I can't believe this has happened to me but it has and I have not been able to get any help or any recourse.
BEWARE - Lengthy story:
I am a C 4/5 complete Quad 37 years post next month (October 19). I have had a Foley catheter all of that time with virtually no problems except needing to have bladder stones removed 3 different times over a 20 year time period. Each and every time they were easily removed and all was good. I never needed a urologist until 2006 and that was my first experience with bladder stones (by finding a female urologist in 2005/2006). She has been the only one to have two happy outpatient procedure done to remove bladder stones and she always did a great job.
*** My urologist was also always amazed (after each and every time of going in my bladder to remove the stones) that my bladder and urethra were always in "pristine" condition after having a Foley catheter for over 3 decades. But I always had the best of care.
Prior to January of this year I have always lived with a family member (grandparents, sister, spouse and then sister and brother-in-law) and I have always had easy foley catheter changes. My "comfort" of living in to an abrupt end after my beloved late husband passed away in June of 2012 (and who always kept me out of harm's way but I always had good home health agency nurses anyway). I then went to live with my sister and brother-in-law and was getting great care there by hiring morning and evening caregivers (who were all great) and having a great home health agency for catheter changes, any wound care needs, ordering supplies, etc.
In August of 2015 my sister and brother-in-law's daughters (my two nieces in their 40s) began wanting to have "family meetings." I got nervous about this but apparently despite all the care I was getting my sister and brother-in-law wanted me to "move on" because they "wanted their house back to themselves" and they were getting older and my sister didn't want the responsibilities that she was helping me with beyond home healthcare (finances, doctor appointments a couple times a year, getting my medications and refilling medication container). After losing my husband I was in shock yet again for a second time in just a 3-year time period of having to move. This time I had nowhere to go and, having always been an active member of the community I lived in, I WAS NOT going to go into a nursing home but my sister and brother-in-law saw no problem putting me in one. Neither my two sisters, two nieces and a couple family members were willing to continue to ~share they care.~
To make a long story short, on my own I found a great live-in caregiver and since I still have the Golden Retriever that my husband and I adopted in 2009 and whom I love with all my heart (and would die for her) I took that opportunity. My Golden daughter has been with me through my husband's death, through trying to find a place to live after my sister and brother-in-law wanting me to move on and I would die before being separated from her. She is almost 10 years old and that scares me to death in itself. I have always had dogs and can't imagine life without them.
Like I said, I have always had a home healthcare agency nurse change my Foley catheter and have never had a problem. But the first nurse who came to change my catheter (after moving back to Tucson Arizona where my husband and I had been living for 11 years prior to his passing) blew up the balloon in my urethra stretching it very badly. At first I thought everything was okay and the nurse left but within less than 10 minutes after her leaving I knew something was terribly wrong. This is because I have been always able to tell when I can't urinate through my catheter and the AD begins to start.
We called the nurse to come back and she wasn't happy about it and did not believe that the balloon could be sitting in my urethra (which it was). Before coming back she accused my caregiver of most probably seeing "flesh" down by my meatus because, according to her, there is a lot of "flesh" down there. Well, my caregiver has been in the caregiving field for 28 years (even though she has never had to watch a catheter change) and is not stupid and I myself do something was very wrong. My caregiver and knew a QUARTER SIZE round ball sitting right there in my urethra and it not being FLESH! Anyway, it took this nurse 45 minutes to get back to my house because she had already gotten on the interstate and she had been a very rude and arrogant nurse to begin with (unlike all my previous nurses) so I knew she would probably blame it on a urethral spasm and it wouldn't be her fault but mine. After she came back and changed the catheter correctly this time I thought all was well.
I did not think this was going to be a long-term problem but it became one. For the first time in my life I began to have a leaking around my catheter. Although this is the first time in my life I have ever had a nurse or anyone stretch my urethra!
My urologist and I decided to try increasing my current dosage of Oxybutynin to the highest dose for trying different anticholinergics (bladder spasm medications) to see if that would help but it didn't. I was also hoping that my urethra would eventually just repair itself but it didn't. My urologist finally performed a cystoscopy on July 6 whereby she confirmed that my urethra was indeed stretched.
Now, since my urethra has been stretched so badly I can no longer irrigate or instill without it all drooling out my urethra. It just took ONE negligent nurse to cause all of this.
Not only has this occurrence caused urine to leak around my catheter (causing other problems) but it took something else away from me. Prior to this happening I used to perform a daily irrigation as well as daily bladder "instilling" using sterile water/white vinegar solution to cut down on sediment that began to increase after acquiring a nasty bacteria that has decided to reside in my bladder and not go away (Proteus Mirabilis). It began around 2011 when my husband was still alive and I probably got it from having a bowel accident.
