Guest guest Posted September 24, 2009 Report Share Posted September 24, 2009 Good Luck Rhonda! You have our heartfelt support. Let us know if you need any information to make your life easier:o) GERDS and chronic C. SCD 18 mths > > Meanwhile it appears that the cysts that were found in my kidneys and liver > a few years ago have started to actually effect my kidney function, so I'm > even more tired than usual, etc. etc. My one happy thought is that I pee > often and pale instead of having difficulty peeing and it being dark and > bloody. I have an appointment to see my kidney specialist in a few weeks, > I'm getting my ultrasound scheduled, just doing what I have to. I haven't > spent much time at the computer. Between getting meals cooked, shopping > and doctor appointments I'm exhausted and have been napping on the couch > with the stove timer set. I am hopeful that I'm experiencing a combination > of the kidney disease and the 3 month mark of major die-off. Nothing to do > except keep on keepin' on and we'll see. Meanwhile I've got to prepare for > 's hospital stay. Hopefully the nurses will allow me to use their > fridge for his yogurt. If not, I'll be hauling in a mini fridge for his > room! LOL. > > Rhonda UC, PKD > son, 16, CD (17 on Oct 4th! omg) > SCD 3 months > > >Rhonda, > >I know this is OT for this thread, but how is ? I haven't seen you > >post for a while and you were having to make some decisions about > >medications last time I saw one. Just wondering! (You were so helpful to > >me my first week here that I always look to see if you have posted.) > > > >Liz > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 24, 2009 Report Share Posted September 24, 2009 Good Luck Rhonda! You have our heartfelt support. Let us know if you need any information to make your life easier:o) GERDS and chronic C. SCD 18 mths > > Meanwhile it appears that the cysts that were found in my kidneys and liver > a few years ago have started to actually effect my kidney function, so I'm > even more tired than usual, etc. etc. My one happy thought is that I pee > often and pale instead of having difficulty peeing and it being dark and > bloody. I have an appointment to see my kidney specialist in a few weeks, > I'm getting my ultrasound scheduled, just doing what I have to. I haven't > spent much time at the computer. Between getting meals cooked, shopping > and doctor appointments I'm exhausted and have been napping on the couch > with the stove timer set. I am hopeful that I'm experiencing a combination > of the kidney disease and the 3 month mark of major die-off. Nothing to do > except keep on keepin' on and we'll see. Meanwhile I've got to prepare for > 's hospital stay. Hopefully the nurses will allow me to use their > fridge for his yogurt. If not, I'll be hauling in a mini fridge for his > room! LOL. > > Rhonda UC, PKD > son, 16, CD (17 on Oct 4th! omg) > SCD 3 months > > >Rhonda, > >I know this is OT for this thread, but how is ? I haven't seen you > >post for a while and you were having to make some decisions about > >medications last time I saw one. Just wondering! (You were so helpful to > >me my first week here that I always look to see if you have posted.) > > > >Liz > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 24, 2009 Report Share Posted September 24, 2009 Good Luck Rhonda! You have our heartfelt support. Let us know if you need any information to make your life easier:o) GERDS and chronic C. SCD 18 mths > > Meanwhile it appears that the cysts that were found in my kidneys and liver > a few years ago have started to actually effect my kidney function, so I'm > even more tired than usual, etc. etc. My one happy thought is that I pee > often and pale instead of having difficulty peeing and it being dark and > bloody. I have an appointment to see my kidney specialist in a few weeks, > I'm getting my ultrasound scheduled, just doing what I have to. I haven't > spent much time at the computer. Between getting meals cooked, shopping > and doctor appointments I'm exhausted and have been napping on the couch > with the stove timer set. I am hopeful that I'm experiencing a combination > of the kidney disease and the 3 month mark of major die-off. Nothing to do > except keep on keepin' on and we'll see. Meanwhile I've got to prepare for > 's hospital stay. Hopefully the nurses will allow me to use their > fridge for his yogurt. If not, I'll be hauling in a mini fridge for his > room! LOL. > > Rhonda UC, PKD > son, 16, CD (17 