Transplant not as good as it cold of been

[tyefly]

Ok     now that it has been three years since transplant.....   I am finding out that my transplant kidney was not a very good kidney.... When I was offered this kidney   it was a perfect antigen match....  and that is all I was told.....  I could not ask any questions about the donor....   and anyway  your very excited to get  a kidney anyway.....    my creatinine level of 2.0  never went down.....   it has been 2.0 for three years.....   I went to my transplant doctors a few months ago to see if I could get off of prednisone....   as some of my friends were getting off the pred.....   The Transplant doctors told me that my creatinine level was too high  and that my donor kidney  was scarred and leaking protein...    I   was so surprised   and  wanted to know why I was given a kidney that was scarred...   no one told me....   Doctor said that this kidney will not last you very long....  I ask how long.....they said maybe a few years  but  might get lucky and have it for 5 more years...but they really don't know how long it will last...   well that's great.....  just great....    I am 57  and was hoping that it would last me forever.....  most of my friends who get kidney transplants  will have a creatinine level of 1.3     but not me....   So...  I ask the doctor  if  there is something that I could do to get back on the transplant list  and  if there was anything I could do to get this kidney not to work   and go back on dialysis and get on the transplant list  and get a better kidney.....  he laugh at me....  told me that I should never do anything to help my failing kidney to fail further...   lol      well I guess he right.....   sadly  I still feel pretty good.... labs are fine except my creatinine  and my bun are all high.... kidney is working in the 24% area....     

I am great full to have the transplant   but   I am sad that I will have to go back on dialysis in the future.....   I have not missed dialysis..... at    all........     

Those are my thoughts for today.......   plus I am going thru divorce....  ( hubby just doesn't want to continue because I am sick.... wanted to leave me when I lost my kidneys  but stayed for the health insurance....  but he is done now after we found out about the failing kidney....)    Ok  fine.... I can handle this my self...  always did  and always will....    but  you know what.....   I still have my loving huskies  who  have shared all of these journeys with me....

           Ok    done with the thoughts......   

[jeannea]

I'm really sorry you're having so many problems.

None of get to hear much about the kidney we get. I was told my donor was under 60 years old and the kidney was in good shape, whatever that means. I'm not clear what the doctor is telling you. The kidney is scarred now. Was it always scarred? Sometimes the surgery and meds can cause a bad reaction of some sort. The antirejection meds are toxic to the kidneys. Obviously, it's not a perfect solution. I also don't understand why you were only told this stuff when you asked about prednisone. There's some lack of communication here. Maybe your local nephrologist can help explain the timeline better to you.

I agree that you should still do your best to take care of your transplant. I don't think they will put you on a transplant list again until you're doing a lot worse. I hope you can keep it for many years yet. My first transplant lasted 11 years.

I have a real problem with spouses who bail because the other is sick. I'm sorry it happened to you.

[tyefly]

Yes    the  kidney came to me scarred... they looked at the records and the biopsy showed scarring  from the donor.....  I ask the transplant doctors why I was given a kidney that was already scarred....  he told me he didn't know.....  My nephrologist has been telling me that many people live well with a creatinine level that I have..... I have been asking him for two years what I can do to get my creatinine down....  he always tells me that there is nothing I can do  and that its just the kidney that I received.... .  told me he has one patient that is at 3.0 for 11 years after transplant....    well  what do you say..... all I know is I didn't get the good kidney that I thought....   not that I am complaining..... ok   I am   a little....but mostly disappointed....

I take my drugs every day..... I eat almost completely clean....  I drink a ton of water,  I try to keep my BS down....  sometimes it hard with stress.....   if funny about BS... you can eat nothing and it goes up over 200 just because your stressed.... 

So  now I am practicing never to get too worked up.....  easier said than done... but I am working at it.... 

Anyone else have high creatinine after transplant....     

[noahvale]

* 

[skinnacat]

wow thats really sad about your husband treating u like that....i mean like u can help being sick or like that is what
u wanted...marriage is supposed to be in sickness and in health and your husband should be there at your side no matter
if u have a transplant or you are on dialysis. for me just going through all these ups and downs emotionally...if i didnt have my husband
here for me i dont know what the hell i would do. if u ever need to talk i will be here to listen and sometimes just having a good
friend makes all the difference in the world..

[del]

Wow, sorry to hear about your kidney.  It doesn't sound like your husband was there for you anyway so maybe you will be better off without him.  Think of it as being his loss!!    Maybe the doctor who told you your kidney might only last a few more years is wrong and you will have the transplant for many years.     

