I am a female C4/5 complete quad age 51 and 36 1/2 years post. I think I have been a member of this community since 2001 but it has been so long I can't remember and I don't frequent this community as often as I would like to since I get the answers to my questions via my doctors, my urologist [who is familiar with neurogenic bladders and my bladder specifically], my home health agency nurses and caregivers and my own common sense.
WARNING: There is a lot of information that is irrelevant to my question but because it seemed to flow with what I was trying to get across... I left it in. As well as answering questions that you might ask and therefore I will I have provided in this post. So I will bold my actual question.
I could ask this question to my wonderful urologist of 10 years and I was just there but forgot to ask her. I have had to your gate my Foley catheter off and on since the 1980s for different reasons. Right now I am producing quite a bit of sediment because of having a pathogenic bacteria [Proteus Mirabilis] present in my urine/bladder since 2011. I had PM before in 2006 but got rid of it by removing bladder stones and being on IV antibiotics.
I had 10 bladder stones removed in August 2012 (after my husband passed away and who used to be a Chief Med Tech and often talked with my urologist about bacteria and what to do in certain situations with my urinary health).
Anyway, when I began to produce more sediment in my urine in 2011 [before my husband passed away] he was urinating and instilling my bladder with a sterile water/vinegar with a ratio that I can tolerate. We suspected that Proteus Mirabilis was present in my urine again so we had a urine culture taken again and, sure enough, it was present. My same urologist ordered a pelvic CT scan [the only way to see bladder stones] and my husband took me to have been pelvic CT scan done and it showed 10 bladder stones so we had them removed (like I said above) and was on IV antibiotics for Proteus Mirabilis and after the stones were removed my urologist had me do a "Gentamicin wash" irrigating with Gentamicin for 7 or 10 days [can't recall now]. But even after using all those 3 big guns to try to get rid of that nasty bastard of a pathogenic bacteria... it was still present after a urine culture. Fortunately, I have not been symptomatic (fever or pain) except for the sediment coming back with a vengeance.
This time around my husband was gone and, needless to say, not only was he my life and my primary caregiver [with caregivers coming in to do my morning care and some evening care and having a home health agency like always, I changed my catheter every 3 weeks and hiring teenagers to clean our home since he couldn't do everything] but I had nowhere to go because he was with me 24/7/365 for the most part.
I moved in with my sister and brother-in-law (who was in the Northeast) and lived with them for 3 years but since they were getting older and I have very little family left (basically only 3 family members who are still alive and active with communicating with me) they asked me "to move on" after my sister acquired so lower leg problems and they basically wanted their house back despite me hiring morning and evening caregivers 7 days a week along with having a great home health agency come in to change my catheter and any skilled nursing needs -- especially after acquiring a Stage III wound in 2009 which kept me bedridden but during those 3 years my husband and I were basically homebodies anyway so with home health agency skilled nursing help and my husband's knowledge of wounds and caring for my wound... my wound healed and my husband and I getting ready to start our active life again with me up in the chair only for him to completely unexpectedly pass away one morning. THIS IS ALL IRRELEVANT INFORMATION but it does seem to fall into the story. Sorry!
Anyway, I have continued to irrigate and instill my Foley catheter with the sterile water/vinegar every morning and evening. I tried Renacidin for a brief amount of time but it was too caustic for my bladder and, for the first time in my life, I had blood in my urine despite diluting it. Since I had to move and the home health agency I have now (and the only one I could find to take me on as a Medicare patient and as a quad) is poor at getting supplies to me... I was wondering if I could use distilled water in place of sterile water.
I just recently moved back to Arizona where my husband and I lived for numerous reasons and the nurse who came to change my catheter asked me why I was not using saline. I just responded that I had always used sterile water... even way back in the 1980s when I had a problem with sediment. It did not occur to me to ask my urologist when I went to see her for the second time since last week after moving back here in January if I could use distilled water because I thought the sterile water would have been delivered to my home by now as it has been a week and a half. I have contacted the agency and, unlike the one I had in Pennsylvania (which put all these agencies down here to shame) who had all of my supplies delivered to me via FedEx the next day or the day after they were ordered and after my nurse's visit to change my catheter. They have not yet responded to my call. They were supposed to start giving me a home health aide 2-3 mornings a week to give my live-in caregiver a break but they haven't even done that yet.
Medicare started making cuts with home health care back in 1999 when they switched to the "Prospective Payment System" whereby I used to get 2 morning CNA visits for 2 hours each morning and 2 evening CNA visits for 2 hours each evening. That got worse and now, I am lucky if I get 3 home health aide visits a week! This occurred just 2 years after my husband and I married. We surely did not expect it and when it got worse over the years we were forced to start hiring our own caregivers. My financial income because of, god forbid I had a job and my husband was an expert in the software manager field working for NASA and other government agencies with good incomes, is now way over me being accepted for any Medicaid help. Been there, done that.
I am between a rock and a hard place because I make too much money for Medicaid help but not quite enough for 24-hour care. For the first time in my life I was lucky to find a live-in caregiver whereby she accepts when I can pay her and I pay for her room and board. This is all irrelevant to this thread also and please do not respond to anything but my question regarding using distilled water.
One last thing... if you are wondering why I am using a Foley catheter after 36 1/2 years... it is a "why fix what is not broke" issue. My urologist says that my bladder looks like a bladder that has never had an indwelling catheter and it for 36 1/2 years... and like an able-bodied persons bladder. :thumbsup: I drink a lot of water all day long [understatement] but I have had to be careful since a little over a couple of years ago I was hospitalized for drinking myself into the hospital by drinking too much water to wash out my all of my electrolytes and felt really sick. I was only hospitalized for a couple days to get probiotics in me and then have been okay. I now add Powerade to my drink jug and add cranberry juice to some of my water in the morning or evening.