on Oct 4th! omg) > SCD 3 months > > >Rhonda, > >I know this is OT for this thread, but how is ? I haven't seen you > >post for a while and you were having to make some decisions about > >medications last time I saw one. Just wondering! (You were so helpful to > >me my first week here that I always look to see if you have posted.) > > > >Liz > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 24, 2009 Report Share Posted September 24, 2009 Rhonda, Just want to let you know that I'm glad to hear how well is doing. And that I'm keeping fingers crossed for your situation. — Marilyn New Orleans, Louisiana, USA Undiagnosed IBS since 1976, SCD since 2001 Darn Good SCD Cook No Human Children Shadow & Sunny Longhair Dachshund Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 24, 2009 Report Share Posted September 24, 2009 Rhonda, Just want to let you know that I'm glad to hear how well is doing. And that I'm keeping fingers crossed for your situation. — Marilyn New Orleans, Louisiana, USA Undiagnosed IBS since 1976, SCD since 2001 Darn Good SCD Cook No Human Children Shadow & Sunny Longhair Dachshund Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 24, 2009 Report Share Posted September 24, 2009 Rhonda, This is great news about , and I wish for you- a speedy recover too. PJ > > Hi Liz! > > After our last GI appointment when the doc wanted him on Humira I called > and told him we would hold off for a month and we could talk again > then. Yesterday we went for that " one month later " appointment and after > seeing that had gained 9 pounds in the 4 weeks was much more positive > about the diet. nudged me to ask his doc about LDN and he shocked me > by saying he would be happy to look into it and wants information on the PA > studies. He also wants to contact the PA studies to see if can > participate from CA. Although we were considering putting him in the > trial, the 8 cross country round trip flights in 4 months priced us out of > the notion. 's fistula (with 2 openings) remains pretty large with > lots of drainage. Our doc heard both and I when we expressed our > fervent desire to NOT go that direction. While he checks into LDN he is > going to put in the hospital and have a pic line put in so we can > give him antibiotics for the fistula from home (and not have them go > through his GI tract.) He has to go to the hospital for a few days to get > all set up and for me to learn how to care for it. I'll be making lots of > food ahead of time and bringing it to him at the hospital. I'm thrilled > that both our general practitioner and 's GI specialist are supportive > of the diet now! They both have remarked that he looks " healthy " and I > agree. > > Meanwhile it appears that the cysts that were found in my kidneys and liver > a few years ago have started to actually effect my kidney function, so I'm > even more tired than usual, etc. etc. My one happy thought is that I pee > often and pale instead of having difficulty peeing and it being dark and > bloody. I have an appointment to see my kidney specialist in a few weeks, > I'm getting my ultrasound scheduled, just doing what I have to. I haven't > spent much time at the computer. Between getting meals cooked, shopping > and doctor appointments I'm exhausted and have been napping on the couch > with the stove timer set. I am hopeful that I'm experiencing a combination > of the kidney disease and the 3 month mark of major die-off. Nothing to do > except keep on keepin' on and we'll see. Meanwhile I've got to prepare for > 's hospital stay. Hopefully the nurses will allow me to use their > fridge for his yogurt. If not, I'll be hauling in a mini fridge for his > room! LOL. > > Rhonda UC, PKD > son, 16, CD (17 on Oct 4th! omg) > SCD 3 months > > >Rhonda, > >I know this is OT for this thread, but how is ? I haven't seen you > >post for a while and you were having to make some decisions about > >medications last time I saw one. Just wondering! (You were so helpful to > >me my first week here that I always look to see if you have posted.) > > > >Liz > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 24, 2009 Report Share Posted September 24, 2009 Rhonda, This is great news about , and I wish for you- a speedy recover too. PJ > > Hi Liz! > > After our last GI appointment when the doc wanted him on Humira I called > and told him we would hold off for a month and we could talk again > then. Yesterday we went for that " one month later " appointment and after > seeing that had gained 9 pounds in the 4 weeks was much more positive > about the diet. nudged me to ask his doc about LDN and he shocked me > by saying he would be happy to look into it and wants information on the PA > studies. He also wants to contact the PA studies to see if can > participate from CA. Although we were considering putting him in the > trial, the 8 cross country round trip flights in 4 months priced us out of > the notion. 