big decision ive been avoiding for 7 years

[gkcoley]

Okay, ive been on dialysis since i was 7 and im 24, ive had 2 failed transplants and the one i had in 05 i was in hospital 6 months.  My first transplant when i was 6 rejected in less than 2 weeks but the one in 2005 when i was 18 i went through plasma furesis for 6 weeks before the transplant, it worked beautiful, no rejection it was beautiful...then it got the BK virus and shut down, killed the kidney dead.  I have been off the transplant list for the past 7 years.  Now my doctor at my new unit has, for lack of a better term, has been harassing me about getting back on the list.  I see the pros and cons and even the possability that i wouldnt ever get a call.  I am a very high reactor with 2 failed transplants and i dunno if i could take a 3rd failure.  Allso, as far as i know BK virus doesnt go away and isnt cureable so whose to say a new one wouldnt get attacked by the virus too?  I was jsut wondering yalls thoughts on the situation.  Thanks.

-Greg 

addition, anybody who si curious here is BK virus link http://en.wikipedia.org/wiki/BK_virus

[Lillupie]

What exactly is the BK virus?

Lisa

[gkcoley]

i added a link for you lisa

[Lillupie]

you could probably talk to the transplant team about it. I did a little research on it.

 You could possibly atleast get listed again. If you dont get a call atleast someone you know might be willling to step forward to give you a kidney and they cannot even do that unless you are on the list.

The worse that can happen is the transplant team says no, but if you are compliant, i personally do not see that being a problem. Just because you have high antibodies does not mean you cant get listed. It sounds like the BK virus is atleast treatable.

http://www.ucdmc.ucdavis.edu/transplant/posttransplant/post_bk_virus.html

http://cjasn.asnjournals.org/content/3/Supplement_2/S68.full

Well, we'll be thinking of you.

[KarenInWA]

I had my transplant just over 3 months ago, and bk showed up in my lab work. Right now, all they have done so far is reduce my prograf by 0.5mg a day. I should be finding out the latest bk results soon.

Ugh. I hate all this crap.

KarenInWA

[fearless]

It looks like there are some successful ways to treat it if and when it shows up in the transplanted kidney.  It looks like they used to treat it like they treat rejection (increase meds) but actually have better luck by decreasing or changing the meds, so that the body can fight the virus.  Also, there's one medicine that is an anti-viral and an immunosuppressant - so that helps too.  Maybe things are more hopeful with the BK virus than they were 7 years ago?

[gkcoley]

thanks for the help guys, i guess ill see about getting back on the list, 7 years ago only treatment was to stop anti rejection meds, looks like theyve made huge strides in 7 years

[fearless]

I hope everything goes just absolutely perfect.  I've been on the list for about 21 months, and whenever I learn about the possible viruses and crap like that, I become discouraged.  But at least if you're on the list you have a possibility of accepting a kidney.  If the time comes and you lack confidence, you can always wait!

[Whamo]

The more I learn about transplants the more I think stem cell replacements are the way to go.  If only they were available.  Some say they're five years away.  Well, my transplant wait would be ten years, once I get on the list, and I'm not on it yet.  I still have to get dental clearance, and I get a pelvic CRI next week.  I don't blame you for being gun shy after two failed transplants.  You're not the only one to have a transplant go bad.  I've talked to several oldtimers who went through the same ordeal at my kidney center. 

[Tracy]

I had a kidney/pancreas transplant in 2009 for 5 days and it failed...both.  They removed them and now, lucky me, has 99% antibodies.  So, I am on the transplant list again, but I don't really know if I will ever get one again.  I has been hard to get used to D (I've only been on it for 2 years) but I figure if I settle into it and try to wrap my  head around this being my life, that maybe one day, I'll actually get a transplant again.

It is a lot to think of.  I can't imagine having two failed transplants.  I can see why you would have second doubts about it.  I would get on the list, you  never know what will happen.  Life can surprise you!

Good Luck!  Tracy

[mcclane]

gkcoley, you're not the only one that lost a transplant due to bk.  My first transplant lasted 4 years, and I got the bk months after the transplant.  The doctor at that time was amazed I lasted that long, as the bk is very nasty and takes out the kidney very quickly.

So now with my 2nd transplant, the hospital is monitoring bk very closely.  I believe I am being tested for it once a month.  The jury is still out on this, but it seems like even if you do receive a transplant when you have the bk (2nd time around), some people the bk doesn't even affect the transplanted kidney while some it does. 

One good news is that the doctor at my hospital is a leading researcher for the bk.  Last I spoke with her, they received funding for further research and was able to grow the bk in the lab - which means if they can grow it, they can also look for a way to stop it. 

So far, there are 2 avenues to (hopefully) slow down the bk, one is cut back on the immunosuppressants allowing your immune system to come back on line - to a certain degree, the other is switch to leflunomide and sirolimus (that was what I was on during my first transplant).  It sort of worked, but I think they caught the bk too late and the damage was done.

