Posted 3/8/2020 9:58 PM (GMT 0)
There has certainly been a lot going on since I was diagnosed with RC back in Feb. In in previous update thread I posted that for the first time in my life I was equipped with a Foley Cath because of bleeding and clots. Oh Joy!
Also I remarked that I was going to Mayo Jacksonville to see if I would qualify for Neobladder surgery. That has been put on hold. I am really trying to keep my bladder, we have been friends for 71 years.
A couple of our brothers here on HW mentioned personal or known experiences with Hyperbaric Oxygen Therapy (HBOT). So I had a great conversation with my URO and also had a meeting with the HBOT facility at the hospital. They have had a number of cases using HBOT to treat this issue and have seen good results. My URO also had a conversation with the Dr. at the facility and felt that this was the way to go for me at this time.
HBOT has been delayed a little because of 3 or 4 trips to the ER when the cath became blocked with clots and I could not pass any urine. Not a fun time for sure. After a lengthy conversation with my URO last week, I asked to have a Supra Pubic cath installed to have during the HBOT process. This was done last Wednesday. Immediately after surgery there was an issue with the blood clots blocking drainage, so the URO suggested that I temporarily have the Foley put back in so I could keep irrigating the bladder for a period of time eliminate the clots and keep them from forming. The plan is to remove the Foley once I start HBOT and we begin to see less blood.
Gotta be a first here on HW for a guy to have both types of caths installed at the same time. There was also some discussion about my going into the hospital for a few days to have a treatment called CBI (continuous bladder irrigation). This was something I discovered doing my own research on how to deal with the RC in the beginning. My URO felt that this would not solve the issues and I would be able to regularly irrigate my bladder at home.
I am supposed to start HBOT in the next week or so. The HBOT doc said that in their experience if it looked like it was going to be of help, it would start to show positive results at about 15-20 treatments. At present I am scheduled for 40 total treatments. Each treatment will take about 2.5 to 3 hours. This includes changing into scrubs for the treatment, 2 hours in the chamber and changing my clothing after. The 2 hours in the tube are for: 15 mins to get down to depth (they refer to it as a DIVE), 90 mins at depth and 15 mins to come back to the surface. I will have two, 5 minute periods while at depth on an oxygen mask breathing normal surface air. HBOT delivers 100% oxygen and we breath surface air at about 24%.
I have viewed the chambers and they have them set up to be able to watch TV, listen to music, read or sleep. All of the electronic controls for the TV and music are outside the chamber because you just can't have anything inside, i.e. remotes and such, that would generate a spark. DUH!
I know that this is a lot of info, but that is just what we long time members are supposed to do. We pay back with information as a way of saying thanks for all that was shared with us when we first came here looking for answers to the hundreds of question that arose with our diagnoses.
More info to follow as this next part of my journey with this crud unfolds.
Sonny