I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Transplant Discussion => Topic started by: kitkatz on September 21, 2007, 09:41:34 PM
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There was good news and bad news today from the transplant nation.
Good news: They have not said no to me yet.
Bad news: They want the xrays sent to an oncological surgeon and this will take a few weeks. Kaiser has to ship them the records then they have to look at it, then committee again. Seems kaiser does not write good reports for LL to follow up on. Shhez!
I was flipping livid this afternoon. I feel like a giant hole opened up and I fell in it.
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Why is oncology surgeon involve in this? You are overdue to be on the list and receive the transplant!! ??? ???
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:cuddle;
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Kitkatz I admire your strength. Since I've known you you have been through many trials and yet you seem to handle everything in due time. I guess what else could you do stop all the madness anyway? But I really do give you credit. Take care and just keep on keeping on Hun. My prayers and good thoughts are with you always. :grouphug;
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Oh KitKatz. NOW what. You have been through enough, when is this going to end? I'll be praying for you, that you ARE on the list, before the end of October. :grouphug; :grouphug;
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I can relate. It seems like they kept finding off the wall tests after I had completed the normal list--hemotologist to make sure I didn't have a rare blood disorder! After they do the tests, then it is always sending it somewhere for someone else to look at. They make it all sould so easy at that first transplant meeting. I am so sorry you keep getting the run around. I was told it took 3-5 months to get through the tests and put on the list---mine took a year. Keep the goal in sight and keep jumping through their hoops. We want you on that list! :grouphug;
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Kitkatz,
I'm so sorry that things are taking their own sweet time. It took us 4 1/2 years to get Len listed. They wouldn't even talk to us when his kidneys first failed. Had to wait for his wound to be closed. But it will happen and you will get that call.
You sound a lot like me. Lots of strength, but no patience. Please hang in there. We are all waiting to hear the good news.
Kathy
willieandwinnie
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Thank you all. Yep, the mass they found down by my spine between the rectum and spine has them all worried and they want an onological consult from one of their doctors. He has to see the MRI scans and CT scans. LL already had these in their hands and shipped them back to kaiser so off they have to go again. I have calmed down from the screaming mimi level I was at last night.
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So here are my thoughts I had after I calmed down from screaming at God for a few hours over all of this mess. I told Him it was not funny and to quit messing with me. If I had to be taught patience there were other ways to do it!
Two things came up:
1. If the transplant is to happen it will happen. Things always happen when they are supposed to happen. I have to give it time and patience. If I am listed then this is going to happen.
2. If LL does not want to list me then I give up for good on transplant. I will learn to live with dialysis the best way I know how and probably go on home dialysis for the duration.
I am not getting my hopes up just to have them dashed. I am trying to stay calm and keep on moving calmly. I have the TC phone number now for LL so now I can directly bother her every two weeks. Hehehehe.
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If I had to be taught patience there were other ways to do it!
I think you have well and truly learnt the meaning of patience Kit. :cuddle;
You have amazing strength. :-*
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Kit, I am sorry you have to go through all this. It took forever for me to get listed.
I don't know how long you have been trying... but with me...I filled out the paperwork 10/06, first visit 02/14, second visit 03/07... tests... tests....more tests, oh yeah... more blood tests to make sure I was not prone to clot..... finally got the call that I was accepted to the Baylor Transplant Program on 05/24... then insurance finally cleared everything and I was officially listed 06/09.
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Thank you all. Yep, the mass they found down by my spine betweent he retum and spine has them all worried and they want an onological consult from one of their doctors. He has to see the MRI scans and CT scans. LL already had these in their hands and shipped them back to kaiser so off they have to go again. I have calmed down from the screaming mimi level I was at last night.
Can you feel the lump yourself? I ask, because I had a lump on my "tail bone" about 10 years ago. It sounds similar to your problem. Mine hurt, A LOT when I sat down, so they x-rayed it, MRI-ed it, then tapped it and found it was just a really BIG cyst. I had it surgically removed with a very simple procedure.
I hope everything turns out ok regardless tho!
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:grouphug;
Hang in there, lady!
