Hi

[SLEepy]

Hello everyone. Ive been. I guess a lurker for a while, just never posted. I guess I'm still shy behind the screen. I've have Lupus & had a bought with oral cancer. The put my access in because they new my kidneys were failing. The next day I had to go into the ER & started Dialysis. I've been I Dialysis for a little over two years now. My labs are always good. I actually think I feel pretty good. A little tired after treatment sometimes, but I guess that is to be expected. I'm just now going through the Transplant work up. So far everything looks good. I go today I guess it's for a dental clearance. There something that's been really bothering me. I guess I've been through a lot but nothing has bothered me more than this. They want to take both Kidneys out. I believe they said they were full of cyst & the could lead to cancer. The right one being the worst. I feel really uncomfortable about this. Not so much the operation .just what's going to happen when they take them out. I guess my fear is my health will go down hill when they remove them. I hope it's the right thing to do. Thanks for listening!   

[MooseMom]

Hi there!  I'm really glad you've decided to post about some of your concerns.  I know there are IHD members who have had kidneys removed due to PKD cysts, and I am hoping that some of them will see your question and will share their experiences. 

I am assuming that lupus caused your kidney failure...is that right?

Is it the transplant people that want you to have your kidneys removed?  And will they not list you until you have that done?  Is that the deal?  Why do you think that their removal will lead your health to decline?  That would probably be true if you are still urinating as in general, you try to preserve any residual kidney function you have so that fluid removal is not so problematic.  Can you tell us a bit more?

[kellyt]

     Welcome.

[willowtreewren]

A belated Welcome 

as you know us, but we don't really know you! 

Do you have PKD along with your Lupus? My sister-in-law had to have her huge PKD kidneys removed after being in an automobile accident which caused them to bleed excessively. She actually got pretty sick every time a large cyst ruptured.

But of course, that meant more fluid build up. Are you still urinating? If so, I certainly understand your reluctance to have BOTH kidneys removed. On the other hand, if the kidneys are quite enlarged from the cysts, and you aren't urinating you might find that you are far more comfortable with them gone. It is hard to know without more information.

Anyway, I'm glad you de-lurked!

Aleta

[SLEepy]

Thanks for the welcome. In 86 when I was Diagnosed with Lupus that when they found out my Kidneys failed. I still had some function. When I went through my radiation treatment that when I guess the gave up. I went 20+ yrs without having to go on Dialysis. They told me from the beginning that I probably would at some point. My transplant surgeon is the one that wants to take them out. He is concerned that the Cyst could turn cancerous I guess. The right being the worst. The PA said "I think" I'm a status 7 on the list & after they remove them I will move up to status 1. I could be wrong. I see the Doctor next week I'll have to ask again. I do urinate a little, it"s not very much. Maybe once a day but it's a small amount. I moved up with my parents when I had to go on Dialysis. So The Doctors are all still kinda new to me. Maybe that's were some of my worries are coming from. Again, Thanks for the welcome. I wish I only posted earlier.   

[Rerun]

Hello SLEepy and welcome to IHD.  I'm so glad you joined us.  I think they can take your kidneys out microscopicly now a days so it is not so invasive.  Ask them about that procedure.

Keep us posted.

Rerun, Moderator      

[looneytunes]

Hi SLEepy and welcome!     I hope things go well for you from here on. 

[lmunchkin]

A belated welcome!  So glad you found this site.  Helpful bunch here.

lmunchkin