I was not having a sediment problem prior to 2011 but when it began my husband suspected that Proteus Mirabilis may have come back. I say "come back" because it had been president in 2006 but my urologist was able to get rid of it back then using IV antibiotics and removing bladder stones. I also had a CT scan in late 2011 which confirmed bladder stones being present again. Then my husband passed away. My urologist removed 10 bladder stones in 2012 as well as putting me on IV antibiotics and suggesting a 10 day Gentamicin wash to try to get rid of that nasty clinging bacteria. I then moved across the country to live with my sister and brother-in-law. My urologist and not suggest a follow-up culture before leaving but after I got settled in my sister and brother-in-law's home sediment came back with a vengeance and, sure enough, the Proteus had come back and it has not gone away since and refuses to go away no matter what we try.
To add insult to injury the urine that began leaking around my catheter finally got to my skin and began scalding my skin (my buttocks and surrounding areas) so I have been bedridden for the last 2 1/2 months. My urologist of 10 years has suggested that I now see another urologist at the University who has more experience with either a bladder neck closure or Botox injections or whatever to resolve my problem which has made my life a living hell.
I have tried to see if there was any recourse that could be taken against this nurse and there is the possibility of that. But to add further insult to injury, I am now with a different agency and a week and a half ago when my catheter was changed my nurse did the same thing! Making the problem even worse (stretching the urethra by blowing up the balloon in the urethra). But at least this time the balloon was not left in my ear is for 45 minutes.
I can't believe that, prior to February 1 this year, I was super healthy and had no problems when living with my husband or family and then when I get out on my own and had the first home health agency nurse (who says she has changed hundreds of catheters back when that happened in late January or early February) do this to me.
I don't want to have major surgery done and I feel so alone now that my husband is gone and I am no longer living with the safety of any family and having the great nurses that I had before having to move out of the area to start living on my own.
I have looked up all the options but I don't like any of them. Everything from bladder neck closure and switching to a Supra pubic catheter to bladder augmentation.
I AM wondering if Botox might work for me or the "duette" catheter that I read about online several months ago and then just read about it here.
I just want to get back to where I was WITHOUT A STRETCHED URETHRA but that isn't going to
happen. :-( Further, the Proteus Mirabilis isn't going anywhere which creates a great deal of sentiment that often clogs my catheter. I was able to keep on top of that by "instilling" daily but now my stretched urethra won't allow that.
Because this has taken up 8 months of my life and caused me to be bed ridden I have also lost my identity. I am also still somewhat grieving for my husband that I am a realist and know that life goes on. All I want is to get good care and always have a dog in my life. And not end up in a nursing home!
After losing my husband and now not being able to live with any family member (and I only have a few family members left as my parents and grandparents have passed away) my Golden daughter is the reason I go on every day.
BEWARE - Lengthy story:
I am a C 4/5 complete Quad 37 years post next month (October 19). I have had a Foley catheter all of that time with virtually no problems except needing to have bladder stones removed 3 different times over a 20 year time period. Each and every time they were easily removed and all was good. I never needed a urologist until 2006 and that was my first experience with bladder stones (by finding a female urologist in 2005/2006). She has been the only one to have two happy outpatient procedure done to remove bladder stones and she always did a great job.
*** My urologist was also always amazed (after each and every time of going in my bladder to remove the stones) that my bladder and urethra were always in "pristine" condition after having a Foley catheter for over 3 decades. But I always had the best of care.
Prior to January of this year I have always lived with a family member (grandparents, sister, spouse and then sister and brother-in-law) and I have always had easy foley catheter changes. My "comfort" of living in to an abrupt end after my beloved late husband passed away in June of 2012 (and who always kept me out of harm's way but I always had good home health agency nurses anyway). I then went to live with my sister and brother-in-law and was getting great care there by hiring morning and evening caregivers (who were all great) and having a great home health agency for catheter changes, any wound care needs, ordering supplies, etc.
In August of 2015 my sister and brother-in-law's daughters (my two nieces in their 40s) began wanting to have "family meetings." I got nervous about this but apparently despite all the care I was getting my sister and brother-in-law wanted me to "move on" because they "wanted their house back to themselves" and they were getting older and my sister didn't want the responsibilities that she was helping me with beyond home healthcare (finances, doctor appointments a couple times a year, getting my medications and refilling medication container). After losing my husband I was in shock yet again for a second time in just a 3-year time period of having to move. This time I had nowhere to go and, having always been an active member of the community I lived in, I WAS NOT going to go into a nursing home but my sister and brother-in-law saw no problem putting me in one. Neither my two sisters, two nieces and a couple family members were willing to continue to ~share they care.~
To make a long story short, on my own I found a great live-in caregiver and since I still have the Golden Retriever that my husband and I adopted in 2009 and whom I love with all my heart (and would die for her) I took that opportunity. My Golden daughter has been with me through my husband's death, through trying to find a place to live after my sister and brother-in-law wanting me to move on and I would die before being separated from her. She is almost 10 years old and that scares me to death in itself. I have always had dogs and can't imagine life without them.
