Tests have been scheduled!

[kitkatz]

The continuing saga of me and the transplant stuff.

TODAY:  I went to a doctor appointment with the urologist at Loma Linda this morning.  He actually saw me on time. However Kaiser managed to screw up the testing and sent him a two sentence report on one test, and less than that on another. Kaiser did a cat scan on my bladder, yet they had no mention of it in their report! So guess who got to undergo test this morning with the urologist?  He had to call the transplant coordinator and arrange for the okay to torture...umm do tests on me.  She gave it and here we were in a procedure room.
     He tried to catheterize me.  Now my bladder has not worked in over thirty years. I hollered when the nurse tried a small catheter. She thought I was a wimp until the Doctor explained about two Y-V plasty surgeries on the neck of the bladder. They narrowed down the bladder to the point where I could not be catheterized properly. So thbbbbt on her! He could not get his scope in there either.  He put a wire through and it would go; but the expanders he tried did not work either. He could not scope me and check it out.  I was soaking wet with water by the time he was halfway done.
     Then he moved up to the urostomy and scoped it. I wear a two piece bag system so we popped the top off like tupperware and in he went with the scope. He wanted to see if there were any cancerous lesions or tumors.  No, there were not.  Thank God for that!   I was soaking wet from all of this too. So I put myself back together. I had some bloody discharge after all of this.
     He said to come back after I see my surgeon on the 17th; and see him with the X-rays in hand from all of the tests. I called my transplant coordinator because they would not give me an appointment without a referral, but she told me I could not get a referral without an appointment  Talk about stupidity!  The transplant coordinator is going to send everything to this doctor.   
     I was in pain when I left the office and in pain pretty much all afternoon.  Thank goodness I did not try to go back to work. Hubby took me to lunch and we went to see my friend who is still in the hospital.   I have taken Tylenol.  Oh by the way the doctor at Loma Linda also gave me Leviquin as a precaution because he had been messing with my innards.  $35.00 bucks for two pills!  And I paid it! Highway robbery! Not part of the formulary.  Oh well!
     I am at the computer after lying down for an hour or so. The Tylenol is slowly taking effect.  So there it is my continuing story of hurry up and wait.

[okarol]

Hang in there Kit. At some point this should all pay off. 

[lola]

hang in there Kit it will all be worth it in the end

[goofynina]

Kit, you are a strong woman and this proves it, just keep moving forward my friend, and as you have heard many times before,  it will all be worth it in the end.  Thanks for updating us. 

[kitkatz]

Here is an update. I am in a really ugly mood over transplant stuff fright now, so excuse the rant.

So where was I...I saw the urologist at Loma Linda again and he agreed to take notes back to transplant committee. Not that he can tell them anything because he could not get any test results either even though he looked at X-rays and ran tests himself.  So six weeks ago I asked the transplant coordinator what they were going to do, she told me they would take me to committee then. Nothing happened, because I called her last week and Loma LInda has done NOTHING!  She told me the same thing she told me six weeks ago.  WTF!!  God I hate waiting on these people to make up their minds to do something. Makes me angry enough to cry!! What am I going to have to do show up and bug the coordinator at Loma Linda.  Holy God!
 

[Sluff]

Aww Kit I know how angry you must be, it is hard to just keep saying hang in there, but I guess what else can you do. We are here for you.

[lola]

let me at them Kit

[Roxy]

Show up with your Big stick kit! that'll teach' em. I'm sorry it's a long waiting game with them. I hope they give you an answer soon!

[goofynina]

Hang in there Kit, i know that is easier said than done but you will be the one shining through all this at the end 

[kidney4traci]

Oh man, that sounds like Kaiser too!  I used to live in CA, actually feel your pain!!  Sorry about the run round, I heard you have to keep on the transplant team.  Give 'em ****!

[okarol]

Kit, I know it's hard. Our first transplant team was NOT responsive - nor did they initiate anything- they only reacted when I stirred things up. Sometimes I would call the nephrologist and ask him if it was typical to have such delays. Coincidentally I would get a call the next day from the coordinator.

Even though it's Kaiser, can't you explore multiple listing with other centers? Isn't Medicare primary for you now, and they are the ones who will be paying for the transplant. They don't limit your option to multiple list. It may be worthwhile to find out. Hang in there Kit, you deserve to have some help here!!!

[Romona]

My pre-transplant cooridinator was not exactly a ball of fire. She lost tests, sent letters that made it sound like I wasn't complying. I hand delivered stuff, she would lose it. Faxed things, guess what ?  She lost them. My nephrologist was in the same buliding. He was like my personal errand boy. He was awesome getting the paperwork pushed through and making phone calls while I was sitting there.

Do you have a doc like that? Someone that can be your advocate? I'd give you mine, but I still need him. 

Like everyone else said, Hang in there. I'm rooting for you!