Star date Sept. 16, 2015. I have now entered the true neo bladder zone. I am now 100% reliant on my intestinal made bladder for storing and evacuating all my urine.
So today I had the catheter removed that was making sure my neo bladder was emptying. Attached to the catheter were 2 stents. Each stent was inserted up through my ureters and into the kidneys. You have to love when Cindy, my neo bladder training nurse says, "When I remove this catheter and stents, it is going to hurt. Some people say it hurts a little. Some people say it hurts a lot. But I while try to remove it as quickly as possible." Well it did hurt. A burning pain. But it was over soon. Soon enough that I didn't have time to go into a swearing tirade.
Before the catheter was removed, Cindy irrigated or flushed my neo bladder to remove any mucus that they be present. Somehow she found a lot of mucus - not good. The last thing she did before removal was to inject 50 ml of saline into the bladder. Then the pain previously mentioned occurred. Cindy then had me step over and sit on the toilet to see if I could evacuate the saline on my own. And I could not. My urethra was clogged with mucus and would not let the fluid by. So this is where I received my first lesson in self catheterization and irrigation. This is the part that I was very much apprehensive - scared - about. But I put my big boy positive attitude on and pushed the catheter in with the help of lots of K-Y gel. To be honest there was no pain involved, but you could tell when you passed through the pelvic floor and into the neo bladder. Well the long and short of it is that it took 2 self caths to clear the mucus away. Unfortunately, Cindy did not leave any additional saline in the bladder, so I still had no idea if I could self evacuate the fluid in my bladder. Finally, I did get a chance to sit on the toilet again. I did as instructed, I pushed down as though I was trying to have a bowel movement and presto - a small shot of urine slowly flowed from my penis. I was so relieved and happy.
I saw Kevin, the P.A., and received some instruction on future appointments. We said our thank you and good bye to Cindy and Cheryl drove us home to Van Nuys - me and my new system complete with diaper.
Of course, my journey has just begun. I set an alarm for every 2 hours during the day and every 3 hours during the night as I begin my life of urinating by the clock. Eventually, as my neo bladder stretches, the intervals will increase. There are numerous procedures I must perform to keep me and my neo bladder functioning properly. But I'll save those for another time. Hopefully in time, I will find my new normal - my new life.
Wednesday, September 16, 2015
Saturday, September 12, 2015
Ready to move on
I knew that sitting around this rented house for more then 3 weeks would be tough and it is. It is hard mentally and physically. In my last post, I spoke of my 2 physical complications. Fortunately for me, one of these has straighten itself out. The swelling of my genital area has now returned to normal. For that I am very thankful. As for my diarrhea, it continues to be a pain in my ass. It appears that my antibiotic - cipro - is the cause. This once a day drug kills all bad and good bacteria and never allows my intestines to properly process food. I have tried many things and nothing seems to work well. I am now adding bacteria to my system with a probiotic pill and supplementing in some anti-diarrhea pills. Of course the doctors say it would be worse to have constipation, so I try to walk the line. Unfortunately, the end of this is not coming soon, because I have enough pills to last till 9/28/15. But this situation keeps me close to home where I am more comfortable.
I am just trying to stay focused on what I have coming up. My appointment to get my cath out is on the 16th at 8:30 am. Just 4 days left out of this 3 week cathing period and I am so ready to move on. I will be there for about 3 hours learning how my new system works. I am apprehensive about this. But I am motivated to get past this so I can move on. I am hopeful that my body will function as close to normal as possible. I do have to remember that it may take time and I have to try and be patient. I am not typically patient, so this will be a challenge for me. I know if I can learn to adapt quickly and I have no complications, I will be ready to hop on that plane and fly home. And I am so ready to be home.
I am planning to fly out on the 20th. I believe that is enough time for me to adjust and prepare for the trip home. To be honest, I am more worried about the diarrhea then I am about my new bladder. I am just ready to be in my own home. Only time will tell if coming to USC / Keck was the right decision. The extra time, expense, and stress of making this trip was no small matter. But in all honesty, the experience has been positive. The medical personnel have been great to work with. The rental house looked better in the pictures then in reality. But it did meet our needs. Bottom line - I'm ready to have all of this over with.
