... What it is, ain't exactly clear.
Things have been going along pretty smoothly with the recovery but a couple weeks ago I was having more problems with endurance and energy. I could go for a few hours but then it was like hitting a wall and I had to stop for a nap. I brought this up at my two-month meeting with my surgeon and he said I should see my regular doctor about this one. My doctor was booked up so I got appointment with the on-call doctor. One thing lead to another and before I new it I was headed for the ER to check for blood clot or heart attack.
The ER doctor couldn't find any evidence of heart attack or blood clot from either the EKG, x-ray, CT scan or blood tests - but he wanted to admit me anyway. I should have said, "NO". But I didn't and I spent the next three days in the cardio ward of the hospital; feeling totally silly and very, VERY healthy.
While I was there, they ran every test they could think of: Stress test with pre and post scans. Heart ultrasound. It seemed like everyone on the hospital listened to my chest and heart. They kept a heart monitor on me 24/7 and every now and then brought in stacks of printout showing; ".. nothing unusual". They brought in specialists and scheduled consults and in the end all they had was something called a Sed Rate (ESR) that was too high. So they reluctantly sent me home. The good part is that now I know my heart and lungs are in tip top shape. Not a bad thing to know.
A high Sed Rate is a non-specific indication of inflamation somewhere in the body. Antibodies attach to the red blood cells causing them to clump and when the blood is placed in a tube, these clumps of blood cells settle out faster than individuals.
I have seen my regular doctor again and been tested again. The ESR has come down but is still above normal. I have also been having occasional bouts with chills and fever (99 - 101 range) that worries him and has led to more blood and urine tests along with a full abdomal CT scan (first since surgery). AND a follow-up visit with my Oncologist (this was supposed to happen about now anyway so I'm not too worried by it).
MY concern is still almost nightly night sweats - sometimes 3 or 4 times a night. These are really a pain but they don't seem to concern the doctors. Another one of my theories that hasn't gotten much traction with doctors is that all these problems seemed to follow the removal of that second catheter. I worked as a microbiology tech for many years and think I understand sterile technique. Removing that catheter amounted to pulling a rubber tube that had been inside my bladder, through my gut space and out the hole in my side. Who knows what intestinal organisms might have stuck to it from those still lurking around in my neo-bladder. Who knows what it might have inoculated as it passed through. Well, I'm not a doctor.
But I really can't worry too much about this. I've decided that my job is to get myself back in shape by starting to do the things I would normally do. Like splitting wood, clearing snow, walking, bowling, and exercising. Maybe umping a game or two at our indoor baseball park. After all, I have less than two months before I need to be in shape to outrun a 14 year-old from first to third base on a tripple.
Friday, February 4, 2011
Thursday, January 6, 2011
How it works (Part ll).
Progress with Training Myself to Use This 'New' Body. (Part II)
It's been a month since the removal of the first (Foley) catheter (December 6, 2010) and since I first had to take control of things. I retained the second (backup) catheter for another TWO weeks so I could sleep through the night without having to get up every hour and push.
More than just a Neo-Bladder.
The Neo-bladder tends to steal the show because, although it is quite common in medicine, it is not very widely known about in society. Because of this, and differences in operation that I have mentioned before, I have concentrated mostly on peeing - and the problems (and triumphs) related to learning how to pee all over again. I had a bad week between Christmas and New Years where my kidneys and my intestines reminded me that they have been profoundly affected as well. This surgery effected my bladder, yes, but it also took a chunk out of my intestine and relocated - and drastically reshaped - that piece with all it's blood supply, nerves, connective tissue. Moved it down in my abdomen about a foot. Then they had to reconnect the two ends of my intestine, which must have involved some re-routing and repositioning nerves, blood supply, and connective tissue (and possibly reorienting things in my abdomen so I may need to use different muscles to 'push'. )
This surgery removed my prostrate with it's blood supply and nerves along with some lymph nodes (who can't spare a couple nodes). Even though the surgeon practiced minimal invasive techniques and nerve sparing procedures, there is a small probability that my sex organs have been effected.
There's a reason this surgery took five hours.
Be that as it may....
Since the art of peeing is what has changed the most let's talk about that. (we've all had bouts with diarrhea so there's nothing new there)
NOTE: I have never worn - nor do I intend to wear - a diaper/depends. For this I am extremely thankful.
After the first week without the Foley catheter I stopped using maxi-pads during the day. I was comfortable in my continence and had no problem getting to a bathroom before that little leak fealing tells me my bladder is probably full. I do wear a couple folds of TP or tissue as insurance. As far as I can tell the exercises (Kegels) have been building up the muscle tone of that sphincter muscle so that I don't have to conciously 'hold it' as my bladder fills. As the bladder fills the pressure builds to a point where the sphincter allows a brief leak - which I feel imediately (somehow) and I can now hold it by contracting some muscles down there with plenty of time to make it to a bathroom (usually counted in minutes). This is great progress because for the first few days when I would feel this leak I had to get to a toilet and was lucky if I could hold it till I was seated all the way. Exercises work!
