HIFU EXPERIENCE

thanks, Andrew

It has been 30 hours post op.

Still no internal prostate pain. My urethra pain level on a scale of 1 to 10 is down to about 1. I have been sleeping most of the day (as also my wife). I'm probably making up for loss of sleep from last night when the catheter pain made it hard to sleep and also I did not sleep well the two nights before the procedure or the night before our flight to Florida. To be honest, I don't think the lack of sleep was from worry. I certainly wasn't looking forward to the procedure but I knew it was the right choice for me. I think the poor quality of sleep was more a mind set of making sure I woke up in time to get to the airport, and waking up in time for the scheduled MRI (only to sit in their office for 7 hours while they got their machine operational and then rush over to the urologist office with image disc in hand). And lastly, waking up in time to be at the clinic an hour before the procedure and still get in the two fleet enemas 2 hours before my 7 o'clock arrival time and also get a shower in too.

I will say the night before the procedure my wife and I had a good but somewhat emotional evening as we laid in bed together. I wasn't mourning the loss of my health, I had already done that. We talked about no matter what the outcome we are in this together. We talked about this being the best option available with far less potential side effects as to the other alternatives.

I sent an email to Dr. Scionti last night at about 11:00 p.m. that said, "It was a mistake not getting a pain pill from you. My penis hurts and I can't sleep". He replied in the morning, "Pain medication will NOT help bladder spasm!!

Come to office today so I can check you.

In office after 11 AM".

I was glad he was willing/able to see me. He is a very busy doctor. The day of my procedure, he had another HIFU procedure right after mine. Then back to his office where he was seeing patients, performing other procedures, and working until 8:00 p.m.

I called that morning at 8:30 to see when the best time was to come in but no one answered the phone. Probably because the recording said they don't open until 9:00. Lol. I called back at 10:30. Still no answer so I left a message. 12:30 came and still no return call. I called again but no answer so we just drove down to his office. I told the office manager Dr. Scionti asked me to come back in and within 15 minutes I was in a room and in walks Dr. Scionti with a smile on his face saying so you weren't a happy camper last night. I described the pain as stabbing needles or someone taking a sharp knife and cutting the inside of my urethra. He explained that the pain after a HIFU procedure is either in the prostate or at the tip of the penis and caused by bladder spasms. He said a pain pill would not have helped and would only make me loopy and not take away the pain. He said the larger the prostate, typically the more pain is involved and the bladder anti-spasm medication is the best solution. We then discussed my procedure, the areas he treated and how having a very large prostate allowed him to treat the cancer with a large margin so he was easily able to treat the targeted areas. He then targeted the two upper nodules to treat the precancerous areas and hopefully relieve some of the pressure on the urethra so I can possibly pee better. He again said having a large prostate allowed him to treat those areas without risk of damaging the nerve bundles or urethra. He then checked the catheter to make sure everything was working correctly and said the slight discharge was normal and everything was operating like it should. His instructions were to keep taking the anti-spasm medication and (based on the clearness of the urine in the bag) reduce the water intake slightly. My wife and I left his office feeling even better about choosing him for my procedure and the recovery process.

Well this is the day we fly back home. With the pain I was dealing with the day after the procedure, I'm really glad we stayed an extra day. The morning started with a shower. That's not really note worthy but I started having bladder spasms and this time they were somewhat painful. I had a plug in the end of the catheter so no place for the urine to go. Only had a couple and then everything was fine again. I'm thinking that the extra weight of the plug put enough pressure on my bladder to cause the spasms but I don't really know. All I really know is they weren't fun and I wanted them to stop.

First flight is over 4 hrs long. My wife has to take care of the luggage because I am restricted to lifting 5lbs. (And she wouldn't let me help). The trip home started with a little over an hour drive back to Tampa where we returned the rental car. Then we take the shuttle to the airport. It's a little sore sitting down on surfaces that don't have much padding. The most sensitive part of my body still has pain at the tip and causes me to walk slow. We elect to use a wheelchair for efficiency to the boarding gate. Oh yeah...don't forget TSA. That actually wasn't bad. They were very understanding and made it easy and non-embarrassing. It really helped that we had purchased the TSA pre-check screening program they offer. It is my recommendation that if you are going to be traveling by plane after your procedure that you get on the TSA pre-check screening program. It costs $85.00 but it is good for 5 yrs. If you are a Southwest Airlines reward member, you can use point to buy the pre-check program and it is good for any airline. (You will need to check to see if SWA is still offering that promotion). One more quick note about the Pre-check program. Do this at least a month before you travel. When we signed up, our pre-screen appointment was 30 days out. Fortunately they often will take walk-ins.

