Re: The long & the short of it

[Guest guest]

Wow Rose, I'm sorry to hear the news, but you know I had an episode of renal failure in Feburary, that's why I became confused and jumped up and broke both my legs..

I had never had this problem before either... but they just decided it was from lasix they had doubled a week ahead of time, I was already on 80mg so they doubled it to 160mg... Another problem was that my hemacrit was dropping and was 26,

I really hope they get to the bottom of your problem, I can't stand for the medical profession go at it half/assed, if you know what I mean... They don't even ask for you're symptoms anymore, How do they know if you are symptomatic if they don't ask? Or refuse to listen like my pretty little MD..

Big Hugs,

-- The long & the short of it

Well, folks, here comes my report on "The Life & Times of Ramblin' Rose." For the short version (as short as I can get it), skip down to the *****. Get some tea, maybe some cheese & crackers, and get comfy.

Summer camp: I went to see Dr. Baughman 7/6. My third visit to him. I had planned to discuss beginning Cytoxan, as we had talked about before. But we spent the session mostly talking about my kidney problems (see below). He ordered some lab work, recommended I get an EMG of my legs/feet, neuropsych eval (previously done 3 yrs. ago) and see a nephrologist (kidney specialist) at the Indiana Univ. Med Ctr., where I already had an appt. scheduled for 7/27 in the sarc clinic. He also had me stop the MTX again, as it is excreted through the kidneys. So NS treatment on hold for now.

Kidneys: I apparently have some chronic kidney disease going on. The only previous problems I've had with my urinary tract were a kidney infection 30 years ago during pregnancy & an infection without symptoms 3 yrs. ago, while on Pred & Imuran. I've had a persistent, painful bladder infection for 3 months now. I just finished my 4th course of antibiotics. I am religious about taking antibiotics correctly, drank even more fluids than I usually do, which is a lot, guzzled cranberry juice, avoid bladder irritants & every other trick I know for prevention & cure of UTI's. I went for a TOC (test of cure) yesterday & should hear something Monday, but I doubt it's gone. Anyway, with the 3rd positive culture, I was referred to a urologist, who ordered a 24 hr. urine collection for creatinine clearance, a measure of kidney function, and also a CT of the kidneys. I also had noticed a decrease in amount of urine for the past few months, but no swelling that I could tell. Even with really forcing fluids, to the point of feeling sick, my urine was still concentrated. Anyway, the CT was negative, which doesn't tell you much. But the 24 hr. CC was pretty low, putting me at Stage 3 kidney disease. Now back in Feb. I had a chemistry panel that included an estimated GFR (glomerular filtration rate--basically the same as the CC, but based on serum creatinine) that said the same thing, but my primary care doc kind of blew it off. The urologist didn't blow it off & the CC basically confirmed it. He wants me to see a nephrologist, a sub-specialist who knows more about kidneys than just a regular urologist. The fact that I've had hypertension for 10 years (way before the sarc) & am now diabetic has him especially concerned. He said that the nephrologist could determine just what the problem is, but he commented that "we can't reverse the damage already done, but hopefully prevent any further damage." Baughman said I might need a renal biopsy to find out if the kidney problem is sarc-related or something else. Of course, I've been all over the Internet & the likeliest cause I've found is chronic glomerulonephritis. The earliest symptom is often hyper-tension, but many people have no symptoms until middle age, when they often present in kidney failure! On the chart of kidney disease, where I was Stage 3, Stage 5 is when you need dialysis or transplant. So the past couple of weeks I have bounced back & forth between wondering if I would be eligible for a transplant with NS & trying to picture myself getting dialysis for the rest of my life, and telling myself to cut the drama, it could turn out to be something minor, or a screwed up test & everything's fine! That's one reason I haven't been a faithful moderator--by the time I'd do a couple of hours of research, I'd be too exhausted to answer email for the group; Sam even found me asleep at the computer one early morning, keyboard on my lap. I saw my primary doc yesterday (the one who wasn't impressed by the GFR in Feb.) and I have to give him credit; he is taking it very seriously now & he was concerned & caring. He said, "You just keep getting more piled on, don't you?" and asked me how I was doing, was there anything he could help me with. He actually did help with a question I had about peripheral neuropathy (see below). So on Monday I will call I.U. & see if I can see a nephrologist the same day I see the sarc guy.

