Fortunately there isn’t that much mechanically that can go wrong, It’s just
patience and experience. There are a few health concerns, and situations to
deal with. Keep your head cool, it will all be fine.
Emergency Issues — What to do if…
The tube comes out:
It only happened to me because I was playing with the dial that Locks the pigtail in place (don’t do that).
Stay calm, head to the ER, they need to put it back in. If you’re leaking out of the hole in your back, you can put some Saran wrap over it, or wrap Saran wrap around you. It’s also ok to just put a folded up piece of gauze over the hole, and cover it with a dressing. You’ll be fine.
Flank Pain — Dull ache with fever:
Call your Doctor. This could be a sign of infection. Be calm. Depending on how high a fever, he may send you to the ER.
Important Issues
Flank pain – dull ache without fever:
Call your Doctor. This could also be a sign of infection. Maybe not. The doctor may want you to just come in and do a Urine Culture or Urinalysis to check for infection. Be calm.
A tube clogs or stops draining:
It is important to be aware of how much flow is coming down your tubes on a daily basis.
When you have coffee, a beer when you drink a lot of water, and when you don’t. If you are concerned about a potential blockage, you should have been given instructions on how, and how frequently to flush your tubes. I have found this rarely needs to be done, and there is always concern about introducing infection (or simply nasty stuff) up into the kidney, so be sure to use the alcohol pad to clean everything.
Your transition piece should have a needleless port for back flushing into the
kidney to clear the holes that may be clogging a tube.
Wipe the needleless port with an alcohol pad, and attach a 0.9% Sodium Chloride Injection Syringe to the needleless port (it just screws on). Close your clamp so the fluid will go up in the kidney, to flush out debris that may be blocking the holes.
Slowly depress the plunger to inject fluid into the tube.
NEVER PULL.
Inject approximately 5cc, then undo the clamp and allow to drain. Repeat if necessary.
SOMETIMES, the “Y” itself is clogged from debris coming from the kidney.
In this case, if you can disconnect the “Y” from the transition, you can “blow out” the “Y”, then reconnect it. Proceed to try to flush again. We have designed a “Y” port that does not clog, ever, but we have not brought it public yet.
IF YOU HAVE CONSTANT problems with tubes clogging, ask your Doctor about replacing your Catheter with a larger diameter Catheter.
A LOT of Debris in the tubes:
Ok, this is doesn’t make sense, but no cause for worry. You have plastic tubes in your kidneys, and your kidneys don’t like that.
So, your body is constantly trying to do something about it. Most of the time this looks white, sometimes with red bits of debris. When I use the night bags, with the large tube coiled up, you can see the debris collect at the top, and the debris from overnight settles in the bottom of the loop, and you can’t even see through it.
I can tell you after two years of worrying about it and pushing my Urologist and Nephrologist for an explanation, it’s fine, and doesn’t mean anything. All good. No Worries.
Infection – Urine Cultures and cultures that don’t help, by saying “Mixed Flora”:
If you are not using your bladder, you may not feel the irritation of a Lower urinary tract infection (LUTI) because the infection is up in your kidneys.
You want to keep an eye out for Flank pain, and fever, those are your signs. Typically your doctor will do Urinalysis, and a Urine Culture, and while they are waiting for those results, will put you on a Broad Spectrum Antibiotic (kills lots of stuff that’s “probably” the cause). Once your Culture comes back, and they can actually see what’s growing, they know if they put you on the correct medicine or will change to a different one.
Here’s where the problem comes in.
In a regular Urine Culture, when more than one thing is growing, they sometimes assume the sample was contaminated, and just report back with “Mixed Flora”(multiple things growing). Since we have tubes in our kidneys, more and different stuff can get in and cause a problem. “Mixed Flora” doesn’t tell us WHAT is growing, and if the Broad Spectrum Antibiotic doesn’t kill it, you still don’t know what you got, and HOW to kill it.
There is a newer alternative to “Urine Culture” called MicroGen (https://microgendx.com/). This is different than just Microscopic Analysis. Instead of trying to grow “whatever is in there”, they do a Genetic Analysis and can tell you in just a few days, with 99% accuracy, what you have and what will kill it.
Hopefully, your doctor knows about this, if not, you may need to help him.
Irritating Issues
Ow! Did I rip the stitch? (Stabbing pain):
When you reach for something, it feels like you ripped the stitch out, or you were stabbed.
This most likely is a crusty ooze that has come out of the hole and crystallized under the tube, between the stitch and the skin. It is the spiky crust that’s stabbing you, nothing more. If you don’t get the stitch put in, you will almost never feel this.
Of course, if you did rip the stitch, it’s not a big deal either.
Sometimes when your friend changes the dressings, you will see the stitches sliding up and down the tube because they have pulled out and you didn’t even know it! That’s why we like a window dressing with a built-in adhesive securement. It secures the tube, and eliminates the debris and crust between the stitch and your skin.
Skin itchiness at the site:
This occurs mostly when the dressing is just changed.
As stated earlier, some irritation can be mitigated by not using Adhesive remover, and/or by waiting 15 minutes after applying ChloraPrep (instructions say 3-4). When that’s not possible, some relief can be gotten by spraying the perimeter of the skin around the dressing with Cooling Itch Relief Spray 1% Hydrocortisone.
Sorry, That’s the best we’ve found.
Skin itchiness at the leg straps:
At the end of the day, or before, the skin under the leg straps is irritated.
This can usually be fixed by not having the straps too tight around your leg. They need to be just tight enough so the bag doesn’t slip when it’s half full, and just getting ready to slip at three-quarters full. It takes a while to learn to get the straps “just right”. Think “The Three Bears.”
Annoying Issues
The tubes fall behind your legs when sitting:
This used to drive me crazy, especially when I would be in the car.
It took me a year and a half to figure this solution out. Just take a pipe cleaner. A fuzzy coated pipe cleaner. Wrap one end of the pipe cleaner around each tube, in front of you, where the clamps are. This keeps the tubes in front of you, and the pipe cleaner won’t slide down.
Your tubes are now directed on top and to the sides of your thighs to the bags, without the ability to fall behind your legs.
You are told repeatedly to STOP SCRATCHING at your dressing!
I am sorry, my friend, We have found no fix for this.