I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Transplant Discussion => Topic started by: draven on January 02, 2009, 06:53:56 AM
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Firstly Happy New year to everyone. and apologize for the long rant
: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 :banghead;
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Tell them NO! Tell them NO! Tell them why but tell them NO!
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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.
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Hi draven, can you please remind me what the normal range is for creatinine in your numbers?
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a creatinine level of 800 to 1000 and its time for dialysis. depending on the person and how they feel.
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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?
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They need to lower your Cyclosporine dose and then retake labs in a few days. DAH
:banghead;
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.
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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.
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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.
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I found this conversion chart for creatinine units.
It sounds like you've done your homework. They should be listening.
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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.
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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.
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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.
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well im off the hospital tommorow morning. i should be home by wednseday. hope all goes well.
speak to u guys soon. :waving;
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:bandance;
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 :P
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:yahoo; draven :bandance; Make sure you drink plenty. :cuddle;
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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.
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Yay! That's great to hear draven! :yahoo;
:thumbup; Good advice monrein.
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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!
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went for my regular blood test today creatinine went down more to 151 :2thumbsup;
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.
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That's great news. :clap;
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VERY important to hydrate. I figure, if I don't slosh when I walk..
I need a drink! LOL
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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.
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:2thumbsup; Good to hear from you!
Let's hope those changes help! :cuddle;
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:grouphug; draven, I hope things turn around for you. Keep us posted. :cuddle;
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Don't let them screw up your new kidney. I swear...why can't they just listen. We know our bodies.
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Had bloods done today creatinine is down from 151 to 133. Doc wants to lower predinsone to 4 tablets instead of 4 & half. and wants me of cyclosporine by the end of the month. he did mention my white cells were a bit up. not sure what that means.
as for the colchicine tablets took them for 2 days and got a pretty upset stomach. still hard to walk. pain seems better. but not out of the woods yet.
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I hope you continue to do well.
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:grouphug;
hope you are feeling better mate
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creatinine is down to from 133 to 128. :2thumbsup;
changing from cyclosporin to prograf on friday. im also down to 3 and a half predinsone.
Doc says my uric levels are still high and i must drink even more...
gout is getting better, pain is only in the right foot now. strange but the pain has "moved" from my ankle to the top of my foot.
I plan to take a walk on the beach later in the week.
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3 1/2 mg of Prednisone? man, I'm at 12 1/2 and I can't wait to get to anything under 10 mg!!!
I'm glad you're doing well draven! Keep on trucking!!! :cheer:
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draven - great to hear of the improvement - keep it up! :waving;
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im on 3 and a half predinsone tablets but they are 5mg each. so thats 15 and a half mg's ???
but it does get reduced every second week. so i will get there eventually.
i was wondering what does the predisone get reduced to. do you end up taking 1 or 2 a day or do you stop taking it at some point?
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im on 3 and a half predinsone tablets but they are 5mg each. so thats 15 and a half mg's ???
but it does get reduced every second week. so i will get there eventually.
i was wondering what does the predisone get reduced to. do you end up taking 1 or 2 a day or do you stop taking it at some point?
My husband's docs have told him that the lowest he can go is 5 mg a day, or they might do it as 10 every other day.
After reading here about the "steroid-free" regime that Karol's daughter is on, I read what I could on the web. I am of the impression that this approach involves a pulse of steroids at the beginning and then a very rapid taper off. I haven't heard of anyone who is on the standard steroid regime going below 5 mg a day. If anyone has been on a standard regime and has gone below that level, I would like to know more about it.
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Hi
Went to see my nephrologist today for my monthly checkup. he is very pleased with my progress. my creatinine is down to 126. and my prograf level is 6 he says thats excellent. he wants me to lower the predinsone even more today so im taking 3 a day (15 mg) and will lower it more in 2 weeks. he also says im ready to go back to work so really excited about that.. :bandance; and my potassium level is perfect so i can finally have that Banana Split ;D
so things are looking up.