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Can you feel the lump yourself? I ask, because I had a lump on my "tail bone" about 10 years ago. It sounds similar to your problem. Mine hurt, A LOT when I sat down, so they x-rayed it, MRI-ed it, then tapped it and found it was just a really BIG cyst. I had it surgically removed with a very simple procedure.
I hope everything turns out ok regardless tho!
Yikes! I had one of those removed as well -- pilonidal cyst or pilonidal abscess. Simple out-patient surgery and healed quickly.
Kat, do a web search and see if that could be what you have.
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My prayers are with you.
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The doc said it would be a complicated surgery to get to it. So let's hope it is benign.
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The doc said it would be a complicated surgery to get to it. So let's hope it is benign.
Will be praying for it to be a simple cyst and easier than they think!! :grouphug;
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Geezuz what are they waiting on? I think you need a bigger stick Kit. Seriously tho.. I hope you get a quick resolve to this and that it turns out to be benign. Are they concerned about access (hard to get at) because there could be complications? or strictly location? Either way I'm glad you have come to terms a little bit more with all of this. We all love ya girl so take care and keep us updated as things unfold. :grouphug; :grouphug;
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Can you feel the lump yourself? I ask, because I had a lump on my "tail bone" about 10 years ago. It sounds similar to your problem. Mine hurt, A LOT when I sat down, so they x-rayed it, MRI-ed it, then tapped it and found it was just a really BIG cyst. I had it surgically removed with a very simple procedure.
I hope everything turns out ok regardless tho!
Yikes! I had one of those removed as well -- pilonidal cyst or pilonidal abscess. Simple out-patient surgery and healed quickly.
Kat, do a web search and see if that could be what you have.
Pilonidal Cyst--that's what I had. Sorry, I kind of forgot to mention the name.
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You have to deal with your problems one at a time, so first hope that the mass detected on your spine is benign, and if it is not, concentrate on curing that issue before you worry about transplants. For most cancers, depending on the type and stage of the cancer, a renal transplant will be possible 2 to 5 years after the cancer is cured, so you don't have to give up on that hope even if it turns out that you have cancer.
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The Kaiser docs seem to think it is not cancerous. Just a cyst hanging out in the body. LL wants to know for sure. So I am waiting until Friday then I call the TC and bug them again. Hehehehe.
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:bump;
Anymore news Kitkatz? :cuddle;
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Still in Limboland.
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:banghead; :banghead; :banghead; I am frustrated for you Kit!
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:banghead; :banghead; :banghead; I am frustrated for you Kit!
Me Too!!! :banghead; :banghead; :boxing;
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Hope you find out soon Kitkatz :cuddle;
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Keep fighting girl! :boxing; :cuddle;
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I called the transplant coordinator today at Kaiser. I am up for committee again on Thursday. I have another week's wait until I know one way or another.
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hang in there kit good luck :2thumbsup;
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:popcorn; Watching the saga unfold -- sending good thoughts Kit! :cuddle;
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*crossing my fingers* I sure hope they all know what is good for them :secret; (should i call them and warn them) :P ;)
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I had a call from LL tranplant coordinator today...
They want the cyst between the rectum and my pelvis removed, as well as the five centimeter cyst I have on an ovary. Just where in the hell did that sucker pop up from? News to me today. Anyway I need to see the nephrologist and an ob/gyn and see if I want to do it all. And no guarantee after all of these surgeries they will transplant me. ( Insert swear words here.)
Well so there it is. I am so upset I don't know what I am doing tonight. Running a round in circles screaming comes to mind!
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oh kit thinking of you :cuddle;
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What are you still doing on here? I thought i told you to go relax with your Babylon 5 :secret; and your coke :P
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I did! I watched three whole episodes and fell asleep.
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Kit--I'm so sorry to here this! Aftrer the surgeries, remember, use your big stick!!! :cuddle;
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Oh for goodness sakes. As if you didn't have enough. Why oh why is it so darn HARD to get on this stupid list??? I'm sorry Kit. Here's something for the coordinators and their committees: :boxing; :boxing; For you, a HUGE bar of whatever chocolate bar you want and a HUUUGE box of movie popcorn to go with the Babylon shows yet to watch!!! :beer1;
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Yummy. I appreciate the good thoughts. I am in such a bad mood I cannot even think straight. School was interesting today.
