-Lady Noir-
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Where's your will to be weird?
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« on: April 02, 2011, 01:45:31 PM » |
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Is anybody still taking Allopurinol after their transplant? Is anyone been taken off it after their transplant?
Mikes got an extremely sore knee today, randomly. Hasn't done any exersize or heavy lifting. He got taken off his Allopurinol the day after his transplant. Could this be gout?
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Expose yourself to your deepest fear. After that, fear has no power, and the fear of freedom shrinks and vanishes. You are free
..Nik..
Fiancee to Mike
Mikes 'history'....
Born September 12 1983
Seizure July 2003 [Unrelated to kidney]
Diagnosed with 'Polycystic Kidney Disease' July 2003 (Wrong diagnosis)
Diagnosed with IgA Glomerulonephritis April 2004
On active transplant waiting list 2006
Hyperparathyroidism developed gradually
Parathyroidectomy May 2009 (Affected kidney function)
Hospitalized for hyperkalemia June 2009
Catheter inserted June 2009
Started CAPD June 2009
Stared APD September 2009
ABO Incompatible transplant 01 December 2010
Donor = Mikes father Greg
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Jie
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« Reply #1 on: April 02, 2011, 10:21:25 PM » |
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I took it before transplant and was taken off it after my transplant. I have not had gout since taking it and after my transplant.
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Chris
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« Reply #2 on: April 02, 2011, 11:09:28 PM » |
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That does not sound vagly familiar from any of the things I was on post transplant, post OR.
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Diabetes - age 7
Neuropathy in legs age 10
Eye impairments and blindness in one eye began in 95, major one during visit to the Indy 500 race of that year
-glaucoma and surgery for that
-cataract surgery twice on same eye (2000 - 2002). another one growing in good eye
- vitrectomy in good eye post tx November 2003, totally blind for 4 months due to complications with meds and infection
Diagnosed with ESRD June 29, 1999
1st Dialysis - July 4, 1999
Last Dialysis - December 2, 2000
Kidney and Pancreas Transplant - December 3, 2000
Cataract Surgery on good eye - June 24, 2009
Knee Surgery 2010
2011/2012 in process of getting a guide dog
Guide Dog Training begins July 2, 2012 in NY
Guide Dog by end of July 2012
Next eye surgery late 2012 or 2013 if I feel like it
Home with Guide dog - July 27, 2012
Knee Surgery #2 - Oct 15, 2012
Eye Surgery - Nov 2012
Lifes Adventures - Priceless
No two day's are the same, are they?
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-Lady Noir-
Full Member
Offline
Gender:
Posts: 416
Where's your will to be weird?
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« Reply #3 on: April 03, 2011, 01:21:00 AM » |
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True i heard some bad things about the drug Simvastatin, for high cholestrol.. hes also on that. Apparently that can cause sore joints as a rare side affect.
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Expose yourself to your deepest fear. After that, fear has no power, and the fear of freedom shrinks and vanishes. You are free
..Nik..
Fiancee to Mike
Mikes 'history'....
Born September 12 1983
Seizure July 2003 [Unrelated to kidney]
Diagnosed with 'Polycystic Kidney Disease' July 2003 (Wrong diagnosis)
Diagnosed with IgA Glomerulonephritis April 2004
On active transplant waiting list 2006
Hyperparathyroidism developed gradually
Parathyroidectomy May 2009 (Affected kidney function)
Hospitalized for hyperkalemia June 2009
Catheter inserted June 2009
Started CAPD June 2009
Stared APD September 2009
ABO Incompatible transplant 01 December 2010
Donor = Mikes father Greg
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Sugarlump
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« Reply #4 on: April 03, 2011, 01:45:57 AM » |
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Not that rare side effect either! I took it for 2 weeks terrible joint pains stopped and was fine. Also can cause kidney failure!!! A lot of people in England refuse to take it. I settled for taking garlic capsules instead no side effects from that!
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10 years of half a life 3 years HD 1st transplant Feb 08 failed after 3 months Back to HD 2nd transplant Dec 10 failed after 11 months Difficult times with a femoral line and catching MSSA (Thank you Plymouth Hospital) Back on HD (not easy to do that third time around) Fighting hard (two years on) to do home HD ... watch this space! Oh and I am am getting married 1/08/15 to my wonderful partner Drew!!! The power of optimism over common sense  |
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RichardMEL
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« Reply #5 on: April 03, 2011, 11:41:41 PM » |
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Yes, I'm still on alopurinol post tx. I thought it was odd that I would still be on it..... I might ask about that at next clinic.