Peripheral neuropathy: Barb, I forgot to mention this to you in an earlier email, but Dr. Baughman (U. of Cincinnati) said that they have used Thalidomide for painful neuropathy--it gets rid of the pain, but you still have the numbness. I don't think I'm interested now, but if it gets much worse, I might consider it. I don't remember where you live, but you might have your doctor contact Baughman if you are interested in more info. I haven't checked for info on the web. Re: the neuropathy, I have been concerned the last couple of years with my blood sugars up & down, being told I was "pre-diabetic," "borderline diabetic," "metabolic syndrome," "insulin-resistant," and plain old "diabetic," that my worsening neuropathy might be diabetes-related, rather than sarc-related. I couldn't find the answer, so I asked my doctor yesterday. He said that diabetic neuropathy usually starts with pain, then as it progresses, it just becomes numbness. That's why diabetics have to inspect their feet all the time, because they don't feel pain from cuts or sores. Other neuropathies, like the sarc, usually start with numbness & progress to pain. Since mine started with numbness & is getting more painful, although I still have numbness too, it's probably not diabetic-related. He had advised me last visit to try the South Beach diet, as people who lost weight on it tended to lose some of the middle fat. I'm in the 5th week of the Ramblin' Rose version & I've lost 11#. I'll keep you all posted. It really isn't that bad after the first two weeks, and it's a pretty good diet, much more balanced than Atkins.

******I've got a kidney problem, maybe chronic kidney disease. Could be serious, hopefully not. Need to see a nephrologist, maybe have a kidney biopsy. Treatment of sarc on hold until more info on kidney situation. Neuropathy getting worse--have an appt. at the Indiana Univ. Medical Ctr. Sarc Clinic 7/27. On South Beach diet with some success!

Ramblin' Rose

Moderator

Get the new Windows Live Messenger!

[Guest guest]

Wow Rose, I'm sorry to hear the news, but you know I had an episode of renal failure in Feburary, that's why I became confused and jumped up and broke both my legs..

I had never had this problem before either... but they just decided it was from lasix they had doubled a week ahead of time, I was already on 80mg so they doubled it to 160mg... Another problem was that my hemacrit was dropping and was 26,

I really hope they get to the bottom of your problem, I can't stand for the medical profession go at it half/assed, if you know what I mean... They don't even ask for you're symptoms anymore, How do they know if you are symptomatic if they don't ask? Or refuse to listen like my pretty little MD..

Big Hugs,

-- The long & the short of it

Well, folks, here comes my report on "The Life & Times of Ramblin' Rose." For the short version (as short as I can get it), skip down to the *****. Get some tea, maybe some cheese & crackers, and get comfy.

Summer camp: I went to see Dr. Baughman 7/6. My third visit to him. I had planned to discuss beginning Cytoxan, as we had talked about before. But we spent the session mostly talking about my kidney problems (see below). He ordered some lab work, recommended I get an EMG of my legs/feet, neuropsych eval (previously done 3 yrs. ago) and see a nephrologist (kidney specialist) at the Indiana Univ. Med Ctr., where I already had an appt. scheduled for 7/27 in the sarc clinic. He also had me stop the MTX again, as it is excreted through the kidneys. So NS treatment on hold for now.

Kidneys: I apparently have some chronic kidney disease going on. The only previous problems I've had with my urinary tract were a kidney infection 30 years ago during pregnancy & an infection without symptoms 3 yrs. ago, while on Pred & Imuran. I've had a persistent, painful bladder infection for 3 months now. I just finished my 4th course of antibiotics. I am religious about taking antibiotics correctly, drank even more fluids than I usually do, which is a lot, guzzled cranberry juice, avoid bladder irritants & every other trick I know for prevention & cure of UTI's. I went for a TOC (test of cure) yesterday & should hear something Monday, but I doubt it's gone. Anyway, with the 3rd positive culture, I was referred to a urologist, who ordered a 24 hr. urine collection for creatinine clearance, a measure of kidney function, and also a CT of the kidneys. I also had noticed a decrease in amount of urine for the past few months, but no swelling that I could tell. Even with really forcing fluids, to the point of feeling sick, my urine was still concentrated. Anyway, the CT was negative, which doesn't tell you much. But the 24 hr. CC was pretty low, putting me at Stage 3 kidney disease. Now back in Feb. I had a chemistry panel that included an estimated GFR (glomerular filtration rate--basically the same as the CC, but based on serum creatinine) that said the same thing, but my primary care doc kind of blew it off. The urologist didn't blow it off & the CC basically confirmed it. He wants me to see a nephrologist, a sub-specialist who knows more about kidneys than just a regular urologist. The fact that I've had hypertension for 10 years (way before the sarc) & am now diabetic has him especially concerned. He said that the nephrologist could determine just what the problem is, but he commented that "we can't reverse the damage already done, but hopefully prevent any further damage." Baughman said I might need a renal biopsy to find out if the kidney problem is sarc-related or something else. Of course, I've been all over the Internet & the likeliest cause I've found is chronic glomerulonephritis. The earliest symptom is often hyper-tension, but many people have no symptoms until middle age, when they often present in kidney failure! On the chart of kidney disease, where I was Stage 3, Stage 5 is when you need dialysis or transplant. So the past couple of weeks I have bounced back & forth between wondering if I would be eligible for a transplant with NS & trying to picture myself getting dialysis for the rest of my life, and telling myself to cut the drama, it could turn out to be something minor, or a screwed up test & everything's fine! That's one reason I haven't been a faithful moderator--by the time I'd do a couple of hours of research, I'd be too exhausted to answer email for the group; Sam even found me asleep at the computer one early morning, keyboard on my lap. I saw my primary doc yesterday (the one who wasn't impressed by the GFR in Feb.) and I have to give him credit; he is taking it very seriously now & he was concerned & caring. He said, "You just keep getting more piled on, don't you?" and asked me how I was doing, was there anything he could help me with. He actually did help with a question I had about peripheral neuropathy (see below). So on Monday I will call I.U. & see if I can see a nephrologist the same day I see the sarc guy.