My wife bought some gym shorts the day before that were long enough to hide the urine bag and made it easy to access and drain the bag in the public restrooms. She also had some foresight and bought a blanket in case the plane was cold. It made it easy for me to occasionally adjust myself without being noticed by others. One other helpful hint is that I found it more comfortable sitting on one of those neck pillows people use when they sleep on planes.

I will continue to post less frequently from this point on just posting when something noteworthy is worth mentioning. Feel free to ask questions.

Something that occurred to me today was to ask my wife to give her perspective. I think this could be very helpful for the wives or whoever goes with you through this event. I can't begin to tell you how supportive and helpful she has been through all this. Only second to my salvation, she is the best thing to have ever entered my life. I love you with all my heart. I struck gold the day you accepted my proposal.

Thanks, again for your update.  Often, the kind of details you provide can be the most important pieces of information that one never hears/reads about to make one's life comfortable post-procedure.  Who'd have thunk of having pre-check?  A blanket?   Aircraft used to always have blankets.

Anyway, I'm sure we're all awaiting the next phase of your post-procedure.experience.  I'm sure we're all in different time zones, so responses will sometimes take much longer if we're asleep.

And thank you, wife, too!

Harvey

Thanks Harvey and Geoff for expressing you thoughts and support of my posts. I'm not fast at texting so each post has taken me a good amount of time. And your feedback makes me feel good about taking the time to share this experience.

My wife has agreed to post the events from her perspective and she has already started to put her thought together. (I just hope I don't sound like too big of a baby through all this. Lol). I don't think I was too bad but it will be interesting to see what she has to say. And I promise I won't edit her remarks (very much, lol) as I think it is important for everything posted here to be accurate.

I'm really not expecting her to talk much about me anyway and what I hope is she will share her emotions and offer insight from the person who is watching and helping as their partner goes through this ordeal. And to be fair, they are going through the ordeal too and I think sometimes, things like this are even harder on them. So hopefully she can offer words of wisdom to help prepare and give helpful hints to the partner who is supporting their man as the event unfolds.

Just a quick update:

Today has been a pretty good day. I went to work even though there was still a fair amount of irritation from the catheter. The urine is much more orange so I am increasing my fluids. (Just a helpful hint on the day of travel, I reduced my fluid intake so as not to need to empty the bag quite so often. But I think I still drank a reasonable amount for the day). The next challenge is having a bowel movement and I'm really a little apprehensive about it so I have been taking a stool softener (this was one of the recommendations from the clinic). Also taking a supplement to increase my fiber intake.

Sunday will be five days and would normally be the day when the catheter would be removed but the doctor does not want me to pull it out on the weekend. So on Monday the catheter comes out and I get to see if I can pee on my own. If not...I have to be Re-Catheterized. Lets hope THAT DOESN'T HAPPEN! Lol

I have my penis back! (I never really lost it but it was being held hostage by my catheter). Pulled the catheter out just minutes ago.

I could hardly wait for this day. Yet when the moment arrived, there was certainly some apprehension and a few questions running through my mind. Would it slide out easily? What if some of the skin had dried to the tube and it was stuck? Is it going to come out or will the next few moments end up in an embarrassing trip to the hospital or GP?

Apparently this was one of those husband/wife moments as my wife wanted to watch. I was fine with that as she has been by my side and really had gone through this as much as I have.

So I'm standing in the shower (water not running) and I push on the tubing to see if it felt stuck at all. It seemed ok so I grabbed the scissors and cut the tube which was holding the balloon inflated in my bladder. Just like they said, water came out the end. I remember watching a video that said wait 30 seconds to allow the bubble to fully drain. Not sure I actually waited that long or not. Gave the tube a slight pull and there was some pain and more fluid comes out the tube. I'm thinking...Crap, maybe I didn't wait long enough! What do I do now, push it back in? Am I going to damage my urethra if the balloon isn't totally deflated and I keep pulling it out? (I really wasn't thinking logically). So very, very, very slowly I keep pulling. Pain is about 3 or 4 on a scale of 1 to 10. I pause for a second or two and then resume. At a slow steady pace I continue to extract the catheter. I start to feel like I need to pee. Then I could feel what seemed like the end of the tube. A second later it was out! In my hand I'm holding this "thing". This foreign object that has been plaguing me all week. My first thought is...KILL IT!!!