It may happen soon!!!

[Poppylicious]

So sorry woodsman ...

[woodsman]

Okay the scoop on my donor. He eneded up having high BP and now they say if he goes to his doctor and can control it with 1 med then they will go ahead and do the transplant. So all is not lost. Then they found a syst or something on my left kidney during a ultrasound and i had a CT scan (without die) and nowwe shall see what that is.

[willowtreewren]

Hope is still alive, then! 

[Poppylicious]

Okay the scoop on my donor. He eneded up having high BP and now they say if he goes to his doctor and can control it with 1 med then they will go ahead and do the transplant. So all is not lost.

[woodsman]

Now i have been informed that i am on medical hold for transplant due to the syst on my kidney and they have to ID it for sure before i can continue on the list. They want to use die for the test and the die would end kidney function ..... dilemmas ........... They want me to start dialysis on tuesday morning  i am so confused right now...  .   

[willowtreewren]

 

[woodsman]

Well after 2 MRI's without dye they say it is just a cyst and i can now come off of medical hold at the transplant hospital. My donor now has been told he has hep B and while i had the shots years ago they said it did not take. I am still hopeful that somethings will change. I am not on dialysis yet but i fear it is coming. What did you do the first time going in?

[rsudock]

Well after 2 MRI's without dye they say it is just a cyst and i can now come off of medical hold at the transplant hospital. My donor now has been told he has hep B and while i had the shots years ago they said it did not take. I am still hopeful that somethings will change. I am not on dialysis yet but i fear it is coming. What did you do the first time going in?

Can you get another round of Hep B vaccines? The first time I went to dialysis I cried...I felt so lost. Go to the unit and check out the center. The social worker will make you sign some release papers and may make you watch a video. It's okay to feel lost and confusion. Even though it may sound trite but it will get better, hang in there...
xo,
R

[MooseMom]

Well, this is all very sucky.

Great news, though, that you're off "medical hold."  That's a very big deal, so congrats.

Anytime anyone asks, "What did you feel on that first day of D?", I read the replies with great attention.  There are so many different responses!  Some people have cried all day.  Others were relieved that it wasn't nearly as bad as they though it would be.  Still others were too ill to even remember.  I suspect I'll be a crier, but I know I will survive it, and I know you will, too.  It's what you have to do to stay healthy enough for that transplant!  I'm sure it will feel like the world has suddenly shifted on its axis, but I hope that the prospect of that transplant will keep you going.  Do you have any more news?

[woodsman]

Well the transplant center called today and gave me bad news (imagine that) They said they still can't be sure about the cysts on both of my kidneys so i am back on hole for a transplant. Then they said that i will have to do the scan with dye and we all know what that means... I am pre dialysis and i intend to stay that way for as long as possible.
Then they drop the bombshell and say if the dye test does not show what they want then they want to remove both my kidneys and biopsy them. They think there maybe some bleeding and something called proteina???. I don't know..... I have to say this is the lowest i've felt to date with all this crap and i feel it's all closing in on me.. I really don't feel bad just a bit tired but all in all i am okay. I eat well, take a P often and do what i do still without issue, i work, now i wonder if i am such a bad person to have all this happen to me???.
O well let's see what the next day will bring!!! Thanks to all for reading my long long  rant.. 

[MakeMyDay]

 

[rsudock]

Well the transplant center called today and gave me bad news (imagine that) They said they still can't be sure about the cysts on both of my kidneys so i am back on hole for a transplant. Then they said that i will have to do the scan with dye and we all know what that means... I am pre dialysis and i intend to stay that way for as long as possible.
Then they drop the bombshell and say if the dye test does not show what they want then they want to remove both my kidneys and biopsy them. They think there maybe some bleeding and something called proteina???. I don't know..... I have to say this is the lowest i've felt to date with all this crap and i feel it's all closing in on me.. I really don't feel bad just a bit tired but all in all i am okay. I eat well, take a P often and do what i do still without issue, i work, now i wonder if i am such a bad person to have all this happen to me???.
O well let's see what the next day will bring!!! Thanks to all for reading my long long  rant.. 

you are NOT a bad person! You are a wonderful person delt a crappy hand.   I am so sorry you are feeling so low. thinking about you and sending you love!

xo,
R

[MooseMom]

This story gets suckier by the day.