How to Pee:
From the very beginning I haven't 'needed' to use the hand pressure on the outside of my abdomen. Most of the work is done by gravity - after sitting down, on the pot, I just lean forward a little, relax, and let go. I am rewarded with pretty good flow. I have found that I can use abdominal muscles to apply pressure forward to squeeze the bladder, thereby providing all the help needed to help the flow and complete the drainage. I think George Burns said that to an old person, a good pee is better than sex. I'll hold off judgement on that one but I have to say, at this point, a good pee is very nice.
I get the feeling my new bladder has multiple "chambers" because I can relax and push until nothing more comes but then after I stop pushing for a few seconds I can relax and push again and get out a bunch more. Like the top chamber is using gravity to drain into the lower chamber which in turn is in front of this muscle ( or something like that). If I don't get a good second push I will try the manual pushing down with my hand and that usually gets a little more. Usually after 3 or 4 pushes I have it all.
Where do I stand on sitting:
I have been told all along that from now on I will have to sit to pee. Sitting is certainly fine with me - it's a very common thing to do - but in the back of my mind I think about how much time I spend tending my developing woodland (farm) and how it's a lot easier to pee on a tree (standing) than to drop trow and squat (especially in the winter). So the other day I was taking a measurement to see how much larger my neo-bladder had become and I thought I'd try standing. It worked just fine. I got nearly 300 cc's (big increase from the 100cc's the first week). But it did take a very large effort - pressing with those abdominal muscles - so I'm not sure I'll do that again for a while.
So the sitting requirement is not strictly true. But it is far easier to pee sitting down. The difference is when sitting, gravity takes care of most of the work, the muscles just help out a little. Standing; it's all muscle, no help from gravity. Maybe that will be easier as I heal and get stronger, but for now it pretty much just makes things hurt.
Help me make it through the night:
When I was first rid of the Foley Catheter and had to control things on my own, I began the pushing and the kegeling in ernest. By the end of the day I was very tired and sore down there so it was a welcome relief to just plug the Supra Pelvic Catheter (SPC) into a bag and sleep through the night. This Catheter ran from somewhere in my neo-bladder to a hole in my side next to my belly button. It apparently created a low pressure alternative path for the urine to move out of my bladder and I never had to go the normal way (unless the SPC plugged in the night).
I kept the SPC for two weeks after the Foley was removed and after two weeks I was more than ready for it to go. It was beginning to hurt (where it was stitched in place to my skin). My muscles were no longer sore, and I was ready to start taking control of my future.
The SBC was removed on Tuesday, December 21, 2011in a quick office call where a nurse deflated the balloon (holding it in my bladder), cut the string that was holding it to my skin and pulled it out. Nothing to it. A small dressing over the hole in my stomach (it will heal surprisingly fast) and call us if there are any problems.
The first night I had quite a bit of trouble getting my usual good flow and I went through a couple maxi-pads (nothing serious). It seemed like I couldn't get any pressure to push out the pee, I thought maybe the hole from the catheter hadn't healed shut yet.
The next day was pretty much normal and that night seemed to go much better. I was setting an alarm for every 2 hours in order to try to match my daytime 'range' but it didn't work very well. I couldn't hear the alarm and everyone else in the house could. The other problem with alarms is that they tend to go off just when I'm getting to deap sleep. After a couple days I was suffering from sleep deprivation so I decided to quit the alarms and rely on my normal insomnia to wake me up. This seems to work just fine and I'm not so tired all day.
So, nights aren't really much diferent than days. I wear a pad just to be safe but I'm waking up more than often enough. Some people say to not drink as much at night but I don't see that this makes much diference (day or night).
Now if I can just get rid of these night sweats....
It's been a month since the removal of the first (Foley) catheter (December 6, 2010) and since I first had to take control of things. I retained the second (backup) catheter for another TWO weeks so I could sleep through the night without having to get up every hour and push.
More than just a Neo-Bladder.
