The last 6-month check showed creatinine levels a bit higher. Another test, after a month, verified and showed a continued rise. Once again I am asked to come in and visit with my Urologist. These meetings scare me.
Over the past couple years, my Creatinine levels had pretty much leveled out - high but steady - but on my last two checks they have started to inch up again. Nothing real serious, according to my urologist, but a sign that the tube that drains my left kidney (the one that has been swollen) into the neo-bladder may be closing up again with scar tissue where it is attached to the bladder.
So here I am with a brand new tube coming out of my back and draining into a brand new bag on my leg. I've had this tube before but I haven't had the bag - so that's new. The surgery was easy. I was awake and able to move my head to look around, able to move my arms to get more comfortable, and talking to the nurses and anesthesiologist through the whole thing and I even still remember a little of it. But there was no pain.
They wanted me to hang around for a couple hours after it was over to make sure I was functioning again. I had a hearty meal and drank a lot of water, since I hadn't eaten in nearly a day or drank anything for about 8 hours. The radiologist, who put the tube in, told my wife that everything went fine. He was a little concerned that the urine was so thick and he took a sample to be analyzed by the lab.
It's been about 12 hours since the surgery and I just biked in to this coffee shop and from here I'll go to work (I'm working again). I feel fine now but I did wake up in the night with some pain and I was a little nauseous. I took an Advil and lay back down - both of which helped.
There hasn't been much flow into that bag and it's still quite red. So it crosses my mind that maybe the urologist is less optimistic than I had thought. Maybe the real purpose of this nephrostomy is to conclusively prove, to both him and to me, that this kidney has stopped working and needs to come out.
We'll see. The plan is to keep the tube in for a couple weeks.
Showing posts with label neo bladder. Show all posts
Showing posts with label neo bladder. Show all posts
Friday, August 9, 2013
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?
 |
| 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?
Friday, November 19, 2010
Here we go.
5:15 AM sounds early to be walking through the hospital doors but I'm usually up and about by now anyway and I think Debi is too nervous to sleep - she was up before me. Since I can't have any food or drink it's just as well to get started early. Debi's sisters drove down yesterday and they will join her at the hospital later in the morning to help her with the waiting.
We sit in a very nice prep room and host a parade of professionals as they each apply their magic - after I strip down and put on hospital gown ("the last suit you will ever wear").
A hug and a kiss from Debi and away I go ....
We sit in a very nice prep room and host a parade of professionals as they each apply their magic - after I strip down and put on hospital gown ("the last suit you will ever wear").
- Wrist band ID (now I can go on all the rides).
- Wrist band blood type match - just in case.
- Vital signs.
- Sign consent forms.
- anti-nausea pill.
- Blood draw for lab.
- Shave (you know where).
- Wait
- Meet with the Ostomy Nurse - to mark where the hole will be in my belly (for tubes, etc). This should be temporary unless there is reason to abort the neo-bladder and go with a permanent Urostomy (ugh).
- Meet with the anesthetist.
- Wait
- Meet with the surgeon (he's bright eyed and bushy tailed - had a good night's sleep and is ready to go.)
- Wait.
- Debi packs up all my stuff (clothes, cell phone, ipod, and glasses - I won't need to see).
A hug and a kiss from Debi and away I go ....
Wednesday, August 4, 2010
Notes from first meeting with the surgeon
Debi and I had our first meeting with the surgeon who will be doing my cystectomy (removal of the bladder). We both came away feeling much better - or more confident - that we can beat the cancer and that living without a real bladder (and prostate, etc) won't be all that bad.
I had a few pages of questions and he actually answered most of them before I even asked. He's a young doctor (Debi says he looks more like a rock star) and he exudes both confidence and competence. He has done a ton of these (a couple per month) and carefully went over the procedure, available options, chance of success (and what they do to insure/verify success) and what to expect for recovery and quality of life. He spent a lot of time on how the new system will work, and what problems others have had before me - and what they did to deal with it.
Before we schedule the surgery he said that recent studies have shown taking a 3-month course of chemo before the operation has had some positive results in reducing re-currence of the cancer after the operation. He set up an appointment for us for this Friday with an Onocologist to discus whether it would be a good idea in my case.
The other decision I need to make is what sort of replacement I want for the bladder function. Either:
1. an Ileal Conduit which takes a small piece of my small intestine and forms a tube that connects the kidneys to a stoma in my stomach wall. This requires wearing a pouch on the stomach.
