Worried....

[Brightsky69]

Ok...so i had clinic on Tuesday. My transplant is only about 3 weeks old. Last week my creatine was 1.9 my newest labs said 2.9 I am still peeing like a racehorse. I had a hard time drinking like a fish between labs. Could that be the reason for the rise? My doc said "The kidney isn't waking up as much as I'd like." Granted they didn't seem worried.
I am also having trouble with a yeast infection. .
I am drinking water like a fish and hoping that helps. They are having me come back for new labs and clinic tomorrow. I am hoping everything improves. I am not spilling protein are anything.....so thats good.
One of the transplant nurses told me they have had patients that took up to 2 mouths for their kidney to be 100%.
I am trying to stay positive .

[kellyt]

They will adjust your medication over and over until they are satisfied, and your labs will fluctuate, although 2.9 is a little high.  I'm sure they will know what to look for.  When my creatinine started going up they did a sonogram and found I had a lymphocele pocket (pocket of fluid that was compressing on my ureter).  But that wasn't found until about April, about 5 months post transplant.  Labs were good up until that point.

Just keep them  (post transplant team) informed on any strange/different symptoms:  headaches, fluid retention, nausea, decrease in appetite,  reduction in urine output, swelling of your leg (on the side your transplant is on), fever, pain in or around your new kidney, etc.  Call them for everything. 

You're in my thoughts!!

[Brightsky69]

Thanks Kelly. I actually made a mistake on my creatine level. It's actually 2.2 up from 1.9.

[Brightsky69]

So far I feel good. No ankle swelling. Still peeing like a race horse. No pain in my transplant...no fever. No headaches. My appetite is good too.

[paris]

I have learned in the past two months, if the transplant team isn't worried then I shouldn't worry!   Mine was in the 2+ for the first 6 weeks. It is now  1.7 and they say the kidney is stilll waking up.   Are they giving you a target number of fluids to drink a day?   I had a couple of days I was concerned because the "output" was lower.  But, as soon as I added more fluids, it was better and creatinine started going down again.  I drink between 75-100 ounces a day.  Fluid is very important to help the kidney "wake up".

Kelly gave you good advice.  Like she said, they will keep adjusting the meds. My prograf has been changed three times.  It is so hard not to worry.  It does sound like you are doing good. My creatinine was around 2.8 the first four weeks.   I bet your creatinine will fluctuate some until all the meds are leveled off.   

Also, I am at 2 months and my kidney is still improving.  I was told it could take many months till the kidney is 100% or  I may just be at 1.7 the rest of my life.   It is much better than before transplant--so I am just going to trust them!!     I hope yours has gone down at your next labs.  Let us know.   

[rsudock]

BrightSky your labs sound okay keep drinking the water and taking your meds. thinking of you...
xo,
R

[Brightsky69]

everyone. I feel a better about it. They did tell me to drink 8 to 10 glasses of water a day. My boyfriend is always shoving glasses of water at me. I am really increasing my water intake. They have messed with my Myfortic and Prograf each time go in for clinic.

[Brightsky69]

Still worried.....
I had clinic today...my creatinine went from 2.2 down to 2.1. Still not great. Doc said I was drinking too much water because my sodium lever had dropped.So now when i go back to clinic I have to do a PVL. i guess it's like an ultra sound.And I still have some yeast in my urine.
He even said that if things dont improve then they might put me back in the hospital to run some tests and see what is going on.
As I was walking out the door my doc said "Your not upset are you?" I am hoping he meant that like don't worry.
I am trying to be positive. I still feel good. No swelling, no fever and my BP is good.

[paris]

Brightsky, they told me not to drink just water but to have a mix of different fluids during the day.   A little skim milk, low sugar juices. etc. They said that only water will mess up electrolytes, etc and effect lab results.   

I keep thinking about you and hoping things even out soon.   The no fever, good bp and no swelling are really good signs. Any weight gain?   My creatinine is moving down so slowly; tenth of a point every week or two.  I also try to keep positive.    Sometimes being in the hospital is the best thing, so they can run all the tests at one time.   When do you have labs next?  Let us know how they are.   

[okarol]

What are your Prograf and Cellcept numbers?

