New Member: Logan Nana

I found this new member embedded below:

Hi Guys,
I hope you don't mind a woman on your blog. I am searching for some support along the lines of men who have suffered AUR post brachytherapy. My heart breaks for my husband as I watch the pain and discomfort he has been going through with no end insight. He has had a catheter since June 20th, following his BT on June 4th. There have been 4 attempts to get him off the cath with disastrous results, i.e. trips to the er, tried and failed attempts at getting the cath back in with lots of pain and blood involved. We feel like we are in the age of blood letting and leaches. We are going to see a specialist next week who specializes in urethral strictures but any support you all can give would go a long way toward helping our psychies right now:) We feel so alone on this as everyone we talked to prior to the treatment went through it with flying colors and most of them had higher risks for side affects. My husband was feeling perfectly fine and enjoying his retirement before this. He had no enlarging of the prostate or trouble urinating and only got up once during the night to go. Now his plumbing is a mess! Sorry to ramble on.
Logans Nana

Hello, Logan's Nana.

There are many ladies on the forum and so far, all of the men and other ladies have been nothing but extremely supportive and very generous with sharing information.

I hope you find the answers to your questions. :)

My situation is totally different with no brachy seeds nor any surgery nor radiation so far, and no side effects other than occasional hot flashes from the hormonal therapy to remind me that the Lupron is still doing its thing.

As a Gleason 9, my day will come though.

But I did want to add my welcome and assure you there are a growing number of female care givers who post regularly here.

You may encounter a strange acronym GFMPH which stands for Good For Men's Prostate Health. One use of the term is get-togethers of Healing Well members. Another is things like a new boat sure would be good for my prostate health.

The one coming up in Rochester at end of September will be the first for me and my spouse Karen but I understand it is great comradery where the men compare scars and the women bond to share how they best can support their beloved who has this dreaded disease.

The next GFMPH after Rochester is a cruise in early December and more planned for 2014 March in Orlando, June an Alaska cruise, and another Rochester I would presume.

Again wish you did not have to be here, but welcome.

LupronJim

Hello again,
First, thank you for the positive input AND the much needed humor. That Alaska Cruise in June sounds like it would be a great motivator to get well enough to travel again . We did see the new urologist who looked at everything with a scope and could not see any stricture, just some areas of possible future problems. He said it was too soon to tell. He sent us home with a new catheter ( the most uncomfortable one so far) and said to come back in two weeks. The instructions were to pull the cath the morning of the next visit so he could tell how things were going (or not!) by the time we got there at 2PM.

Chuck pulled the cath at 10:00 the mornign of the visit (very painful). By the time we had to leave to get to the appointment, he had dribbled a bit but nothing to get excited about, especially since we had been down this road before with horrific results (adding tension). By the time we got to the doctors office and after drinking a lot of water, he could have been on that commercial...gotta go, gotta go, gotta go right now! And he did! It was the best thing that had happened in three months!

However things go down hill from there. Chuck was instructed on how to self cath and told to do it in the morning and at night with possible adjustments to that schedule depending how it goes. We left feeling hopeful even though my husband felt like his pee pee had been through a war by then because as usual the cathing was difficult, even with the MA's help. The rest of the day and evening urination gradually became less and less just like it did the other 5 times we tried. That was Wednesday. That night he was up and down all night trying to go on his own and self cathing, almost passing out from the pain on insertion and painful bladder contractions. Thursday morning we called the Doctor's MA. She advised he shouldn't be cathing more than 4 times a day. She called in an RX for Vesicare to help with bladder contractions

He is still feeling miserable and it is 1:12 Friday morning. I have selected some of the more encouraging posts here to read to him, trying to keep him as "zenned out" as possible. Thank Goodness for this forum or I would swear we were alone in the twilight zone. He wants so badly to be free of the Foley but it sure seems like he just isn't a good candidate for self cathing. He gets it in to a point and then if feels to him like there is an obstruction to get past(that's where the sickening pain comes in). He has been having one uti after another for the last 3 months and is currently on the last day of the most recent cipro Rx.

We also did some research on the Vesicare and question the wisdom of taking it. It says on the package literature not to take it if you have AUR! She ordered it for the bladder spasms but now we are afraid to take it. This doctor did change him from Flomax to Rapaflow the first time we saw him.

Sorry for the long shaggy dog story. Greg, how did your doctor's visit go for you? Well, I hope.
Thanks and blessings to all of you,
Nan P aka: Logan's Nana aka: Sleepless in Seattle

Hi Nan. So sorry about all the trouble he's having. You must care a lot to be so involved and concerned. You'll be in our thoughts and prayers. Hopefully, they can get this worked out and it won't be so difficult.

I've been doing self-cath for a few weeks now. Four times a day, every day. I saw the uro again to weeks ago (thanks for asking about the visit). He said that the occasional blood and cloudiness I'm seeing in my urine is normal with catheterization. I don't have much pain, though, so I'm sure my case is very different from your husband's.

I'm now not able to "go" at all without the catheter. Everything seems closed off. I really want to go, often, but just can't. The uro said that I really need to do the catheter 4 times a day, and never get to the point where I have more than about 600ml of liquid come out. I've had over a liter at times, when I forget a time. I'm drinking a lot, partially because of all the exercise I've been doing. The capacity of the average male bladder is 500-600ml.

The uro also said that it's likely with my diabetes and PCa that I'll have to do self catheterization for the rest of my life. Not happy about it, but I can live with it if I must. I've been on vacation for a week and more and it's been very interesting trying to find a private bathroom where I can do this. It involves using the sink to get everything clean (trying to do this when no one is around in a public rest room) and then the toilet for the self-cath. I've been successful so far in staying private, but it's been close. I guess I shouldn't really worry about it, but I do. Sometimes I just find the whole thing too funny and start laughing at myself.

Between this diagnosis of daily self-cath, basically forever, and the questions I've had about prostititis, I've decided that when I return from vacation in a couple of weeks I'm going to go see another urologist and get some second opinions. I'd like to know if perhaps something can be done to let me pee naturally again.

On a positive front, my PSA dropped another .5 at my last test, which is great news.

I feel for you folks, and hope it gets much better, soon.

Best wishes,
Greg.