@ess77 Thank you for sharing this long journey. Any health problem that results in an admission to the ED is very scary.
After the kidney stone episode 25 years ago I had a series of tests that examined causes for the development of the kidney stone. I collected urine for several days and then the sample was sent by my local physician to Mayo for analysis. I recall that one of the things that was looked for was levels of calcium. Now remember this was a long time ago so I don't know what the current medical thinking is on this but high levels of calcium was thought to produce kidney stones. I did not have any other health problems at the time. I have not had any more kidney stones and less frequent UTIs since then.
It's good that you will be seeing the nephrologist. They are the specialists in kidneys. I understand your concern. Kidney stones can be cured and controlled by medications and diet so that's a very good thing. I hope your nephrologist will be prepared with your medical history and will spend the time with you to answer your questions.
Will you let me know when your appointment is scheduled and then come back and tell me the results of your visit?
@ess77 Thank you for sharing this long journey. Any health problem that results in an admission to the ED is very scary.
After the kidney stone episode 25 years ago I had a series of tests that examined causes for the development of the kidney stone. I collected urine for several days and then the sample was sent by my local physician to Mayo for analysis. I recall that one of the things that was looked for was levels of calcium. Now remember this was a long time ago so I don't know what the current medical thinking is on this but high levels of calcium was thought to produce kidney stones. I did not have any other health problems at the time. I have not had any more kidney stones and less frequent UTIs since then.
It's good that you will be seeing the nephrologist. They are the specialists in kidneys. I understand your concern. Kidney stones can be cured and controlled by medications and diet so that's a very good thing. I hope your nephrologist will be prepared with your medical history and will spend the time with you to answer your questions.
Will you let me know when your appointment is scheduled and then come back and tell me the results of your visit?
In my younger years I was prescribed macrodantin (antibiotic) for 5 years to help prevent the raging UTI’s. Then I discovered cranberry supplements. I take them every day, twice a day and no UTI for years. It doesn’t upset my stomach the way the juice does.
Recently, my husband has had prostrate radiation and the oncologist recommended that my husband take it twice a day for a while. He said it helped that awful feeling. “Yeah, I know” I said, laughing just a little. “Welcome to my world”.
@ess77 Thank you for sharing this long journey. Any health problem that results in an admission to the ED is very scary.
After the kidney stone episode 25 years ago I had a series of tests that examined causes for the development of the kidney stone. I collected urine for several days and then the sample was sent by my local physician to Mayo for analysis. I recall that one of the things that was looked for was levels of calcium. Now remember this was a long time ago so I don't know what the current medical thinking is on this but high levels of calcium was thought to produce kidney stones. I did not have any other health problems at the time. I have not had any more kidney stones and less frequent UTIs since then.
It's good that you will be seeing the nephrologist. They are the specialists in kidneys. I understand your concern. Kidney stones can be cured and controlled by medications and diet so that's a very good thing. I hope your nephrologist will be prepared with your medical history and will spend the time with you to answer your questions.
Will you let me know when your appointment is scheduled and then come back and tell me the results of your visit?
@naturegirl5 and all...yes, I will keep you informed. My nephrologist is at Mayo Florida. I have all my doctors there now except PCP which I can't since the PCP dept doesn't take Medicare. So I'm finally getting the care and intensity of care/knowledge at Mayo. I was in the Mayo Hospital and they didn't run a urine test. I think that was an oversight maybe? but, in the long run, didn't matter since the 2 IV antibiotics solved the UTI issue and the sinus infection. I think if I had an infected toenail it would have been helped!
In the research I've done re calcium crystals in the urine, I found they indicate possible stones or stone build-up. That's why I kept asking nephrology for answers. This is a strong indication of how important it is to advocate for yourself. It was interesting the hospital doctor was totally focused on the abdomen as the infection source. I truly believe it was the bladder or kidneys that were/are the source. I asked questions to get them thinking in that direction but sounded like a neurotic, overly concerned old lady patient. I understand, but Mayo is the best and can do better in this kind of thing.