's fistula (with 2 openings) remains pretty large with > lots of drainage. Our doc heard both and I when we expressed our > fervent desire to NOT go that direction. While he checks into LDN he is > going to put in the hospital and have a pic line put in so we can > give him antibiotics for the fistula from home (and not have them go > through his GI tract.) He has to go to the hospital for a few days to get > all set up and for me to learn how to care for it. I'll be making lots of > food ahead of time and bringing it to him at the hospital. I'm thrilled > that both our general practitioner and 's GI specialist are supportive > of the diet now! They both have remarked that he looks " healthy " and I > agree. > > Meanwhile it appears that the cysts that were found in my kidneys and liver > a few years ago have started to actually effect my kidney function, so I'm > even more tired than usual, etc. etc. My one happy thought is that I pee > often and pale instead of having difficulty peeing and it being dark and > bloody. I have an appointment to see my kidney specialist in a few weeks, > I'm getting my ultrasound scheduled, just doing what I have to. I haven't > spent much time at the computer. Between getting meals cooked, shopping > and doctor appointments I'm exhausted and have been napping on the couch > with the stove timer set. I am hopeful that I'm experiencing a combination > of the kidney disease and the 3 month mark of major die-off. Nothing to do > except keep on keepin' on and we'll see. Meanwhile I've got to prepare for > 's hospital stay. Hopefully the nurses will allow me to use their > fridge for his yogurt. If not, I'll be hauling in a mini fridge for his > room! LOL. > > Rhonda UC, PKD > son, 16, CD (17 on Oct 4th! omg) > SCD 3 months > > >Rhonda, > >I know this is OT for this thread, but how is ? I haven't seen you > >post for a while and you were having to make some decisions about > >medications last time I saw one. Just wondering! (You were so helpful to > >me my first week here that I always look to see if you have posted.) > > > >Liz > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 24, 2009 Report Share Posted September 24, 2009 Rhonda, This is great news about , and I wish for you- a speedy recover too. PJ > > Hi Liz! > > After our last GI appointment when the doc wanted him on Humira I called > and told him we would hold off for a month and we could talk again > then. Yesterday we went for that " one month later " appointment and after > seeing that had gained 9 pounds in the 4 weeks was much more positive > about the diet. nudged me to ask his doc about LDN and he shocked me > by saying he would be happy to look into it and wants information on the PA > studies. He also wants to contact the PA studies to see if can > participate from CA. Although we were considering putting him in the > trial, the 8 cross country round trip flights in 4 months priced us out of > the notion. 's fistula (with 2 openings) remains pretty large with > lots of drainage. Our doc heard both and I when we expressed our > fervent desire to NOT go that direction. While he checks into LDN he is > going to put in the hospital and have a pic line put in so we can > give him antibiotics for the fistula from home (and not have them go > through his GI tract.) He has to go to the hospital for a few days to get > all set up and for me to learn how to care for it. I'll be making lots of > food ahead of time and bringing it to him at the hospital. I'm thrilled > that both our general practitioner and 's GI specialist are supportive > of the diet now! They both have remarked that he looks " healthy " and I > agree. > > Meanwhile it appears that the cysts that were found in my kidneys and liver > a few years ago have started to actually effect my kidney function, so I'm > even more tired than usual, etc. etc. My one happy thought is that I pee > often and pale instead of having difficulty peeing and it being dark and > bloody. I have an appointment to see my kidney specialist in a few weeks, > I'm getting my ultrasound