[Deanne]

What a horrible shock to hear that! You went through OHSU, didn't you? Was it Dr N or Dr L who told you that? I went there as well and will hit my 1-year mark soon. It sounds irresponsible that they knowingly gave you a bad kidney. At 3 years with a consistent creatinine, it could last indefinitely. The news about prednisone would cause me to have a huge temper tantrum, even more than the scarring.

And to your husband: 

[okarol]

It's tough to take that news, I know, but even though we know there are no guarantees, everyone hopes to have many years of good function.
I have posted this before, so forgive me if it's a repeat, but Lori Hartwell of the Renal Support Network has a similar story.
Her 3rd transplant at 19 years old (the first two as a child never worked) was a perfect match, but it had some problems. The doctors told her it wouldn't last long, because her creatinine was 2.2, and would not improve.
That kidney lasted 20 years. I know every situation is different, but I will keep good thoughts for you and hopefully you'll continue to feel good for a long time! 

[kristina]

I am very sorry tyefly and I keep my fingers crossed that your Creatinine gets lower
to give you a chance and keep this kidney working for years to come...
I also feel very sorry for what you go through with your husband
and hopefully this sorts itself out very soon as well.
I send you my best wishes, Kristina.

[MooseMom]

Your husband will go to a special place in hell that is reserved for spouses who bail and for people who tell you that they will be tested to be a potential donor for you but never do.

Sometimes I think we get to focused on lab numbers and forget to look at what they really mean.  A consistent creatinine of 2.0 should not be too worrisome, but that is easy for any of us to say, right?  It's at this point that we are supposed to reassure you that what really matters is how you feel.

Your tx team may be right when they say that your kidney probably won't last more than five years.  But they could very well be wrong.  The first time I saw a nephrologist after discovering my renal function was worse than I had thought, he immediately sent me for a tx eval.  He told me, and I quote, "I don't have much hope for those kidneys."  My gfr was just a bit too high for me to be evaluated, so I was turned away.  It wasn't until 6 years later that I had to have a fistula installed and was sent again to be listed.  When my neph told me to get a fistula, he told me I'd probably be on dialysis within the year.  Two years passed and I got a pre-emptive transplant.  So my neph, as terrific and experienced as he is, was wrong on all counts.

We can all post our stories to reassure you that your docs may be proved wrong, too.  But we none of us have a crystal ball that shows your future.  While you, admittedly, have valid reason to be concerned, you have equally valid reason to be hopeful.

In the meantime, we are here for you; I hope we can be helpful to you.  As for your husband, karma is a bitch.  He will pay in some way.

[SooMK]

I hate to hear a story like this. I would say you're past due for something positive to happen and I sure hope it does. You can't make your husband be someone he's not, so maybe it's good riddance to him. Meantime you must do the best you can. I hope that, in spite of the prednisone, you are feeling pretty well. Keep doing your part by eating well, taking your meds and spending time with your best pals--I'm sure that's a great de-stressor. Wishing you the best!

[obsidianom]

I am really sorry about your husband. That really is awful. I cant imagine doing that to my wife. Marriage is for better or worse , sickness and health.

Now for the GOOD NEWS. Don't worry so much about the creatinine. It is just a number. it is not toxic. It just gives a rough idea of function. What really matters is you are feeling ok. That means the kidney is working fairly well. You have plenty of leeway before it fails. Some patients get to 8 or higher before dialysis. Try to not focus on that n umber. Just protect the kidney the best you can and LIVE your LIFE. You may get many years with it. Just because it was scared form the previous "owner" doesn't mean the same mechanisms that caused it in that person are going on in you. you may be supporting it better then the donor and it may live a lot longer then you think.

