Challenges and simple pleasures

[okarol]

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.

[Rerun]

Think of the blanket around as hugs from us. 

                         

[kitkatz]

Yes, ditto from me.  God bless you both. 

You know what the picture is for....

[YLGuy]

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

[Jean]

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. 

[paris]

Amazing what a warm blanket can do.      Saying lots of prayers for Jenna.   

[jbeany]

 

[tyefly]

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.......   

[2_DallasCowboys]

Thinking of you both, and sending prayers from NJ-

Anne

[okarol]

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!

[monrein]

 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.   

[Sluff]

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.

[BASSMAN]

 

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.

[okarol]

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.

[YLGuy]

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. 

[RichardMEL]

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 

[Slywalker]

Okarol - I'm sorry- I didn't know Jenna was in rejection mode.    I know you girls will hang tough together.

 

[Ken Shelmerdine]

 

[twirl]

tears of love shed for you and Jenna


okarol, you are just the best mother anyone could have

[Rerun]

Jenna will get another chance for a kidney.  Dialysis is just a bridge.  A Bridge too damn far sometimes!

                       

[okarol]

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.

[monrein]

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.   

[Stacy Without An E]

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.

[RichardMEL]

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.

[Sluff]

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.