So it’s been just over three weeks since I arrived back home from my surgery and it’s been full of ups and downs. The short version is that my recovery is going well, as expected, in fact maybe even better than expected. The longer story is that this seriously sucks.

I am not going to go day by day because typing it will be as long as living it and no one deserves being put through that misery but here is a summary of what recovery has dealt me.

On the positive side I was able to get a bunch of decent sleep at night. There is nothing like being in your own bed. It took some getting used to with all the tubes but was still better than the hospital. Once the kidney and abdomen tubes came out (after about a week at home) it was much easier to move around and get some sleep. The general discomfort from the incision site and tubes was pretty minimal. Much less in fact than I would have expected so that was good. The other big positive was simply being able to get outside. Although i wasn’t able to walk that far (1 mile or less) that often I was able to get outside.

One the negative side the digestive distress has been overwhelming. I need to remember this was just as much intestinal surgery as it was bladder surgery given they removed and restitched two-feet of my intestine. That’s bound to cause some problems and it sure has. It’s been three weeks of this digestive misery now with no end in sight. They said it could last weeks or months. Ugh.

So everything was going pretty smoothly and then the shoe dropped. Last Friday, Aimee noticed me sitting in the sun outside with three layers of clothes and a huge blanket and thought that a little odd. She took my temperature and it was 102. 102 is high in general but with having had recent surgery like this the fear of dehydration and infection are much greater, so a doctors call was placed and off to the emergency room we went on Sept 22. As expected I had an infection and was severely dehydrated. Not really a surprise but definitely a setback. Spent a night in the ED and then was admitted to the hospital for a few days to get the infection and dehydration under control. Had my Kol Nidre dinner (ate it before I took pic) in the hospital and skipped the fast on Monday, oh well.

Was released on Monday the 25th and was glad to once again get home.

Which brings us to the end of this week. Yesterday I had my Foley catheter removed. I first had a cystogram which is an X-ray with dye of the neobladder to ensure its intact and not leaking. All was good. The removal of that cath really wasn’t fun. It literally took my breath away but it lasted no more than 10 seconds and the discomfort didn’t last very long. The positive was no more tubes! Unfortunately they also wanted me to self cathertize to show them I could do it (go back to Fun with Straws entry if you want to hear about attempt 1). Given I had very little time to recover from the removal, this self attempt was pretty darn painful but with some breathing, a little swearing, and some patience I was able to get it done, get it out and be on my way.

The first day without the cath was pretty good. Aimee and I walked for about 2 miles, I was able to lie in pretty much any position and I started to feel a bit more normal. I even jogged for about 200 yards, against the advice of my doctor but I couldn’t help not trying.

The big challenge is that for the next 7 days I need to urinate every 2 hours, 24 hours a day, and self cath twice a day, so the idea of sleep is pretty much gone. I didn’t experience much discomfort or leakage (which can be common) during the day so felt pretty good headed into the night.

I ended up going to bed around 930 after self cath’ing for the second time and I made it a whole 1:45 before I wet myself! I was so frustrated and embarrassed! I was really hoping to not have to deal with this, or have Aimee witness it, but the body is complicated and I just need to do what is needed. So off I went for a midnight run to CVS to grab some supplies I never expected to need. Thank goodness for self checkout and a sense of humor. It is what it is.

Anyway, you are up to date. I feel good physically. Getting better every day. Mentally I am fighting the fight and trying to get my head around it all but not letting it get me down.

I appreciate all the continued love and support and know that each day is going to be a great day.