2. a neo-bladder which uses a couple feet of my small intestine to form an internal reservoir that is hooked up to all the current plumbing.
There are pro's and con's for both. The first requires one to wear a pouch all the time. The second has some problems for some people with leakage. I'm leaning towards keeping the current plumbing. It'll take some getting used to but I'm pretty good at making things work.
Other things:
1. He makes a 4" incision from the belly button down (some cut that and continue around the belly button an inch or so higher. (His specialty is minimal invasive surgury.) Some have started to use robotic surgery but that only works for removal
2. He uses a nerve sparing technique in which he carefully moves the nerves that control the mechanism of erections out of the way when they remove the prostate. This helps retain this function in the majority of men.
3. He will take the small lymph nodes next to the bladder. I asked if I'd miss these and he said there are millions in the body and these are just two small ones. They send these to be analised for presence of cancer cells. If the cancer has made it out of the bladder these are the first place it would show up.
4. So how do you pee with this new bladder. It doesn't have muscles like the old one so it cannot expel the urine without help from outside. So you sit down and relax your pelvis muscles while pressing down and in - with your arm - just above the pelvis. This forces the urine out of the new bladder. No more standing up to pee - but there are a lot of people who have dealt with this problem for a long time (eg. women ) so I'm not too worried.
5. Time: the actual surgery will take between 3 hrs (for the ileal conduit) to 6 hours for the neo-bladder. Up to 5 days hospital stay to make sure the intestine wakes up and there are no problems with the new bladder. Full recovery can take up to 6 weeks - but it's usually faster.
6. follow up chemo or radiation depends on what they find in the tissue samples from the different organs removed.
Meanwhile I can do anything I want - physically. So I've signed up for a tournament this weekend to ump a couple games. Feels good.
I had a few pages of questions and he actually answered most of them before I even asked. He's a young doctor (Debi says he looks more like a rock star) and he exudes both confidence and competence. He has done a ton of these (a couple per month) and carefully went over the procedure, available options, chance of success (and what they do to insure/verify success) and what to expect for recovery and quality of life. He spent a lot of time on how the new system will work, and what problems others have had before me - and what they did to deal with it.
Before we schedule the surgery he said that recent studies have shown taking a 3-month course of chemo before the operation has had some positive results in reducing re-currence of the cancer after the operation. He set up an appointment for us for this Friday with an Onocologist to discus whether it would be a good idea in my case.
The other decision I need to make is what sort of replacement I want for the bladder function. Either:
1. an Ileal Conduit which takes a small piece of my small intestine and forms a tube that connects the kidneys to a stoma in my stomach wall. This requires wearing a pouch on the stomach.
2. a neo-bladder which uses a couple feet of my small intestine to form an internal reservoir that is hooked up to all the current plumbing.
There are pro's and con's for both. The first requires one to wear a pouch all the time. The second has some problems for some people with leakage. I'm leaning towards keeping the current plumbing. It'll take some getting used to but I'm pretty good at making things work.
Other things:
1. He makes a 4" incision from the belly button down (some cut that and continue around the belly button an inch or so higher. (His specialty is minimal invasive surgury.) Some have started to use robotic surgery but that only works for removal
2. He uses a nerve sparing technique in which he carefully moves the nerves that control the mechanism of erections out of the way when they remove the prostate. This helps retain this function in the majority of men.
3. He will take the small lymph nodes next to the bladder. I asked if I'd miss these and he said there are millions in the body and these are just two small ones. They send these to be analised for presence of cancer cells. If the cancer has made it out of the bladder these are the first place it would show up.
4. So how do you pee with this new bladder. It doesn't have muscles like the old one so it cannot expel the urine without help from outside. So you sit down and relax your pelvis muscles while pressing down and in - with your arm - just above the pelvis. This forces the urine out of the new bladder. No more standing up to pee - but there are a lot of people who have dealt with this problem for a long time (eg. women ) so I'm not too worried.
5. Time: the actual surgery will take between 3 hrs (for the ileal conduit) to 6 hours for the neo-bladder. Up to 5 days hospital stay to make sure the intestine wakes up and there are no problems with the new bladder. Full recovery can take up to 6 weeks - but it's usually faster.
6. follow up chemo or radiation depends on what they find in the tissue samples from the different organs removed.
Meanwhile I can do anything I want - physically. So I've signed up for a tournament this weekend to ump a couple games. Feels good.
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