I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Transplant Discussion => Topic started by: kitkatz on December 18, 2006, 08:36:49 PM
-
The waiting is coming to a close soon! The loopogram is scheduled for this Thursday at 3p.m. The CT scan is scheduled for Jan 4 at 2pm. Plus an ultrasound at 3 of the av graft same day at 3:30. Wish me luck!
-
Good Luck!! I'm thinking happy thoughts. Just don't tell the guys in the little white coats that I'm having happy thoughts...k
-
:clap;
:grouphug;
Keeping my fingers crossed for you!
-
Good Luck. :)
-
Good Luck!!! :grouphug;
-
Best of luck, Kitkatz! We'll be thinking of you and praying for you! :grouphug;
-
This is it girlfriend, the beginning of the rest of you life ;) no worries, i am sure you will do just fine, i'll have you in my prayers :angel; Remember, we are with you ALL THE WAY!!! :grouphug;
-
OKay Goofynina, You show up Thursday and do the Loopogram! :rofl; :rofl; :rofl; Thanks for the warm wishes and prayers. I am going to need them in order not to scream at people on Thursday!
-
Ummmmm, if it's not too personal, what is a loopogram? I thought I'd had about every test there is, but I've never heard of a loopogram. Whatever it is, I feel sorry for you having to have it!
-
Hope this helps.
http://www1.wfubmc.edu/NR/rdonlyres/8DCA4247-A160-4408-839C-C28FEDB1747F/0/loopogram.pdf
-
Thanks, Sluff. Now I really feel for you, Kitkatz! Best of luck to you!
-
Glad I could help. I just wish I could help Kitkatz. Take care Kit I'm rootin for you. :cuddle;
-
Best of Luck. :)
-
Sluff you want go for me tomorrow? Goofynina said no when I asked her. *sniff* *sniff* I will let you all know how this turns out. I remember doing this test eight years ago when the kidneys shut down. They just want to look around and see if everything is okay with the urostomy first. I am going to attempt not to kick the X-ray tech in the balls tomorrow afternoon!
-
Kitkatz relax get some rest. I hope the best for you tomorrow and will be awaiting your next post as to how things went.
Good thoughts . :grouphug;
-
Best of luck to you tomorrow, Kitkatz ! Be thinking good thoughts... :2thumbsup;
-
Good Luck tomorrow Kitatz thinking of you :cuddle;
-
Hope you do well - will be saying prayers for you.
-
Please don't forget you are our resident superwoman. You always win out in the end, however dastardly the foe. My prayers and caring thoughts are with you.
-
Okay...so what can I say about an X-ray test that did NOT hurt, but was inconclusive. The urostomy showed no sign of reflux, that they could tell from it, but they could not get the stuff to go up into the loop so they could see the loop and kidneys in the pictures. They even called in a second specialist to have fun with the catheters and even changed out the catheters. He just made more of a mess all over me. They had contrast all over me by the time we were finished with it all.
Surprised the hell out of me when I show up for a loopogram and they wanted a cystogram too. I told them they were getting one test at a time on me and they could do the loopogram, but the cystogram could be rescheduled. I can only do one thing at a time at the hopsital or else I will FREAK out. I know they do not want me screaming and yelling, running down the maze of halls at Kaiser! They let me reschedule the cystogram to the day after Christmas. What fun! I had the X-ray tech tell me exactly what a cystogram was. It sounds like loads of fun! They put a catheter in the bladder and fill it with contrast to take a look at it. Then they have you pee all over your self and take pictures. Sheez! I am just looking forward to that one!
So there it is, a funny little test that did not work on me. Why does everything have to go the hard way for me at these things?
-
Hey Survivor they gotta test all this stuff out on somebody. :D
-
Thanks Sluff! Why Me??
