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opnwhl4
Forum Moderator


Date Joined Dec 2008
Total Posts : 4961
   Posted 9/27/2013 8:00 PM (GMT -7)   
Hi all-

Just wanted to check and see how everyone is doing. Since there isn't a lot of posts here thought we could get some communication going.

I am currently free of stones and visiting my daughter at college.

Take care,
Bill
opnwhl4
Moderator: GERD/Heartburn, Kidney disease

Nissen 6/06 and 5/09
#3 8/24/11

Gizzy'n me
Veteran Member


Date Joined Jun 2013
Total Posts : 1870
   Posted 10/13/2013 7:58 AM (GMT -7)   
Hello Bill .......
 
   Good news on the kidney stones.
 
   I have gotten quite used to the nefrostomy tube on my right kidney. The nurses now know exactly how to replace the dressing weekly, type of tape and cleaning solution and skin prep. It makes such a difference in daily comfort - especially sleeping or laying on my back - when it's done right. The tube to the kidney needs to be replaced every 4-months or so ... and it's a piece of cake ... no sedation ... done quickly in interventional radialogy.
 
   The kidney stent, on the left side is another matter. No pain and no daily or weekly maintenance. But replacement, every 4-months, is not nice! It needs to be done right now in fact.
 
   Hope you had a nice visit with your daughter.
 
 
Initial Dx of PCa in 2003/2004
Radiation (5x5wks) & Brachytherapy (96 seeds) in 2004
Low PSA for 6-years then Casodex briefly
Lupron from 2011 to current
Zytiga 2012 (5-months) - PSA increase
Prednisone & Xgeva from 2012
Taxotere - August 2012 (30-weeks) - PSA from 54+ to 12+
No chemo (8-wks) - PSA to over 23
Xtandi - June to Aug - 2013 - PSA increase
Jevtana + Lexapro - from October 2013

opnwhl4
Forum Moderator


Date Joined Dec 2008
Total Posts : 4961
   Posted 10/15/2013 11:07 PM (GMT -7)   
Gizzy'n me

Thanks, I did have a very enjoyable time visiting her. She will be coming home for the weekend this week. 1st time since Aug. 15th. Very excited to have her home again even for the weekend.

Very good to hear they have a properly laid out plan for replacing the tube. I feel for you about the stent. My body doesn't play well with those. I haven't been able to keep 1 in for more than 4 days without being hospitalized. I have an allergy to certain tape adhesives as well, so I understand about having the correct tape being used.

My mother has to have a stent in place all the time as well and she does extremely well with hers at least until the week or so before it needs replaced.

Take care,
Bill
opnwhl4
Moderator: GERD/Heartburn, Kidney disease

Nissen 6/06 and 5/09
#3 8/24/11

Gizzy'n me
Veteran Member


Date Joined Jun 2013
Total Posts : 1870
   Posted 10/26/2013 7:41 AM (GMT -7)   
   My nefrostomy bag is, for some reason, filling up quicker than normal lately. I'm on week #4 of my newest injected chemo. The PSA, in the first three weeks, dropped by 22% .... so this newest chemo is working so far.
   Is it remotely possible ..... that my kidneys (or at least the right side with the nefrostomy tube) is improving - considering there is more urine flow! A question for the Urologist - and likely only answerable after some tests ... but "the glass is half full"!
   I have a scheduled change of the left side kidney stent in 12-days ... and am going to try this with sedation only this time .... no anesthetic! The nefrostomy tube needs to be changed - but that's virtually painless and a quick procedure.
   Will update ..... after both!
 
Rob and Gizzy
 
Initial Dx of PCa in 2003/2004
Radiation (5x5wks) & Brachytherapy (96 seeds) in 2004
Low PSA for 6-years then Casodex briefly
Lupron from 2011 to current
Zytiga 2012 (5-months) - PSA increase
Prednisone & Xgeva from 2012
Taxotere - August 2012 (30-weeks) - PSA from 54+ to 12+
No chemo (8-wks) - PSA to over 23
Xtandi - June to Aug - 2013 - PSA increase
Jevtana + Lexapro - from October 2013

opnwhl4
Forum Moderator


Date Joined Dec 2008
Total Posts : 4961
   Posted 10/30/2013 11:27 PM (GMT -7)   
I had a stent replaced with just sedation and though I don't remember it I gave them a very hard time. I woke up with the yellow/orange stuff all over my hands. The nurse said I kept swatting away his hand when he was cleaning down there.

Seems to me you are having improvement since you are having more flow. Good to hear.

