quick transplant status

[paris]

Three years post transplant. I have been feeling more tired, less hungry--- more like I did before the transplant.  The recurring FSGS is causing more scarring and that equals less function. Down to 20%.  There is new evidence that an already excisting drug (Orencia for RA)  helps reduce or stop the scarring and could help in keeping the transplanted kidney working. My transplant team is looking into it for me.  This week they have a meeting with the transplant pharmacists and go from there. I am glad they respect my input and are willing to check this out.  At 2 weeks post biopsy it showed the FSGS was there so I have been expecting this.  Dr. said then "5 years" as a guess --- looks like he could be right.  Come on scientists -- discover a cure now!

[monrein]

 It makes me terribly sad to think about the short life span of this kidney and about you not feeling so great but I'm glad that the Orencia might possibly help.

[MooseMom]

Wait a minute.  How long did it take from diagnosis to tx?  I thought you had had many years of fsgs before you got your tx.  Is it common for it to recur so quickly?

Boy, if Orencia works to protect a txed kidney from scarring, wouldn't that be a boon to so many of us?  I am keenly interested in what your tx pharmacists have to say in this regard.

Paris, I am so sorry that this kidney has not kept going at full strength for longer and am hoping that the Orencia will stop the fsgs in its tracks.

[Angiepkd]

Hope the Orencia works. So disheartening to think of losing your transplant. Please keep us posted!  Sending prayers your way.   

[paris]

Moosemom,  at 2weeks post transplant,  they diagnosed the FSGS was already active.  It can be diagnosed as early as a few hours to a year.  I was told before transplant that I had a 50% chance of it recurring.  But I had to take the chance. And that made me be here when Barry got sick.  My first time around took 8 years from diagnosis to transplant (I stayed at 12 - 15% for 5 years). This time it is going a little faster.  I have been holding this in -- trying to keep depression at bay.  I have had too many changes and I would love to sit back and rest.  The Orencia has only been used on 5 patients (that have been reported) but all 5 had good results.  So now I wait to see if UNC will give it a try.  I'll try anything.

[MooseMom]

I am on my nook and type poorly on it, so forgive me if I sound curt.
Is this your second tx? If so, how did I miss that fact?  Feeling stupid. I did know that fsgs can recur more quickly in a second tx.

Sorry for my ignorance. 

I choose to have high hopes for the Orencia.

Of course you had to take the chance.  You are brave. And no doubt you sre exhausted in every sense of the word.

We are here for you.  How can we help?

[paris]

No this is my first transplant.   FSGS can recur immediately in any transplant. There is a lot more information now than when I researched a few years ago.   Since there hasn't been much research on the Orencia and FSGS, my team needs to also see if I could use it, or be in any kind of trial or study.   Right now,  I'll try anything. I know I am whining ---  but I just don't want to go through this alone. 

[MooseMom]

Oh, ok.  I thought this was your first tx, but I am not sure by what you meant in your previous post when you made reference to your "first time around" and that "this time it's going a bit little faster."

I bet you've seen this:

http://www.thedoctorschannel.com/view/arthritis-drug-orencia-helped-kidney-disease-patients-in-preliminary-test/

I thought I'd post this link for the rest of us who also have fsgs.   Honestly, I think this sounds extremely positive, and I can't imagine why your tx team would hesitate to try it.

You don't need me to give you permission to whine.  That's one reason this site exists, but you don't need me to tell you that, either.  Whining is good for you if it helps you lance an emotional boil and then lets you get on with things.  I find that holding things end leads to psychological paralysis, but that's just me.

You're not alone. 

[paris]

I should have been clearer. I meant my first diagnosis with FSGS.   Thanks for the link. That is how I read about this in the first place-- many people sending links to all the articles.  I think what now has to be determended if it can be prescribed or does it have to be part of a study.   And there are different types of FSGS so they have to go back to see if mine is the right type. Sounds simple but more complicated than it sounds. Just keep hoping.   Psycological paralysis is pretty much where I have been. Everyone tells me I am handling things so well.  As with disease, no one wants to talk about death.  So --- I just keep it to myself.  Just like the news about the kidney a few months ago. People brush it off. " at least you aren't in rejection".That is why I haven't been around much.  Keep crawling back into my cozy hole.   Thanks for the conversation --  I will keep you posted on what the decision is.

[willowtreewren]

Oh, Paris. I'm so sorry that your FSGS is progressing so quickly. Don't try to just hold it in..... share so the burden is not so great. 

I'm hoping this Orencia will prove successful...

 

Aleta

[MooseMom]

I think what now has to be determended if it can be prescribed or does it have to be part of a study.   And there are different types of FSGS so they have to go back to see if mine is the right type.

Do you know what kind of fsgs you have?  Do you know which is the "right type" for the Orencia to work?  Am I asking too many questions, as per usual? 

Sounds simple but more complicated than it sounds.

Yep, everything about fsgs is more complicated than it sounds.  Makes us special. 

Just keep hoping.

It's frustrating when that's about all you can do.  Sometimes hope can be scary.

   Psycological paralysis is pretty much where I have been.

Territory that's all too familiar.  I hate to hear anyone suffering in this way, especially you. 

Everyone tells me I am handling things so well.

Don'tcha just hate that?  Like they know what you're feeling when you can't sleep and it's 3:30 in the bloody morning. 

  As with disease, no one wants to talk about death.  So --- I just keep it to myself.

Yeah.  Sometimes it's just easier that way.

Just like the news about the kidney a few months ago. People brush it off. " at least you aren't in rejection".

People can be stupid despite being well meaning.

That is why I haven't been around much.

That explains a lot.  I'm glad you are here now, though.

Keep crawling back into my cozy hole.

I can understand that.  Cozy holes have their purpose.

Thanks for the conversation --  I will keep you posted on what the decision is.

You're welcome, and please do.

[paris]

The transplant docs did a lot of researching and made many calls. The decision was no go. It hasn't been tested enough with transplantees, it could cause the immune system to go too low,  etc. Harvard is doing more research but they haven't shared much with the renal transplant docs or researchers.   Some day I think it will become a great tool in stopping recurring FSGS.But not right now for me.  Oh well. I had to ask them.  I am disappointed and sad. 

[RichardMEL]

Oh Paris, as a fellow FSGSer I have more than a passing interest in these issues, but I am so unhappy about how quickly your tx has been affected

I know everyone is different and my last biopsy (2 years ago now) didn't show, apparently, any FSGS but yeah who knows...

I understand their caution for you given the low level you are at now - not wanting to do things that could screw things up even more on the hope for help. At least there is active ongoing research going on by obviously highly skilled and credential folks (Harvard, etc) so we can hold out hope.

Sending you some real hugs and wishes... it can't be easy with this I wish I could share some of my current well being tx wise with you.. if only

[willowtreewren]

 

 

[MooseMom]

Damn.

Damn it.

[cassandra]

       

[MaryJoe]

Paris, Of course you're sad and disappointed, who wouldn't be? I was so hoping the doctors would decide to give this a try for you. I'm sorry the news is not more positive. It's hard to have hope snatched away even when you try to prepare yourself for disappointment.  Feeling sad for you   .Wish I had something profound and wise to say that would make you feel better.    

[paris]

Thank you all. Good wishes mean so much from people who truly understand. Your kind words made me teary.  I'll keep searching.   We always have hope.  Thanks.