:rofl;
-
Okay, so when I am completely insane you people will come visit me in the insane asylum, right? Either that or I am going to take up drinking! :wine;
Here is today's news. I went to Kaiser X-ray for the cystogram today. Yep, I pulled on my woollies and screwed up my courage and went in for another test at Kaiser! How about that! So I am lying on the X-ray exam table and the tech can't catheterize me. It hurt like hell and I hollered at the tech. She asked me if it was pressure or if it hurt. It is not supposed to hurt. If I say it hurts, it hurts, lady! So the tech, who was very nice and did not want to continue hurting me,so she goes to call the nurse. It takes fifteen minutes for the nurse to finally show up. Meanwhile I am freezing my ass off in a cold X-ray room. And I HATE being left alone in an X-ray room for too long. They do that all the time, leave you all alone with the machine. (I am going to start talking to X-ray equipment when they leave me alone in the rooms now!Then they will certify me crazy!) So anyway the nurse shows up and she tries to catheterize me three different times with three different size catheters. They use Lidocaine on the catheters so it would not hurt so much for me. The pain pretty much went away but she could not catheterize me either. She said she could see where it was supposed to go, but there was a stricture there preventing it. Now what in the hell it is they do not know. So they are going to write up a radiology report that was inconclusive and I get to call the transplant coordinator and explain it all to her. They will probably send me to urology at Kaiser where they have specialized equipment to do whatever they need to do to me. *Sigh* :banghead;
I am sore from them trying to catheterize me. It was not fun and I was extremely frustrated when I left Kaiser. :banghead;
I had already had dialysis this morning from 5 to 9 and then went at 1p.m. for this test. I stopped on the way home from Kaiser and had Del Taco french fries and a diet coke with lots of ice and some lunch! The on the Walgreens to resupply the ice age at home. I arrived home frustrated and pissed at myself and at everything. I hate having to go back and forth with doctors and tests and stuff. I am thinking about giving transplant stuff up!
-
I'm so sorry you had such a horrible experience! I can't offer any advice, but I can offer my good thoughts and prayers, and you got 'em! :grouphug;
-
Don't give up the testing -- it is truly a pain and it goes on for months, but it is a way to get to your goal. And they always seem to find just one more test to do! Hugs :cuddle;
-
You have to do what you feel is the right thing to do.
-
Awww kat, I hope you don't give up hun. :cuddle; I understand how frustrating those tests are and I swear everytime you finish the last one they call ya with just one more test they just need to do, but eventually you will do the last test and it will all be worth it.
-
KitKatz you can't give up yet we haven't had our dance yet.( on the tables at Titos Tacos) If you get that transplant you'll probably out dance me). :thumbup;
-
I'm humming that darn Gloria Gaynor song for you as loud as I can! Hang in there!
-
Thanks. Next Thursday is the CT scan. Let's see if I can screw that up in some way, too.
-
Thanks. Next Thursday is the CT scan. Let's see if I can screw that up in some way, too.
I do love your positive thinking. :)
-
Thanks. Next Thursday is the CT scan. Let's see if I can screw that up in some way, too.
I do love your positive thinking. :)
I know, I cracked my hubby up with that comment the other day after I remarked I managed to have two tests come out inconclusive and was up for more. Just one more step closer to that transplant list!
-
Gotta stay positive Katz.. you know we only want whats best for you. :)
-
Kit, i feel like i know you well enough to say that you are a strong woman and you can do this, we are all here not only behind you all the way, we are also beside you too... Everyone here is rootin' for ya girlfriend, when the going gets tough, the tough GO SHOPPING, oh wait, nooo, sorry, the tough GET GOING, yah, thats what they do ;) but you can go shopping if it will make you feel better ;) ;)
-
Gonna go to Gottshalks tomorrow. They are having a sale. A shopping I will go! And... I have Christmas money to spend!
-
I know how you must feel Kitkatz.
Tests stress me to the max.
