Not till the 19th - Foley Catheter stays even longer :(

My uro/surgeon's nurse just called me back.  Originally, was going to have the 2nd catheter removed either tommorow, or at the latest, next Monday.  Now that he knows that I won't consent to have him remove it and replace it with an even larger diameter one, he has decided that I need to keep it in place till I meet him a week from Monday, July 19th.  It was a set back I hadn't anticipated.  Having both caths in for nearly a week now has already kept me in lots of severe pain, and the thought of leaving it in another 11 days is beyond my scope right this second.

He feels that the effort to re-open the bladder neck needs a chance to work by allowing the foley to keep it open while it attempts to heal.  I can't say I fully agree, as its my bladder neck that has received the lion's share of radiation damage to start with, and the reason I was in so much pain to start with, even before he did last weeks corrective surgery.  I guess he feels the extra days of leaving it in might serve the same purpose of trying to put another larger one in place.  He had hoped to sedate me in his office, and dialate the opening larger for the the larger cath.  The last 2 times we tried that approach in the past, ended up in very painful and traumatic experiences for me, so there's no way I will consent.

Somehow I have to find the strength to tough it out till the 19th, and then get that blasted foley out of me.  Got me pretty depressed at the moment, because in reality, its just going to mean more personal restrictions for me, more pain, more meds, etc.  Sorry, turning into a vent again.

If push comes to shove, my wife can safely remove the offending catheter at any time, but she would prefer that we at least try to do what the doctor wants to do.  We have come this far.

There are times that I honestly feel that there is never going to be an end to all this.  Last year at this time, I was having an emergency dialation done due to another stricture blockage, and here I am a year later with 2 caths in place.  And a whole lot more hurt.

David in SC

 

Purg - I'm so sorry to hear this news - can't blame you for venting.  We'll be thinking of you!

Paella

Hey David, i can't believe what you are going through, take those meds and good luck on the 19th, i am sure everyone is praying for a good report. Stay positive, all the best, Jake

David,
Thankful that you have this forum gentle *hugs*
CareBear

Dave... I'm truly sorry for what your going through. Here I am lamenting about my first day home and the fact that you have all this on your plate, and still have time and strength to answer posts and help others truly speaks volumes of your charactor! I commend you and wish you the very best..... my prayers are with you!

V

Hang in there, Mr. David.

We're rooting for you!

Barry

Thank you, V and Mel, appreciate your thoughts

Barry, my friend, trust me, am hanging on, to stupid to let go, lol.

Tud,

Nah, you didn't offend me or upset me. There's a difference between "Doctor Bashing" and giving a sound suggestions, big difference. I am human like the rest of you all, there are times that I am on edge and in pain, and other times I am doing ok, so I am sure it reflects on my answers here.

The "nerve spared" store was blown way out of reality. It was originally suppose to be a non-spared surgery from the start, even going into the OR, that was the plan. When they ran into complications on the right side, due to "a very deep and narrow prostate" bed the surgeon had to leave the right bundle alone, as it, and noted on the surgery report that it appeared damage. As it were, all the cancer was on the left side, as suspected. The right side bundle was assumed non-working. When he was first asked (and this guy does dozens and dozens of opers a month, he replied that it was a non sparing, as that what was written going into surgery. While I was still in the hospital, and when I spoke to him in person, the correct answer was told. I don't see any big deal in that, certainly doesn't make him a lesser surgeon.

When you study chronic strictures, and the procedure to cure them or relieve them, its all about painful things. Blocked up bladders, urethra's that are closed or narrowed, a bladder neck that's not working right, etc. The very nature of the problem is pain. The procedures are all painful in that area, no fun on a good day having a scope shoved up your penis. So again, I am not a blame person, its not this doctor or any other doctors fault that I have this over-scarring problem, and that strictures keep happening. They know it hurts, and they work the best they can with me on the pain part.

Right now, its just a minor (guess I should have never mentioned it) diff of opinion with my dr. He wants to force a larger cath up me, to see if it will help stretch the opening a bit more, and if he wanted to do that, should have done it last week when he had me put under. I am just saying, I am not going through all that pain in a radiation damaged area with just a "local". Been there, done that, its not going to work without a lot of pain. So he has changed the plan to just include some existing healing time on this foley catheter, so it was more of a compromise.

I appreciate Sonny's gesture from the past, and assuming that it was a literal offer, was really nice of him. But we each have to make out own choices with our journeys. I listen to all the advice I get here, and filter it like I do any other source of info. Just because I don't follow what someone wants me to do, doesn't make me stupid or non-compliant. There are so many factors in any of our decisions that are not discussed or shared here.

Finally, it was the salvage radiation that has done so much long term damage to me, nothing my doctor did. I knew it was going to be bad going into it, but it has turned out much worse than I ever imagined. Especially since it has been over 8 months since it ended. I don't see the folks at the radiation clinic following up with me, they zapped me, got the big bucks, and sent me off as damaged goods. Its my own uro/surgeon that has stuck by my all these months, trying to help me with these post radiation issues, that he didnt even cause. Credit should be given there.

David in SC

Thank you Squirm, the empty vs the full bladder will always be a point of contention now with me. I trusted the radiation oncologist on that subject. Perhaps I will never know.

Hang in there Purg as you have a couple things going for you others do not (incontinence and ED not a problem) plus ounce you get the urethra bladder connection fixed your numbers look pretty darn good!

74 - Gleason 3+4=7 -- 2 0f 12 positive @ 30% and 70% -- 106 gram whopper -- Vatikutti DiVinci @ Henry Ford 2/10/10 Dr. Peabody -- Two month PSA undetectable -- Five month PSA undetectable -- pads for two months -- dribbles with heavy lifting, sneezes etc. but I have time to make it to restrooms without leaks.

Thank you, Gleason and EdC. I am thankful for the good parts, trust me.

Franchot, thanks you, you have ordered it to get better, so it must :)

_________________________________________________________

Saturday Morning Update

Yesterday I did too much, I guess. My youngest chauffered me around in my car. Even a week later, I still don't feel comfortable driving, and the hard leather seats in my car do little to help that sore feeling. He helped me run some overdue errands and a visit to my Mother's house, where my son did some handywork for his Grandmother. We were gone about 3 1/2 , and I purposely wasn't on pain meds. By the time we go me home, I was just edgy aching old man, and had to take a full load of meds.

The past 3 nights, I go through a period of hurt around 1-3 in the morning. Not sure why, as usually I am asleep then. But I will lie there, medicated fully, and just have so much penile, rectal, and even hip pains. Eventually it fades and I get to sleep late.

Wish I was seeing my dr this Monday, but instead, have to endure this horrible 2nd cath over another full week. Going to be a long 12 days. It will be a miracle that I dont have this cath removed long before that time. We will see.

David in SC