw Jenna's local nephrologist. He said that we will just wait and see how her function goes. It may continue to decline in the next 2 - 3 months or it may be stable for awhile. Depending how it goes and the rate of decline, we will make decisions regarding dialysis. Her creatinine is 3.9, her BP is ok, her Hemoglobin is 8.4 so that explains why she's tired. She also is having trouble sleeping at night.
I am up at 4 AM due to pain on top of my foot, like nerve pain. Might be sciatica. It hurt so bad it woke me up crying. I am going to try and lie down as much as I can and see if it doesn't settle down. I am going to put a heating pad on my back and try to sleep. I hope there's no more spamming tonight. :boxing;
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Karol- I can't even imagine what you have to be going through and what strength it is taking to get it all done and be so strong for Jenna, you really are a saint and one has to be sitting on your shoulder at all times to guide you, I read your posts and all I can do is cry and wish that there was more that can be done for all of the people on this sight with this terrible health problem that they all have.
I wish you and Jenna prayers from the heart that she can continue to stabalize and hang on for as long as possible and get as much as she can out of what she has, and a light shining for the future.
You are a rock....
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What a very beautiful young women. You would never know she was/is so ill. The shot is excellent, great color and clarity. I have browsed your photos and you are gifted.
Of course, having such a beautiful subject is almost cheating. :)
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It's just not fair. It just isn't. I wish I had more to offer you than a warm blankie and words on a computer screen.
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I pray she gets another chance at a kidney. Love to you both.
Mimi
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Thanks everyone. I really appreciate the support. :-*
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Thanks for sharing the lovely picture with us.
I do hope Jenna has still lots of time
before treatment becomes necessary.
Best wishes from Kristina. :grouphug;
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Karol I'm thinking of you and Jenna all the time. I hope and pray Jenna's kidney function doesn't get any worse. The strain on both of you must be terrible. You are both my heroes :grouphug;
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Hugs for you both. . .
You have a fabulous eye for pics, karol.
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:grouphug; and love to you and Jenna and hope her kidney function improves.
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Is great you and Jenna could go to Chinatown for chinese new year celebration.
The atmosphere is quite colorful.
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Jenna is a real winner, in every sense. So are you.
I hope she can hang on to her kidney for a while.
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In my opinion there is no greater support than my mom...so I can see why Jenna continues to push thru the bad to get to the great!!!
I hope she is feeling better today! :flower;
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:grouphug; :grouphug; :grouphug; for Jenna. Thinking of you both. xox
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We went to see the first doc who fixed Jenna's botched fistula. He is amazing, but no longer does vascular surgeries. He had some recommendations and he said, "If you find someone creative enough to do it" then she could get an upper left arm fistula instead of switching arms. A couple of weeks ago Jenna went to the head of vascular surgery at USC and he ordered a 3 part series of vein mapping, which she has now had done. His office called to schedule surgery, but we are waiting for her recent white blood cell WBC count to come back to be sure she isn't at high risk for infection (she would also need to pre-medicate.)
On another front it's been determined that Jenna's wisdom teeth are at a point where they need to be taken out. Again, the WBC will help determine when this can happen. Getting dental work out of the way is important with looking ahead to getting wait listed again.
Jenna's labs have remained steady since she was treated for the rejection. It's too bad we couldn't have caught it earlier, but there's no way to know for sure if they could have rescued it from getting to where it is now. Her creatinine is at 3.5 and her GFR is 17. The transplant team had said she needed to be 3 to 6 months past the heavy duty treatments they gave her, before she could be listed. She is feeling good though, her appetite is fine, her energy ok and she has no obvious symptoms of ESRD.
At their last meeting Jenna's nephrologist at USC said, "What are you doing now? School? Working?" and Jenna said, "No, nothing now." Doc said "Well, we don't know how long you'll be stable, but for now, get out there and live life!" It made me realize that we are just sitting here, waiting for the death of her kidney, instead of enjoying whatever time she has left before needing dialysis. It was a good message for me too, I need to keep participating in life!