The Neo-bladder tends to steal the show because, although it is quite common in medicine, it is not very widely known about in society. Because of this, and differences in operation that I have mentioned before, I have concentrated mostly on peeing - and the problems (and triumphs) related to learning how to pee all over again. I had a bad week between Christmas and New Years where my kidneys and my intestines reminded me that they have been profoundly affected as well. This surgery effected my bladder, yes, but it also took a chunk out of my intestine and relocated - and drastically reshaped - that piece with all it's blood supply, nerves, connective tissue. Moved it down in my abdomen about a foot. Then they had to reconnect the two ends of my intestine, which must have involved some re-routing and repositioning nerves, blood supply, and connective tissue (and possibly reorienting things in my abdomen so I may need to use different muscles to 'push'. )
This surgery removed my prostrate with it's blood supply and nerves along with some lymph nodes (who can't spare a couple nodes). Even though the surgeon practiced minimal invasive techniques and nerve sparing procedures, there is a small probability that my sex organs have been effected.
There's a reason this surgery took five hours.
Be that as it may....
Since the art of peeing is what has changed the most let's talk about that. (we've all had bouts with diarrhea so there's nothing new there)
NOTE: I have never worn - nor do I intend to wear - a diaper/depends. For this I am extremely thankful.
After the first week without the Foley catheter I stopped using maxi-pads during the day. I was comfortable in my continence and had no problem getting to a bathroom before that little leak fealing tells me my bladder is probably full. I do wear a couple folds of TP or tissue as insurance. As far as I can tell the exercises (Kegels) have been building up the muscle tone of that sphincter muscle so that I don't have to conciously 'hold it' as my bladder fills. As the bladder fills the pressure builds to a point where the sphincter allows a brief leak - which I feel imediately (somehow) and I can now hold it by contracting some muscles down there with plenty of time to make it to a bathroom (usually counted in minutes). This is great progress because for the first few days when I would feel this leak I had to get to a toilet and was lucky if I could hold it till I was seated all the way. Exercises work!
How to Pee:
From the very beginning I haven't 'needed' to use the hand pressure on the outside of my abdomen. Most of the work is done by gravity - after sitting down, on the pot, I just lean forward a little, relax, and let go. I am rewarded with pretty good flow. I have found that I can use abdominal muscles to apply pressure forward to squeeze the bladder, thereby providing all the help needed to help the flow and complete the drainage. I think George Burns said that to an old person, a good pee is better than sex. I'll hold off judgement on that one but I have to say, at this point, a good pee is very nice.
I get the feeling my new bladder has multiple "chambers" because I can relax and push until nothing more comes but then after I stop pushing for a few seconds I can relax and push again and get out a bunch more. Like the top chamber is using gravity to drain into the lower chamber which in turn is in front of this muscle ( or something like that). If I don't get a good second push I will try the manual pushing down with my hand and that usually gets a little more. Usually after 3 or 4 pushes I have it all.
Where do I stand on sitting:
I have been told all along that from now on I will have to sit to pee. Sitting is certainly fine with me - it's a very common thing to do - but in the back of my mind I think about how much time I spend tending my developing woodland (farm) and how it's a lot easier to pee on a tree (standing) than to drop trow and squat (especially in the winter). So the other day I was taking a measurement to see how much larger my neo-bladder had become and I thought I'd try standing. It worked just fine. I got nearly 300 cc's (big increase from the 100cc's the first week). But it did take a very large effort - pressing with those abdominal muscles - so I'm not sure I'll do that again for a while.
So the sitting requirement is not strictly true. But it is far easier to pee sitting down. The difference is when sitting, gravity takes care of most of the work, the muscles just help out a little. Standing; it's all muscle, no help from gravity. Maybe that will be easier as I heal and get stronger, but for now it pretty much just makes things hurt.
Help me make it through the night:
When I was first rid of the Foley Catheter and had to control things on my own, I began the pushing and the kegeling in ernest. By the end of the day I was very tired and sore down there so it was a welcome relief to just plug the Supra Pelvic Catheter (SPC) into a bag and sleep through the night. This Catheter ran from somewhere in my neo-bladder to a hole in my side next to my belly button. It apparently created a low pressure alternative path for the urine to move out of my bladder and I never had to go the normal way (unless the SPC plugged in the night).
I kept the SPC for two weeks after the Foley was removed and after two weeks I was more than ready for it to go. It was beginning to hurt (where it was stitched in place to my skin). My muscles were no longer sore, and I was ready to start taking control of my future.
The SBC was removed on Tuesday, December 21, 2011in a quick office call where a nurse deflated the balloon (holding it in my bladder), cut the string that was holding it to my skin and pulled it out. Nothing to it. A small dressing over the hole in my stomach (it will heal surprisingly fast) and call us if there are any problems.
The first night I had quite a bit of trouble getting my usual good flow and I went through a couple maxi-pads (nothing serious). It seemed like I couldn't get any pressure to push out the pee, I thought maybe the hole from the catheter hadn't healed shut yet.
