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Posted 9/30/2010 6:59 PM (GMT 0)
 

Aimzee said...
 Some of "us" guys that are the coolest are wives! turn

The wives are also among the coolest. No doubt about it.   yeah

Posted 9/30/2010 7:22 PM (GMT 0)
good luck ahead to each one on the october list, may you safely arrive on the other side

david
Posted 10/2/2010 1:47 AM (GMT 0)
Just a short note to check in after a long day which started at 3:45 AM....the surgeon did 3 RP's today and Tim's was first.

The surgery was uneventful and they were able to do the robot assisted RP as we hoped. Tim was in surgery for a little over 3 hours, nerve bundles spared, no lymph nodes taken as they all "looked healthy"....I didn't know you could tell by looking but well, OK. We'll get the pathology report at the 10 day follow-up visit.

Tim was awake, cheerful and talking two hours after surgery. He really is doing great....I am so relieved to have that part over. We had a sweet afternoon and are very grateful for how well things went and how good he is feeling. Discharge likely on Sunday - I will be back with further reports as we go along. But so far, so good!
Posted 10/2/2010 4:06 AM (GMT 0)
Pipedream,

Sounds like a good report. Drag him out of bed for a short walk in the morning!

My best wishes -

Posted 10/2/2010 2:24 PM (GMT 0)
Pipedream - wonderful news. Take a deep breath now and get ready for some serious healing!

And btw, the surgeon said the same thing to me after my husband's open RP - "nodes looked clear". I reported to friends and family that day that his nodes were clear, not knowing the path report a week later would tell the accurate story (turned out to be true, thankfully). Is your surgeon Boston-based?
Posted 10/2/2010 4:51 PM (GMT 0)

Pipedream, I am so happy to hear how well Tim did with his surgery!  We are here to support you both.  May his recovery proceed positvely and uneventful.  You are in my thoughts and prayers.

Best wishes,

Aimzee

Posted 10/3/2010 1:37 PM (GMT 0)
Such good news pipedream!
Please send our best wishes to your husband.

An and Paul
Posted 10/3/2010 4:12 PM (GMT 0)
This is Ger42's wife, which I'm sure most of you thought was a figment of his imagination because he only talks about the dogs. We've been together for 34+ years and if he keeps it up I'll make him healthy so I can torture him for another 34! Our dogs are adorable and keep him company all day while I'm at work. I forgive all.

NEIrish, thanks for the information on Dr. Catalona in Chicago. I went to his site http://www.drcatalona.com/ which was truly a wealth of information. On the left there is a tab for his Quest Monthly magazine and the articles were varied and very helpful. It's great having so many people sharing information. I'm grateful for you all. It gives Ger a feeling of community during a stressful time.
Posted 10/3/2010 7:44 PM (GMT 0)
http://www.drcatalona.com

I went to the above site and was surprised to read that the Dr. thinks laparoscopic surgery is in its infancy and that "open" is the way to go. He is even less bullish on robotic. The articles appear to be less than a year old.
Posted 10/4/2010 12:36 AM (GMT 0)
Thanks for the well wishes everyone.

I'm back with a another report and a question or two. Tim was discharged from the hospital late this afternoon. Everything is going well. We are both surprised as how little pain he has. He did not need any narcotic painkillers after the first 36 hours. Right now he has discomfort in several places (4 small incisions, 1 larger one, distended belly, and between his scrotum and backside) but on a scale of 1 to 10, he says the pain is a 2 and he is not taking any pain killers at all. I think if he needs anything, OTC will suffice.

We are staying in Pittsburgh for an additional day or two because the 3 hour drive home seems a bit daunting.

The major problem he has is that when we walked about 2 blocks to get something to eat, his clothing nearly rubbed the tip of his penis raw - he had on soft knit boxers and sweat pants. He is supposed to walk a lot but we can't figure out how to "arrange things" so that it is not excruciating to do so. Nothing feels as good as letting it all hang out but that only works in our hotel room! We tried Depends briefs for men but that held the catheter at an odd angle which hurt. I went seeking something better and found Depends pads with button straps on the sides and that works a little better at arranging the catheter.

The other concern is that he was discharged with only a leg bag. We were not permitted to keep the night bag he used since surgery, nor was a new night bag provided. This after we watched a hospital provided video about catheter care in which both the leg bag and night bag were explained....and after an associate (who was on call for the practice this weekend and OK'd Tim's discharge) of our surgeon came in to talk to us about changing out the leg bag for the night bag so he could sleep undisturbed.

The discharge nurse said that she had strict instructions not to send Dr. Miller's patients home with a night bag. That he fears infection from changing the bags around and we could not have one, even though not having one means getting up every few hours to empty the leg bag. I am quite concerned because of how important it is to keep the bag below the level of the bladder. We can't figure out how to do that when he is lying down with the bag strapped to his leg - to say nothing of how awkward it will be to try to turn over or maneuver into a comfortable position with the dang thing.