scheduled, just doing what I have to. I haven't > spent much time at the computer. Between getting meals cooked, shopping > and doctor appointments I'm exhausted and have been napping on the couch > with the stove timer set. I am hopeful that I'm experiencing a combination > of the kidney disease and the 3 month mark of major die-off. Nothing to do > except keep on keepin' on and we'll see. Meanwhile I've got to prepare for > 's hospital stay. Hopefully the nurses will allow me to use their > fridge for his yogurt. If not, I'll be hauling in a mini fridge for his > room! LOL. > > Rhonda UC, PKD > son, 16, CD (17 on Oct 4th! omg) > SCD 3 months > > >Rhonda, > >I know this is OT for this thread, but how is ? I haven't seen you > >post for a while and you were having to make some decisions about > >medications last time I saw one. Just wondering! (You were so helpful to > >me my first week here that I always look to see if you have posted.) > > > >Liz > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 25, 2009 Report Share Posted September 25, 2009 's fistula (with 2 openings) remains pretty large with lots of drainage. My daughter had a perirectal fistula. It took at least 6mon. on SCD to heal. She took no meds. The fistula was the last thing to heal. I hear you heal from the top down, and that seems to be the case. Diane D. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 25, 2009 Report Share Posted September 25, 2009 's fistula (with 2 openings) remains pretty large with lots of drainage. My daughter had a perirectal fistula. It took at least 6mon. on SCD to heal. She took no meds. The fistula was the last thing to heal. I hear you heal from the top down, and that seems to be the case. Diane D. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 25, 2009 Report Share Posted September 25, 2009 Thanks and Marilyn. I feel like I'm dragging myself through a straw but without this diet I have no doubt I'd feel worse. Diane, I can't wait to see that peri-rectal fistula disappear. It's just not right for a teen boy to worry about his drainage showing on his jeans. I hope is as fortunate as your daughter! Rhonda UC, PKD son, 16, CD SCD 3+ months My daughter had a perirectal fistula. It took at least 6mon. on SCD to heal. She took no meds. The fistula was the last thing to heal. I hear you heal from the top down, and that seems to be the case. Diane D.~~ Good Luck Rhonda! You have our heartfelt support. Let us know if you need any information to make your life easier:o) ~~ Just want to let you know that I'm glad to hear how well is doing. And that I'm keeping fingers crossed for your situation. Marilyn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 25, 2009 Report Share Posted September 25, 2009 Rhonda, Glad to hear that has gained weight and that the doctor is supportive! Sorry to hear about your troubles though. I hope you can find the time to take care of yourself too. Liz Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 25, 2009 Report Share Posted September 25, 2009 Rhonda, Glad to hear that has gained weight and that the doctor is supportive! Sorry to hear about your troubles though. I hope you can find the time to take care of yourself too. Liz Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 25, 2009 Report Share Posted September 25, 2009 >Thanks and Marilyn. I feel like I'm dragging myself through a straw but without this diet I have no doubt I'd feel worse. Diane, I can't wait to see that >peri-rectal fistula disappear. It's just not right for a teen boy to worry about his drainage showing on his jeans. I hope is as fortunate as your daughter! My daughter had to wear a pad for the drainage, and she was only 11 at the time- hadn't started her period yet. She has since grown 5 inches and gained like 30 pounds. Diane Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 25, 2009 Report Share Posted September 25, 2009 >Thanks and Marilyn. I feel like I'm dragging myself through a straw but without this diet I have no doubt I'd feel worse. Diane, I can't wait to see that >peri-rectal fistula disappear. It's just not right for a teen boy to worry about his drainage showing on his jeans. I hope is as fortunate as your daughter! My daughter had to wear a pad for the drainage, and she was only 11 at the time- hadn't started her period yet. She has since grown 5 inches and gained like 30 pounds. Diane Quote Link to comment Share on other sites More sharing options...
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