is this normal?

[susan parry]

i received a cadaver kidney transplant 3 months ago.  i am on cellcept 500 mg 2 per day, rapamune 1 mg 1 per day, prograf 1 mg 3 per day and valcyte 450 mg 1 per day.

about 6 weeks ago my legs and ankles started to swell.  they put me on lasix 20 mg 1 per day.  this didnt help so about 3 weeks ago they increased lasix to 40 mg 1 per day.  this still hasnt helped. 

they had me get an ultrasound on my kidney and my legs (check for blood clots) and all seem normal.

last week on wedneday my creatine jumped to 1.6 (had been 1.1-1.2) on thursday it was 1.5 friday it was 1.2,  monday it was back up to 1.5, 

has anyone else experienced this post transplant? 

thanks for all your help and support-this is the best website i have found

sue

[kellyt]

First off congratulations on your transplant!   

I have not experienced any swelling, but was told to contact the transplant clinic immediately if I did.  The creatinine jumping around is normal in the beginning I think, and your jumps don't seem to be real bad.  They have you on quite a bit of antirejection meds, so they may start adjusting those soon.  I'm only on Cellcept 250 mg, 3 twice a day and Prograf 1 mg, 2 twice a day.  But I started out with 4 Prograf twice a day and 4 Cellcept twice a day right after transplant. The first time my creatinine jumped from 1.1 to 1.3 and then 1.5 my nephrologist lowered my Prograf and my Cellcept a tad, as he thought I might be getting a little "toxicity".  It came back down, but then started to rise a lot.  Come to find out I had (and still have) a lymphocele fluid pouch that was under my new kidney and compressing my ureter causing my kidney to not filter properly.

What is your Prograf level running?  Mine was in the 8's and 9's and they were happy with that, but I was feeling real jittery and hot so now it's running in the 5's and 6's and he's extremely happy with it there.

[susan parry]

thanks for answering
i dont know what my prograf level is-they dont say-should i ask?
your not on rapamune?  or valcyte?art

i started with 6 prograf a day, then they lowered to 2 in am and 1 pm.  rapamune was 2 in am now just one as they said my level was too high (rapamune level).  and they mentioned that the prograf level was high so they dropped me from 3 and 3 to 2 and 1.  cellcept has remained the same thoughout. 

they dont tell me much.  other posts i have read seem to know more about their donors (like 5 out of 6 match).  i really dont know what that means nor do i know about my donor only she was a 45 year old female.  i am 46. 

my bun was 26 on monday.  i get blood drawn every monday wednesday friday and go to clinic (it was every 3 weeks now every week since the increase in my creatine).  i am exercising elevating my legs when sitting and drinking lots but doesnt seem to help the swelling.  they said they might have to do a biopsy? 

i am really new to this process.  i was on the transplant list less than 2 weeks before i received my transplant.  never on diaylsis but my gfr was 15 and my creatine was 3.7 the day before transplant. 

it came down quickly to 2.5, then 1.5 then 1.1 on the 2nd, 3rd and 4th day after transplant and had remained at 1.1 to 1.2 since that time until last week.  on november 5 was my 3 month anniversery and they were suppose to decrease my meds at that time but due to the creatine level they didnt want to touch the meds just yet. 

thank you for listening
sue

[susan parry]

kellyt what will they do about the fluid?  what causes that?  how long have you had your transplant? 

thank you

sue

[fluffy]

i had some trouble with swelling a couple weeks ago, so they dialysed me and upped my lasix it seemed to do the trick. hope its nothing serious

[kellyt]

I transplanted one year ago Nov. 5th.  I had a living, non-related donor and she was a 3/6 match.  We are the same age.  Due to the kidney being from a living donor I may be on lower antirejection meds because of that.      I was on Valcyte for about four or five months, but don't take that any more.

Definitely ask about your labs.  Creatinine is the main # that they look at, it seems, to check the kidney function, but there are many other factors that come into play if their is rejection.  Like when my creatinine was going up it was just my creatinine.  I wasn't having any other lab problems that made them say "rejection".  I always ask about my creatinine and my Prograf level.  I was getting my labs drawn weekly after transplant and now I go every few months.  I had them done yesterday and my creatinine was 1.2 and my Prograf was 5.8.  I think they want the Prograf between the 4's and 10's depending.  Like I said earlier, they were happy when my Prograf level was in the 8's and 9's, but I was feeling really strange.  They are pleased where it is now.  On my last few lab draws it was in the 6's.

If you want you should be able to receive a copy of your labs.  There's no reason why they shouldn't give that to you. 

I'm not 100% sure about the fluid.  It could mean a lot of things.  The kidney may not be filtering well and the fluid is backing up, but there are other things.  If your creatinine is still 1.5 or lower I doubt that's what it is.  I had a lot of fluid in my left arm after transplant and they said that would go away and it has for the most part.  I had a fistula placed in my left upper arm that was never used, as I never did dialysis either, and it stopped working the day after transplant.  They were especially interested in my left leg, as my kidney is in the front, left.  The extra fluid can definitely cause problems with your heart, so take it serious.

But ask, ask, ask.  They work for YOU!  That's the most important thing I've learned from this fabulous site!  Ask them if they want you to drink more or drink less while you have this fluid.  You may need to drink more to flush yourself out.    ASK!   

[Phraxis]

I will add my voice to the "get your labs" chorus. I have printouts of all levels going back through nine months of D  and the 60 days since transplant. I have been researching without "doing their job" learning the nouns while I process the verbs that are taking place.

You seem to have symptoms that require treatment. It may not fix immediately but I presume they have a treatment potocol that they are following. You should know what it is, what the other options are and what are the possible escalation pathes.

[Des]

i had some trouble with swelling a couple weeks ago, so they dialysed me and upped my lasix it seemed to do the trick. hope its nothing serious

Hi Fluffy, How are you doing?  Please send us an update.