[KarenInWA]

Like NoahVale said, my kidney was ruined by a biopsy needle after only having it for 3 months. I have had my kidney for over 3 years now, and the 3 year mark for that biopsy injury will be the first week of April. My creatinine got as high as 9.9 while recovering in the hospital, and has settled at 3.0 to 3.3. My gfr is anywhere from 15-17. I have been re-listed since July 31, 2013 (they put me back on the list before going through testing - I think they felt bad. It was the quickest re-listing ever, that I know of) and I completed testing in early September 2013. I have been listed as inactive since November 2014, which both my tx neph and I agreed on. My labs are stable, I feel fine, and studies show that re-transplantation *too* early is not good for survival (based on symptoms. if I have any, I sure don't notice them.) Goal is to put me back to active once my gfr hits 12. My personal goal is to hang on to this function for as long as possible, because I want to make the most of this gift that my non-blood relative gave me. She offered it to me from the goodness of her heart and from the plans that God put before her (she credits Him a lot for that) and I, for one, want to hold to it for as long as I can (and granted, who wouldn't?). I still work FT, work OT when I can, travel, go out and do things, (like today I got up early on a day off and cheered my Seahawks as they left for the Super Bowl. GO HAWKS!!!) I was tired today, but I think that had more to do with going to bed late...(bad habit!)

Which, speaking of, I need to go to bed now. I work the 5am shift these days, and it's 9:30pm in my part of the world right now...

KarenInWA

[kristina]

Ok     now that it has been three years since transplant.....   I am finding out that my transplant kidney was not a very good kidney.... When I was offered this kidney   it was a perfect antigen match....  and that is all I was told.....  I could not ask any questions about the donor....   and anyway  your very excited to get  a kidney anyway.....    my creatinine level of 2.0  never went down.....   it has been 2.0 for three years.....   I went to my transplant doctors a few months ago to see if I could get off of prednisone....   as some of my friends were getting off the pred.....   The Transplant doctors told me that my creatinine level was too high  and that my donor kidney  was scarred and leaking protein...    I   was so surprised   and  wanted to know why I was given a kidney that was scarred...   no one told me....   Doctor said that this kidney will not last you very long....  I ask how long.....they said maybe a few years  but  might get lucky and have it for 5 more years...but they really don't know how long it will last...   well that's great.....  just great....    I am 57  and was hoping that it would last me forever.....  most of my friends who get kidney transplants  will have a creatinine level of 1.3     but not me....   So...  I ask the doctor  if  there is something that I could do to get back on the transplant list  and  if there was anything I could do to get this kidney not to work   and go back on dialysis and get on the transplant list  and get a better kidney.....  he laugh at me....  told me that I should never do anything to help my failing kidney to fail further...   lol      well I guess he right.....   sadly  I still feel pretty good.... labs are fine except my creatinine  and my bun are all high.... kidney is working in the 24% area....     

I am great full to have the transplant   but   I am sad that I will have to go back on dialysis in the future.....   I have not missed dialysis..... at    all........     

Those are my thoughts for today.......   plus I am going thru divorce....  ( hubby just doesn't want to continue because I am sick.... wanted to leave me when I lost my kidneys  but stayed for the health insurance....  but he is done now after we found out about the failing kidney....)    Ok  fine.... I can handle this my self...  always did  and always will....    but  you know what.....   I still have my loving huskies  who  have shared all of these journeys with me....

           Ok    done with the thoughts......

Hello again tyefly,
I just wanted to add to my comment above, that when my kidneys first failed in 1971
and then slowly began to "pick up" again a bit of their function,
many blood-test were taken and I also had a kidney biopsy taken in 1972,
which diagnosed me with Chronic Proliferative Glomerulonephritis...
... I was then told by quite a few different nephrologists that I should prepare for dialysis
because my kidneys would or could not function longer than another six months...
((I was very desperate at the time, so I naturally saw as many nephrologists as possible...)
That took place in 1971/72, but I only had to start with dialysis 43 years later, in December 2014...
... That just goes to show, that there is no certain medical prognosis about kidney failure
or how the function of a transplanted kidney may turn out in the  future...
(I have read in a medical paper, that some transplanted kidneys take a little longer to really "pick-up" their function)...
... What I am trying to say is this: Please give it a little more time
and perhaps everything about your transplanted kidney function works itself out...
I keep my fingers crossed and send you my best wishes, Kristina.

[Simon Dog]

All persons on the waiting list should familiarize themselves with the KDPI (Kidney DOnor Profile Index), which is a numeric representation of the quality of the kidney.

The first or second question when the surgeon calls to offer a cadaver kidney should be "what is the KDPI"?   (After, perhaps, CMS status if you are a CMV- recipient).   When you are at one of your waiting list meetings with the transplant team, ask what KDPI people in your situation based on the EPTS (Expected Post Transplant Survial) generally get, so you will have feel if you are being offered one at the high end of what you qualify for when offered.    You will need to make your accept/decline decision "on the spot", so there will be no time to read up on these concepts when you get "the call".