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....

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.


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.