Yesterday the transplant scheduler called from Scripps called Jenna and asked her to come for a meeting with the surgeon, social worker, nephrologist and transplant coordinator in June. I hope they'll begin the evaluation for wait listing so she can accrue wait time even before beginning dialysis.
That's all the news!
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Yes, Drs ask these questions too. We all do our best with what we have.
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Karol, I'm hoping the news gets better and better. And I hope that Jenna's function continues to improve. But...in the meantime, get out and enjoy each moment!
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That sounds pretty encouraging to me Karol and I hope that Jenna WILL start doing more rather than just waiting. I'm really hoping that the upper arm fistula can work out...my second was in the upper left arm with the first one lower down and clotted off.
Hugs to both you girls. :cuddle; :cuddle;
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:cuddle;
Hope she gets on the list soon, and gets another before she has to start D again!
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She might as well get out there and have a little fun.
Maybe sign up for a summer class or go for hikes to enjoy the weather. Hang out in a coffe shop. She may have low energy but there is still a lot that can be done.
Just make sure she is careful about germs and to stay hydrated. I always carry hand sanitizer and a bottle of water when I'm out and about. I hope she they will get her on the list soon.
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I hope she gets another volunteer, like the first time. Hey, it could happen. I will pray for her, and send lots of good thoughts her way and for you also Karol. You are very very strong.
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Karol, you remind me of an amazing Mom I know who helped their child through every single travesty associated with kidney failure.
My own.
Only now as an adult do I realize everything she did for me to make sure I was as well as possible (including giving me a kidney)
The one side effect of all these experiences is that we're very close.
The best to both you and Jenna. Take care.
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I wish the best for Jenna! You are an amazing woman! Your family is blessed! I pray that Jenna receives another transplant. She is so young to have to deal with all this. She must be amazing too!
God Bless You and Your Family!!
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"Get out there and live life!" is good advice for us all.
I so hope that Jenna continues to feel well and takes the opportunity to enjoy herself. And I hope that her next hero finds her before she ever needs dialysis. What strong women you both are. It is awe-inspiring.
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We go see the transplant team in La Jolla on June 9th. They called to set up an appointment so I am taking that as a good sign.
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please keep us posted on what is happening with Jenna.. I pray for her daily. :grouphug;
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Hoping that the appointment is an encouraging one Karol. Hugs to you both. :cuddle; :cuddle;
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Jenna's PRA is 97% - not unexpected after a rejection episode, but I had hoped all the IVIG might have altered it a bit.
The creatinine is still steady at 3.53 (actually down a little) and there's no telling how long she'll stay there.
I am now calling it "The Brave Little Kidney!"
I am swamped catching up on the census, work may end soon, they've got a big push to try and finish. Will write more when I can.
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97% ugh....but good on the creatinine for holding steady at least.
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let's stay positive and hope it stays stable there for a long time. Of course that's not a great figure, but if it stays there and keeps Jenna off dialysis that's all you need. Fingers crossed for some stability from the "little battler" as it migh be called down here! :cuddle; :cuddle; :cuddle; :cuddle;
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97% is a blow to be sure, but like Richard said, The Brave Little Kidney seems to be holding its own, perhaps even slowly regaining some ground. We're all hoping that this trend continues for a very long time.
Best wishes to you and Jenna. :grouphug;
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I thought I'd update here, just to keep a record (and it helps me look forward by looking back.)
Since being treated for rejection Jenna's creatinine has been steady at 3.1, nearly 2 years. They've reduced her immunos substantially, because her trough levels are fine, not as much filtering I suppose, and they don't want her to become toxic.
She still get labs once a month. Her BP inched up a bit so they added meds for that.
She has recently been re-listed on the national organ waitlist (eligible because her GFR is below 20.)
She seems healthy and is active, so for now we are grateful and calm.
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we are grateful and calm.
Okarol, that phrase gave me goosebumps for some reason. It seemed to speak to me from a well of strength and courage that seems amost super human.
Thank you.
Aleta
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Well this is creepy...I had just been thinking about Jenna, and here pops up an update! There's nothing wrong with "grateful and calm"; how wonderful!