RPLND recovery question

[sldl1106]

Hi everyone -

I've really been absent, I am sorry for the non-support lately. I'm in the room w. Rob about 10-11 hours a day. We are now on day nine at Sloan, looking at a 12-14 day stay.

Rob is not passing gas, having independent bms, or urinating any of the fluid that they put in. He's gained 30 pounds. Sheinfeld says this is still within the realm of norm, but Rob was wondering if any of you veterans had this problem. He still can't have anything to drink until this begins. His pain is increasing instead of decreasing because the fluid has him so swollen that walking and doing breathing exercises is becoming more and more difficult. He was doing 3 laps around the floor at a time and now we're down to one, or a half.

He's really getting depressed. Xrays only show large pockets of gas, luckily no pneumonia, no kidney infections, etc.

Anyone experience this delay??

[dadmo]

Jason was also slow to get things going. On about day 8 they gave him something so he would pass urine and when he did it was impressive. Almost 20 lbs in 1 1/2 days. I don't think he actually had a BM until late on day 9. I know it's frustrating but Rob is in good hands.

[Russell's Mom]

Is there a team of doctors watching? Have you asked if there needs to be a consultation? GI doc etc. Any fever or sign of infection? Just mention it, it might stimulate new thought. It is quite possible that it is just surgical symtoms, but there is no need to be quiet about it. The increased pain is always something a nurse takes note of...and as well the weight gain. Ask them where the weight gain is coming from, what to do about it...why are they waiting? I am sure that they have a plan and that all is under control, but the questions in your mind will be worse than the discomfort. Just let them know that you are trying to understand the plan and the directions that they have in mind. Good luck, Sharon

[MRMRSU]

Hi Stacy: Sorry to hear about this current issue with Rob's post-surgery recovery. I also saw in another post that they are not able to put in a port...is this because of his current condition? I agree with Sharon, perhaps a consult with a GI might be necessary here. Is there any kind of correlation with the kidney removal and possible fluid-retention? Is an X-ray enough to show activity? Just trying to help raise some questions...much love from Cali. Thinking of you. Please tell Rob to hang tight...

[k.strehle]

dear sldl

i didnt have problems with my rplnd at indy. the only thing i can tell you is when i was first diagnosed in nov.06 and biopsy done i didnt have a bm for 4 days. and that was after karla ( my #1 chemo nurse) gave me lactalose. she thought it was sleepy bowel. something about touching the bowel during surgery causes it to do strange things. when it woke up....im telling you i thought i was giving birth. also with the morphine and what have you. walk as much as possilble that will help.
good luck.

kendall

[dadmo]

Touching the intestines causes them to be paralised. When my son had some pain they took him for x-rays which showed that he had a gas pocket. It wasn't long after that that they gave him something to get things going. The biggest concern is that when they place the intestines back something becomes twisted. They should be watching his condition like a hawk.

[sldl1106]

Ahhh, so good to be back in the arms of the family!!

Well, they took Rob for a CT this morning. His WBC is up to 19, slightly elevated, still no fever. He has a small infection (think top part of the thumb) in one lung. The doc was relieved that this was the only issue that jumped out.

The colon doc has been by a few times. He's going to come back at some point. The bowel is very distended in one part and then narrow after, indicating there is a lot of gas trapped that won't come through.

We must be pretty important because Sheinfeld is on his way in from home now to come see the CT and talk to us.
Sharon, they told us they are waiting because after this surgery the best course is to let the body heal naturally. They are not eager to use artificial means to get things going.

Dadmo, they did give Rob Lasix, a diauretic. They said it should have gotten the body kick started to rid it of the fluid, but it didn't work well enough and then his potassium level dropped. So Sheinfeld said they might do it again at a later date (he's been off of it for five days or so) to give it another try.

Good to know about Jason. I can't believe how much weight it looks like Rob's gained - I know it is all water but it is unbelievable to see. He's gained 30 lbs of fluid, which is considered normal for the amount of fluid they put in him for surgery.

Maria - they might put something in to release the fluid or air, I'm not sure which. The xray showed all was normal, so that's why they did the CT.

I'll be back with an update.

Much love from the big apple.

[Ampaman]

Hi, Stacy!

I had my rplnd done in MSK recently and didn't have any problems. I remember on my 4th day I was passing gas because the nurses keep nagging me if I passed gas and I was getting worried because they keep asking me but I keep wondering i'm not eating or drinking anything how will I pass gas? but I did.