I've been thinking about you all day.  This is a really confusing situation for you, I'm sure.  In my very humble opinion (and PLEASE feel free to completely ignore me), I think you should do everything you can to preserve the renal function you have.  Even if you have to start D soon, all the research I've done and all of the stories I've heard on this forum make me believe that preserving as much renal function as you can is paramount to good health on D.

From our own Hemodoc:    http://www.hemodoc.com/2011/03/preserving-residual-renal-function-the-ignored-goal.html
If you google "preserving renal function", you get all sorts of abstracts that essentially say the same thing, that preserving renal function is a powerful predictor of successful treatment.

Sometimes doing nothing is the best course of action.  I can't believe I just said that; I usually HAVE to do SOMETHING!  If you don't have any "issues" yet, then maybe you should consider leaving things alone right now?  I know that won't reactivate you on the list at this moment, but to get back on the list, it sure seems they are making you pay an awfully high price.  I can't believe they are actually considering removing both kidneys.  That seems way over the top.

[okarol]

Well the transplant center called today and gave me bad news (imagine that) They said they still can't be sure about the cysts on both of my kidneys so i am back on hole for a transplant. Then they said that i will have to do the scan with dye and we all know what that means... I am pre dialysis and i intend to stay that way for as long as possible.
Then they drop the bombshell and say if the dye test does not show what they want then they want to remove both my kidneys and biopsy them. They think there maybe some bleeding and something called proteina???. I don't know..... I have to say this is the lowest i've felt to date with all this crap and i feel it's all closing in on me.. I really don't feel bad just a bit tired but all in all i am okay. I eat well, take a P often and do what i do still without issue, i work, now i wonder if i am such a bad person to have all this happen to me???.
O well let's see what the next day will bring!!! Thanks to all for reading my long long  rant..

Can't they try doing another scan without dye first? Since you are predialysis you'd think they'd want to have you hang onto your remaining function.
Do you think they meant proteinuria, a common symptom of badly filtering kidneys and of chronic kidney disease? Here's more info: http://kidney.niddk.nih.gov/kudiseases/pubs/proteinuria/
Do you have blood in your urine? Are you anemic? What makes them think there is bleeding?They do not need to remove your kidneys to biopsy them.
I hope you get more answers before they do something drastic like removing your kidneys. Jenna's nephrologist said that nowadays, unless there's cancer or enlarged kidneys due to PKD, they don't remove native kidneys as it is a tough surgery to recover from.
Jenna has been at 17% function for nearly 18 months, and they say she could last 5 years at that level.
Here's a hug! 

[woodsman]

Yes i meant proteinuria, the Neph called today and he wants me to start dialysis on tuesday next week and he wants me to see a urologist next week. I agree that taking out the kidneys is my last resort. I would think that even with the dye they should be able to tell then but then my kidneys are done. I really don't know whats next here and i am more confused now than i have ever been in my life. I have cysts on both kidneys not just one and they say 2 of the cysts are closer together and that they may be the ones that they are concerned about. Man when it rains it pours.... i don't know what to do.

[willowtreewren]

You need lots of hugs. 

 

I can't understand why they are pushing to remove your kidneys! You will have to watch your fluid intake so much more if they are removed.

 

Aleta

[woodsman]

You need lots of hugs. 

 

I can't understand why they are pushing to remove your kidneys! You will have to watch your fluid intake so much more if they are removed.

 

Aleta

They say they maybe cancerous but they are not sure yet. They don't want to do a tranplant and then have to take them out so they want to make sure befor proceeding with a transplant.

[willowtreewren]

Oh, Woodsman.

The anti-rejection drugs make you even more prone to cancer so they really do need to verify that you have none now. Even so, you would think that a biopsy could handle that!

 

Still thinking of you.

Aleta