-
The latest at Kaiser today, Thursday, January 4, 2007 for Superhero Dialysis Woman
I went in for the CT scan and they handed me three bottles of barium to drink. Yummy. Nasty stuff, but I drank it down pretty fast. The most fluid I have had in years all at once. One guy and I were comparing how much of the third bottle we were going to drink. I beat him. He gave up, but I drank the entire thing! So then I get to wait for them to call me with this crap in my belly. Almost threw it back up, but managed to keep it down for the most part.
Then they take me into the back area where they promptly announce they are going to start an IV on me. I wished them luck. The nurse was very patient with my small veins and stuck me once with a larger needle by my elbow, then went down in size to the next one. She had to warm my hand up with a hot pack and put it down to find the vein that goes sideways across my hand.Thank goodness she got this one in okay and it did not hurt like the first one did. I have very small veins and limited access to them in the right arm as it is, so I am very protective of what I have. If they look like they are going to play "stick the patient", then I holler I want a real nurse to come stick me. The nurse was nice about it.
Then they took me to the CT room where the machine that looks like a donut got to eat part of me. It is wild when they stick you through the donut machine, you think they are going to forget and stick you all the way through. Take a breath, hold it, whrrrrrrr, breathe. Put the IV solution into the IV over three minutes, wait three minutes, give it again, and then more pictures. What fun! So then it is done and the needles come out.
Then! I get to run over to another building and do an ultrasound on my left arm because some dummy at Kaiser had double booked my appointments at three o'clock today. So I did that. Then, surprise the barium hit the system and oops. I must have shit a brick tonight! (Pardon the expression.) I was not warned that the barium would get the system very active. The ultrasound guy almost had a surprise in his chair when we were done! It was pretty bad for a couple of hours there. I am feeling better now.
Good things:
We were able to accomplish the CT scan. I did not screw it up!
My insides are super cleaned out now.
I did the ultrasound okay and the graft looks okay still.
I am glad I did not eat today. I would have thrown up the barium all over place if I had eaten lunch today.
Hubby took me to dinner tonight!
So there it is. Now I call the transplant coordinator and ask what is next.
-
See I told you that you wouldn't mess up the test. I hope the results come back in your favor Katz cause you deserve a break for once. :grouphug;
-
Good luck Kitkatz!
-
You Go Kitkatz !
:2thumbsup;
Good Luck with what comes next, and keep on their backs that's what I find or you get lost in the system.
-
:thumbup; good luck!
Edited: Fixed Smiley - Goofynina/Admin.
-
Congrats - you're on a roll! :2thumbsup; Keep up the good work! :clap;
-
The transplant coordinator called today and said that she is going to get all of the paper work ready to go back to the Loma Linda doctor that requested all of the tests. I think he will take one look and send me back for more tests, but who knows. Supposedly all of the paperwork will be gathered and sent to Loma Linda next week. Hurry up and wait! *SIGH* When I start to run screaming in circles, someone bring the bat and knock me down: okay?
-
At least the running in circles is a good cardio workout! ;D
-
Yes, I guess I am getting a good cardio work-out!
-
someone bring the bat and knock me down: okay?
Cant we just knock you down with your own BIG Stick :P
-
I may be waving it in the air as I run in circles!
-
Check one off for me! I saw the Pulmonary doctor the other day and he says the TB meds can be stopped the end of February. He does not need to see me again, He did liver function tests on the blood and everything is fine! Halleluia! Check one off for me! CHECK! I wish we had a big check symbol.
-
Good news Kitkatz!
-
:thumbup; :2thumbsup; :clap; :D ;D
-
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 :banghead; :banghead; 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! :banghead; 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.
-
Hang in there Kit. At some point this should all pay off. :cuddle;
-
hang in there Kit it will all be worth it in the end :cuddle;
-
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. :grouphug;
-
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! :rant;
-
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. :grouphug; :grouphug;
-
let me at them Kit :boxing; :boxing;
-
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!
-
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 :2thumbsup;
-
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 ****! :boxing;
-
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!!!
-
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 ? :banghead; 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. :D
Like everyone else said, Hang in there. I'm rooting for you!