Does anyone know if a night bag can be purchased at a medical supply place w/o a prescription? Any thoughts on why his surgeon is so adamant about denying him what was presented as standard operating procedure for the period of needing the catheter? Also any tips on how to deal with the rubbing raw problem would be greatly appreciated as Tim feels good enough to walk and wants to...but really can't if the problem isn't addressed to prevent the pain.
Posted 10/4/2010 2:32 AM (GMT 0)

Oh, Pipedream I cannot believe the hospital and doctor would do this to you.  I know you have attempted to get the night bag.  Does it seem complaining does no good.  This is not good health care.  As you know, Ron never wore the leg bag.  It was too bothersome.  He kept it very clean and it served its purpose.

Somewhere, some special ointment was recommended.  I am sorry I don't remember the name.  Someone used baby ointment.  Again, calling your husband's doctor may help.  I am so sorry he is going through this, but how wonderful about the low range of pain.  I hope these problems can be solved.

Welcome Mrs. Ger42!  Yes, this is a very supportive community.

bejoplin, glad things turned out so good for you!

Wishing the best for all of you!

Aimzee

Posted 10/4/2010 3:55 AM (GMT 0)
Pipedream,

I was sent home with the big bag connected, a leg bag and big bag as "extras", but with most extremely adamant orders NOT to change the bag unless the big bag clogged up. The nurse told brutal stories of people switching without the extreme cleanliness needed, and winding up back in the ER. I still have the extras, figured I paid for them. I never did change off the big bag - carried it in a cloth shopping bag while out of the house (did not happen much in the few days I had the catheter).

I am appalled that the doc is basically forcing Tim to get a bad night's sleep to deal with a leg bag. 

The bags are available on many on-line sites, but I would call a Walgreens / CVS, etc. first - they don't seem to require an Rx. Maybe the pharamacist could help with the switch (bags are considered "single use", so my nurse told me to toss, not wash, the bag if there was a change made).

But when you change it, use alcohol swabs on the connectors, and be brutally obsessive about a clean environment, hands, etc.

For the tip of the penis, the nurse said non-petroleum based creams only. It helped me more to wipe the tube with a clean wet cloth several times a day to wipe off the crystalization that came with my leakage and bladder spasms.

 

Posted 10/4/2010 4:07 AM (GMT 0)
Well, you have basic choices on the penis position, hanging down in which case i think a catheter holder around his thigh would be appropriate or have the penis pointing up and tape the catheter off to serveral places on his abdomen. Shaving is a must or ouch!!!
For the up pointing arrangement you will need a catheter extension tube ( about 16") because it will basically from a loop , up and back down again. But you should have the extension tube either way.
I found loose gym pants ( not sweats) and big loose cotton ( not knit) boxers good. But walking two blocks and back with a catheter is pushing it a bit. What you don't want is catheter movement, so back to the up pointing postion. If he is going to be walking a bit then up pointing with a pair of faitly tight jockey's will keep his penis from moving around as it will be isolated from his leg movement. Now, in either case, several times a day with a warm clean wash cloth, wipe the catheter tube off to remove the crust that builds up there from dryed urine and dryed mucous. This crust sliding in and out when walking is very painful. After cleaning the tube, then coat it with a little neosprin ountment. This will help a lot. So to sum up, let it hang down if he is only walking around inside the house. If he plans on trying to get out then point it up and tape the catheter to tbe abdomen and run tube back down the leg bag. Wear big 1000cc nite bag at nite ( or any other time you want. Don't worry about germs that much at your house. Just wash hands real good and use a little alcohol to clean the connection points.
I'll bet the hosiptal didn't even give you a tube and they put his leg bag right on the catheter? I wear leg bags all the time and I can imagine anyplace expect on my calf. I was told post op. to wear a big bag at night and NOT to wear the leg bag in bed due to possile reflux. Well they all have their own ideas. As far as contaminating the the sealed system, that would be a big concern in the hospital where there are all kinds of germs and dirty hands. At home with any reasonable amount of care I wouldn't give switching around bags or tubes a second thought, do it.
Up can get pretty much anything you could possilby need or think of online from Allegro Medical .
Its bad enought having a catheter but you don't need to turned out with nothing like you were. My hospital nurses showed my how to do everything I needed like the cleaning, the ouintment, the two bags ect, and yours should have too. However in my case, since i knew i would have a catheter for two weeks or more post op. I bought extra stuff bags and tubes online before I had my surgery done.
Well good luck and best bet is for him to read some books and don't get into a war with the catheter. Besides these issues, increased activity will cause internal irration and some blood. So tell him, be cool!
Posted 10/4/2010 5:59 PM (GMT 0)
Thanks everyone. We had a miserable night - up three times to empty the leg bag, once for an hour because of a very loose bowel movement that wouldn't stop. You guessed right that I tried to get the night bag from the discharge nurse at the hospital but even though I thought I argued my case well, it was a no-go.