I am just trying to stay focused on what I have coming up. My appointment to get my cath out is on the 16th at 8:30 am. Just 4 days left out of this 3 week cathing period and I am so ready to move on. I will be there for about 3 hours learning how my new system works. I am apprehensive about this. But I am motivated to get past this so I can move on. I am hopeful that my body will function as close to normal as possible. I do have to remember that it may take time and I have to try and be patient. I am not typically patient, so this will be a challenge for me. I know if I can learn to adapt quickly and I have no complications, I will be ready to hop on that plane and fly home. And I am so ready to be home.
I am planning to fly out on the 20th. I believe that is enough time for me to adjust and prepare for the trip home. To be honest, I am more worried about the diarrhea then I am about my new bladder. I am just ready to be in my own home. Only time will tell if coming to USC / Keck was the right decision. The extra time, expense, and stress of making this trip was no small matter. But in all honesty, the experience has been positive. The medical personnel have been great to work with. The rental house looked better in the pictures then in reality. But it did meet our needs. Bottom line - I'm ready to have all of this over with.
Monday, September 7, 2015
Here in California
It is now 10 days since my operation. Not counting the day of surgery, I spent 4 days in the hospital and was discharged on Sunday, Aug. 30. My hospital stay was interesting. The hospital staff was (for the most part) friendly and attentive. And with LA as a whole, the hospital staff was very diverse. I also found it interesting the differences of how USC / Keck hospital and it's clinics are run compared to our smaller Utah facilities. The vast number and diversity of people in the waiting areas, the use of hallways for extra space, and lack of free parking were eye opening in this big LA system. Anyway, we have managed to success full navigate this jungle. And I don't even want to get into the traffic / freeway system.
As for the medical / procedure stuff, there was a lot more to the home care then I was expecting. I don't think just one care giver would have been enough at the beginning. First there are pills that need to be taken at certain times, then a shot that has to be given, then the big one - every 4 hrs. the catheter has to be flushed, then each night my port has flushed and cleared for IV water treatments every other day. I know this doesn't seem like much, but if you have never done anything like this before, it is scary.
Flushing the catheter is the most involved. Because the neo bladder, which is made from 2 ft of my small intestine, produces mucus, it is important to not let this mucus accumulate in the new bladder. To prevent this, we inject 50 ml of saline solution up through the catheter with a syringe and into the neo bladder. We then pull back on the syringe to suck back out the water with along any mucus that the neo bladder has made. This process usually requires a minimum of 4 attempts. The waste is squirted into a pan and disposed of. Unfortunately, it doesn't always go smooth and the syringe does not cooperate. Sometimes a suction is created and you can not suck any fluid back out. So you need to move or adjust the catheter till you are clear. Not easy if you have never done this before and it needs to be done every 4 hours. But I am very lucky to have 2 terrific caregivers (Barb and Cheryl) who are helping navigate this territory.
To be honest I have been doing well since I have left the hospital. Where the cut through my abdomen is healing and is strong. But I have been struggling with some other issues that make each day a challenge. They said the 2 most frequent complications are dehydration and constipation. Neither of those has occurred. The irony is that the opposite has occurred. I have had diarrhea pretty much since I have left the hospital. They were giving me a stool softener to counter act the pain pill. But I soon found that wasn't needed. Now I am on a BRAT diet to try and firm things up. But this diarrhea has me tied to the house and with a lack of energy. It is frustrating.
And now for the more amusing complication. I hope you can read this with a sense of humor, although it is truly uncomfortable for me. While in the hospital I noticed my genital area becoming enlarged or swelling. I asked the doctor and was told this is normal. On Monday, our 1st full day at the house, I received my 1st IV hydration. At bedtime that evening Barb, Cheryl, and I prepped for my bedtime catheter / bladder flushing. When my shorts were removed , we all gasped at the size that my genitals had become. My scrotum was now larger then a softball. My penis had swollen so large that it was barely recognizable. Of course, after the initial freak and shock, the humor and jokes started coming. I called it my medical freak show. Of course the doctors said it was normal. They also said it might take 6 weeks for the swelling to go down. Basically, the fluids in my abdomen and body need to adjust from the surgery - or so they say. There isn't much that can be done to speed it up either. So I waddle bowlegged through the house being careful when sitting. So in my recent facebook post, when I referenced AC / DC, I was referring to their song "Big Balls".