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 3/1993: Diagnosed with Kidney Failure (FSGS) 25/7/2006: Started hemo 3x/week 5 hour sessions  27/11/2010: Cadaveric kidney transplant from my wonderful donor!!! "Danny" currently settling in and working better every day!!! BE POSITIVE * BE INFORMED * BE PROACTIVE * BE IN CONTROL * LIVE LIFE! |
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bette1
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My dear daughter
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« Reply #6 on: April 04, 2011, 09:23:26 AM » |
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I was on allopurinol for gout post transplant. Gout is caused by uric acid and the thinking may be that now that he has a working kidney his uric acid would go down and also the gout symptoms.
He may want to go to a specialist to look at his knee. I was incorrectly diagnosed with gout. I had bone damage to my knee. It could be any number of joint problems. Check with your doc.
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Diagnosed with FSGS April of 1987
First Dialysis 11/87 - CAPD
Transplant #1 10/13/94
Second round of Dialysis stated 9/06 - In Center Hemo
Transplant #2 5/24/10
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-Lady Noir-
Full Member
Offline
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Posts: 416
Where's your will to be weird?
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« Reply #7 on: April 04, 2011, 02:33:23 PM » |
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Not that rare side effect either! I took it for 2 weeks terrible joint pains stopped and was fine. Also can cause kidney failure!!! A lot of people in England refuse to take it. I settled for taking garlic capsules instead no side effects from that!
 Oh my! Thats crazy.. can cause kidney failure?! I was annoyed that they chucked him on any drug for cholesterol without any sort of advice or anything.  |
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Logged
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Expose yourself to your deepest fear. After that, fear has no power, and the fear of freedom shrinks and vanishes. You are free
..Nik..
Fiancee to Mike
Mikes 'history'....
Born September 12 1983
Seizure July 2003 [Unrelated to kidney]
Diagnosed with 'Polycystic Kidney Disease' July 2003 (Wrong diagnosis)
Diagnosed with IgA Glomerulonephritis April 2004
On active transplant waiting list 2006
Hyperparathyroidism developed gradually
Parathyroidectomy May 2009 (Affected kidney function)
Hospitalized for hyperkalemia June 2009
Catheter inserted June 2009
Started CAPD June 2009
Stared APD September 2009
ABO Incompatible transplant 01 December 2010
Donor = Mikes father Greg
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RichardMEL
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« Reply #8 on: April 04, 2011, 08:57:38 PM » |
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I know this is going OT, but I've so far avoided the cholesterol stuff, but it is VERY common since the post-tx cholesterol shoots up something shocking - I went from 4.3 to 6.2. Last check I was down to 6.0 which is real borderline. They muttered about putting me on liptor or something, but let it go for now - I think the bigger priority is to get my PTH back in normal range first then worry about the cholesterol.
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3/1993: Diagnosed with Kidney Failure (FSGS) 25/7/2006: Started hemo 3x/week 5 hour sessions 27/11/2010: Cadaveric kidney transplant from my wonderful donor!!! "Danny" currently settling in and working better every day!!! BE POSITIVE * BE INFORMED * BE PROACTIVE * BE IN CONTROL * LIVE LIFE!
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Sugarlump
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« Reply #9 on: April 05, 2011, 01:22:13 AM » |
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Avoid this statin like the plague. I've told you what to do ( a million times)  GO AND BUY SOME GARLIC CAPSULES BETTER STILL I'LL POST YOU SOME men!!!!!  |
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10 years of half a life 3 years HD 1st transplant Feb 08 failed after 3 months Back to HD 2nd transplant Dec 10 failed after 11 months Difficult times with a femoral line and catching MSSA (Thank you Plymouth Hospital) Back on HD (not easy to do that third time around) Fighting hard (two years on) to do home HD ... watch this space! Oh and I am am getting married 1/08/15 to my wonderful partner Drew!!! The power of optimism over common sense |
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Sugarlump
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« Reply #10 on: April 05, 2011, 01:33:39 AM » |
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Not that rare side effect either! I took it for 2 weeks terrible joint pains stopped and was fine. Also can cause kidney failure!!! A lot of people in England refuse to take it. I settled for taking garlic capsules instead no side effects from that!
Oh my! Thats crazy.. can cause kidney failure?! I was annoyed that they chucked him on any drug for cholesterol without any sort of advice or anything.