Last night and into this morning Tim had some blood running down the outside of his catheter so we were asked to come into the urology practice this morning to have him checked out. Apparently everything is OK but they wanted to be sure the catheter was not clogged.

I asked again for a night bag but they said no - an additional reason (besides chance of infection with changing out the bags) being that if he rolled over in bed with the bag on the floor there could be too much pull on the catheter and cause a problem. The doc who saw us this morning was not our surgeon but when I said that I would like Tim not to have to get up at night to empty the bag, he said, "How many times did he get up before the surgery?" I said, "Once"....and he said, "Well, he shouldn't have to get up any more than one time for this. He'll be fine." Pretty dismissive. My thought is that the reason he had to get up one time at night was for a full bladder....not just to get up. If we have to set the alarm to change the bag, even if it is only one time a night, that is unneeded disruption of sleep.

Tim doesn't want to make waves, he said, "We'll just live with it." I'm not as sanguine about it - I am going to try to find a place to get a night bag today (and a catheter extension). I believe we are adult enough to be mindful of not putting too much traction on the catheter through the night.

As for the sore penis, we are trying creams and different positions....but also realizing that maybe it won't be possible to make walking comfortable enough to walk for as long as he feels capable of walking until the catheter comes out.
Posted 10/4/2010 6:19 PM (GMT 0)
Pipedream,

I can't say for all the versions of Night/big bag, but the extra they gave me had a long tube. The leg bag did not, which was a secondary reason that I did not use it.

I understand the issue of rolling over at night - I resolved that after the first "incident" by packing pillows on my sides to keep me from doing it again.

I left the connection as it was when I came home (downward). The only real issue was that the little attachment pad they gave me came off immediately. I was leaking badly around the cath tube (spasms), and the urine/blood ate whatever adhesive was on the backing. (That also had me cleaning the tube very frequently). I found some stretch, washable, self attaching (think mini-velcro) bandages at Walgreens. The J&J version is called "Coach". They were good for two or three uses. I put one above and one below the Y connector. Not tight enough to impact circulation -

 

Posted 10/5/2010 1:26 AM (GMT 0)
Before i left the hospital, they gave me a catheter holder, an elastic band with velcro that goes around the thigh. The catheter attaches to this band with another velrco device and the catheter is attached right below the lumen ( small little branch) so that it can't pull on your bladder or the surgical connection they made to the bladder. Who are these people? all this stuff was taught to me by the nurses at the hospital before i left and I left hooked up to the holder. Looks like they are going medievel on your husband. Well I guess you either have to buck the doc or find a good recliner. Sorry to here you are having these problems.
Posted 10/5/2010 1:38 AM (GMT 0)

Just found this site and "new" to the party. Robotic surgery is Wed Oct 6th with my pre-op meeting with the surgeon tomorrow. We live in MT and decided to come to Seattle Swedish Urology Group for the surgery since the surgeon has done over 1000 procedures. While I have read Dr Walsh's book and found it very helpful, there is still a lot of information presented here with helpful hints.

I am hoping for the best and still have some anxiety about the whole process and side effects but I understand, it has to be done.

Age 58

Gleason 6 and Stage T1C

7/12 samples with 5%-40%

Prostate already enlarged and causing typical urinary problems but maybe getting me up once per night if at all.

Posted 10/5/2010 3:38 AM (GMT 0)
Pipedream: The leg bag fills up too quickly. We were dismissed from the hospital after the nurse showed us how to connect the big bag to his leg bag for the drive, but then we were advised to transfer back to the big one when we got home. We were also provided with the velcro adhesive attachments to keep the cath tubes anchored properly on his leg. He lived with that, with me changing it to a new one (absolutely no big deal - the instructions were with the new bag so we didn't have to rely on memory) after a couple of days for hygenic reasons. I cleaned the old one as instructed (bleach was involved), hung it upside down in the shower, and that was that. Whenever I did any of this I thoroughly washed my hands and had a bottle of Purell handy.

Rest is hugely important to recovery and the leg bag is just too small - you'll be up constantly. We had to empty it once in the hour drive home, and once when we had re-attached it for the drive to the surgeon's office. Took the plastic urinal from the hospital, thank goodness and just drained it while seated in the car.

Your husband is doing amazingly well if he's walking blocks already. The blood and crustiness is normal, as you were told, and I was religious about cleaning the tube with alcohol and sterile gauze, and applying the bacitracin to the penile tip around the tube. Instructions were firm about 3xday for that - even showed me how to fold and rotate the gauze around the cath tube in one direction so as not to re-introduce the cleaned gunk back onto the area just cleansed. Just make sure gravity drains the urine from the correct positioning of the cath tube. And as knotreel says, don't let him overdo it - he has a brand new connection from bladder to urethra to heal, and you don't want to push too hard.