The next day was pretty much normal and that night seemed to go much better. I was setting an alarm for every 2 hours in order to try to match my daytime 'range' but it didn't work very well. I couldn't hear the alarm and everyone else in the house could. The other problem with alarms is that they tend to go off just when I'm getting to deap sleep. After a couple days I was suffering from sleep deprivation so I decided to quit the alarms and rely on my normal insomnia to wake me up. This seems to work just fine and I'm not so tired all day.
So, nights aren't really much diferent than days. I wear a pad just to be safe but I'm waking up more than often enough. Some people say to not drink as much at night but I don't see that this makes much diference (day or night).
Now if I can just get rid of these night sweats....
Monday, January 3, 2011
A Trip Too Far
Six plus hours in a car may have been too much for my Neo.
Every year we make a pilgrimage to spend Christmas with family in North-Western Wisconsin. It's a tradition. And this year is special because we were joined by our Son and Grand Kids from Chicago. Most of our family hasn't even seen our youngest grand-daughter so we're all excited about the trip.
Fever and Chills:
This hit on Christmas day and took me right down. I was fine during the afternoon and enjoyed the fabulous Christmas feast. I shared the excitement of opening presents and just when people were starting to have fun I was hit by chills and uncontrolable shakes. I begged out of the rest of the evening and drove the short distance to my Sister-in-laws where we were staying. I took a couple tylenol and tucked myself in to the very comfy, warm bed. The shaking soon stopped and I went to sleep.
Emergency:
Maybe this 6 hour trip was more than I bargained for. I've overdone before and I do pay for it. Sunday afternoon Debi convinced me to go to the ER at St Croix Falls (~ 25 miles away) - not a hard sell since I was running a fever something close to 104 and feeling pretty bad.
They took me right in to the ER when we got there and began probing and testing. They took blood and I managed to pee - I learned that I needed to be on a toilet for this to work - no chairs or beds. I took this as good news. They wanted to admit me over night for IV Antibiotics and fluids. I told them I wasn't a normal human and they should take the lab results (at least the urology results) with a grain of salt. I gave them the number of my health provider's 24 hr On-call service so the doctor could talk to someone on my urology team. He came back and said I could leave if I promised to see my doctor on Tuesday. They gave me a big pill to take right there, and a prescription for a weeks worth of antibiotics ( Cypro). This whole process took over four hours but we watched the whole Packer game right there in the ER room, on a nice HD-TV, so we didn't mind.
Back home in Madison:
I slept most of the way home while my wife and son drove. We made an appointment to see my urologist (team) for Tuesday (day after we got back). All the doctors were most worried about my Kidney function. My Creatinin was 2.1 (above normal range ~1.3) so they did an ultrasound Wednesday. No word so I'm assuming either there's nothing wrong or there's nothing they can do till I've finished my current course of antibiotic (Ciproflaxen).
Night Sweats:
The peeing is going fine - over two hours during the day with no leakage - but I can't tell how long I can go at night because I wake up every hour soaking with sweat. So I Pee while I'm changing PJ's or bed cloths. This is so frustrating. I can lay under only a sheet and I'm still soaked. I believe my subconscious is remembering the surgery. Or it could be my body fighting off the infection. For now it means I don't have a fever so I'll take that.
Meanwhile I'm trying to catch up on my writing and sleeping. My appetite is better and I have no fever. My stomach is sorer than it's been for many weeks and Debi says I look like a great-grandpa getting around. I told her; "yes, I am pretty great" .
So I think things are going in the right direction once again.
Every year we make a pilgrimage to spend Christmas with family in North-Western Wisconsin. It's a tradition. And this year is special because we were joined by our Son and Grand Kids from Chicago. Most of our family hasn't even seen our youngest grand-daughter so we're all excited about the trip.
Fever and Chills:
This hit on Christmas day and took me right down. I was fine during the afternoon and enjoyed the fabulous Christmas feast. I shared the excitement of opening presents and just when people were starting to have fun I was hit by chills and uncontrolable shakes. I begged out of the rest of the evening and drove the short distance to my Sister-in-laws where we were staying. I took a couple tylenol and tucked myself in to the very comfy, warm bed. The shaking soon stopped and I went to sleep.
Emergency:
Maybe this 6 hour trip was more than I bargained for. I've overdone before and I do pay for it. Sunday afternoon Debi convinced me to go to the ER at St Croix Falls (~ 25 miles away) - not a hard sell since I was running a fever something close to 104 and feeling pretty bad.
They took me right in to the ER when we got there and began probing and testing. They took blood and I managed to pee - I learned that I needed to be on a toilet for this to work - no chairs or beds. I took this as good news. They wanted to admit me over night for IV Antibiotics and fluids. I told them I wasn't a normal human and they should take the lab results (at least the urology results) with a grain of salt. I gave them the number of my health provider's 24 hr On-call service so the doctor could talk to someone on my urology team. He came back and said I could leave if I promised to see my doctor on Tuesday. They gave me a big pill to take right there, and a prescription for a weeks worth of antibiotics ( Cypro). This whole process took over four hours but we watched the whole Packer game right there in the ER room, on a nice HD-TV, so we didn't mind.