I did alot of laps with my ipod before and after that so I guess walking wakes the stomach up (I was thinking mentally while walking in pain, that the stomach is like an engine valve and pistons that have to start up and wake up because it's been overhauled thru rplnd).

I was using less of morphine also during the day and use it only at night because I get sleepy on morphine, and have to do my laps during the day. The first time the nurse told me that I have to do my 10 laps on my 2nd day I thought she was crazy? I was about to tell her that this is not a gym like new york city sports club and i'm in miserable pain but she explained it to me that Dr. SH is very conservative and have to follow that.

After passing gas the nurse put me on that dreaded bowel prep. I only did that like 3 times and refused the rest because I was not eating anything and expect me to have something : ) and had a diarrhea everytime I stuck that thing up my boot.
But I guess that bowel prep helped too! after all because I was literally jumping off bed in no time and screaming get out off my way! in front of my friends just to go to the bathroom every 20 seconds. I even forgot my IV infusion drips and nearly knocked that thing out and everybody started laughing at me, plus I don't even want to create a mess on myslef in front of my visitors that's why.

Anyway I'm always praying that Rob gets a quick recovery including all the people here, hang in there Stacy liveSTRONG.

Mike

[Russell's Mom]

As long as they are watching!!! Sounds like you are in very good hands!!! Distention can be sooo very uncomfortable. Long days...hangs on! Sharon

[dadmo]

Stacy:
I believe that knowledge is power and I think and you may already know that if the problem continues they may want to go back in and check to make sure the intestines are clear. We came very close to that happening with Jason. They told us that they have that problem about twice a year. It's a very simple operation but still scarry as all heck.

[spinsta]

I didn't pass gas at all during my stay at Sloan but I did have small, liquid movements. As for the urine, the nurses gave me something that made me GO. I was also very swollen all over my body and gained almost 20 lbs in pure water. Sheinfeld knows what he is doing and will do everything possible from a medical standpoint. Keep him walking as much as possible!

[MRMRSU]

Sweet Stacy: I'm glad that they did the CT scan...that was the only test that showed the chyle leakage for Andy, and thankfully it sounds like they did not find anything too critical. As for the infection, it sounds like they've got that under control too. You hang in there, and Andy sends his best to Rob 'cuz he knows all too well about a distended belly! I'm glad to hear that you are getting a lot of attention from the docs and staff. Will keep checking your thread for more updates. Much love!

[Already Bald]

Hi Stacy,
I had some kind of bowel infection while at Sloan recovering from RPLND. I forgot about it until just now. I don't remember what it was, but I do know that they were taking cultures of my stool, (mostly dirarrea)- and they put me on a strong anti-biotic.
They really stayed on top of things, and I got better.
I have every confidence Rob will too, I'm pulling for you.
Try to get some rest.
Joe

[Fish]

Hi Stacy:

I had fluid retention after my RPLND and also after surgery to repair a hernia along the RPLND incision. The first time they gave me lasix, the second time they put me on a potassium chloride iv (instead of soduim chloride) and just waited. When I started to urinate, I filled two hospital bottles.

I hope Rob's situation resolves soon, I know how uncomfortable it can be.

Best wishes!

[sldl1106]

2 Procedures

Well, today was stressful, for sure. They placed a tube in Rob's left side because Sheinfeld called in consults on his CT and it was agreed that the fluid where the kidney was removed was a different color than the rest. So they thought that was potentially the source of infection. The WBC is still at 19. So they did that, and luckily the fluid is good in color, no pus, no noticable infection, though they sent some of it off.

Then they put the naso-gastric tube back in. Again, good news, the fluid is green and not black, which would indicate a blockage. Not too much is coming out, so they may remove it as early as tomorrow.

And then, just a half hour ago.... gas and a real BM!! Woo hoo, I thought we should have a party! I was so excited. (not exactly dinner conversation) Rob's reaction was grumpy because they always seem to give him the suppositories right before bed - so silly. Then he wakes in a panic and needs to get unhooked from ten things in two seconds.

He is an enigma to the medical staff. I tell the man he is slow all the time, and now he's proving it!!!!!!!!!!

Thanks again for all the replies; they help calm me and when I relay them to him it makes him feel less alone.