Medical folks are so well educated and many at Mayo are extremely bright and knowledgeable, they may have a challenge hearing on our level? I am not being critical, far be it from me to do anything but praise Mayo and the staff. They have helped me enormously. But, this is a general attitude from medical folks to patients.
My previous encounter with nephrology was excellent, so I'm positive she will find answers. No stones, please. I hope the kidneys are not worsened by this.
Thanks for the input. You stay stone-free! Blessings, Elizabeth
@susan82, @naturegirl5, and all...Hello, fellow UTI'ers...I just got home from the hospital a couple of days ago after calling rescue to take me to the ED. Rescue thought I was having a heart attack at the time. In the ED they said it was a false positive, I was very dehydrated, etc. I'd had diarrhea and vomiting for a couple of hours before calling for help.
I hadn't felt well for about a month or so, didn't have any idea why and was getting worse. Last Tuesday, at about 4 o'clock I felt much worse and had bloating, pain in my left back, nauseous, and crawled into bed not understanding the problem. After the intestinal stuff began, I realized I needed help.
The ED put me on 2 IV antibiotics plus lots of fluids, of course. Funny thing, I drank the same amount of water and fluids that day I always do. I have heart failure and edema is always around, so I must balance the fluid intake with outgo. Nothing was different. The ED doctor said I was dehydrated and had some kind of abdominal infection. To this moment, the stool cultures are all normal.
When I was admitted to the hospital 24 hours later, I requested a urine test as they didn't do one in ED. Last year, I had 4-5 UTI episodes, one with sepsis and all with extremely high numbers-protein, bacteria, red blood cells, etc all out of sight. With several of those UTIs, there were no symptoms. None other than feeling lousy. I didn't think that was possible. I hadn't had a UTI for several years until last year, so all this was from nowhere. I have autoimmune diseases and other health issues but had stopped having UTIs. Then, one right after another.
I was on different antibiotics at different times. With sepsis, I had 2 IV antibiotics and a 10-day oral antibiotic. It cleared. But, another one a couple of months later. This really got my attention and now I'm hypersensitive about getting this infection and the problems it can cause. The urine test results were again out-of-sight numbers. I had a raging UTI~undetected. And, for the first time ever I had high calcium crystals. I don't take calcium and eat only yogurt as my calcium source.
The follow-up urine test later that afternoon was normal except for the high calcium crystals. The abdominal CT didn't show any issues other than fluid. So, was discharged the following day.
I called nephrology for insight into the urine results, no symptoms, how do I keep this from happening again...I think the entire episode was due to the UTI, it caused diarrhea and vomiting and other discomforts that led to dehydration and hospital. With no usual symptoms, what do I do?
I just got an email that the nephrologist wants to see me. This really concerns me regarding my kidneys, possible stones, etc. Does any of this make sense?
Thanks for any suggestions or insight you may have.
Blessings to all...Elizabeth
I have a comment about the UTI part; otherwise, my thoughts are with you during this difficult time.
I worry about more of the chronic UTI infections/medication that brought me ultimately to kidney disease. My remedy is all I can think of to do with the UTIs, especially since I now take Linzess, which saves me from my Chronic Bowell Disease and creates new worries about UTIs from diarrhea that results from Linzess. So far, my method works.
I stuff my vagina with toilet paper and change it every time I urinate. I also put wads of it on my rectum. That is all I can figure out to do to stop any cross-infection from my bowels to my vagina. I am obsessively careful about any cross contamination from the bowel to vagina. I have had UTIs off and on for years. Finally my urologist prescribed Bactrim, which I took for six years and which ended my bouts with UTIs - and apparently caused my kidney damage.
Susanna82 thank you for sharing. You answered my question about lowering my GFR. My eGFR was 60 and 62. After the eGFR AA was changed my GFR lowered to 59 stage 3a. What diet change’s have you made?