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Great news Draven! It's fun to have labs drawn now, right? I have my next draw on Monday after not having them drawn in four weeks. I can't wait! Sounds like Prograf is definintely working better for you. :clap;
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Great news mate
Enjoy the banana split
:yahoo;
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Slight update. things still going good. im now on prograf and cellcept. no more cyclosporin and imuran.
My feet are finally pain free. my last creatinine level was 126, a few weeks ago. will have a blood test on monday.
the only new things to report are that the prograf give me the occasional upset stomach. and that my weight is picking up ???
i was 78kg when i left the hospital. and it stayed constant until a month ago. now im between 81,5 to 80 kg. as far as i can tell im not overeating.
with regards to predinsone im on 2 & half once a day. thats 12& half milligrams.
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That's good to hear, I'm pleased for you. I'd guess the steroids are causing the weight gain, hopefully it will even out as they are reduced. (I'm basing this pearl of wisdom on my dog who is on perdnisolone as it's called here :rofl;)
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My PREG-nisone (because pregnant is how I look on this stupid drug :p) basically reduced 2.5 mg every weeks at first and then when i got to 20 mg I was reducing 2.5 mg every 3 weeks. I hit 10 mg on Feb 16th and I'm going to reduce by 1 mg every month beginning April 1st until I hit 5 mg. Once I hit 5 mg he's going to assess everything and determine whether or not we're going to got totally off or stay at 5 mg. Being that I received a good live donor he's pretty confident that we can go totally off. My fingers are crossed, but I could live with 5 mg if needed
I'm so glad you're doing better on the Prograf and Cellcept. I can't complain about those drugs, really. I'm losing some hair, but they said that should stabilize at about 6 months to 1 year post transplant.
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Had bloods done last week my creatinine is 116 :clap; that is the lowest its ever been since i left the hospital. got a little bit of the flu last week but it seems to have gone. the only complaint i have apart from the slight weight gain is a upset stomach. i think that maybe the prograf.
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Glad to hear things are good with you draven. Do you take anything to protect your stomach from the Prograf? I'm taking one Nexium every morning and so far no problems.
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:clap; Great news about your creatinine levels. I hope your stomach settles down soon. :cuddle;
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Hi monrein
im not taking anything for my stomach. apart from opmeprazole for the heart burn acid reflux. i have a appointement with my nephrologist next week. i will speak to him about the upset stomach...
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:2thumbsup; Having the creatinine going down is great! Very happy for you!
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Went to see my Nephrologist today for my checkup. kidneys doing great. creatinine still 116.
Doc says he wants me to stay on 1 and a half (5 & half mg) predinsone till the end of may, and lower it a bit more after that.
He is also going to take me off the izonaside (spelling) and vitamin b6 tablets in a months time. :yahoo;
that means takeing 4 less pills in the morning. i had to take them for the first six months in case i contracted T.B. which is problem over hear in Africa.
And he also is going to lower my prograf and cellcept. He also mentioned me going off the prograf and just using cellcept???? has anyone out there just been on one antirejection med?
im also going to divide my doses of cellcept throught the day. apparently that can help ease the stomach issues i have been getting.
So things are going good :)
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Glad things are doing well. :2thumbsup; Hope that creatinine keeps going down and stays down. :cuddle;
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I have never heard of going off the Prograf and just staying on the CellCept. I saw my regular nephrologist for the first time since transplant on Thursday and he mentioned that he might eventually reduce my CellCept, but he said the Prograf is based on levels (meaning if it's high they will reduce, if it's low they will increase). I think I would question that move. At least do some research and/or get a 2nd opinion before allowing him to take you off. Especially since you've been having problems. ???
I'm glad to hear your Creatinine is doing well. That must be a big relief for you. Keep up the good work! :clap;
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My nephew who is 10 years old visited me on saturday and he had a cold and on sunday i woke up feeling a little funny. i had a temp of about 37.7 and had a tight feeling around were the new kidney is.
its now monday and the temp has gone down to 36.9 and the tight feeling is not as bad today.
should i be worried, did i catch a bug?
any info would be appreciated
thanks guys