Back home in Madison:
I slept most of the way home while my wife and son drove. We made an appointment to see my urologist (team) for Tuesday (day after we got back). All the doctors were most worried about my Kidney function. My Creatinin was 2.1 (above normal range ~1.3) so they did an ultrasound Wednesday. No word so I'm assuming either there's nothing wrong or there's nothing they can do till I've finished my current course of antibiotic (Ciproflaxen).
Night Sweats:
The peeing is going fine - over two hours during the day with no leakage - but I can't tell how long I can go at night because I wake up every hour soaking with sweat. So I Pee while I'm changing PJ's or bed cloths. This is so frustrating. I can lay under only a sheet and I'm still soaked. I believe my subconscious is remembering the surgery. Or it could be my body fighting off the infection. For now it means I don't have a fever so I'll take that.
Meanwhile I'm trying to catch up on my writing and sleeping. My appetite is better and I have no fever. My stomach is sorer than it's been for many weeks and Debi says I look like a great-grandpa getting around. I told her; "yes, I am pretty great" .
So I think things are going in the right direction once again.
Monday, December 20, 2010
Christmas letter 2010
In the spring of 2010, Debi and Stuart drove to Kansas City (in a blizzard) to see Lance in “Around the World in 80 Days”. The snow was so bad we finally pulled over and spent the night in Iowa. The show was worth the trip.
Jordan is doing free-lance programming, umpiring baseball, filling out job applications, and applying again to teach in Japan in the fall.
Stuart had umpired over 100 games when his season was cut short in July by a diagnosis of Cancer. He was heard to say; “Baseball probably saved my life because it was only after a strenuous game that there was blood in my urine.” This led to a diagnosis of bladder cancer followed by surgery to remove most of the tumor. In November, after three months of chemo, they removed his bladder (which contained the remaining cancer) and constructed a new (Neo-Bladder) from 2 feet of his small intestine. Now it’s a matter of learning how to use this new bladder. So far everything is going very well.
Lance and his lovely children; Noah (4) and Delaney (2) have brought us so much joy over the year and we treasure every minute we get to spend with them. They all came up from Chicago to visit us in the hospital and greatly helped Stuart begin to heal. Lance and Delaney were in a Wal-Mart commercial last spring and Lance is in an AT&T commercial this winter - which helps pay the rent.
Even thought the cancer has consumed most of our thoughts and energy lately, we feel like it’s ending up to be another great year in our lives together. We are blessed with so many good friends and loving relatives who have prayed for us and supported us through this whole thing. With this support and the wonders of modern medicine the cancer has been removed and we will survive and prosper in the new year.
We wish you peaceful holiday season and much happiness in the coming new year.
Jordan is doing free-lance programming, umpiring baseball, filling out job applications, and applying again to teach in Japan in the fall.
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We wish you peaceful holiday season and much happiness in the coming new year.
Sunday, December 12, 2010
How it works
First week of actually using the Neo-Bladder
Last Sunday we ventured out for our holiday tradition of finding and cutting a fresh tree at the The Tree Farm near Cross Plains, WI. This is about a half hour drive out into the country (for us) and usually at least a half hour tracking through the snow before we find and cut the perfect tree. We had a leisurely drive back home followed by diner at a local restaurant to celebrate.
At this point I was still wearing both catheters and the collection bags. I really couldn't wait to get rid of them. What I failed to realize was the fact that these collection bags are MUCH larger than the neo-bladder. And after loosing the bags (the following day) the amount of time I could be away from a bathroom had been drastically reduced.
Limited range:
So, three weeks after surgery (Monday, 6 December 2010) I am finally using the neo-bladder. I can do pretty much anything I ever could except now I have to stop every hour or so and pee. I am assured that this will improve as the new bladder stretches and I develop muscles, I haven't used for a while, to gain better control. After a few days of working with this thing I am mainly sore.
Like a baby:
After removing the catheter (Foley), the doctor sent me home with a list of instructions and a male maxi-pad. I had no idea what to expect but he assured me that I would have little, if any, control to start with. And he was right. I am still in awe at what I have going on inside of me and I can't wait to get started at figuring this thing out.