I went to a plant-based diet. I had been a vegetarian for years - kidneys don't do well with meat - so that part was not hard and probably had protected me from more kidney damage over time. . However, I changed my diet to what I learned as I consumed information from every kidney publication, or website I could find. The nutritionist at my local hospital is not a kidney nutritionist, but I continued obsessive reading and augmented what she gave me to what I learned. I limit protein to 50 grams, or fewer, a day, cut out food that is listed as being hard on kidneys, (dairy, meat, salt, sugar,) haunted the web, and compared information and sources to be sure there was agreement. I have read government and hospital scientific papers on CKD, and results of studies and tests - the whole kidney thing is about food.
Look at the government websites and the National Kidney Foundation. Also, check out websites from kidney survivors who maintain websites: they want you to buy their products, but they have had personal experience with the disease and include a lot of information. As you become more familiar with the topic and the disease you will recognize the quality of the advice - or lack there of.
I also stepped up my exercise. We do not die from kidney failure, we die from coronary heart disease, do 30 minutes of exercise a day.
The first nephologist I went to was not interested, since I was in Stage 3, and gave me ten minutes of his time. I switched doctors. You will read in many comments and publications that at Stage 3, you do not need to do anything – I assume this is because kidney disease is slow moving – however, that is shocking, horrible advice. Start now so you can avoid, slow down, or reverse your progress to Stage 4.
I have a comment about the UTI part; otherwise, my thoughts are with you during this difficult time.
I worry about more of the chronic UTI infections/medication that brought me ultimately to kidney disease. My remedy is all I can think of to do with the UTIs, especially since I now take Linzess, which saves me from my Chronic Bowell Disease and creates new worries about UTIs from diarrhea that results from Linzess. So far, my method works.
I stuff my vagina with toilet paper and change it every time I urinate. I also put wads of it on my rectum. That is all I can figure out to do to stop any cross-infection from my bowels to my vagina. I am obsessively careful about any cross contamination from the bowel to vagina. I have had UTIs off and on for years. Finally my urologist prescribed Bactrim, which I took for six years and which ended my bouts with UTIs - and apparently caused my kidney damage.
@susan82, and all...Yuck! You are going the extra mile and then some. Stuffing myself with TP would be uncomfortable and irritating. I suppose if it works for you, it's a good thing. It would be tough for me.
I have had IBS for most of my adult years, carry an extra pair of panties always and pads...for IBS and slight incontinence.
My word, what we do to live our ' normal' lives. Not fun.
I'm extremely careful as you are about preventing these infections. I saw an infection disease doc last year. He put me on Bactrim, I think, small dose, profolactily, to prevent more infections. Didn't work. Just had more problems with infections and developed problems with multiple antibiotics. No CDIFF, thankfully. But, serious reactions and problems.
I saw another doctor, Integrated Medicine...dept with massage, acupuncture, wellness counselors, nutritionist, etc. He recommended a prebiotic that has made a difference in my life. It works!
No more diarrehea or constipation. None. Until this episode hit me full force.
I also began taking a UTI supplement from Research Verified, with cranberries, other berries, etc. Yntil last week kI had no UTI! I was thrilled for several months had a normal kidney/bladder/intestine life. Months.
Then, this sent me to bed and to hospital, without symptoms. No idea what caused this. Hope to get insights when I see nephrology.
@susan82, and all...Yuck! You are going the extra mile and then some. Stuffing myself with TP would be uncomfortable and irritating. I suppose if it works for you, it's a good thing. It would be tough for me.
I have had IBS for most of my adult years, carry an extra pair of panties always and pads...for IBS and slight incontinence.
My word, what we do to live our ' normal' lives. Not fun.
I'm extremely careful as you are about preventing these infections. I saw an infection disease doc last year. He put me on Bactrim, I think, small dose, profolactily, to prevent more infections. Didn't work. Just had more problems with infections and developed problems with multiple antibiotics. No CDIFF, thankfully. But, serious reactions and problems.
I saw another doctor, Integrated Medicine...dept with massage, acupuncture, wellness counselors, nutritionist, etc. He recommended a prebiotic that has made a difference in my life. It works!
