I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: GoingThere on December 15, 2012, 03:17:41 AM
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Me again:-)
Well the detailed test showed I have no humoral rejection, only moderate cellular - vascular rejection. Today I'll get the last pulse of medrol and I've already started to get Octagam for antibodies.
Next week I'll have another biopsy which will show if there is any progress.
Doctors told me there are even stronger antirejections drugs but with serious side effect for the rest of my life. I think that this last drugs won't be acceptable for me. In that case kidney goes out.
What you would do? Fight till the end or you would put kidney out, heal your wounds and try it another time with different kidney?
I know my Pra will now be much higher so I think I will accept my best friends offer to donate her kidney to me. She is pushing all the time.:-)
Physically I'm already fit. Just ten days after tx I as able to climb to eighth floor, today I'll start weight lifting.
Uros
p.S.: medrol makes me going crazy. Cannot sleep, I'm anxious,so they've put me on Seroquel. Also I have high sugar because of pulses of medeol.
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Uggg that is a hard one. Pose your question to one of your transplant team.. ask what they would do. They work in this everyday. Do they see people pull through?
Praying for you during this hard time.
:pray;
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Gregory says keep fighting, fight it out, keep exercising. I say, yes, talk to the transplant team about their feeling for steadying the cellular-vascular rejection. Its amazing what they can do. All transplants reject at first, and they work with the drugs to try and settle the situation down and balance your system. At first, the antijection drugs are a wild ride, I hear, but I also hear that after awhile they can usually lower the dose and also that you get used to them. Gregory says that was the case for him. He had a year of trouble with his kidney before it settled down (trouble with ureter).
Is there a problem with waiting this one out to the end? Will the raised Pra be a problem, for example, if you wait longer will it get higher or something? I'm asking because, if you can wait and work with this kidney till the very end without affecting the chances for a possible next transplant, then you may as well see what this current kidney can do. Gregory has been on strong anti-rejection drugs for 21 years (I think prednisalone and cellcept are seen as pretty strong?) and he is jumpy sometimes but says it was worth it.
To be clear about going crazy and anxiety: side effects of the anti rejection drugs. I've seen gregory and others describe being really emotional in all directions, and feeling pretty messy. :grouphug; Exercise is a GREAT idea. I really hope they can do something with the 'moderate cellular-vascular rejection'. To me, this sounds like a window of opportunity. :grouphug;
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What are the serious side effects you are talking about for the rest of your life?
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yeah, I don't get that either.. even if the kidney worked great, with no issues, you'd have to take the antirejection drugs for the rest of your life
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The difference is that regular antirejection drugs target specific white cells - t cells. Okt3 and more powerful antirejection drugs eliminate all white cells, which is far more dangerous.
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I'm sure this is a hard decision but it can be made even worse by the solumedrol or other steroids messing with your head. I hope you have someone you can trust to talk to, just listen to your thoughts and help you talk it through.
I know that all of us have mild to serious side effects from our meds. I ended up with a severe encephalitis and lasting brain injury from an overdose of Prograf. I have to take really high doses of Valcyte because of a bad problem with CMV. For me, I can (usually) accept that this is my life now. It's this or death with a lot of suffering before death. I know that I will always have these problems.
You need to make the decision that's right for you. You should be aware that both sides of this decision have risks and then you can decide.
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your decission, and a big one at that,,,,,,but,, I 'feel' that i would let it go and save myself for the next one. If you are possibly going to loose it anyway, why chance other health issues that could prevent you from possibly the kidney that will fit better into your 'system'. I cant emagine how dreadfully awful to have to go through the fears once again, but i would hate to take your healthy self in trade for a less healthy self just to 'possibly' keep a kidney. Just some thoughts running through my head and heart. much love and prayers...
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Sorry you're having a tough time - I don't know what I would do.
I do know that not everyone gets a high PRA from a previous rejection, but the doctors would be the ones to help you decide.
Best wishes that things get settled. :grouphug;