The continuing saga

[kitkatz]

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.

[st789]

Why is oncology surgeon involve in this?  You are overdue to be on the list and receive the transplant!!

[angela515]

 

[Sluff]

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. 

[MyssAnne]

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. 

[paris]

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!

[willieandwinnie]

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

[kitkatz]

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. 

[kitkatz]

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.

[Wattle]

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.   

You have amazing strength.   

[donnia]

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.

[paddbear0000]

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!

[jbeany]

 

Hang in there, lady!

[Black]

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.

[Romona]

My prayers are with you.

[kitkatz]

The doc said it would be a complicated surgery to get to it. So let's hope it is benign.

[Black]

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!! 

[Sluff]

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.   

[paddbear0000]

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.

[stauffenberg]

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.

[kitkatz]

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. 

[Wattle]

  


Anymore news Kitkatz?     

[kitkatz]

Still in Limboland.

[okarol]

     I am frustrated for you Kit!

[Wattle]

    I am frustrated for you Kit!

Me Too!!!