No more diarrehea or constipation. None. Until this episode hit me full force.
I also began taking a UTI supplement from Research Verified, with cranberries, other berries, etc. Yntil last week kI had no UTI! I was thrilled for several months had a normal kidney/bladder/intestine life. Months.
Then, this sent me to bed and to hospital, without symptoms. No idea what caused this. Hope to get insights when I see nephrology.
Has anyone with chronic UTI's been advised to take Hiprex (methenamine) to prevent UTI's? Is there any research to show what the safety profile is of this medication and if it okay to use long term instead of prophylactic antibiotic use?
Has anyone with chronic UTI's been advised to take Hiprex (methenamine) to prevent UTI's? Is there any research to show what the safety profile is of this medication and if it okay to use long term instead of prophylactic antibiotic use?
A male friend did, for over two years. A new urologist told him to take d-mannose six months ago to "change the urethral lining" to make it less congenial for the bacteria to hang out. My friend bought the stuff at a drugstore and hasn't had a UTI since. A primary source of d-mannose is cranberries.
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@ess77 Thank you for sharing this long journey. Any health problem that results in an admission to the ED is very scary.
After the kidney stone episode 25 years ago I had a series of tests that examined causes for the development of the kidney stone. I collected urine for several days and then the sample was sent by my local physician to Mayo for analysis. I recall that one of the things that was looked for was levels of calcium. Now remember this was a long time ago so I don't know what the current medical thinking is on this but high levels of calcium was thought to produce kidney stones. I did not have any other health problems at the time. I have not had any more kidney stones and less frequent UTIs since then.
It's good that you will be seeing the nephrologist. They are the specialists in kidneys. I understand your concern. Kidney stones can be cured and controlled by medications and diet so that's a very good thing. I hope your nephrologist will be prepared with your medical history and will spend the time with you to answer your questions.
Will you let me know when your appointment is scheduled and then come back and tell me the results of your visit?
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Like -
Helpful -
Hug
4 ReactionsIn my younger years I was prescribed macrodantin (antibiotic) for 5 years to help prevent the raging UTI’s. Then I discovered cranberry supplements. I take them every day, twice a day and no UTI for years. It doesn’t upset my stomach the way the juice does.
Recently, my husband has had prostrate radiation and the oncologist recommended that my husband take it twice a day for a while. He said it helped that awful feeling. “Yeah, I know” I said, laughing just a little. “Welcome to my world”.
-
Like -
Helpful -
Hug
4 Reactions@naturegirl5 and all...yes, I will keep you informed. My nephrologist is at Mayo Florida. I have all my doctors there now except PCP which I can't since the PCP dept doesn't take Medicare. So I'm finally getting the care and intensity of care/knowledge at Mayo. I was in the Mayo Hospital and they didn't run a urine test. I think that was an oversight maybe? but, in the long run, didn't matter since the 2 IV antibiotics solved the UTI issue and the sinus infection. I think if I had an infected toenail it would have been helped!
In the research I've done re calcium crystals in the urine, I found they indicate possible stones or stone build-up. That's why I kept asking nephrology for answers. This is a strong indication of how important it is to advocate for yourself. It was interesting the hospital doctor was totally focused on the abdomen as the infection source. I truly believe it was the bladder or kidneys that were/are the source. I asked questions to get them thinking in that direction but sounded like a neurotic, overly concerned old lady patient. I understand, but Mayo is the best and can do better in this kind of thing.
Medical folks are so well educated and many at Mayo are extremely bright and knowledgeable, they may have a challenge hearing on our level? I am not being critical, far be it from me to do anything but praise Mayo and the staff. They have helped me enormously. But, this is a general attitude from medical folks to patients.
My previous encounter with nephrology was excellent, so I'm positive she will find answers. No stones, please. I hope the kidneys are not worsened by this.
