Tom here:
I finally got around to putting on the leg bag that came home with me from the hospital. I hadn't bothered with it, thinking I was tethered to the toilet anyway, and any clothes that I wear would probably get wet, since the diaper sometimes leaks where the catheter tube comes out of the side.
Well, I was wrong. I hadn't realized the value of even 45 minutes of unfettered freedom! Instead of being stuck in the bathrobe and pajamas I have been wearing (altered in the front so the tube could get out) I was able to dress in sweat pants and a sweat shirt, put on and hat and a vest and go for a good walk on a bright, sunny winter afternoon. Coming back, I picked up my newspaper and emptied my mailbox... what freedom!
Life is good.
Tom
Wednesday, January 14, 2009
Tom's new blogs
Tom here:
I have started three new blogs of my own. They can be reached at
tomremembers.blogspot.com
tomrambles.blogspot.com
tomfishes.blogspot.com
This blog actually belongs to Nathanael, that is why I start every post with "Tom Here" since the computer will say it was posted by Nathanael.
At the moment, only the tomremembers site has any posts. The blog itself is titled "450 East" and is intended to be the memoir that most of us put off until it is too late. Its interest and accuracy will be dramatically improved if friends and family who have shared their lives with me comment about details and add their own memory of events related.
I doubt very much I will post to it every day after things settle down. Right now I have a little bit of time on my hands, but it will be something that will grow at its own pace.
The other two blogs will be for commentary on what is happening (tomrambles) and descriptions of past and future fishing trips along with pictures, flies, etc. (tomfishes). There will be many pictures in all the blogs once I get this software figured out. I have lots of pictures.
Tom
I have started three new blogs of my own. They can be reached at
tomremembers.blogspot.com
tomrambles.blogspot.com
tomfishes.blogspot.com
This blog actually belongs to Nathanael, that is why I start every post with "Tom Here" since the computer will say it was posted by Nathanael.
At the moment, only the tomremembers site has any posts. The blog itself is titled "450 East" and is intended to be the memoir that most of us put off until it is too late. Its interest and accuracy will be dramatically improved if friends and family who have shared their lives with me comment about details and add their own memory of events related.
I doubt very much I will post to it every day after things settle down. Right now I have a little bit of time on my hands, but it will be something that will grow at its own pace.
The other two blogs will be for commentary on what is happening (tomrambles) and descriptions of past and future fishing trips along with pictures, flies, etc. (tomfishes). There will be many pictures in all the blogs once I get this software figured out. I have lots of pictures.
Tom
Reality Check
Tom here:
I am up again in the wee hours after changing diapers, cleaning and greasing with A&D ointment in an attempt to protect my skin. As I look forward to the possibility of having my catheter removed on Thursday, I looked at our record of urine output and started doing some math.
I have been producing somewhere between 2500 and 3500 cc of urine a day. The volume depends a lot on how much I drink, and how much has been collected be the diapers, but just for the sake of calculations, lets say that after the catheter is removed, I will have to deal with 3000 cc of urine a day.
If I am completely incontinent for a while (something not unlikely, since I have been beat up by a month of catheter wear) I will be dealing with three to four times as much urine as I have dealt with with the leak. I may never make it out of the bathroom! This was my father's situation, and the reason he wore an external catheter. If I am able to hold 100 cc of urine in my bladder before I start leaking, I will have to urinate 30 times a day, or a little more than once an hour. Sounds doable except at night. I have noticed that my output increases as much as four or five times when sleeping, so the frequency of urination would increase to the same extent.... I could never fall asleep.
As my ability to hold more in my bladder increases, then everything gets better. An average male, in good health, can hold more than 1000 cc in their bladder overnight. But I have never been that average male. Even in my late teens and 20's I was never able to go through a night with out waking up at least twice to use the restroom. I doubt my bladder capacity has ever been more than 600 cc.
On my mission to Austria we typically rented a bedroom in someone's home. I remember one home in Vienna where the Frau of the house confronted me about getting up at night to use the restroom. She didn't want me to do it, she said it was making it difficult for her to sleep. This was where I discovered and starting using what I called the "Happy Bottle" a two quart or two liter container to use at night. (I still do this when camping). I think the Frau suspected that something like that was afoot, and probably disapproved of it as well, but never said anything about it.
Anyway, all of these things will have to be worked out by seeing what happens. And since we've gone this far in this journey together, I will keep you posted. After all, I suspect many of you following this blog are males, wondering if you will be next to deal with this stuff, so you have a built in interest (so to speak).
I will start getting some answers tomorrow night (I hope).
