Great way to start the new year

[draven]

Firstly Happy New year to everyone. and apologize for the long rant

 
went for blood tests on Wednesday and my cyclosprin levels are waaay up 415. 300 is considered toxic. i went today (Friday) for another blood
test and my creatinine is now 199 it was 177. and now the docs want me to come in to hospital on Monday for a kidney biopsy

bet lets look at the facts here.....

my blood sugar level normal
my blood pressure perfect  123 over 74. pulse is 90 as of 30 minutes ago.
no fever temp 36.6

Feeling healthy. apart from sore ankle/feet thanks to immuran and cyclosprine. feet are not swollen.

But this gets me


1. my cyclosporin levels is high = raised creatinine level
2 i was placed on an antibiotic (ciploxx 500) which the insert label plainly reads that use of cyclosporin with ciploxx will increase creatinine levels.

i had to take the antibiotic because my cut/wound from the transplant got infected because the transplant unit let the urostomy bag leak urine on to the cut.if i didnot take a anti biotic the wound would still be oozing, it has stopped.

and finally some of you might know that i have urostomy bag (bladder stopped working years ago) well at night i find that there are small flecks of dry blood that causes my urine to be a bit orangey in the morning but for the rest of the day its perfectly clear and output is perfect. i gave them a sample of my urine today 7:00am urine still orangey but my 9:00 is clear and they think something is up with my new kidney. the urostomy nurse told me its 100% normal to have this happen since the operated on the stoma. and i had the stent removed on wednesday it was attached with a stitch. gee wizz i wonder why there may be a little blood in the urine.

i really dont want to have to thru a whole medical procedure that might upset the kidney. all signs point to antirejection meds and antibiotics being the cause

[kitkatz]

Tell them NO!   Tell them NO!   Tell them why but tell them NO!

[kellyt]

A friend who transplanted about a month after me with the same surgical team, same hospital, etc.  He was discharged on a Wednesday, returned to clinic on that Friday for labs and they readmitted him to the hospital because his Prograf levels were extremely high (toxic).  They didn't do a biopsy, though.  His Creatinine had shot up to 2.9.  They were able to control everything and discharged him the following Monday.  Now his Prograf level is in the mid to upper 6's and his Creatinine is dropping (currently at 1.6).  It was rejection or anything, they had raised his Prograf level due to it being too low and apparently the raise was much too high.  Hopefully, they have him balanced now.   He's 75-years-old.

I hope you get yours under control.  I wouldn't want a biopsy either.  I'd ask a lot of questions.

[okarol]

Hi draven, can you please remind me what the normal range is for creatinine in your numbers?

[draven]

a creatinine level of 800 to 1000 and its time for dialysis. depending on the person and how they feel.

[okarol]

a creatinine level of 800 to 1000 and its time for dialysis. depending on the person and how they feel.

Ok but what is normal? For example, the normal creatinine range here is .6 to 1.2. Is normal considered to be below 150?

[Rerun]

They need to lower your Cyclosporine dose and then retake labs in a few days.  DAH

                                                                                                                 

They can botch the whole transplant by nicking a vein or artery.  They do too many biopsies these days.  I would make them wait a few days to see if your creatinine comes down.

It is YOUR kidney now.... not theirs.

[Sluff]

I agree with Rerun. I was on cyclosporin until I became toxic. I would not have the biopsy just yet. Ask them to give it some time, what can you lose by waiting? I'm no Doctor, but I would think you would have other symptoms if there was a problem with the kidney.

[Romona]

I would be hesistant for a biopsy. I had one on my native kidney that went wrong. I agree with everyone that says there could be damage done.

[pelagia]

I found this conversion chart for creatinine units.

It sounds like you've done your homework. They should be listening.

[draven]

thanks for the chart pelagia

as i said my creatinine was 177 and went to 199 a slight increase. but no where near dangerous.

they lowered my cyclosporine from Wednesday evening. i was taking 200 mg at breakfast and 200mg at supper (400 mg a day)
they lowered it to 150 mg a meal time so 300mg a day. hope the levels will be lower by Monday morning when they take blood again.
my predisone was also lowered on Wednesday from 5 and a half tablets to just 5. they said i must lower the dose by half a pill every 2 weeks.

im really going to air my views. i only spoke with the nurse who phoned to tell me i must come on for the test and biopsy. i will demand to speak to a doctor on Monday morning.

[okarol]

After her transplant Jenna had 3 biopsies. We were initially opposed to getting them. The first was a baseline at 1 month, the next was to compare the tissue to check if there was any early rejection (precautionary as her creatinine was fine) and again at one year. All went fine but we were told that they were optional and could be refused at any time. Jenna's surgeon sat down with us, told us why he felt it was important, and promised he himself would do the biopsies (since he did the transplant we felt he had a vested interest in making sure there was the utmost care of the kidney.)
Jenna was lucky and had no problems, but biopsies are risky, as has been mentioned, and I would not rush into it unless you feel it's essential. That's my opinion. If the transplant team wants Jenna to have any more biopsies, we will say no, unless she is showing signs of rejection.

[monrein]

My neph was extremely cautious about doing biopsies.  I never had any until my creatinine started to rise after about 20 years and at that point he wanted a biopsy to see if it was rejection or cyclosporine toxicity.  The only reason to have a biopsy would be if the treatment options are different depending on the result.  What happened in my case was that the biopsy confirmed that rejection was not the issue so a switch from Cyclosporine to Cellcept was initiated.  I got another three years out of the kidney.

[draven]

well im off the hospital tommorow morning. i should be home by wednseday. hope all goes well.
speak to u guys soon.

[draven]

 

My creatinine went down from 199 to 170 so no biopsy for me yipeeeeee.

docs say the infection on my wound and the meds i have taken plus the cyclosporin toxicity raised my creatinine... duh

[willieandwinnie]

  draven Make sure you drink plenty. 

[monrein]

Great news then Draven.  When biopsy is suggested, I always ask  "How will the outcome change the treatment plan?"  If the answer is "It won't, we'll just have more information." then I decline the biopsy.  Knowledge is power but only if it leads to a possible change of action, as far as biopsy is concerned.

[okarol]

Yay! That's great to hear draven! 

  Good advice monrein.

[Wenchie58]

I've had two biopsies in the past 6 weeks.  YAY for you!  Glad you got to skip it.  I've also learned that if my Prograf levels are high my creatine follows it up!

Congrats!

[draven]

went for my regular blood test today creatinine went down more to 151

The nurses are very happy.

drinking more especially the night before and in the morning of the blood test seems to do the trick. keeping hydrated is pretty important.

[pelagia]

That's great news. 

[Wenchie58]

VERY important to hydrate.  I figure, if I don't slosh when I walk..
I need a drink!  LOL

[draven]

finally went to see my private nephrologist today. (he was away for the Christmas holidays)
He has started to ween me of cyclosporin and putting me on prograf. and he certain the pains in my ankle is gout. my uric levels were high. and prescripred colchicine for the ankles. so lets hope things start coming right.

[okarol]

  Good to hear from you!
Let's hope those changes help! 

[willieandwinnie]

  draven, I hope things turn around for you. Keep us posted.