If you had a rejection episode, what were your symptoms?

[Sax-O-Trix]

I have to get my first biopsy on Tuesday and I am freaking out.  My creatinine has been bouncing around since day one of the transplant 5 months ago, but has been sticking around 1.7 for the past three weeks.  My baseline has been between 1.25 and 1.4.   My neph is insisting on a biopsy to find out what is going on.  I know of a childhood friend who had a biopsy by my neph back in April and she landed in the hospital for four days because they couldn't control the bleeding.  Luckily, she wasn't in rejection.

I am ready to jump out of my skin.  My only symptom to indicate a problem has been my creatinine level.  What symptoms has anyone else here had in a rejection episode?  I have read that you may get a fever, feel flu-like symptoms, have pain at the transplant sight (I thought a twinge here and there was normal, but maybe that is my other symptom), decreased urine output, weight gain of more than 2-4 lbs. in a short time period and swelling of hands, feet or ankles.  I have had none of the above with the exception of a twinge once in a while at the transplant sight, now I will have them more frequently because I know that pain is a symptom.  Ugh!

The treatments for rejection involve I.V.'s and massive steroids for one type, and a chest with nastier drugs for the other type of rejection.  I am a needle-phobe, that is why I had the transplant to begin with.  The thought of HD just scares the daylights out of me.  I can't even go there in my mind.  I think if I ever end up on HD, I will have to start smoking pot or something to get through the canulations.  Knock me out now...

Any insights on a biopsy or rejection?  What happens if you have to pee while you are laying there with the sandbag on your kidney for 4 hrs.?  The things I think about, lol.

[okarol]

The symptoms you are describing sound more like end stage - when the kidney is no longer working well. In Jenna's case she had no symptoms at all - the first clue we had was her creatinine was bad in a blood test - 4.0! Biopsies can give them an idea if your body is chronically rejecting the kidney and what they need to do if it is. There is a risk of damage from the biopsy, but they usually do not take this risk if they don't believe there is info to be gained. (Although I was scared every time Jenna got one!) Laying flat is important, keeping pressure on your abdomen is too, but they'll let you up for a few moments if necessary. Best of luck to you!

[jbeany]

My numbers have bounced from .8 to 1.2 on a regular basis for 2 years.  It may not mean a thing.  My doc just figures it's my new normal.

[ESRD Survivor]

For me the biopsy was no big deal, very little pain, was asleep through the whole thing.  My only symptom to begin with was my creatin jumped from 2.5 to 3.5, so I was asked to go to the hospital.  I spent 10 days there and came out with a cath on hemo.  That was 14 months ago and I now have a fistula.  I swore I would never ever do hemo, period.  Well pd didn't work, so I had no choice and now have a very nice fistula.  Elma cream has made the fear so much less.

Best of luck, I know how scary it all is.

P.S. go pee before the procedure.

[tyefly]

Remember    Your creatinine may increase because your out doing more activity than normal...its summer ....have you been more busy..... using muscle.....  any new activities..... 

[rsudock]

I had chronic rejection over the last 5 years with my kidney...near the end before I went on dialysis I was seeing things in my sleep....like cowebs and spiders floating in air, and my abdomen got really big...I never had the typical rejection symptoms....when the kidney finally went kaput I stopped peeing...good luck!

xo,
R

[natnnnat]

Gregory always has faith in his kidney, and trusts things will work out.  I really recognise your fears, I know what  that's like even though I was worrying about his kidney not mine.  I hope some of Gregory's sanguine attitude can rub off on you so that you get some rest and feel a bit of peace. And hopefully this is a phase.  A kidney-phase.   

[okarol]

For me the biopsy was no big deal, very little pain, was asleep through the whole thing. 

Was that biopsy on a native kidney? Jenna was awake for each biopsy on her transplanted kidney.

[sullidog]

I was awake too on my native

[C904]

I did not have a rejection, but I did have a biopsy on the transplant kidney less than two months after the transplant.  When this all went down I researched constantly about what was going on, because I just did not get why I was having a biopsy.  My creatinine was at 1.2 for the first month and slowly creeped to 1.4 and 1.5 each time I tested after the first month.  The doc wanted to make sure I was not rejecting and I was worried because their is a small chance that you could damage the kidney during a biopsy and worst case scenario you could lose it. 