Tom
I am up again in the wee hours after changing diapers, cleaning and greasing with A&D ointment in an attempt to protect my skin. As I look forward to the possibility of having my catheter removed on Thursday, I looked at our record of urine output and started doing some math.
I have been producing somewhere between 2500 and 3500 cc of urine a day. The volume depends a lot on how much I drink, and how much has been collected be the diapers, but just for the sake of calculations, lets say that after the catheter is removed, I will have to deal with 3000 cc of urine a day.
If I am completely incontinent for a while (something not unlikely, since I have been beat up by a month of catheter wear) I will be dealing with three to four times as much urine as I have dealt with with the leak. I may never make it out of the bathroom! This was my father's situation, and the reason he wore an external catheter. If I am able to hold 100 cc of urine in my bladder before I start leaking, I will have to urinate 30 times a day, or a little more than once an hour. Sounds doable except at night. I have noticed that my output increases as much as four or five times when sleeping, so the frequency of urination would increase to the same extent.... I could never fall asleep.
As my ability to hold more in my bladder increases, then everything gets better. An average male, in good health, can hold more than 1000 cc in their bladder overnight. But I have never been that average male. Even in my late teens and 20's I was never able to go through a night with out waking up at least twice to use the restroom. I doubt my bladder capacity has ever been more than 600 cc.
On my mission to Austria we typically rented a bedroom in someone's home. I remember one home in Vienna where the Frau of the house confronted me about getting up at night to use the restroom. She didn't want me to do it, she said it was making it difficult for her to sleep. This was where I discovered and starting using what I called the "Happy Bottle" a two quart or two liter container to use at night. (I still do this when camping). I think the Frau suspected that something like that was afoot, and probably disapproved of it as well, but never said anything about it.
Anyway, all of these things will have to be worked out by seeing what happens. And since we've gone this far in this journey together, I will keep you posted. After all, I suspect many of you following this blog are males, wondering if you will be next to deal with this stuff, so you have a built in interest (so to speak).
I will start getting some answers tomorrow night (I hope).
Tom
Tuesday, January 13, 2009
More on Catheters
Tom here:
Yesterday I called Bard Medical Division, the maker of my catheter, and tried to get in touch with their R&D department and tell them about my idea for catheter that actually works, because it controls both in internal urine and any external leaking with the addition of an external catheter. I talked to a nice lady in charge of product complaints, she took my number and said "I will try to transfer you to R&D" which didn't work and I was eventually disconnected. I never received the call back, and will try again today.
I don't know what the state of the art is in external catheters, but the basic idea is very familiar to me since my Dad wore one for the last 14 years of his life and in the final two years I would help my mother install it when Dad's dementia robbed him of the ability to do it himself. Basically it is a large, condom like sheath, the outer part collects the urine and sends it to a collection bag, the inner part is rolled up just like a condom, then rolled onto the member which helps keep it in place and protect the area from urine. A strap kept it all in place.
It had to be cleaned everyday and was a hassle, but a much better alternative that diapers, since my Dad's surgery left him without a sphincter (the barbarians) and he would have been in the same situation I am now with my catheter leak... no possible relief from urine exposure.
I also talked to my doctor's nurse about this issue, she said catheter leaks are very common.
With all of my conversations, I kept getting the feeling that the people I was talking to didn't really get it. I guess none of them have had to live with a leaky catheter for a month. This is a BIG deal. Thousands of dollars and hundreds of nurse hours are lost dealing with something that could be fixed. Not to mention the suffering of the patient, up every two hours changing pads and diapers and trying to keep a rash at bay. Fix it!
I'll keep trying, but I get the feeling it might take a more persuasive voice than mine to get the company to pay attention.
Oh, to you ladies out there, you might be pleased to know that I am using Maxi-Pads to extend the life of my "brief" (nurses word for a diaper when talking to patient. When talking to another nurse it is a diaper). Yes, I am getting to enjoy a bit of your world. If you feel in some strange way revenged, that is fine with me.
Tom
Yesterday I called Bard Medical Division, the maker of my catheter, and tried to get in touch with their R&D department and tell them about my idea for catheter that actually works, because it controls both in internal urine and any external leaking with the addition of an external catheter. I talked to a nice lady in charge of product complaints, she took my number and said "I will try to transfer you to R&D" which didn't work and I was eventually disconnected. I never received the call back, and will try again today.