So, it's back to basics. How do I know when I need to pee? I feel a little leak (this new bladder has no nerves to tell me when it's full). So when I feel a little leak, I run to the bathroom, sit down, lean forward and relax. Some pee runs out (there are no muscles in this new bladder help this drainage). So I try some of the other abdominal muscles and find a way to push some more out - a little bit at a time. The doctor also showed me how to push on my stomach with the ball of my hand, starting at my belly button and sliding down to my pelvis. Of course this is right over my stitches (healed now but still a little sensitive to this sort of thing). So after a minute or so of this, nothing more seems to be coming out. Before getting up the doctor wants me to unplug the SPC (Supra-Pelvic-Catheter) and measure how much - if any - runs out. This is a test for how well I did at evacuating the neo-bladder. He's hoping for less than 100 cc's. I am far below that (maybe 10 cc's ) so I've done well.
Now I go about my business and wait for another 'sign'. It takes about an hour (a little longer if I'm sitting down) and then back to the bathroom for another round. I don't have much control over stopping these leaks but I seem to be able to control the flow to the point where it doesn't start running out until I sit on the toilet and consciously relax. I believe this control comes from the muscles I have been building up with the kegels (which I am now doing in ernest).
After the first full day of this hourly exercise, I am pretty tired of it all and my muscles, and stitches, are pretty sore. Thank goodness for the SPC that I can connect to the bag and let that collect the pee for the night. I get no leakage during the night - as long as that catheter doesn't plug.
The second day goes better and it seems like it is taking more like 2 hours between leaks (average 1.5 hrs. ). It also seems like I'm going more so I'm thinking the new bladder is beginning to stretch a little. My muscles down there are still stiff and sore so I lighten up a little on the kegels.
At the end of the first week I'm still at around 2 hours but I'm getting a little better at holding and at releasing. I'm still very grateful for the night reprieve (the 'overnight bag') and the maxi-pads stay pretty much dry during the day.
Saturday morning, Jordan and I went to see "Harry Potter; The Deathly Hallows Part I" and I almost made it through the whole movie (would have if they hadn't shown 20 minutes of trailers). Then Debi and I went to the neighbors holiday party and I had a couple tasty beers. So I'm getting used to going out and gaining more confidence in my ability to control this new stuff.
Next challenge will be removing the SPC and having to make it through the night. Do I see Depends in my future?
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| That's me - supervising |
At this point I was still wearing both catheters and the collection bags. I really couldn't wait to get rid of them. What I failed to realize was the fact that these collection bags are MUCH larger than the neo-bladder. And after loosing the bags (the following day) the amount of time I could be away from a bathroom had been drastically reduced.
Limited range:
So, three weeks after surgery (Monday, 6 December 2010) I am finally using the neo-bladder. I can do pretty much anything I ever could except now I have to stop every hour or so and pee. I am assured that this will improve as the new bladder stretches and I develop muscles, I haven't used for a while, to gain better control. After a few days of working with this thing I am mainly sore.
Like a baby:
After removing the catheter (Foley), the doctor sent me home with a list of instructions and a male maxi-pad. I had no idea what to expect but he assured me that I would have little, if any, control to start with. And he was right. I am still in awe at what I have going on inside of me and I can't wait to get started at figuring this thing out.
So, it's back to basics. How do I know when I need to pee? I feel a little leak (this new bladder has no nerves to tell me when it's full). So when I feel a little leak, I run to the bathroom, sit down, lean forward and relax. Some pee runs out (there are no muscles in this new bladder help this drainage). So I try some of the other abdominal muscles and find a way to push some more out - a little bit at a time. The doctor also showed me how to push on my stomach with the ball of my hand, starting at my belly button and sliding down to my pelvis. Of course this is right over my stitches (healed now but still a little sensitive to this sort of thing). So after a minute or so of this, nothing more seems to be coming out. Before getting up the doctor wants me to unplug the SPC (Supra-Pelvic-Catheter) and measure how much - if any - runs out. This is a test for how well I did at evacuating the neo-bladder. He's hoping for less than 100 cc's. I am far below that (maybe 10 cc's ) so I've done well.
Now I go about my business and wait for another 'sign'. It takes about an hour (a little longer if I'm sitting down) and then back to the bathroom for another round. I don't have much control over stopping these leaks but I seem to be able to control the flow to the point where it doesn't start running out until I sit on the toilet and consciously relax. I believe this control comes from the muscles I have been building up with the kegels (which I am now doing in ernest).
After the first full day of this hourly exercise, I am pretty tired of it all and my muscles, and stitches, are pretty sore. Thank goodness for the SPC that I can connect to the bag and let that collect the pee for the night. I get no leakage during the night - as long as that catheter doesn't plug.
The second day goes better and it seems like it is taking more like 2 hours between leaks (average 1.5 hrs. ). It also seems like I'm going more so I'm thinking the new bladder is beginning to stretch a little. My muscles down there are still stiff and sore so I lighten up a little on the kegels.
