The continuing saga

[skyedogrocks]

I'm sorry Kit - Lots of hugs and prayers going your way.   

[kitkatz]

I have my doctor's appointment on Tuesday.  We are going to discuss what to do next in my quest for transplant.  I think they are going to put my file in the locked box on the floor and forget about it.  Knowing my situation right now, are there any questions i need to be asking the neph?  I have about a million questions swirling in my head. 

[livecam]

I know you are frustrated beyond belief over how this uncertainty has been dragged out for years.  One bit of advice I might offer is that although this is a highly emotional issue for you, try not to show it.  Be concise with your discussions, your questions, and your expectations from them.

Try to get some idea of exactly what it is you need to do to qualify for listing.  Assuming you are willing to do those things it isn't unreasonable for you to expect some commitment from them about listing you.  See if there isn't some kind of schedule you can set up for getting those medical items out of the way that are an impediment for listing and then try to to get all of it done as quickly as humanly possible.

Surely they can see that you are a model dialysis patient and have been working full-time for 9 years while on dialysis.  You are exactly the kind of patient who should be transplanted.  They have to know that you will use that gift wisely just because of what you have accomplished so far.

[kitkatz]

A the present time these are the issues I am looking at:
1. Two cysts have to be removed. One on an ovary. One between the rectum and pelvis area.  The one on the ovary should be a pretty simple procedure.  The one by the spine on the other hand is major surgery on the back. Not sure I want to do it.
2. I am presently the wage earner in our family.  No money honey would suck.
3. There is no promise I will be listed after the two surgeries. I am dealing with Kaiser and Loma Linda.
4. I am doing well on dialysis and am going to ask to be put on home dialysis training asap.
5. The weight issue. I have gained weight recently.  The transplant team wants me to lose it.

I have a feeling the answers are going to be hard ones for me to accept. If there is not to be a transplant I am going to need a lot of support to stop me from losing my mind altogether.   Not sure I can do this dialysis stuff indefinitely.  I need a drink!

[Romona]

I wish I could think of something great to say to make things easier. I will be thinking of you and pray for the best. You are such a positive roie model. Not everyone could do what you have been doing for 9 years. 

[Wattle]

I need a drink!

  \_/ Have a shot Kit.      Hang in there. Livecam gave some great advise.Try to keep yourself together while you are in the rooms.

Write all the questions down and make sure they give you a time frame for all the requirements they want.

We are here for you.   

[MyssAnne]

I don't have any advice, just support. We're here for you, whatever we can do, we will.   

[angela515]

 

[jbeany]

   We're here for ya, kitty!

[Roxy]

 

[charee]

hang in there Kit ,I'm going through a similar thing to get listed, but my fight has been 7 months not 9 years like yours  keep Strong

[Sluff]

Good Luck today Kitkatz..

[2_DallasCowboys]

Hi,

Just want to wish you Good Luck today!  Keep
positive, Kit!

Anne and Les

[livecam]

You can do it Kit!  Go over there and just be open to discussions with them and be concise.  It will happen!

[paris]

Kitkatz, I am hoping you have a successful meeting and approval is just around the corner.   As you probably know, the past couple of months has been a time of me trying to understand that a transplant won't happen for me.  Kind of has me in a tailspin, since they all made it sound like a done deal.    I still get upset when people make it sound so darn easy to get on the stupid list.   After months of testing, on the list, and it still means nothing.     

We all love you here   We will be here no matter what happens and we know good things are going to happen for you

[kitkatz]

Kitkatz, I am hoping you have a successful meeting and approval is just around the corner.   As you probably know, the past couple of months has been a time of me trying to understand that a transplant won't happen for me.  Kind of has me in a tailspin, since they all made it sound like a done deal.    I still get upset when people make it sound so darn easy to get on the stupid list.   After months of testing, on the list, and it still means nothing.     

Exactly how I feel. 

[kitkatz]

It is official, folks. As of November 13, 2007, kitkatz is not eligible for transplant. 

There it is.  The news. 

[MyssAnne]

Man. What a disappointment. I am sorry, Kit. Very very sorry. 

[charee]

I'm sorry kit

[Jill D.]

So sorry to hear, Kit. 

[oswald]

 sorry to hear that kit.      

[jbeany]

That sucks.

 

[paris]

Can I just sit here and cry?? I am so very sorry.  There are times that life just stinks- today is one of them.

[Joe Paul]

Sorry to hear that kitkatz 

[tamara]

So Sorry Kit