I don't know what the state of the art is in external catheters, but the basic idea is very familiar to me since my Dad wore one for the last 14 years of his life and in the final two years I would help my mother install it when Dad's dementia robbed him of the ability to do it himself. Basically it is a large, condom like sheath, the outer part collects the urine and sends it to a collection bag, the inner part is rolled up just like a condom, then rolled onto the member which helps keep it in place and protect the area from urine. A strap kept it all in place.
It had to be cleaned everyday and was a hassle, but a much better alternative that diapers, since my Dad's surgery left him without a sphincter (the barbarians) and he would have been in the same situation I am now with my catheter leak... no possible relief from urine exposure.
I also talked to my doctor's nurse about this issue, she said catheter leaks are very common.
With all of my conversations, I kept getting the feeling that the people I was talking to didn't really get it. I guess none of them have had to live with a leaky catheter for a month. This is a BIG deal. Thousands of dollars and hundreds of nurse hours are lost dealing with something that could be fixed. Not to mention the suffering of the patient, up every two hours changing pads and diapers and trying to keep a rash at bay. Fix it!
I'll keep trying, but I get the feeling it might take a more persuasive voice than mine to get the company to pay attention.
Oh, to you ladies out there, you might be pleased to know that I am using Maxi-Pads to extend the life of my "brief" (nurses word for a diaper when talking to patient. When talking to another nurse it is a diaper). Yes, I am getting to enjoy a bit of your world. If you feel in some strange way revenged, that is fine with me.
Tom
Saturday, January 10, 2009
Rising From the Dead
Tom here:
This is what it is like everytime I wake up from a nap or from sleep: The first thing I am aware of is a pain in my abdomen and that my legs and feet seem to be paralyzed. I think the Castle is under siege, and wonder where my nurses and armed guard are and why they aren't helping me get up and why they aren't they protecting me. Then I remember the evil forces that want me dead.
Slowly I start to become aware of my real surroundings, that I am Tom, and at home, and no one is going to help me, and no one wants me dead. I work to get my self out from under the covers, I swing my numb paralyzed legs over the bed, and let their weight pull down as I push myself up. I sit on the edge of the bed and continue to try to regain reality. My legs feel paralyzed because of the edema and swelling left from weeks ago, something that will take time and movement fix. They aren't paralyzed, but they feel like stumps as I lumber into the bathroom and start the diaper routine which includes cold wipes and creams and new diapers and pads. Then I empty the foley and measure and record, and I have pretty much made it back to reality. I am up for a while, on the computer (like now) tired, but not sleepy, and not anxious to go through the whole experience again.
That is exactly what it is like.
Tom
This is what it is like everytime I wake up from a nap or from sleep: The first thing I am aware of is a pain in my abdomen and that my legs and feet seem to be paralyzed. I think the Castle is under siege, and wonder where my nurses and armed guard are and why they aren't helping me get up and why they aren't they protecting me. Then I remember the evil forces that want me dead.
Slowly I start to become aware of my real surroundings, that I am Tom, and at home, and no one is going to help me, and no one wants me dead. I work to get my self out from under the covers, I swing my numb paralyzed legs over the bed, and let their weight pull down as I push myself up. I sit on the edge of the bed and continue to try to regain reality. My legs feel paralyzed because of the edema and swelling left from weeks ago, something that will take time and movement fix. They aren't paralyzed, but they feel like stumps as I lumber into the bathroom and start the diaper routine which includes cold wipes and creams and new diapers and pads. Then I empty the foley and measure and record, and I have pretty much made it back to reality. I am up for a while, on the computer (like now) tired, but not sleepy, and not anxious to go through the whole experience again.
That is exactly what it is like.
Tom
Tom whines a little...
Tom here:
There is nothing in this world more worthless than a leaky catheter!!! You get the the WORST of both worlds! You have to deal with the unpleasantness of the catheter, and all of the hassles of uncontrolled urine.
The solution seems obvious, a device that is BOTH external and internal catheter. The external device collects the leak and directs it into the Foley bag.
You medical geniuses out there, go to work! Invent this and make a lot of money using my idea, I don't care. But FIX it!
So much for the soaring profundities of blogging. But I feel better.
Grumbling by my computer,
Tom
There is nothing in this world more worthless than a leaky catheter!!! You get the the WORST of both worlds! You have to deal with the unpleasantness of the catheter, and all of the hassles of uncontrolled urine.
The solution seems obvious, a device that is BOTH external and internal catheter. The external device collects the leak and directs it into the Foley bag.
You medical geniuses out there, go to work! Invent this and make a lot of money using my idea, I don't care. But FIX it!
So much for the soaring profundities of blogging. But I feel better.
Grumbling by my computer,
Tom
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