Peripheral neuropathy: Barb, I forgot to mention this to you in an earlier email, but Dr. Baughman (U. of Cincinnati) said that they have used Thalidomide for painful neuropathy--it gets rid of the pain, but you still have the numbness. I don't think I'm interested now, but if it gets much worse, I might consider it. I don't remember where you live, but you might have your doctor contact Baughman if you are interested in more info. I haven't checked for info on the web. Re: the neuropathy, I have been concerned the last couple of years with my blood sugars up & down, being told I was "pre-diabetic," "borderline diabetic," "metabolic syndrome," "insulin-resistant," and plain old "diabetic," that my worsening neuropathy might be diabetes-related, rather than sarc-related. I couldn't find the answer, so I asked my doctor yesterday. He said that diabetic neuropathy usually starts with pain, then as it progresses, it just becomes numbness. That's why diabetics have to inspect their feet all the time, because they don't feel pain from cuts or sores. Other neuropathies, like the sarc, usually start with numbness & progress to pain. Since mine started with numbness & is getting more painful, although I still have numbness too, it's probably not diabetic-related. He had advised me last visit to try the South Beach diet, as people who lost weight on it tended to lose some of the middle fat. I'm in the 5th week of the Ramblin' Rose version & I've lost 11#. I'll keep you all posted. It really isn't that bad after the first two weeks, and it's a pretty good diet, much more balanced than Atkins.

******I've got a kidney problem, maybe chronic kidney disease. Could be serious, hopefully not. Need to see a nephrologist, maybe have a kidney biopsy. Treatment of sarc on hold until more info on kidney situation. Neuropathy getting worse--have an appt. at the Indiana Univ. Medical Ctr. Sarc Clinic 7/27. On South Beach diet with some success!

Ramblin' Rose

Moderator

Get the new Windows Live Messenger!

[Guest guest]

Wow Rose, I'm sorry to hear the news, but you know I had an episode of renal failure in Feburary, that's why I became confused and jumped up and broke both my legs..

I had never had this problem before either... but they just decided it was from lasix they had doubled a week ahead of time, I was already on 80mg so they doubled it to 160mg... Another problem was that my hemacrit was dropping and was 26,

I really hope they get to the bottom of your problem, I can't stand for the medical profession go at it half/assed, if you know what I mean... They don't even ask for you're symptoms anymore, How do they know if you are symptomatic if they don't ask? Or refuse to listen like my pretty little MD..

Big Hugs,

-- The long & the short of it

Well, folks, here comes my report on "The Life & Times of Ramblin' Rose." For the short version (as short as I can get it), skip down to the *****. Get some tea, maybe some cheese & crackers, and get comfy.

Summer camp: I went to see Dr. Baughman 7/6. My third visit to him. I had planned to discuss beginning Cytoxan, as we had talked about before. But we spent the session mostly talking about my kidney problems (see below). He ordered some lab work, recommended I get an EMG of my legs/feet, neuropsych eval (previously done 3 yrs. ago) and see a nephrologist (kidney specialist) at the Indiana Univ. Med Ctr., where I already had an appt. scheduled for 7/27 in the sarc clinic. He also had me stop the MTX again, as it is excreted through the kidneys. So NS treatment on hold for now.