It is now Labor Day, as I am trying to finish this post for 3-4 days. One would think I have all kinds of time to do whatever I like, but to be honest I have spent a lot of time just lying in bed. I have been walking about 1 mile total each day and I hope to keep increasing. I try to keep my nutrition up with my toast and rice diet by drinking Boost. I miss a nice grilled cheese burger. But I am now half way through the process and hopefully soon on a airplane home and this behind me. Although Barb has left to head home, she was a great help and support to me while she was here. I am so thankful that Cheryl continues to help me. I know the sacrifice that both Tim and she are making on my behalf, and I am so grateful. Thank you again for all your prayers and support.
As for the medical / procedure stuff, there was a lot more to the home care then I was expecting. I don't think just one care giver would have been enough at the beginning. First there are pills that need to be taken at certain times, then a shot that has to be given, then the big one - every 4 hrs. the catheter has to be flushed, then each night my port has flushed and cleared for IV water treatments every other day. I know this doesn't seem like much, but if you have never done anything like this before, it is scary.
Flushing the catheter is the most involved. Because the neo bladder, which is made from 2 ft of my small intestine, produces mucus, it is important to not let this mucus accumulate in the new bladder. To prevent this, we inject 50 ml of saline solution up through the catheter with a syringe and into the neo bladder. We then pull back on the syringe to suck back out the water with along any mucus that the neo bladder has made. This process usually requires a minimum of 4 attempts. The waste is squirted into a pan and disposed of. Unfortunately, it doesn't always go smooth and the syringe does not cooperate. Sometimes a suction is created and you can not suck any fluid back out. So you need to move or adjust the catheter till you are clear. Not easy if you have never done this before and it needs to be done every 4 hours. But I am very lucky to have 2 terrific caregivers (Barb and Cheryl) who are helping navigate this territory.
To be honest I have been doing well since I have left the hospital. Where the cut through my abdomen is healing and is strong. But I have been struggling with some other issues that make each day a challenge. They said the 2 most frequent complications are dehydration and constipation. Neither of those has occurred. The irony is that the opposite has occurred. I have had diarrhea pretty much since I have left the hospital. They were giving me a stool softener to counter act the pain pill. But I soon found that wasn't needed. Now I am on a BRAT diet to try and firm things up. But this diarrhea has me tied to the house and with a lack of energy. It is frustrating.
And now for the more amusing complication. I hope you can read this with a sense of humor, although it is truly uncomfortable for me. While in the hospital I noticed my genital area becoming enlarged or swelling. I asked the doctor and was told this is normal. On Monday, our 1st full day at the house, I received my 1st IV hydration. At bedtime that evening Barb, Cheryl, and I prepped for my bedtime catheter / bladder flushing. When my shorts were removed , we all gasped at the size that my genitals had become. My scrotum was now larger then a softball. My penis had swollen so large that it was barely recognizable. Of course, after the initial freak and shock, the humor and jokes started coming. I called it my medical freak show. Of course the doctors said it was normal. They also said it might take 6 weeks for the swelling to go down. Basically, the fluids in my abdomen and body need to adjust from the surgery - or so they say. There isn't much that can be done to speed it up either. So I waddle bowlegged through the house being careful when sitting. So in my recent facebook post, when I referenced AC / DC, I was referring to their song "Big Balls".
It is now Labor Day, as I am trying to finish this post for 3-4 days. One would think I have all kinds of time to do whatever I like, but to be honest I have spent a lot of time just lying in bed. I have been walking about 1 mile total each day and I hope to keep increasing. I try to keep my nutrition up with my toast and rice diet by drinking Boost. I miss a nice grilled cheese burger. But I am now half way through the process and hopefully soon on a airplane home and this behind me. Although Barb has left to head home, she was a great help and support to me while she was here. I am so thankful that Cheryl continues to help me. I know the sacrifice that both Tim and she are making on my behalf, and I am so grateful. Thank you again for all your prayers and support.
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