At the end of the first week I'm still at around 2 hours but I'm getting a little better at holding and at releasing. I'm still very grateful for the night reprieve (the 'overnight bag') and the maxi-pads stay pretty much dry during the day.
Saturday morning, Jordan and I went to see "Harry Potter; The Deathly Hallows Part I" and I almost made it through the whole movie (would have if they hadn't shown 20 minutes of trailers). Then Debi and I went to the neighbors holiday party and I had a couple tasty beers. So I'm getting used to going out and gaining more confidence in my ability to control this new stuff.
Next challenge will be removing the SPC and having to make it through the night. Do I see Depends in my future?
Monday, December 6, 2010
Second post-surgery office visit. No more "baggage" (except for one small overnight bag).
Two weeks (plus) since discharge from hospital and we're taking a huge step back towards "normal".
The Foley catheter came out first (the one up my penis). This is painless once they deflate the balloon that holds it in place. It's kind of like "whoops, there it is". Whew! From now on all the urine that is collecting in my neo-bladder will come out through my penis - hopefully under some kind of control by me. The first thing I get introduced to is a male maxi-pad. There WILL be leakage.
Next to go is the Urostomy pouch and the sticky disk that held it on (barrier disk) to my belly. That sticky pad really sticks (when you don't want it to).
The catheter (suprapubic catheter) remains but it is fitted with a plug. So now I have a tube coming out of my belly. I'll get to the reason for keeping this later. I am given a dressing patch that is form fit to cover the hole and protect my clothes from seepage (a weeks worth of these patches).
My assignment for the week is to get used to the muscles and techniques needed to empty this neo-bladder. It doesn't have any muscles in the walls - like the old bladder - to squeeze the urine out of the 'balloon'. I will now have to use abdominal muscles, hand pressure to my lower abdomen, and relaxation techniques to force the urine out of this new bladder. We'll see how that goes....
Also missing is the constricting muscles that were in the prostate (also removed) which effectively shut down any leakage. Both these muscle systems were involuntary (to the extent that I didn't have to consciously contract or release either). I will now have to exercise the muscles in the floor of my abdomen through - which the urethra passes - to build up the muscle tone that will pinch off the urethra and stop leakage. This exercise is called a kegel. [ What are kegel's? ]
Suprapubic catheter (SPC): [what's a suprapubic catheter?]
What I have here isn't exactly an SPC as defined in the above link. Before the surgery I was measured for an ostomy and the location marked on my stomach where an ostomy would be located if, during surgery, it was determined that they couldn't give me a neo-bladder (for whatever reason). During the first week after the surgery they needed an external reservoir to collect urine from the stints coming from the kidneys - before the neo-bladder was sufficiently healed and ready to function. For this I needed an Ostomy pouch which was installed in the ostomy location (logically enough). Since they already had a hole, they may as well use it for the SPC (dual purpose). When after two weeks, the ostomy pouch was no longer needed it was removed leaving the SPC.
For the next week I will be using the SPC for two things:
Stay tuned....
- Remove Foley catheter (penis).
- Remove Ostomy bag and barrier that has been used to collect from the stints and the suprapubic catheter.
- Leave SupraPubic catheter in place.
- Instruct on use and care of neo-bladder and remaining equipment.
- Since last Friday my Foley catheter has been leaking.
- The bags will no longer be needed (for the most part) & I hate those bags.
- (3?) Let's get on with this - I'm curious how it will all work.
The Foley catheter came out first (the one up my penis). This is painless once they deflate the balloon that holds it in place. It's kind of like "whoops, there it is". Whew! From now on all the urine that is collecting in my neo-bladder will come out through my penis - hopefully under some kind of control by me. The first thing I get introduced to is a male maxi-pad. There WILL be leakage.
 |
| suprapubic catheter in urostomy bag |
The catheter (suprapubic catheter) remains but it is fitted with a plug. So now I have a tube coming out of my belly. I'll get to the reason for keeping this later. I am given a dressing patch that is form fit to cover the hole and protect my clothes from seepage (a weeks worth of these patches).
My assignment for the week is to get used to the muscles and techniques needed to empty this neo-bladder. It doesn't have any muscles in the walls - like the old bladder - to squeeze the urine out of the 'balloon'. I will now have to use abdominal muscles, hand pressure to my lower abdomen, and relaxation techniques to force the urine out of this new bladder. We'll see how that goes....
Also missing is the constricting muscles that were in the prostate (also removed) which effectively shut down any leakage. Both these muscle systems were involuntary (to the extent that I didn't have to consciously contract or release either). I will now have to exercise the muscles in the floor of my abdomen through - which the urethra passes - to build up the muscle tone that will pinch off the urethra and stop leakage. This exercise is called a kegel. [ What are kegel's? ]
Suprapubic catheter (SPC): [what's a suprapubic catheter?]
 |
| SPC after removal of ostomy bag |
For the next week I will be using the SPC for two things:
- After doing my best empty my new bladder I unplug the SPC and measure how much runs out. This tests how well I am doing at peeing. If it's less than 100cc I am doing good.