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:grouphug;
Thinkin of ya Kit
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Hang in there, Kit.
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I have an appointment to talk with my nephrologist on November 13 to see where we go next about transplant issues. I have to decide whether or not to continue and have two major surgeries with no guarantee of transplant or being listed. You lucky people get to hear all about the pros and cons.
It looks like I am not going to get a transplant. Not medically cleared. So I am going to go ahead and try to do home dilaysis. That way I am in charge of everything.
I want to just curl up under a blanket and not come out. But I am up and moving. I can;t do anything about now so life goes on. I feel stressed.
I wonder if I can say do the transplant anyway, and leave the cyst alone and I will take the consequences if it goes bad? I guess they do not want to do that.
The hella round here goes on forever!
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Oh Kit. I'm so sorry. You've been through so much and to have this thrown up at you. Take the time away with Victor, to get away from all this mess.
Hang in there. We're here for you, no matter what. We have to. YOU have the stick!!! :grouphug;
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Kit, you will be surprised at the difference you feel once you are "in control" i hope you do go for home dialysis, and i pity the fool that gets in your way of getting it too :boxing;
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Kit, I hope you do get to go to home dialysis. :2thumbsup;
After you get into the routine of home dialysis and get to feeling better, you may feel more like going for the surgeries and what ever it takes to get on the list.
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what to say other than you're in all our thoughts and prayers...the decisions we are forced to make are beyond difficult sometimes...just know you aren't walking on the road alone
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your sure going through a lot- emotionally as well as all the medical BS you unfortunately must deal with- i hope things work out for you.. ;)
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I am hoping things work out for you, you've been through lots and need a break and SOON!
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Kit--You're in my thoughts and prayers girl! :cuddle; :cuddle;
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Kit, I am so sorry. I understand a little bit because I am coming to the conclusion I won't get a transplant. We do everything they ask of us, go through all the tests and evaluations--and where does it get us? Talk to your neph. Maybe he can come up with a better plan. In the meantime, enjoy your time with Victor in Palm Springs. You deserve some rest and relaxation.
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Kit, do what you can to get on the NxStage - it gives you a lot more energy, and being in control of even part of this scary trip is a wonderful feeling. Whatever you decide about the surgeries, we're here for you.
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I'm sorry Kit - Lots of hugs and prayers going your way. :cuddle;
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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.
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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.
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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!
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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. :grouphug;
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I need a drink!
\_/ Have a shot Kit. :cuddle; 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. :grouphug;
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I don't have any advice, just support. We're here for you, whatever we can do, we will. :grouphug;
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:grouphug;
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:grouphug; We're here for ya, kitty!
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:grouphug;
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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 :grouphug;
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Good Luck today Kitkatz.. :grouphug;
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Hi,
Just want to wish you Good Luck today! Keep
positive, Kit! :grouphug;
Anne and Les
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You can do it Kit! Go over there and just be open to discussions with them and be concise. It will happen!
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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 :grouphug; We will be here no matter what happens and we know good things are going to happen for you :thumbup;
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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.
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It is official, folks. As of November 13, 2007, kitkatz is not eligible for transplant.
There it is. The news.
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Man. What a disappointment. I am sorry, Kit. Very very sorry. :grouphug;
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I'm sorry kit :grouphug;
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So sorry to hear, Kit. :grouphug;
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sorry to hear that kit. :'( :grouphug;
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That sucks.
:grouphug;
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Can I just sit here and cry?? I am so very sorry. There are times that life just stinks- today is one of them.
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Sorry to hear that kitkatz :grouphug;
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So Sorry Kit :grouphug;
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It is official, folks. As of November 13, 2007, kitkatz is not eligible for transplant.
There it is. The news.
I'm sorry Kit :grouphug; Is there a official reason or cause for that decision? Just curious.
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Kit,
So very sorry to hear this, please keep strong!
Anne
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So sorry to hear that kit :grouphug; :grouphug;
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I'm so sorry! :cuddle; :cuddle; :cuddle;
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Damn, when they told you that you should've got that big stick of yours and stuck it up their ass!!! >:D I am sorry Kit :cuddle;
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I'm so sorry.... :cuddle; :grouphug;
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kitkatz
I don't have the words for how sorry I am. Take care.
willieandwinnie
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I am so sorry.