I went through with the biopsy and the big difference from the one I had on my native kidney was I had to stay overnight this time and keep urinating in a bottle for them to inspect it.  There was no complications and I went home the next day.  The biopsy showed no rejection, but a little bit of trauma to the kidney that could have happened from harvesting to putting it in my body or could have been from the shock of the meds or some other random thing. 

For the next five months my creatinine stayed 1.4 to 1.5 and one time 1.6, than it dropped back to 1.3 and I just had a 1.2 last time.  So hopefully you are just going through some random blip on the screen and in reality you are doing ok.

I was awake for the biopsy and it was painless and quick, biggest pain was having to stay in bed for eight hours after procedure. 

What I found when I did my research was a ton of centers do biopsies much more frequently than in years past and it looks to be a pretty new trend overall.  The way they are viewing it nowadays is that the minimal risk is worth taking for all the knowledge they can garner from a biopsy.

I don't want to make this post as long as War and Peace, but did they change any of your meds recently?  I am convinced my creatinine went back down to 1.2 and 1.3 because I recently had my Prograf decreased from 4 in A.M. and 4 in P.M. to 2 in A.M. and 1.5 in P.M.   I had CMV recently and it decreased my appetite and I was taking my Prograf with different eating patterns and they had to decrease it because the levels shot way up because of my changed eating habits.

Good luck to you and I am sure you will be just fine

[ESRD Survivor]

They gave me some type of relaxation drugs and I went in and out of sleep for the most part.  I don't remember more than a pinch and for me the worst part was being still for awhile.  It really wasn't a bad procedure.

[Wenchie58]

I have had three biopsies on my transplanted kidney.  Rejection was my constant companion there for awhile.  Being still is the only thing I can say helps things.  It is NOT painful....the site is tender the day after, but I found the procedure painless.
It took them awhile to zero in on the type of rejection I was having...and yes...I had all those nasty treatments, but in the end...
Three years later...after weeks of treatments, my creatnine runs 2.8 ish, my meds are lowered, I work full time and I get to hug my grandkids as often as I want.  Life is good!

[Sax-O-Trix]

Getting ready to leave to go to the hospital as I type this...  I am so freaked out I can't even think straight!

[natnnnat]

Good luck sax.   

[Sax-O-Trix]

Okay...  "Biopsy" is a misnomer, a kidney biopsy is "biopsies".  Three samples are needed to make sure they have enough specimen to examine.  I survived, I am home and will hopefully have the preliminary results tomorrow.  The creatinine today was 1.6 

P.S.  I had to pee in a bedpan about two hrs. after the biopsy (first time for everything!) so they could see if I had blood in my urine or not.  I was not allowed to get up during the 4 hrs. afterwards, but did not have a weight or sandbag on the site. 

[CHeatherS]

Wow, so glad this is over for you. 

I am only 3 weeks from transplant, so am new to all of this.  Last week my creatinine went from 1.9 to 2.11, and then back down to 2.0.  They were concerned.... but then seem to relax when I got down to 2.   I wonder if not drinking enough water could do that.  I had a lot of diarrhea from the myfortic, and might not have gotten enough replaced. 

I wonder what they would do for me, as I had the transplant here in Seattle Swedish, but live in Anchorage Alaska.  Will I have t take a 5 hour flight back down here?  Hmmmm

[C904]

Okay...  "Biopsy" is a misnomer, a kidney biopsy is "biopsies".  Three samples are needed to make sure they have enough specimen to examine.  I survived, I am home and will hopefully have the preliminary results tomorrow.  The creatinine today was 1.6 

P.S.  I had to pee in a bedpan about two hrs. after the biopsy (first time for everything!) so they could see if I had blood in my urine or not.  I was not allowed to get up during the 4 hrs. afterwards, but did not have a weight or sandbag on the site.

That is real good you did not have to stay in the hospital overnight.  Hopefully preliminary comes back ok.

[mcclane]

when i had my transplant, the rejection episodes caused me to sweat profusely, without any strainous activity.  I remember the first few days after the transplant, I was sweating like crazy.  I got out of the shower in the hospital, and i sweat began to drip.

Turned out it was a rejection episode.

[C904]

Wow, so glad this is over for you. 

