What am i going to do?

[Brightsky69]

   What do i do?

I saw my kidney doc today. First of all I've been having troyble with stiffness in my hands and feet. it's really bad in the mornings. Plus I usually rub a low grade fever most times. The doc listened to my transplant and said he could hear tremers....whatever that means.
To make a long story short my doc thinks I need to get my transplant removed. He said it could be the reason i feel so crappy. But he also told me that if i get it removed then when the time comes for me to get a new kidney rransplant my immune systems will really attack my new transplant.
But what is the difference between that and me never having had a transplant??? My immune system would still go after my tranasplant anyway.
he really thinks I need to have it removed.....but I don't know what to do. Leave it in or remove it?

[galvo]

That's horrible news. I don't have a clue what you do. All I can do i send you my best wishes.

[RainingRoses]

Is this your neph or your transplant doctor? Can you get a second opinion?

[natnnnat]

Hmm, a second opinion, and is there any room to ... wait?  And see if things improve?

[Brightsky69]

This was from my Neph. I suppose I could get a 2nd opinion. Who do you think I should call to get a 2nd opinion?? I am doing some research online.

[Darthvadar]

Hi Brightsky....

Sorry to hear this worrying news...

As regards advice, I'm afraid I've no experience, but I have found a member of this site to be very helpful... Very generous with his time, his expertise, and himself.... You could get in touch with him for advice and information... That person is Kidneydoc... AKA Roger, the Neph. from Jamica... He's been SO helpful to me...

Hope it works out for you....

God bless...

Darth...

[KICKSTART]

What you have written is a bit confusing. But for a doctor to say take out your transplant seems a bit drastic! There could be lots of reasons you feel like you do. The thing i find strange is he 'listened' to your transplant ? Wouldnt a doctor run loads of tests before suggesting removing a kidney? I would do nothing until i had seen someone else, who certainly did more tests to find the problem.

[Brightsky69]

I think your right. He tested me for Lupus and that was negative. My systoms are stiff hands and feet which are very bad in the mornings. I usually running a low grade fever.....but not all the time. My blood pressure is relatively under control. My regular labs are normal. Everything looks good. I just have this stiffness and trouble sleeping.
I think your right...I should wait and see. I am going to see a rheumatologist on Monday. We'll see what he says.

[Brightsky69]

I also have many questions about this procedure. If they go in and take my transplant....do i have to go on Hemo?? Will I be able to go back on PD??

I just don't know if this would be worth it. I want to stay on PD until i get a transplant.

We had some electrical work done on the house and the electrician saw all my dialysis supplies and he said he would like to get tested to see if he could be a donor. He is a total stranger!! I think his motivation was the fact that his wife commited sucide about 3 weeks ago. He was the one to find her. I feel bad for him and I don't know if he is in the right mind to be a donor. But then again I am like WHO CARES.

[okarol]

I posted this news article a couple of months ago "When a Kidney Transplant Fails; Transplant nephrectomy improves survival" http://ihatedialysis.com/forum/index.php?topic=18880.0
I only have access to the abstract of the article, which summarizes it. Perhaps you could print it out and ask your doctor if this is why he feels a nephrectomy is necessary for you.
I also spoke to Jenna's doctor about it. He is aware of this and will decide what to do as Jenna's function declines.
It's a good question, regarding PD, because sometimes PD is not recommended following abdominal surgery. But it might just mean temporary hemo until you heal... hopefully that's the case.
Jenna had a bladder augmentation and for that reason was told she should choose hemo over PD (this was 5 years ago.) But now, years later, her transplant neph (who is a urologist) says he can take a look with a scope, and if she doesn't have scar tissue he feels it may be a viable option.

[Brightsky69]

The doc is also ordered a Cortisol test for me....scheduled for Wednesday (next week). We'll see what happens....

[rsudock]

BrightSky I kno this post is quite old but I was wondering what the outcome was? Did you have the transplanted kidney removed?

My brother had to get his transplanted kidney removed b/c it was causing him to have fevers and other signs of infections. The kidney got really hard and painful. Unfortunately my brother never told anyone this issue so he ended up building a lot of antibodies from that...

With me I still have my transplanted kidney and the doc is making me take a low dose of antirejection meds so I don't build up antibodies. He thinks it is better to do that then to make me go under the knife again. Of course if the kidney was hurting me and I showed signs of infection (high white count, fevers..) he would take it out.

xo,
R

[Riki]

I've never had my transplanted kidneys removed, though I've been told that one or both will have to be removed before I can be transplanted again.  I haven't been on antirejection meds for at least 6 years.

[rsudock]

Riki do you have a lot of antibodies built up in your blood? I think they do a PRC test to determine that. I think the initials are PRC...I can't barely remember anymore though.

xo,
R

[Riki]

They probably have done it, but they've never told me about it.  I wouldn't be surprised if my antibodies were high

[Brightsky69]

Update: On Oct. 19th I got my 2nd kidney transplant!!

[carol1987]

  Congratultions

[boswife]

congratualtions!!  and it must be doing great as you're looking really happy!!  fill us in with details!!

[rsudock]

Update: On Oct. 19th I got my 2nd kidney transplant!!

Awesome news Brightsky!! So glad you have a chance to feel good again!

xo,
R