Challenges and simple pleasures

[paris]

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!   

[okarol]

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.

[monrein]

What a lovely photo...fantastic colours and composition. 

[paris]

Sweet picture.  Nice job Okarol.         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.

[okarol]

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. 

[harley08]

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....

[BASSMAN]

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.

[MooseMom]

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.

[Mimi]

I pray she gets another chance at a kidney.  Love to you both.

Mimi

[okarol]

Thanks everyone. I really appreciate the support.   

[kristina]

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. 

[Ken Shelmerdine]

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 

[jbeany]

Hugs for you both. . .
You have a fabulous eye for pics, karol.

[Yvonne]

  and love to you and Jenna and hope her kidney function improves.

[st789]

Is great you and Jenna could go to Chinatown for chinese new year celebration.

The atmosphere is quite colorful.

[Sunny]

Jenna is a real winner, in every sense. So are you.
I hope she can hang on to her kidney for a while.

[Lisa]

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!

[Wattle]

    for Jenna. Thinking of you both. xox

[okarol]

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!

[st789]

Yes, Drs ask these questions too.  We all do our best with what we have.

[looneytunes]

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! 

[monrein]

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.   

[jbeany]

 

Hope she gets on the list soon, and gets another before she has to start D again!

[Sunny]

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.

[Jean]

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.