I am only 3 weeks from transplant, so am new to all of this.  Last week my creatinine went from 1.9 to 2.11, and then back down to 2.0.  They were concerned.... but then seem to relax when I got down to 2.   I wonder if not drinking enough water could do that.  I had a lot of diarrhea from the myfortic, and might not have gotten enough replaced. 

I wonder what they would do for me, as I had the transplant here in Seattle Swedish, but live in Anchorage Alaska.  Will I have t take a 5 hour flight back down here?  Hmmmm

I am not a doctor and I do not play one on TV, but they pounded into me drink tons of water.  I don't know if all centers have the same philosophy about diet, but mine encouraged eating a lot of protein for awhile after the transplant to aid the body in healing and to get the kidney really working and used to its new surroundings.  If you are having diarrhea your body is losing tons of valuable nutrients at a rapid pace and that will put stress on all of your body, if that affects the kidney I am not sure, but one would think probably.

[Sax-O-Trix]

I t is rejection...  Cellular, so it's mega steroids via I.V. for the treatment.  I had the first round this afternoon.  I go back for the next two days to have the last two.  Four I.V.'s in one week!   My utmost repect and sympathies to HD patients, I don't know how you do it...

Looking back over the past month, I realize I was sweating like a pig all the time (thought it was the cyclosporine) and had pains in my transplanted kidney side hip area that I just figured were pains in my hip (could have been referred pain from the kidney).  My cellcept had been cut in half to 1000 mgs. (from 2000 mgs) a day after an unidentified infection landed me the hospital for five days at the end of July.  I was told today to go back to 2000 mgs a day of Cellcept.  Will do:)  I hope I don't have to have a repeat "biopies" - once in a lifetime was once too many times for that particluar procedure, thank you!

Hopefully, this three day course of steroids will do the trick  

[C904]

I t is rejection...  Cellular, so it's mega steroids via I.V. for the treatment.  I had the first round this afternoon.  I go back for the next two days to have the last two.  Four I.V.'s in one week!   My utmost repect and sympathies to HD patients, I don't know how you do it...

Looking back over the past month, I realize I was sweating like a pig all the time (thought it was the cyclosporine) and had pains in my transplanted kidney side hip area that I just figured were pains in my hip (could have been referred pain from the kidney).  My cellcept had been cut in half to 1000 mgs. (from 2000 mgs) a day after an unidentified infection landed me the hospital for five days at the end of July.  I was told today to go back to 2000 mgs a day of Cellcept.  Will do:)  I hope I don't have to have a repeat "biopies" - once in a lifetime was once too many times for that particluar procedure, thank you!

Hopefully, this three day course of steroids will do the trick

Hope the steroids do the trick and just lean on that example Wenchie58 listed above and how she came through it.

[paris]

Hope the steroids do the trick.   Biopsies seem to be part of the routine.  I've had 2 so far -- 1 pre and 1 post.  It is the best way to see what the kidney is doing.  My biopsy post transplant showed that the orginal kidney disease is affecting the new kidney (FSGS).  Without that, they wouldn't have that information.  Mine never really hurt.  The 1st one was about 6 years ago and back then it was a 24 hour flat on your back hospital stay.  I was grateful the routine has changed!

Wenchie had good words of wisdom.   

Regarding fluids:  I was told to drink 75-100 ounces a day. My creatine is usually around 1.8; 1 year post transplant.  When it goes up, I know I haven't been drinking enough.  1.6 or 1.8 is my normal range now.     Good luck with the steriods and I hope the bumps in the road smooth out soon.

[rsudock]

I t is rejection...  Cellular, so it's mega steroids via I.V. for the treatment.  I had the first round this afternoon.  I go back for the next two days to have the last two.  Four I.V.'s in one week!   My utmost repect and sympathies to HD patients, I don't know how you do it...

Looking back over the past month, I realize I was sweating like a pig all the time (thought it was the cyclosporine) and had pains in my transplanted kidney side hip area that I just figured were pains in my hip (could have been referred pain from the kidney).  My cellcept had been cut in half to 1000 mgs. (from 2000 mgs) a day after an unidentified infection landed me the hospital for five days at the end of July.  I was told today to go back to 2000 mgs a day of Cellcept.  Will do:)  I hope I don't have to have a repeat "biopies" - once in a lifetime was once too many times for that particluar procedure, thank you!

Hopefully, this three day course of steroids will do the trick  

hang in there Sax!!! Let these steroids work please!!! 

xo,
R