What they don't tell you....

This post is probably better suited for those of us who have the unfortunate circumstances of a nephrostomy tube than those of you who don't. If you have a weak stomach or throw up easily you better stop here. I am warning you. For real. Okay, for those of you still reading. Here are the things they DON'T tell you when you get a nephrostomy tube.

1. for the first few days you will look like you have a bag of whole blood strapped to your leg transfusing through the kidney via your way cool (nasty) leg bag.

2. Beyond the first 3-4 days your pee clears up to deep cranberry color with LARGE and I do mean LARGE chunks of kidney floating amongst the massive clots.

3. Your pee never quite returns to normal with the tube in place.

4. It absolutely does not feel like a 'ear ring' being changed when having the tube replaced. Immediately refrain from slapping the person who tries to fill you with this LIE! If you don't refrain, you can always fall back on a lapse in judgement due to the severe pain and TUBE STABBING IN YOUR BACK!!

5. The tube does feel better in place to relieve the pressure and in my experience (5 stents total- the nephrostomy is a MILLION times better than an evil stent.

6. Anything and everything that I was never told would happen (which was hardly anything at all) happens and when I have asked have been told "that can be normal" which has lead me to the conclusion that there is no normal with having a nephrostomy tube and that by and large nephrostomy's are not normal and therefore have no semblance of normal what so ever. The faster you deal with it the faster the panic subsides of passing large chunks of your kidney and clots and whatever the heck the white wormy strings are?

7. Kidneys that are sick pass 'junk' and 'crap' non stop. its nasty and disgusting.

8. There is NOTHING cute about pee strapped to your leg. But, dresses can be cute and cover the pee bag strapped to your leg quite nicely and its a great excuse for a new dress ;)

9. Punching a whole in the wall out of fear, panic, pain and frustration does NOT make your nephrostomy any easier to deal with nor does it disappear. Nor does it mean you have anger management issues. I think any adverse reaction to having a tube stuck in an organ and being sent on your merry way with a 'good luck, hope you feel better' is completely rationale. I'll be happy to stick a tube in your kidney if you disagree, and we'll go from there. Enough said. uh huh.

10. It becomes second nature to have in place regardless of what you think the day it goes in. Even the discomfort and pain become something you just deal with and expect daily.

11. Some people block tubes faster than others, some WAAAAAY faster than others. Some people like me.

12. A blocked tube can feel like NO tube at all. Kidney's must have lots of nerves because they HURT bad when they swell/block up. Horribly so.

13. I was ready to have the tube OUT the day I had it put in but I want my baby in and not out so the tube stays so the baby stays. its a symbiotic relationship. a contract with mother nature if you will. its a crappy one but it works. as dr. phil would say "how's that workin for ya?" very well thank you when you get right down to it so we do what works. and so it goes, i have a tube in my back stick'n in my kidney and a baby in my uterus named Madden. Go me, GO!!! (really I am thankful for the arrangement. Really. I may be sarcastic and bitter at times but I know when to count my blessings and I count this one a whole heck of a lot.)

14. Most of the time I don't hate it as much as I think it do. But I still don't like it. Yea, I do hate it. But, its better than an exploded kidney.

15. I hate my kidney and I love it. We have a love hate thing going on. We forgive and forget. The next dose of forgive and forget is coming up some time at the middle or end of June.