I've learnt the hard way to question any medicine they want to put me on. Statins are a definite no-no. Can generally control cholesterol with garlic capsules and watching saturated fat intake. I'm trying to educate RM about the powers of garlic. They used this for hundreds of years! |
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10 years of half a life 3 years HD 1st transplant Feb 08 failed after 3 months Back to HD 2nd transplant Dec 10 failed after 11 months Difficult times with a femoral line and catching MSSA (Thank you Plymouth Hospital) Back on HD (not easy to do that third time around) Fighting hard (two years on) to do home HD ... watch this space! Oh and I am am getting married 1/08/15 to my wonderful partner Drew!!! The power of optimism over common sense |
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RichardMEL
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« Reply #11 on: April 05, 2011, 01:49:14 AM » |
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I prefer satin myself......  |
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3/1993: Diagnosed with Kidney Failure (FSGS) 25/7/2006: Started hemo 3x/week 5 hour sessions 27/11/2010: Cadaveric kidney transplant from my wonderful donor!!! "Danny" currently settling in and working better every day!!! BE POSITIVE * BE INFORMED * BE PROACTIVE * BE IN CONTROL * LIVE LIFE!
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Sugarlump
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« Reply #12 on: April 05, 2011, 02:30:38 AM » |
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I know. That might make your blood pressure go up  as well! |
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« Last Edit: April 05, 2011, 03:32:41 AM by Sugarlump »
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10 years of half a life 3 years HD 1st transplant Feb 08 failed after 3 months Back to HD 2nd transplant Dec 10 failed after 11 months Difficult times with a femoral line and catching MSSA (Thank you Plymouth Hospital) Back on HD (not easy to do that third time around) Fighting hard (two years on) to do home HD ... watch this space! Oh and I am am getting married 1/08/15 to my wonderful partner Drew!!! The power of optimism over common sense |
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-Lady Noir-
Full Member
Offline
Gender:
Posts: 416
Where's your will to be weird?
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« Reply #13 on: April 05, 2011, 01:00:41 PM » |
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I know this is going OT, but I've so far avoided the cholesterol stuff, but it is VERY common since the post-tx cholesterol shoots up something shocking - I went from 4.3 to 6.2. Last check I was down to 6.0 which is real borderline. They muttered about putting me on liptor or something, but let it go for now - I think the bigger priority is to get my PTH back in normal range first then worry about the cholesterol.
Mikes cholesterol was like, 5.4 or something.. is that even high?? |
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Logged
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Expose yourself to your deepest fear. After that, fear has no power, and the fear of freedom shrinks and vanishes. You are free
..Nik..
Fiancee to Mike
Mikes 'history'....
Born September 12 1983
Seizure July 2003 [Unrelated to kidney]
Diagnosed with 'Polycystic Kidney Disease' July 2003 (Wrong diagnosis)
Diagnosed with IgA Glomerulonephritis April 2004
On active transplant waiting list 2006
Hyperparathyroidism developed gradually
Parathyroidectomy May 2009 (Affected kidney function)
Hospitalized for hyperkalemia June 2009
Catheter inserted June 2009
Started CAPD June 2009
Stared APD September 2009
ABO Incompatible transplant 01 December 2010
Donor = Mikes father Greg
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Sugarlump
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« Reply #14 on: April 05, 2011, 01:14:50 PM » |
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No 5.5 and under is fine,  (I'll answer for Rich as he's probably still in bed!) |
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10 years of half a life 3 years HD 1st transplant Feb 08 failed after 3 months Back to HD 2nd transplant Dec 10 failed after 11 months Difficult times with a femoral line and catching MSSA (Thank you Plymouth Hospital) Back on HD (not easy to do that third time around) Fighting hard (two years on) to do home HD ... watch this space! Oh and I am am getting married 1/08/15 to my wonderful partner Drew!!! The power of optimism over common sense |
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RichardMEL
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« Reply #15 on: April 07, 2011, 06:46:20 AM » |
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5.4 is good. I'm jealous!! (note to self: stop eating chocolate might help!!! ). I always thought under 6 was "OK" but definitely under 5-5.5 is considered great. Well done Mike. |
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3/1993: Diagnosed with Kidney Failure (FSGS) 25/7/2006: Started hemo 3x/week 5 hour sessions 27/11/2010: Cadaveric kidney transplant from my wonderful donor!!! "Danny" currently settling in and working better every day!!! BE POSITIVE * BE INFORMED * BE PROACTIVE * BE IN CONTROL * LIVE LIFE!
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Sugarlump
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« Reply #16 on: April 09, 2011, 10:28:57 AM » |
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I don't think chocolate is necessary the culprit here Top ten things to avoid include EGGS*CAVIAR*LIVER PATE*SHRIMP*BUTTER*OILY FISH*CHEESE*PROCESSED MEATS*ALL SHELLFISH* FAST FOOD JUNK* How much caviar have you eaten recently???  |
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Logged
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10 years of half a life 3 years HD 1st transplant Feb 08 failed after 3 months Back to HD 2nd transplant Dec 10 failed after 11 months Difficult times with a femoral line and catching MSSA (Thank you Plymouth Hospital) Back on HD (not easy to do that third time around) Fighting hard (two years on) to do home HD ... watch this space! Oh and I am am getting married 1/08/15 to my wonderful partner Drew!!! The power of optimism over common sense |
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Chris
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« Reply #17 on: April 09, 2011, 10:25:11 PM » |
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Reply to wrong thread, whoops!