[RichardMEL]

A couple of comments from this peanut gallery.

I am sorry to read of the two failed transplants - specially the 2 week one! I can certainly understand you being discouraged by that. Then I think of people like Lori Hartwell - on her 4th tx now and going strong. None of this is easy of course but the way I look at it (and I admit my vantage point is a transplant that is 15 months old and going ok as of a few days ago   so my experience is limited)... but anyway I tend to look at it as the glass half full. I mean you stay on D you have all kinds of stuff that can go wrong there too. tx has different stuff to worry about like skin cancer, the meds, catching something due to low imune system, BK, CMV etc... *but* for me, I would rather get a more normal quality of life for as long as I can and as much as I can over that machine. I essentially consider the risks of both, or rather the pros and cons of both treatment options to be essential equal.. and given that I'll aim for tx every time. Now if my current tx fails and I had a nother fail quick smart I may feel differently (and I also have around 20 years on you...) but I try to look at iit as not so much "what can/will go wrong" but more "what can this do for me?" that doesn't mean I'm in denial about stuff like BK, CMV etc.. hell NO! Many of these things though there are few things I can do about it apart from keep my meds in order as much as I can, report any issues/concen to tx team and of course be paranoid about being in the sun (this is one of my big concerns specially in an aussie summer). I very much try so hard to do what I can to maximise my health/chance of avoiding stuff, but in the end there's little you can do about stuff like BK, CMV etc....

Speaking of BK I spoke to the senior neph in clinic about it just yesterday. He basically said what many of the online sources say - that most people have it from childhood, it lies dormant etc and only comes out when you have lower imune systems. I asked that since I now had a lowered imune system if I might catch it off someone, even via intimite means, and he basically said no. That seems to contradict some stuff I've seen online, but he was basically pretty much saying if it's in your system it will show up (and logic suggests sooner after tx rather than later - given when you first are transplanted your imune system is pushed down the most by high levels of meds). Now I was tested last year for BK and negative, but to make me feel better I have another test scheduled for next labs, which is in 8 weeks.... but it seems to me that what they said is really.. test for it every so often, but don't avoid people for fear of somehow picking it up. Take that opinion with as many grains of sand as you wish. He is the #2 renal guy at my hospital, so it wasn't an intern.

Anyway re stem cells.. I think we all recognise this is the most clear path to follow as the apparent opportunity to grow organs from our own cells that would be instantly 100% compatable with us, thus requiring no anti-rejection or hopefully other serious drugs is like an obvious dream come true. Available in five years? Sure, I'll put a lotto ticket on that. Just a side mini-rant from me - you know we've all seen these articles - the headlines might say "grow a new heart/lung/kidney/liver in a dish using stem cells much closer" or something, and you think "WOW!" then you read the fine print and it's something like some scientist saying "Well we're seeking funding to continue our study.. we might be able to get trials in 10 years.... if we get money of course" and so on - it's like the $5* sale fare to New Yeork -AWESOME... but there's another $200 of taxes, fees and charges etc before you get on the plane. It's like yep there's hope and it's all wonderful, but the reality is probably much further down the track than we think. Not trying to be a downer, more of a realist. Honestly I am not sure if I will be around to potentially receive any benefit from such research but I *am* confident that within say the next 30-50 years future generations WILL be freed of the kidney failure (and other chronic disease) curse... just as 50 years ago when dialysis was so rare and way more people died than were able to be supported by D that anyone talking about the possibility of organ transplants like this would have been seen as crazy, or talking about stuff years off. Now, it's pretty common (thank God!) and the technology increases every year to make the process safer, the meds better and more refined, and the lifespan of transplants longer.

If it was me, even with a high PRA and whatnot, I would, honestly, go on the list.. because if I was in my 20's I would want that goal, that hope, to be free of that machine again, even if for a few years. The freedom I have now is worth much angst, and in this arena I think I can write from some experience having pretty much lost the use of one eye post tx, which nobody can conclusively say is related to the transplant, or dialysis, both or neither. I'm not saying this for pity or out of sour grapes or anything, only to say that if someone said to me a couple of years ago "You can get an awesome kidney, but it will cost you 90% of the vision you had left in one eye..." I'd like to think I'd still take that opportunity. As it is I have and on the whole, I'm happy with where I am at.

Whatever you decide to do of course is totally your call. There are no "right" answers here - every situation is unique, every person is too - experiences, perspectives, viewpoints etc. In any difficult situation like this all I thus hope is that everyone is able to arrive at a place where they are comfortable with the choices they have made. Let's face it - no choices we have are perfect, there's risk everywhere.. we all muddle through somehow and do the best we can.

[gkcoley]

I decided i am going to talk to a transplant coordinator, just to see whats what

[cassandra]

good call GK, I would always try to get on the list, when the 'call' comes, and you don't feel right about it, you can always say no then.

love Cas