Thanks for the input. You stay stone-free! Blessings, Elizabeth
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Like -
Helpful -
Hug
1 ReactionI have a comment about the UTI part; otherwise, my thoughts are with you during this difficult time.
I worry about more of the chronic UTI infections/medication that brought me ultimately to kidney disease. My remedy is all I can think of to do with the UTIs, especially since I now take Linzess, which saves me from my Chronic Bowell Disease and creates new worries about UTIs from diarrhea that results from Linzess. So far, my method works.
I stuff my vagina with toilet paper and change it every time I urinate. I also put wads of it on my rectum. That is all I can figure out to do to stop any cross-infection from my bowels to my vagina. I am obsessively careful about any cross contamination from the bowel to vagina. I have had UTIs off and on for years. Finally my urologist prescribed Bactrim, which I took for six years and which ended my bouts with UTIs - and apparently caused my kidney damage.
-
Like -
Helpful -
Hug
2 ReactionsI went to a plant-based diet. I had been a vegetarian for years - kidneys don't do well with meat - so that part was not hard and probably had protected me from more kidney damage over time. . However, I changed my diet to what I learned as I consumed information from every kidney publication, or website I could find. The nutritionist at my local hospital is not a kidney nutritionist, but I continued obsessive reading and augmented what she gave me to what I learned. I limit protein to 50 grams, or fewer, a day, cut out food that is listed as being hard on kidneys, (dairy, meat, salt, sugar,) haunted the web, and compared information and sources to be sure there was agreement. I have read government and hospital scientific papers on CKD, and results of studies and tests - the whole kidney thing is about food.
Look at the government websites and the National Kidney Foundation. Also, check out websites from kidney survivors who maintain websites: they want you to buy their products, but they have had personal experience with the disease and include a lot of information. As you become more familiar with the topic and the disease you will recognize the quality of the advice - or lack there of.
I also stepped up my exercise. We do not die from kidney failure, we die from coronary heart disease, do 30 minutes of exercise a day.
The first nephologist I went to was not interested, since I was in Stage 3, and gave me ten minutes of his time. I switched doctors. You will read in many comments and publications that at Stage 3, you do not need to do anything – I assume this is because kidney disease is slow moving – however, that is shocking, horrible advice. Start now so you can avoid, slow down, or reverse your progress to Stage 4.
-
Like -
Helpful -
Hug
5 Reactions@susan82, and all...Yuck! You are going the extra mile and then some. Stuffing myself with TP would be uncomfortable and irritating. I suppose if it works for you, it's a good thing. It would be tough for me.
I have had IBS for most of my adult years, carry an extra pair of panties always and pads...for IBS and slight incontinence.
My word, what we do to live our ' normal' lives. Not fun.
I'm extremely careful as you are about preventing these infections. I saw an infection disease doc last year. He put me on Bactrim, I think, small dose, profolactily, to prevent more infections. Didn't work. Just had more problems with infections and developed problems with multiple antibiotics. No CDIFF, thankfully. But, serious reactions and problems.
I saw another doctor, Integrated Medicine...dept with massage, acupuncture, wellness counselors, nutritionist, etc. He recommended a prebiotic that has made a difference in my life. It works!
No more diarrehea or constipation. None. Until this episode hit me full force.
I also began taking a UTI supplement from Research Verified, with cranberries, other berries, etc. Yntil last week kI had no UTI! I was thrilled for several months had a normal kidney/bladder/intestine life. Months.
Then, this sent me to bed and to hospital, without symptoms. No idea what caused this. Hope to get insights when I see nephrology.
Be well...Elizabeth
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Helpful -
Hug
2 ReactionsOops...prebiotic, NOT prebiotic.
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1 ReactionPROBIOTIC!
Has anyone with chronic UTI's been advised to take Hiprex (methenamine) to prevent UTI's? Is there any research to show what the safety profile is of this medication and if it okay to use long term instead of prophylactic antibiotic use?
A male friend did, for over two years. A new urologist told him to take d-mannose six months ago to "change the urethral lining" to make it less congenial for the bacteria to hang out. My friend bought the stuff at a drugstore and hasn't had a UTI since. A primary source of d-mannose is cranberries.