|
Brightsky69
|
 |
« Reply #25 on: January 13, 2009, 12:52:20 PM » |
|
Don't let them screw up your new kidney. I swear...why can't they just listen. We know our bodies.
|
|
|
|
|
Logged
|
Transplant June 11, 1991 (1st time) my mom's kidney
Received my 2nd kidney transplant Oct. 19th 2010.
|
|
|
|
draven
|
|
« Reply #26 on: January 19, 2009, 09:24:37 AM » |
|
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.
|
|
|
|
|
Logged
|
|
|
|
|
Romona
|
|
« Reply #27 on: January 19, 2009, 02:56:35 PM » |
|
I hope you continue to do well.
|
|
|
|
|
Logged
|
|
|
|
|
|
|
draven
|
|
« Reply #29 on: February 03, 2009, 12:47:24 PM » |
|
creatinine is down to from 133 to 128.  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. |
|
|
|
|
Logged
|
|
|
|
|
kellyt
|
|
« Reply #30 on: February 03, 2009, 01:51:47 PM » |
|
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!!!  |
|
|
|
|
Logged
|
1993 diagnosed with glomerulonephritis. Oct 41, 2007 - Got fistula placed. Feb 13, 2008 - Activated on "the list". Nov 5, 2008 - Received living donor transplant from my sister-in-law, Etta. Nov 5, 2011 - THREE YEARS POST TRANSPLANT!  |
|
|
|
okarol
|
|
« Reply #31 on: February 03, 2009, 10:10:09 PM » |
|
draven - great to hear of the improvement - keep it up!  |
|
|
|
|
Logged
|
|
|
|
|
draven
|
|
« Reply #32 on: February 03, 2009, 10:59:59 PM » |
|
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? |
|
|
|
|
Logged
|
|
|
|
|
pelagia
|
|
« Reply #33 on: February 04, 2009, 03:31:40 AM » |
|
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. |
|
|
|
|
Logged
|
As for me, I'll borrow this thought: "Having never experienced kidney disease, I had no idea how crucial kidney function is to the rest of the body." - KD
|
|
|
|
draven
|
|
« Reply #34 on: February 12, 2009, 06:28:35 AM » |
|
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..  and my potassium level is perfect so i can finally have that Banana Split  so things are looking up. |
|
|
|
|
Logged
|
|
|
|
|
kellyt
|
|
« Reply #35 on: February 12, 2009, 08:45:12 AM » |
|
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.  |
|
|
|
|
Logged
|
1993 diagnosed with glomerulonephritis. Oct 41, 2007 - Got fistula placed. Feb 13, 2008 - Activated on "the list". Nov 5, 2008 - Received living donor transplant from my sister-in-law, Etta. Nov 5, 2011 - THREE YEARS POST TRANSPLANT! |
|
|
jessup
Sr. Member
 Offline
Gender: 
Posts: 773
Gemma - the tucker monster
|
|
« Reply #36 on: February 13, 2009, 03:21:04 PM » |
|
Great news mate Enjoy the banana split  |
|
|
|
|
Logged
|
|
|
|
|
draven
|
|
« Reply #37 on: March 11, 2009, 06:31:26 AM » |
|
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. |
|
|
|
|
Logged
|
|
|
|
|
rose1999
|
|
« Reply #38 on: March 11, 2009, 10:36:09 AM » |
|
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  ) |
|
|
|
|
Logged
|
|
|
|
|
kellyt
|
|
« Reply #39 on: March 11, 2009, 06:41:27 PM » |
|
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.
|
|
|
|
|
Logged
|
1993 diagnosed with glomerulonephritis. Oct 41, 2007 - Got fistula placed. Feb 13, 2008 - Activated on "the list". Nov 5, 2008 - Received living donor transplant from my sister-in-law, Etta. Nov 5, 2011 - THREE YEARS POST TRANSPLANT! |
|
|
|
draven
|
|
« Reply #40 on: April 01, 2009, 12:19:08 AM » |
|
Had bloods done last week my creatinine is 116 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. |
|
|
|
|
Logged
|
|
|
|
|
monrein
|
|
« Reply #41 on: April 01, 2009, 04:31:33 AM » |
|
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.
|
|
|
|
|
Logged
|
Pyelonephritis (began at 8 mos old)
Home haemo 1980-1985 (self-cannulated with 15 gauge sharps)
Cadaveric transplant 1985
New upper-arm fistula April 2008
Uldall-Cook catheter inserted May 2008
Haemo-dialysis, self care unit June 2008
(2 1/2 hours X 5 weekly)
Self-cannulated, 15 gauge blunts, buttonholes.
Living donor transplant (sister-in law Kathy) Feb. 2009
First failed kidney transplant removed Apr. 2009
Second trx doing great so far...all lab values in normal ranges
|
|
|
|
Wattle
|
|
« Reply #42 on: April 01, 2009, 04:33:46 AM » |
|
Great news about your creatinine levels. I hope your stomach settles down soon. 
|
|
|
|
|
Logged
|
PKD
June 2005 Commenced PD Dialysis
July 13th 2009 Cadaveric 5/6 Antigen Match Transplant from my Special Angel
|
|
|
|
draven
|
|
« Reply #43 on: April 01, 2009, 01:18:07 PM » |
|
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...
|
|
|
|
|
Logged
|
|
|
|
|
okarol
|
|
« Reply #44 on: April 01, 2009, 08:07:40 PM » |
|
Having the creatinine going down is great! Very happy for you!
|
|
|
|
|
Logged
|
|
|
|
|
draven
|
|
« Reply #45 on: April 08, 2009, 08:55:35 AM » |
|
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. 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  |
|
|
|
|
Logged
|
|
|
|
|
paris
|
|
« Reply #46 on: April 09, 2009, 06:38:19 PM » |
|
Glad things are doing well. Hope that creatinine keeps going down and stays down. |
|
|
|
|
Logged
|
 It's not what you gather, but what you scatter that tells what kind of life you have lived. |
|
|
|
kellyt
|
|
« Reply #47 on: April 11, 2009, 05:24:27 PM » |
|
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! |
|
|
|
|
Logged
|
1993 diagnosed with glomerulonephritis. Oct 41, 2007 - Got fistula placed. Feb 13, 2008 - Activated on "the list". Nov 5, 2008 - Received living donor transplant from my sister-in-law, Etta. Nov 5, 2011 - THREE YEARS POST TRANSPLANT! |
|
|
|
draven
|
|
« Reply #48 on: April 13, 2009, 01:37:45 AM » |
|
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
|
|
|
|
|
Logged
|
|
|
|
|
I Hate Dialysis Message Board
Author