Beth
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Every transplant has it's own rules. Perhaps it is time to find another.
Kit, never say never. :boxing;
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:cuddle; Can you try somewhere else? thinking of you
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Sorry to hear what happened to you kitkatz.
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Every transplant has it's own rules. Perhaps it is time to find another.
Kit, never say never. :boxing;
I'm with Okarol. Never say never :boxing; What about a live donor? Keep trying Kit :cuddle;
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Even with a living donor, you have to be approved and on the list.
Kitkatz, I just am so sorry. You have been dealing with way too much. Take time to be mad, sad and disappointed; just like the grieving process for any other loss. We are here when you need us :cuddle;
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Even with a living donor, you have to be approved and on the list.
Not true.. at least not true at my centers. My first transplant.. I was never on the list and never tried to get on it since my mom was being tested.
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My mom isn't on the list, either. UAB sent her the paperwork and she was so mad after the way they treated her when they found out she had high PRA, she told the nurse to stuff 'em.
Beth
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Even with a living donor, you have to be approved and on the list.
Not true.. at least not true at my centers. My first transplant.. I was never on the list and never tried to get on it since my mom was being tested.
Each center determines their own criteria. It's worth investigating other centers.
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If you have a living donor lined up you do not have to be on the list. I didn't get on the list until after my first scheduled transplant date was cancelled because they realized my PRA was so high. However, you still have to be evaluated. Kit, I have no idea why you were not accepted or if there is any chance of things changing, but we can only hope....and be here for you.
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I probably posted that wrong--even though I had a living donor lined up, my center had me go through the whole evaluation process before they would begin testing the donor. And at the second center, I again had to be current on all my evaluations before testing the potential donors.
And I think that is the point with Kitkatz- there are medical reasons she couldn't be listed and wouldn't those reasons still remain even with a living donor? She still has to be a good candidate for a transplant, right? Or is my tired, confused brain not understanding? That is entirely possible!!
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I probably posted that wrong--even though I had a living donor lined up, my center had me go through the whole evaluation process before they would begin testing the donor. And at the second center, I again had to be current on all my evaluations before testing the potential donors.
And I think that is the point with Kitkatz- there are medical reasons she couldn't be listed and wouldn't those reasons still remain even with a living donor? She still has to be a good candidate for a transplant, right? Or is my tired, confused brain not understanding? That is entirely possible!!
Yes, correct, she would still have to meet the medical criteria... so those would probably still prevent that. Your brain is working just fine. ;) I was just clarifying that you don't have to get on the list, but yes, you definitely still have to be evaluated and meet the standards. :thumbup;
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Thanks, Angela! I don't always think staight right now! I feel so bad for Kitkatz. The realization of this must be overwhelming for her. It all sounds so simple but the reality is so different than the pretty picture most people have of transplantation. I wish I could give her my place on the list since my PRA will always keep me from receiving a cadaver kidney. It certainly is a helpless feeling--not being in control of your own body. Again, thanks for telling me my brain is working fine :cuddle;
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It wouldn't hurt to keep trying. I met two people at my center that were refused at other hospitals. :cuddle;
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They gave me a choice. Have major back surgery and get the cyst that is hanging out between my back and rectum and get the ovarian cyst taken care of, then come back for reevaluation; or leave it and no transplant. Well I talked to the surgeon and he did not want to touch it with a ten foot pole. The surgery would be very complicated with lots of possible complications. He says leave it alone and wait to see what happens with it. It has not done anything in nine years and probably won't. The center is worried it might turn cancerous after transplant,so they want it out. I do NOT want more surgery with no guarantee I will be listed. I can imagine after all of this crap, being told no because you have had too many surgeries. So I had to make the choice myself. Given that i am doing okay on dialysis and am coping alright, I chose the route of no transplant.
Part of me is glad there will be no more hassle with these people over tests and doctors recs and things with transplant. The other part thinks it sucks and wonders how long i can go without a HUGE glass of something to drink!
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Every once in a while, take a LARGE GLASS of something. But only once in the day that you do it! My dietitian believes that every once in a while you can break the rule. But not often. Just pnce in a while to continue to feel you have some kind of control over your own life.