[Brightsky69]

Paris...your right. They told me to drink stuff like Gatorade and other juices. My weight has been pretty stable. I also don't have any yeast infection symptoms like burning when i pee.
okarol - I am on Myfortic and Prograf. My Prograf level must be ok because they didn't change anything. I am not on Cellcept.
I go back for labs on Tuesday. Plus on Monday I get my JJ stint removed. Not looking forward to that. They were telling me that once that is removed it's gonna burn when I pee the first couple of times. UGH!

[st789]

Pray for your kidney.

[okarol]

Paris...your right. They told me to drink stuff like Gatorade and other juices. My weight has been pretty stable. I also don't have any yeast infection symptoms like burning when i pee.
okarol - I am on Myfortic and Prograf. My Prograf level must be ok because they didn't change anything. I am not on Cellcept.
I go back for labs on Tuesday. Plus on Monday I get my JJ stint removed. Not looking forward to that. They were telling me that once that is removed it's gonna burn when I pee the first couple of times. UGH!

Jenna keeps her lab slips in a notebook so we can see the relationship to her Prograf levels and her creatinine. Too little Prograf and creatinine goes up, and same if the Prograf level is too high, creatinine spikes up. It's changed many times for no apparent reason. It can't hurt to ask for a copy of your labs every time you go in. That way it's not such a mystery.
The stent removal for Jenna was uncomfortable for 2 seconds, but no problem afterward. Good luck!

[paris]

I had my stent removed 3 weeks ago.  The anticipation was worse than the actual event.  The best part was watching the screen (there is a camera involved--ask Bassman!) and being able to see where the new kidney is attached to the bladder.   Of course, I talked to the doctor and nurse through the whole thing--to keep my mind occupied!   It isn't bad at all.  I didn't have pain, but could tell things felt a bit different. 

It helps me to read your posts.  Amazing how each week is different from the last.  We seem to be doing ok        

Here is to our new kidneys   

[Sax-O-Trix]

Ummm...  What stent are you guys referring to???  I haven't heard anything about a stent placement yet.  Catheter, yes, but no stent (and then removal?)   

[BASSMAN]

The stint is a curled piece of plastic that they place inside the ureter, where the ureter from the transplant kidney is hooked to your bladder.  It keeps the ureter open so that the connection heals like it needs to.  They leave it in place for 6 weeks or so, until the connection between the two is healed.  The they remove it.

Guess how they do that! Ha Ha! 

http://seaspray-itsawonderfullife.blogspot.com/2008/08/stent-free.html

http://www.google.com/images?um=1&hl=en&client=firefox-a&rls=org.mozilla:en-US:official&channel=s&tbs=isch:1&&sa=X&ei=g-fdTODeJoP48AbGlf2DDw&ved=0CCQQvwUoAQ&q=cystoscope&spell=1&biw=1024&bih=600

[paris]

Bassman, I think you are the official "stent removal expert" on IHD!      I wanted to see the plastic stent after removal.  Very interesting.  Of course, Bassman was the one who told me about the camera.  All I could think of was a Nikon!!        

Bassman and KellyT prepared me, so I had no surprises.  Thanks to both!   

[Brightsky69]

I am still a little nervous about it. They use a catheter on me Thursday to get a urine sample. UGH!! That was uncomfortable.
No swelling...still peeing. 

[Brightsky69]

Whew...I just got back from having the JJ stint removed. It wasn't bad at all. I even took my first pee and it burned a little bit but nothing major. When the doc got the camera in he said "Everything looks nice and healthy."  He took all of 15 seconds. I am so glad thats over. 
Now I hope and prey that my creatine is good tomorrow at my labs. 

[Sax-O-Trix]

Glad to hear the stent removal was uneventful.  I hadn't heard about this little detail (placement of a stent) until you posted about it   Funny the Neph hasn't mentioned it either...  Which doctor removed the stent, your regular neph or the surgeon? 

[Brightsky69]

I went to a urologist to have the stint removed. No biggie.

[okarol]

I went to a urologist to have the stint removed. No biggie.

 

[Brightsky69]

  I had labs today and my creatine is back down to 1.9 They also did the PVL and the doc said everything looked great!

[okarol]

  Yeah baby!! 

[BASSMAN]