One good thing about the diarhea is that it's not the constipation and rectal pain so many experience - just miserable. So glad you're now in the healing stage. Being in your own home will bring you more peace of mind.
Posted 10/5/2010 3:41 AM (GMT 0)
Inwm - don't be concerned about opening a new thread to address any anxiety you have. This site has been a godsend to many of us and I wished I'd found it sooner. Good luck to you.
Posted 10/5/2010 5:44 AM (GMT 0)
P-dream, welcome to the other side...Yes indeed, the catheter is a ROYAL pain..There is NO REASON to put up with just a leg bag!! It's a simple matter to change bags so you can get a full nights sleep without having to get up! The elastic thigh band holds the catheter and prevents any pulling. The large bag just hangs on the bed frame..You have to remember to re-route the tube if you turn over to avoid any uphill flow problems..Urine is sterile and acidic so infection is not a BIG problem. When changing bags I was instructed to clean the hose fitting with alcohol and rinse the unused bag out with hot water..The penis tip will get sore...try to adjust that leg band to keep a little slack in the catheter and put some anti-biotic ointment on the tip..And yes, sometimes there will be a little seepage of various fluids on the outside of the catheter..

Get out and walk as much as you can..That really helped me recover quickly..Empty the leg bag before you go out so it's not heavy! In a few days, it all becomes second nature..
Posted 10/5/2010 6:06 AM (GMT 0)
INWM Welcome! The surgery is not that big a deal! The pre-op bowel prep is almost as bad! Will you be staying in Seattle for a few days afterwards? A long car trip back to Montana would be pretty uncomfortable the first few days..He will NOT be able to drive..He will not have much of an appetite either, those high-energy liquid drinks like Boost or Fortify work great for getting some nutrition quickly if he can't tolerate solid foods..Makes you feel much better after the 3 or 4 day fast..

He will need some baggy elastic waistband pants..Sweat Pants are OK as long as they don't have elastic cuffs around the ankles. You have to pull up the pant to empty the leg bag...No fly is needed! Check in and start your own thread if you have more questions..
Posted 10/5/2010 1:29 PM (GMT 0)
Thanks for the info Fairwind. We will be staying in Seattle until the catheter comes out and hopefully go home the following day. I won't be driving (wife will drive). We have a full size van and I plan to ride in the back where I can prop my legs up and not be int he full seated position to help with blood flow.

Have the pants w/o elastic bands around the ankles. Good tip on Boost or something similar.

 

Posted 10/5/2010 2:44 PM (GMT 0)

Inwm, there is so much information here.   Welcome to the club.  Reading Alf's Intro thread is loaded with good advice.  At least you know you'll be having the night bag!  Good luck and let us know how things are with you.  My husband found out about the cancer in April, and I joined here immediately.  It truly helped.

After reading some of what is written here, I think 142 and my husband were very lucky.   The main problem he had was that the catheter was in for 13 days.  Cleaniness is the most important element.  The first week he slept in the recliner; later the couch.  A material bag would have probably "looked" better than the bucket, but it helped him when taking a shower, and also with the possibility that there would be leakage.  (Oval - 12 quart.)

Yes, we did get the instructions just as others did.  Pipedream this must be difficult to read that 20 or more men were given a choice that Tim was not.  Hopefully, he will be one who gets his catheter out in a week.  I am sorry it has worked out like this.  I am surprised the doctor didn't discuss this BEFORE the surgery.  We knew about the two bags.

Yes, rest is important for both of you.  Walking really does help.  Prayersr that Tim's recovery will continue to progress as expected.  You know, our Hospital had a website that explained everything in detail and with pictures.  I wonder if yours does also?

Please keep us posted.

Best wishes to all,

Aimzee

Posted 10/5/2010 4:22 PM (GMT 0)
Pre admittance to hospital completed yesterday. GP took blood and sent me for chest Xray yesterday when he noticed I had not had one done. His office called today to say I was cleared.
Hospital said they would call me Monday afternoon to let me know when to arrive on Tuesday the 12th. Surgery currently scheduled for 3PM. Nurse said to eat and drink nothing after midnight. I have meds to take and she said with as little water as possible. By the time I get there I'll be so dehydrated my veins will be invisible.
Starting to get nervous. I was very irritable yesterday evening. I have to remain calm. I know getting upset will help nothing and might cause my wife to forget me at the hospital.
I've been doing so many Kegel exercises that last night I woke up with a cramp in my butt muscle.
Posted 10/5/2010 5:04 PM (GMT 0)
INWM.. He can drive after the catheter comes out..(usually).. By the 10 day mark, the risk of blood clots is greatly reduced so the trip home will be semi-normal..During that first week, walk, walk, walk!
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