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« Last Edit: April 09, 2011, 10:26:43 PM by Chris »
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Diabetes - age 7
Neuropathy in legs age 10
Eye impairments and blindness in one eye began in 95, major one during visit to the Indy 500 race of that year
-glaucoma and surgery for that
-cataract surgery twice on same eye (2000 - 2002). another one growing in good eye
- vitrectomy in good eye post tx November 2003, totally blind for 4 months due to complications with meds and infection
Diagnosed with ESRD June 29, 1999
1st Dialysis - July 4, 1999
Last Dialysis - December 2, 2000
Kidney and Pancreas Transplant - December 3, 2000
Cataract Surgery on good eye - June 24, 2009
Knee Surgery 2010
2011/2012 in process of getting a guide dog
Guide Dog Training begins July 2, 2012 in NY
Guide Dog by end of July 2012
Next eye surgery late 2012 or 2013 if I feel like it
Home with Guide dog - July 27, 2012
Knee Surgery #2 - Oct 15, 2012
Eye Surgery - Nov 2012
Lifes Adventures - Priceless
No two day's are the same, are they?
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RichardMEL
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« Reply #18 on: April 11, 2011, 12:18:30 AM » |
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3/1993: Diagnosed with Kidney Failure (FSGS) 25/7/2006: Started hemo 3x/week 5 hour sessions 27/11/2010: Cadaveric kidney transplant from my wonderful donor!!! "Danny" currently settling in and working better every day!!! BE POSITIVE * BE INFORMED * BE PROACTIVE * BE IN CONTROL * LIVE LIFE!
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Sugarlump
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« Reply #19 on: April 11, 2011, 04:30:27 AM » |
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Only in England next summer |
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10 years of half a life 3 years HD 1st transplant Feb 08 failed after 3 months Back to HD 2nd transplant Dec 10 failed after 11 months Difficult times with a femoral line and catching MSSA (Thank you Plymouth Hospital) Back on HD (not easy to do that third time around) Fighting hard (two years on) to do home HD ... watch this space! Oh and I am am getting married 1/08/15 to my wonderful partner Drew!!! The power of optimism over common sense |
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Elvis
Newbie
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Posts: 4
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« Reply #20 on: April 11, 2011, 10:21:29 AM » |
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I was taking Allopurinal before my TX for the gout as a preventative medicine. Worked great! Now after my last hospital bout with an infection the DOC put me back on it. I'm sure every case is different. My problem turned out to be Necrosis of by Bones around the knee. What that means is the blood supply was deminished or compromised at some time after the TX. The DOC put me on Nefedipine to try and get more blood to the bones. You may want to talk to your Nephrologist about that. I'm still having kne and ankle pain, but I just started back on the Allopurinal. Good luck to you. Stay on top of this and ask lots of questions of your doctors.
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-Lady Noir-
Full Member
Offline
Gender:
Posts: 416
Where's your will to be weird?
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« Reply #21 on: April 12, 2011, 02:04:42 PM » |
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Thanks for that! And welcome to IHD |
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Expose yourself to your deepest fear. After that, fear has no power, and the fear of freedom shrinks and vanishes. You are free
..Nik..
Fiancee to Mike
Mikes 'history'....
Born September 12 1983
Seizure July 2003 [Unrelated to kidney]
Diagnosed with 'Polycystic Kidney Disease' July 2003 (Wrong diagnosis)
Diagnosed with IgA Glomerulonephritis April 2004
On active transplant waiting list 2006
Hyperparathyroidism developed gradually
Parathyroidectomy May 2009 (Affected kidney function)
Hospitalized for hyperkalemia June 2009
Catheter inserted June 2009
Started CAPD June 2009
Stared APD September 2009
ABO Incompatible transplant 01 December 2010
Donor = Mikes father Greg
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paris
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« Reply #22 on: April 15, 2011, 06:39:09 PM » |
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I'm still on it post transplant. I still get some pain in ankles but nothing like before. I couldn't even walk before taking the drug.
Regarding post transplant drugs and side effects - prograf can cause kidney failure. That is why the keep such a close watch when you are on it. I think everything has a label that says "may cause kidney failure" LOL. My transplant team is very good about explaining every drug and answering all my questions.
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It's not what you gather, but what you scatter that tells what kind of life you have lived. |
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