rejection treatment- When to stop?

[Roxy]

Hi all,

As some of you may know from my biopsy thread, I'm currently in the hospital being treated for rejection. My question is, how long/how much treatment do you go through before you feel like the side effects and possible damage of treatment itself outweighs the the benefits and chances of reversing damage on the kidney? I've always had ups and downs with my creatinine but my baseline was about 1.8-2.0 with it now being 2.3 and in doing the biopsy they saw antibodies present against the kidney. With the treatment so far ( it's been only 4 days, with a definite 4 more to go) there have been no positive changes. The doctor says that if it doesn't go down they may want to do another biopsy and more rounds of treatment. However, there's a big part of me that's thinking that if the damage is already done and it is not ALOT of damage, and my kidney isn't responding then will another week of these crazy meds end up being more harmful than helpful in the long run? Mind you there hasn't been really much of a rise from 2.3 either. It went up to 2.3 a couple months ago and has just hung out there.
My other concern is that if I don't do exactly what they say that they will label me as non-compliant which is what they thought I was when I wanted to list with them in the first place 5 years ago, so I fear that they are quick to go back to that thinking. It's not that I don't want to do everything to save the kidney, but I also can't afford to be away from work (not making money, while having a mortgage and medical bills to pay) for an over extended period of time without seeing any hope of improvement to rationalize it and knowing how sensitive my body reacts to any and all treatments, I can't help but think that more medication will end up more damaging.
Guess my question is when did you say enough treatment? Or did you just keep trying until the doctors gave up? Can they consider me non compliant for not wanting to extend my hospital stay another week or two for more tests and treatment, when even they have said we can do all of this treatment and see absolutely no changes or improvement?
Any thoughts much appreciated 

[Katonsdad]

My transplanted Kidney started to sputter out about 2.5 yrs ago. My creatines ran at about 3.2 for 2 years before
it gave up the ghost about a month and a half ago.  I am now back on Hemo 3 times aweek.  There was no heroics
trying to save it. They knew it was done.  They hope to get me back on a transplant list soon.  You dont say if they
are dialysising you while you are in th ehospital if not and its holding steady ypu might still be able to hold on a bit
longer.  Best wishes and good thoughts headed to you .

[okarol]

I understand your concerns because all the treatments have risks associated with them. Jenna was in and out of the hospital to treat the rejection, and more than once her immune system was crashed to a dangerously low white blood count level. That meant we had to keep her isolation and be very careful not to introduce any possible infection, through food or contact. We live 2 hours from the transplant hospital so I slept there with her. I have updated the thread if you want to read it http://ihatedialysis.com/forum/index.php?topic=17811.0
We did everything the transplant team recommended. She also has "donor specific antibodies" so we've known that the rejection will likely continue. For now she is stable and feeling good. They are actually surprised that her creatinine went from 3.9 to 3.1 and it's been 2 years. Of course we couldn't predict this, and there's really no way to know how you will do. 
My own opinion, if you were my kid, would be to hang on to that 2.3 if you can! You don't have to be in-patient. Tell them your concerns.
Best of luck to you!

[chris73]

Hello Roxy.. Im sorry you are going through this,its a tough decision either way you look at it.After what i went through being on dialysis for 5 month thinking that I wasnt going to making through the treatments or not,I wouldn't go down without a fight doing what ever treatments or test the Dr's wanted.I dont have a lot & i do have a mortgage and medical bills etc but getting "well" would be my #1 priority.If that means "fixing"your tx or having to go on "D" health and well being should be on top.You do have a say so when enough is enough, hope you and your DR's can decide when it is.To answer your question...Fight to the end whatever the results! This is just my thoughts hope you feel better either way...Chris God Bless!

[Roxy]

Thank you guys so much for your responses and input. I am not on dialysis, my kidney is stable at 2.3. They are doing plasmapharesis and a mix of steroids and other things. I am hoping that they can set something up with a transplant center or other doctors in addition to my own local nephrologist where I live if I need to continue treatment, because I am so far away from home at the moment  that it would be just better to be home at least. I am still not symptomatic except for being a little tired due to still being anemic.

okarol- thank you for the link to the thread about Jenna. Im happy to hear she's still stable and feeling well.

I think I am going to wait until Tuesday and see if there's any improvement at all and ask them the realistic questions of what they expect to see and decide from there and with all the side effects of everything what my risks are.

I appreciate everyone's support. It really helps to get feedback from people who understand what this feels like.

[lawphi]

My husband avoided dialysis for 3 years after his first biopsy.  He ran in the high 3s when we stopped biopsies and maintained immunosuppression. 

2.3 is worth fighting for.  It is worth asking the specific antibody reaction and the success to suppress it.