Sorry for all the extra information that is completely irrelevant to this question!
Thanks in advance!
~Lori
Can I use distilled water for catheter irrigation?
WARNING: There is a lot of information that is irrelevant to my question but because it seemed to flow with what I was trying to get across... I left it in. As well as answering questions that you might ask and therefore I will I have provided in this post. So I will bold my actual question.
I could ask this question to my wonderful urologist of 10 years and I was just there but forgot to ask her. I have had to your gate my Foley catheter off and on since the 1980s for different reasons. Right now I am producing quite a bit of sediment because of having a pathogenic bacteria [Proteus Mirabilis] present in my urine/bladder since 2011. I had PM before in 2006 but got rid of it by removing bladder stones and being on IV antibiotics.
I had 10 bladder stones removed in August 2012 (after my husband passed away and who used to be a Chief Med Tech and often talked with my urologist about bacteria and what to do in certain situations with my urinary health).
Anyway, when I began to produce more sediment in my urine in 2011 [before my husband passed away] he was urinating and instilling my bladder with a sterile water/vinegar with a ratio that I can tolerate. We suspected that Proteus Mirabilis was present in my urine again so we had a urine culture taken again and, sure enough, it was present. My same urologist ordered a pelvic CT scan [the only way to see bladder stones] and my husband took me to have been pelvic CT scan done and it showed 10 bladder stones so we had them removed (like I said above) and was on IV antibiotics for Proteus Mirabilis and after the stones were removed my urologist had me do a "Gentamicin wash" irrigating with Gentamicin for 7 or 10 days [can't recall now]. But even after using all those 3 big guns to try to get rid of that nasty bastard of a pathogenic bacteria... it was still present after a urine culture. Fortunately, I have not been symptomatic (fever or pain) except for the sediment coming back with a vengeance.
This time around my husband was gone and, needless to say, not only was he my life and my primary caregiver [with caregivers coming in to do my morning care and some evening care and having a home health agency like always, I changed my catheter every 3 weeks and hiring teenagers to clean our home since he couldn't do everything] but I had nowhere to go because he was with me 24/7/365 for the most part.
I moved in with my sister and brother-in-law (who was in the Northeast) and lived with them for 3 years but since they were getting older and I have very little family left (basically only 3 family members who are still alive and active with communicating with me) they asked me "to move on" after my sister acquired so lower leg problems and they basically wanted their house back despite me hiring morning and evening caregivers 7 days a week along with having a great home health agency come in to change my catheter and any skilled nursing needs -- especially after acquiring a Stage III wound in 2009 which kept me bedridden but during those 3 years my husband and I were basically homebodies anyway so with home health agency skilled nursing help and my husband's knowledge of wounds and caring for my wound... my wound healed and my husband and I getting ready to start our active life again with me up in the chair only for him to completely unexpectedly pass away one morning. THIS IS ALL IRRELEVANT INFORMATION but it does seem to fall into the story. Sorry!
Anyway, I have continued to irrigate and instill my Foley catheter with the sterile water/vinegar every morning and evening. I tried Renacidin for a brief amount of time but it was too caustic for my bladder and, for the first time in my life, I had blood in my urine despite diluting it. Since I had to move and the home health agency I have now (and the only one I could find to take me on as a Medicare patient and as a quad) is poor at getting supplies to me... I was wondering if I could use distilled water in place of sterile water.
I just recently moved back to Arizona where my husband and I lived for numerous reasons and the nurse who came to change my catheter asked me why I was not using saline. I just responded that I had always used sterile water... even way back in the 1980s when I had a problem with sediment. It did not occur to me to ask my urologist when I went to see her for the second time since last week after moving back here in January if I could use distilled water because I thought the sterile water would have been delivered to my home by now as it has been a week and a half. I have contacted the agency and, unlike the one I had in Pennsylvania (which put all these agencies down here to shame) who had all of my supplies delivered to me via FedEx the next day or the day after they were ordered and after my nurse's visit to change my catheter. They have not yet responded to my call. They were supposed to start giving me a home health aide 2-3 mornings a week to give my live-in caregiver a break but they haven't even done that yet.
Medicare started making cuts with home health care back in 1999 when they switched to the "Prospective Payment System" whereby I used to get 2 morning CNA visits for 2 hours each morning and 2 evening CNA visits for 2 hours each evening. That got worse and now, I am lucky if I get 3 home health aide visits a week! This occurred just 2 years after my husband and I married. We surely did not expect it and when it got worse over the years we were forced to start hiring our own caregivers. My financial income because of, god forbid I had a job and my husband was an expert in the software manager field working for NASA and other government agencies with good incomes, is now way over me being accepted for any Medicaid help. Been there, done that.
I am between a rock and a hard place because I make too much money for Medicaid help but not quite enough for 24-hour care. For the first time in my life I was lucky to find a live-in caregiver whereby she accepts when I can pay her and I pay for her room and board. This is all irrelevant to this thread also and please do not respond to anything but my question regarding using distilled water.
One last thing... if you are wondering why I am using a Foley catheter after 36 1/2 years... it is a "why fix what is not broke" issue. My urologist says that my bladder looks like a bladder that has never had an indwelling catheter and it for 36 1/2 years... and like an able-bodied persons bladder. :thumbsup: I drink a lot of water all day long [understatement] but I have had to be careful since a little over a couple of years ago I was hospitalized for drinking myself into the hospital by drinking too much water to wash out my all of my electrolytes and felt really sick. I was only hospitalized for a couple days to get probiotics in me and then have been okay. I now add Powerade to my drink jug and add cranberry juice to some of my water in the morning or evening.
Sorry for all the extra information that is completely irrelevant to this question!
Thanks in advance!
~Lori
0 commentaires:
Enregistrer un commentaire