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11 years 11 months ago #18083 by Melodie

What date have they got you scheduled for your RC? You said June and we are over half way through the month now. Keeping you in my prayers. Hugs. Melodie

Melodie, Indy Pouch, U.W.Medical Center, Seattle, Dr. Paul H. Lange & Jonathan L. Wright

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11 years 11 months ago #18073 by harleygirl
My 81-year-old father had a nephrostomy with bag inserted on 6/4/08 because of nephrosis of his right kidney brought on by scar tissue blockage where the ureter joins the conduit. At the same time as the nephrostomy, they put a stent in the ureter. I'm not sure why they didn't just take the nephrostomy tube out after they put the stent in place.

On Tuesday, the uro capped the nephrostomy tube and removed the bag. On Saturday, Dad had SEVERE pain in the right kidney area and started bleeding again in the nephrostomy bag and urostomy pouch. The uro had told us that if pain developed we were to hook the bag up again and gave us ONE bag and showed us how to hook it up ONE time. Needless to say, my Mom and I weren't the best candidates to try to get all these pieces together while Dad is moaning and literally crying from pain and blood is squirting everywhere from the tube! Mom ended up dropping the new bag on the floor.

We decided to take Dad to the ER (remember it's Saturday, of course. Nothing ever happens during the week!) because SURELY a hospital will have a nephrostomy bag, right? WRONG! We spent 5 hours at one hospital while they "searched" for a bag that would fit. Finally, we asked for a copy of the CT scan and blood work they had done and we checked ourselves out of there. Logic told us that if we went back to Dallas to the place where he got the bag originally, they would have a bag. So, we drive all the way to Dallas (luckily Dad's pain had subsided a lot) and had to wait 2.5 hours in that ER while someone there searched for a bag!! The interventional radiology department where the bags are kept was "Closed"! It seems nobody had a key to the closet where the bags were kept. Finally, a nurse came up with a bag that would fit. It wasn't the same type of bag the uro had originally given us, but it worked anyway. It was an 8 hour ordeal just to get a bag! Needless to say, my Dad was exhausted by the time the bag was hooked up.

His hemoglobin had dropped from 8.8 on Tuesday to 8.4 on Saturday. His RBC has steadily been declining since January. Yesterday, he was transfused 2 units. He is still bleeding from the nephrostomy tube and into his urostomy pouch. He is also bleeding into the gauze covering the area where the tube was inserted. The uro was out of town last weekend and just got back to his office yesterday, got the emails I had sent him about the pain and bleeding and called me. He said he is not worried about the bleeding as the nephrostomy tube is loose and wandering around in the kidney and, depending on Dad's movement, could hit a blood vessel and cause bleeding. Dad's bleeding had stopped for 4 days before it started again. The uro was also not thrilled that Dad had received a transfusion (the oncologist/hematologist ordered it). The uro says that the more you get blood transfusions, the more the possibility for problems down the line. He is looking ahead to any surgery Dad might need in the future in case of residual urethra tumor and didn't want to have any problems with typing and cross matching. However, I think Dad needed the blood. But, if he continues bleeding, isn't this new blood just going to bleed right out and be wasted?

Dad is scheduled to have the nephrostomy tube removed on 6/24. A radiologist tried to remove the tube on 6/6 to "save us a trip" back to Dallas and he hit an artery and Dad lost a lot of blood and had to be transfused then with 2 units. The doc had Dad keep the tube for about 3 weeks longer to hopefully form a little scar tissue so the prior mistake won't happen again. I'm worried about what's going to happen when they try to remove it again. The uro says it's a "simple" procedure. I've learned that when they say a procedure is going to be "simple" that means you should get the heck out of there as fast as you can!

Has anyone else had bleeding that stopped and started with a nephrostomy tube? And, did you bleed into the dressing placed over where the tube was inserted?


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12 years 1 month ago #16097 by Julie
Now it's clearer. I have been in the hospital recently when they wrote everything by hand. It took hours and the next time I was in they had computers but it still took hours. I learned the residents will tell you they are going to do something but they don't tell you it is when they get around to it and that might be 6 hours later.
We were used to 2 units of blood taking at least 5 hours not including cross match time. The last time he got 2 units at the Cancer Center here they did it in under 4 hours. We figured they must know what they are doing they skipped a lot of steps that the hematologists/oncologist clinic did in Madison. We are still getting used to the way medicine is done here in Arizona.
I'm glad you are feeling better. I hope your rbc stays up. Julie

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12 years 1 month ago #16094 by Maria
Julie, got home at 2pm this morning, we are one hour drive from the hospital.
Seems the computers crashed caused chaos and nurses were delayed because they had to record everything which consumed their, just can't trust it.

The transfusion took a total of 6 hours then we had to wait 30 minutes for lab work before they could let me go. Not to worry its done now and I do feel much better today.

With regard to the nephrostomy tube, that has not been a problem. The urine drainage bag developed a leak. As mentioned, I contacted the Shands who did the nephrostomy and true to their word I received delivery this morning of 2 new drainage bags.

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12 years 1 month ago #16076 by fearandfight
Oh I see Maria a misunderstanding on my part but good luck to you anyway I'm sure things will work out for you keep the faith. Joe ;)

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12 years 1 month ago #16072 by Julie
I hope you are home safe in bed by now. Getting out of the hospital at 12:30 in the morning doesn't sound like fun. I hope you don't have far to drive. Sounds like your transfusion experience did not go smoothly. Re chemo fatigue I think the major reason is the low red blood cell count.
Did you mean one of your nephrostomy tubes disappeared? Did it come lose from the stitches? The stitches on one of Dick's came lose from his skin and they had to redo the stitches.
I hope it is smooth sailing from now on. Julie

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