Kidneys: I apparently have some chronic kidney disease going on. The only previous problems I've had with my urinary tract were a kidney infection 30 years ago during pregnancy & an infection without symptoms 3 yrs. ago, while on Pred & Imuran. I've had a persistent, painful bladder infection for 3 months now. I just finished my 4th course of antibiotics. I am religious about taking antibiotics correctly, drank even more fluids than I usually do, which is a lot, guzzled cranberry juice, avoid bladder irritants & every other trick I know for prevention & cure of UTI's. I went for a TOC (test of cure) yesterday & should hear something Monday, but I doubt it's gone. Anyway, with the 3rd positive culture, I was referred to a urologist, who ordered a 24 hr. urine collection for creatinine clearance, a measure of kidney function, and also a CT of the kidneys. I also had noticed a decrease in amount of urine for the past few months, but no swelling that I could tell. Even with really forcing fluids, to the point of feeling sick, my urine was still concentrated. Anyway, the CT was negative, which doesn't tell you much. But the 24 hr. CC was pretty low, putting me at Stage 3 kidney disease. Now back in Feb. I had a chemistry panel that included an estimated GFR (glomerular filtration rate--basically the same as the CC, but based on serum creatinine) that said the same thing, but my primary care doc kind of blew it off. The urologist didn't blow it off & the CC basically confirmed it. He wants me to see a nephrologist, a sub-specialist who knows more about kidneys than just a regular urologist. The fact that I've had hypertension for 10 years (way before the sarc) & am now diabetic has him especially concerned. He said that the nephrologist could determine just what the problem is, but he commented that "we can't reverse the damage already done, but hopefully prevent any further damage." Baughman said I might need a renal biopsy to find out if the kidney problem is sarc-related or something else. Of course, I've been all over the Internet & the likeliest cause I've found is chronic glomerulonephritis. The earliest symptom is often hyper-tension, but many people have no symptoms until middle age, when they often present in kidney failure! On the chart of kidney disease, where I was Stage 3, Stage 5 is when you need dialysis or transplant. So the past couple of weeks I have bounced back & forth between wondering if I would be eligible for a transplant with NS & trying to picture myself getting dialysis for the rest of my life, and telling myself to cut the drama, it could turn out to be something minor, or a screwed up test & everything's fine! That's one reason I haven't been a faithful moderator--by the time I'd do a couple of hours of research, I'd be too exhausted to answer email for the group; Sam even found me asleep at the computer one early morning, keyboard on my lap. I saw my primary doc yesterday (the one who wasn't impressed by the GFR in Feb.) and I have to give him credit; he is taking it very seriously now & he was concerned & caring. He said, "You just keep getting more piled on, don't you?" and asked me how I was doing, was there anything he could help me with. He actually did help with a question I had about peripheral neuropathy (see below). So on Monday I will call I.U. & see if I can see a nephrologist the same day I see the sarc guy.

Peripheral neuropathy: Barb, I forgot to mention this to you in an earlier email, but Dr. Baughman (U. of Cincinnati) said that they have used Thalidomide for painful neuropathy--it gets rid of the pain, but you still have the numbness. I don't think I'm interested now, but if it gets much worse, I might consider it. I don't remember where you live, but you might have your doctor contact Baughman if you are interested in more info. I haven't checked for info on the web. Re: the neuropathy, I have been concerned the last couple of years with my blood sugars up & down, being told I was "pre-diabetic," "borderline diabetic," "metabolic syndrome," "insulin-resistant," and plain old "diabetic," that my worsening neuropathy might be diabetes-related, rather than sarc-related. I couldn't find the answer, so I asked my doctor yesterday. He said that diabetic neuropathy usually starts with pain, then as it progresses, it just becomes numbness. That's why diabetics have to inspect their feet all the time, because they don't feel pain from cuts or sores. Other neuropathies, like the sarc, usually start with numbness & progress to pain. Since mine started with numbness & is getting more painful, although I still have numbness too, it's probably not diabetic-related. He had advised me last visit to try the South Beach diet, as people who lost weight on it tended to lose some of the middle fat. I'm in the 5th week of the Ramblin' Rose version & I've lost 11#. I'll keep you all posted. It really isn't that bad after the first two weeks, and it's a pretty good diet, much more balanced than Atkins.

******I've got a kidney problem, maybe chronic kidney disease. Could be serious, hopefully not. Need to see a nephrologist, maybe have a kidney biopsy. Treatment of sarc on hold until more info on kidney situation. Neuropathy getting worse--have an appt. at the Indiana Univ. Medical Ctr. Sarc Clinic 7/27. On South Beach diet with some success!

Ramblin' Rose

Moderator

Get the new Windows Live Messenger!