Like I said, I have always had a home healthcare agency nurse change my Foley catheter and have never had a problem. But the first nurse who came to change my catheter (after moving back to Tucson Arizona where my husband and I had been living for 11 years prior to his passing) blew up the balloon in my urethra stretching it very badly. At first I thought everything was okay and the nurse left but within less than 10 minutes after her leaving I knew something was terribly wrong. This is because I have been always able to tell when I can't urinate through my catheter and the AD begins to start.
We called the nurse to come back and she wasn't happy about it and did not believe that the balloon could be sitting in my urethra (which it was). Before coming back she accused my caregiver of most probably seeing "flesh" down by my meatus because, according to her, there is a lot of "flesh" down there. Well, my caregiver has been in the caregiving field for 28 years (even though she has never had to watch a catheter change) and is not stupid and I myself do something was very wrong. My caregiver and knew a QUARTER SIZE round ball sitting right there in my urethra and it not being FLESH! Anyway, it took this nurse 45 minutes to get back to my house because she had already gotten on the interstate and she had been a very rude and arrogant nurse to begin with (unlike all my previous nurses) so I knew she would probably blame it on a urethral spasm and it wouldn't be her fault but mine. After she came back and changed the catheter correctly this time I thought all was well.
I did not think this was going to be a long-term problem but it became one. For the first time in my life I began to have a leaking around my catheter. Although this is the first time in my life I have ever had a nurse or anyone stretch my urethra!
My urologist and I decided to try increasing my current dosage of Oxybutynin to the highest dose for trying different anticholinergics (bladder spasm medications) to see if that would help but it didn't. I was also hoping that my urethra would eventually just repair itself but it didn't. My urologist finally performed a cystoscopy on July 6 whereby she confirmed that my urethra was indeed stretched.
Now, since my urethra has been stretched so badly I can no longer irrigate or instill without it all drooling out my urethra. It just took ONE negligent nurse to cause all of this.
Not only has this occurrence caused urine to leak around my catheter (causing other problems) but it took something else away from me. Prior to this happening I used to perform a daily irrigation as well as daily bladder "instilling" using sterile water/white vinegar solution to cut down on sediment that began to increase after acquiring a nasty bacteria that has decided to reside in my bladder and not go away (Proteus Mirabilis). It began around 2011 when my husband was still alive and I probably got it from having a bowel accident.
I was not having a sediment problem prior to 2011 but when it began my husband suspected that Proteus Mirabilis may have come back. I say "come back" because it had been president in 2006 but my urologist was able to get rid of it back then using IV antibiotics and removing bladder stones. I also had a CT scan in late 2011 which confirmed bladder stones being present again. Then my husband passed away. My urologist removed 10 bladder stones in 2012 as well as putting me on IV antibiotics and suggesting a 10 day Gentamicin wash to try to get rid of that nasty clinging bacteria. I then moved across the country to live with my sister and brother-in-law. My urologist and not suggest a follow-up culture before leaving but after I got settled in my sister and brother-in-law's home sediment came back with a vengeance and, sure enough, the Proteus had come back and it has not gone away since and refuses to go away no matter what we try.
To add insult to injury the urine that began leaking around my catheter finally got to my skin and began scalding my skin (my buttocks and surrounding areas) so I have been bedridden for the last 2 1/2 months. My urologist of 10 years has suggested that I now see another urologist at the University who has more experience with either a bladder neck closure or Botox injections or whatever to resolve my problem which has made my life a living hell.
I have tried to see if there was any recourse that could be taken against this nurse and there is the possibility of that. But to add further insult to injury, I am now with a different agency and a week and a half ago when my catheter was changed my nurse did the same thing! Making the problem even worse (stretching the urethra by blowing up the balloon in the urethra). But at least this time the balloon was not left in my ear is for 45 minutes.
I can't believe that, prior to February 1 this year, I was super healthy and had no problems when living with my husband or family and then when I get out on my own and had the first home health agency nurse (who says she has changed hundreds of catheters back when that happened in late January or early February) do this to me.
I don't want to have major surgery done and I feel so alone now that my husband is gone and I am no longer living with the safety of any family and having the great nurses that I had before having to move out of the area to start living on my own.
I have looked up all the options but I don't like any of them. Everything from bladder neck closure and switching to a Supra pubic catheter to bladder augmentation.
I AM wondering if Botox might work for me or the "duette" catheter that I read about online several months ago and then just read about it here.
I just want to get back to where I was WITHOUT A STRETCHED URETHRA but that isn't going to
happen. :-( Further, the Proteus Mirabilis isn't going anywhere which creates a great deal of sentiment that often clogs my catheter. I was able to keep on top of that by "instilling" daily but now my stretched urethra won't allow that.
Because this has taken up 8 months of my life and caused me to be bed ridden I have also lost my identity. I am also still somewhat grieving for my husband that I am a realist and know that life goes on. All I want is to get good care and always have a dog in my life. And not end up in a nursing home!
After losing my husband and now not being able to live with any family member (and I only have a few family members left as my parents and grandparents have passed away) my Golden daughter is the reason I go on every day.
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