- Night relief: at night I can unplug the SPC and connect it to a bag (overnight bag). This allows me to sleep thorough the night without having to get up every hour or so to pee.
Stay tuned....
Saturday, December 4, 2010
surgery plus two weeks
Two weeks ago yesterday they removed my bladder and made me a new one (Neo-bladder).
Tubes and "Baggage":
I've been home for a week and the only problem I am having is dealing with the two tubes that are still coming out of my body. This adds a bit of housekeeping but it's not bad because I know they will BOTH go away over the next couple weeks.
This morning I woke up and the sticky disk that holds the ostomy bag to my belly had pulled off 1/2 way. Of course this meant a leak and there was a wet spot on my cloths (pee). Not too wet but not a pleasant feeling just the same. I had just replaced this "appliance" yesterday and I must have done something wrong in the process. Anyway, I proceeded to clean myself up and attach a new one - properly this time, I hope. I've only done this a few times so I'm still learning. This is a link to the product that I am using. There are two parts: the skin barrier and the pouch - that snap together.
This hole in my belly - and the ostomy - is only temporary and is used to bring a secondary catheter out from my neo-bladder. (This was also the collection bag for the stints that led directly from my kidney ducts (ureters) after surgery.) These stints were removed last Monday (along with the staples) and now the new bladder is collecting the urine. Most of which is still passing out through this secondary catheter.
This coming Monday the Foley catheter will be removed and this secondary catheter will be plugged - during the day - so I can begin learning how to pee normally ("neo-normally"). And so I can get used to how it feels to HAVE to pee. At night the plug will be removed from this secondary catheter (and bag connected) so I don't have to get up every couple hours.
Up and around:
I am not having any problems getting around - only a little pain if I move wrong. I am prohibited from heavy lifting but that's about it. I have been walking around the block (4-block square) every day and that seems to loosen everything up. Yesterday I substituted cleaning up the driveway and deck in prep for the snowstorm we had last night. Jordan (son) has taken over hauling firewood from the back yard to the back door.
Eating and such:
My bowels have not recovered yet so it's pretty much diarrhea and gas - with the cramping that goes with it (but that's my only pain anymore). This is getting a little old but it's better than the first four days when nothing was working. I'm eating normally now but just not so much.
We got a new layer of snow last night; the first of the season. Jordan cleared off the driveway, sidewalks, and deck. That's nice.
Tubes and "Baggage":
I've been home for a week and the only problem I am having is dealing with the two tubes that are still coming out of my body. This adds a bit of housekeeping but it's not bad because I know they will BOTH go away over the next couple weeks.
This morning I woke up and the sticky disk that holds the ostomy bag to my belly had pulled off 1/2 way. Of course this meant a leak and there was a wet spot on my cloths (pee). Not too wet but not a pleasant feeling just the same. I had just replaced this "appliance" yesterday and I must have done something wrong in the process. Anyway, I proceeded to clean myself up and attach a new one - properly this time, I hope. I've only done this a few times so I'm still learning. This is a link to the product that I am using. There are two parts: the skin barrier and the pouch - that snap together.
This hole in my belly - and the ostomy - is only temporary and is used to bring a secondary catheter out from my neo-bladder. (This was also the collection bag for the stints that led directly from my kidney ducts (ureters) after surgery.) These stints were removed last Monday (along with the staples) and now the new bladder is collecting the urine. Most of which is still passing out through this secondary catheter.
This coming Monday the Foley catheter will be removed and this secondary catheter will be plugged - during the day - so I can begin learning how to pee normally ("neo-normally"). And so I can get used to how it feels to HAVE to pee. At night the plug will be removed from this secondary catheter (and bag connected) so I don't have to get up every couple hours.
Up and around:
I am not having any problems getting around - only a little pain if I move wrong. I am prohibited from heavy lifting but that's about it. I have been walking around the block (4-block square) every day and that seems to loosen everything up. Yesterday I substituted cleaning up the driveway and deck in prep for the snowstorm we had last night. Jordan (son) has taken over hauling firewood from the back yard to the back door.
Eating and such:
My bowels have not recovered yet so it's pretty much diarrhea and gas - with the cramping that goes with it (but that's my only pain anymore). This is getting a little old but it's better than the first four days when nothing was working. I'm eating normally now but just not so much.
We got a new layer of snow last night; the first of the season. Jordan cleared off the driveway, sidewalks, and deck. That's nice.
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