Take care,
Bill
opnwhl4
Moderator: GERD/Heartburn, Kidney disease

Nissen 6/06 and 5/09
#3 8/24/11

Gizzy'n me
Veteran Member


Date Joined Jun 2013
Total Posts : 1870
   Posted 11/9/2013 8:45 AM (GMT -7)   
Hello Bill .........
 
   The stent replacement is over - for now! They used what was referred to as "Twilight" for a sedative or anesthesia. They did require me to stay overnight though because no one was staying with me overnight at home.
   It worked OK ..... the stent surgery was nearly without pain ... and none at the time of surgery! The worst part of it was waiting 3-1/2 hours dressed and ready to go .... for a release from the hospital from the overnight stay!
 
   Peace and wellness
 
Rob and Gizzy
 
Initial Dx of PCa in 2003/2004
Radiation (5x5wks) & Brachytherapy (96 seeds) in 2004
Low PSA for 6-years then Casodex briefly
Lupron from 2011 to current
Zytiga 2012 (5-months) - PSA increase
Prednisone & Xgeva from 2012
Taxotere - August 2012 (30-weeks) - PSA from 54+ to 12+
No chemo (8-wks) - PSA to over 23
Xtandi - June to Aug - 2013 - PSA increase
Jevtana + Lexapro - from October 2013

opnwhl4
Forum Moderator


Date Joined Dec 2008
Total Posts : 4961
   Posted 11/9/2013 12:07 PM (GMT -7)   
Good to hear all went well. I sure feel for you. I hate those stents and so does my body. But I guess if I was in your situation I would have to learn to deal with them.

The twilight sedation was what I had when I gave them such a hard time. This was during a time when I had a lot of surgeries and sedation procedures done and think they just didn't give me enough meds. I am a chronic pain patient also and it usually takes more for me than most people.

Take care,
Bill
opnwhl4
Moderator: GERD/Heartburn, Kidney disease

Nissen 6/06 and 5/09
#3 8/24/11

Gizzy'n me
Veteran Member


Date Joined Jun 2013
Total Posts : 1870
   Posted 12/2/2013 6:15 PM (GMT -7)   
Hello Bill .......
 
   I just thought a little recent personal life experience might be of some interest to you and perhaps a few readers.
   As you might know, I have been in the hospital twice before with kidney failure or symtoms of kidney failure ... in 2011 and in 2012. The second time, my creatine levels were thru the roof, and that alone kept me in the hospital for over a week.
   Well, late one night last week, I had maybe 18 ounces od this great moca iced coffee ... and no water that night! My chemo side effects (for my advanced prostate cancer) have included diarrea ... and I was dealing with that just when my water intake was low ... and caffeine intake was high!
   It wasn't long before I started to get this familiar light-headed slightly spaced-out feeling. My fear was the kidneys! So, for the past 5-days or so, my caffeine has been limited to one large coffee a day ... period!!!
   My water intake has increased using cold spring water - just a common variety - 40 to 60 ounces daily + a few other non-caffeine and non-alcoholic liquids - for 60 to 80 ounces daily total - n.i.c. the morning coffee!
   Like magic ..... by yesterday, the light-headed feeling is gone. Part of it could be the diarrea ... but I'm convinced the kidneys were screaming "give me some clean water"!!@!!!
 
   Hope this is some form of encourgement for a least one person ..... besides me~!!
 
Peace and wellness
 
Rob and Gizzy
 
 
Initial Dx of PCa in 2003/2004
Radiation (5x5wks) & Brachytherapy (96 seeds) in 2004
Low PSA for 6-years then Casodex briefly
Lupron from 2011 to current
Zytiga 2012 (5-months) - PSA increase
Prednisone & Xgeva from 2012
Taxotere - August 2012 (30-weeks) - PSA from 54+ to 12+
No chemo (8-wks) - PSA to over 23
Xtandi - June to Aug - 2013 - PSA increase
Jevtana + Lexapro - from October 2013

opnwhl4
Forum Moderator


Date Joined Dec 2008
Total Posts : 4961
   Posted 12/4/2013 12:47 PM (GMT -7)   
Rob-


That makes sense to me. I deal with chronic D myself and am terrible at staying hydrated. I know the feeling you got and have done the same thing and gotten the same results.
My biggest issue with my kidney stones is to sy=tay away from sports drinks, tea, and dark sodas. Since I coach a travel softball team it's really hard to stay aay from the sports drinks, since everyone has them and the added sugar and such is a plus when you don't et a chance to eat much during the day.

Glad to hear it has been working well for you.

Take care,
Bill
opnwhl4
Moderator: GERD/Heartburn, Kidney disease

Nissen 6/06 and 5/09
#3 8/24/11
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