Nephrostomy Tube

The week following the nephrostomy tube insertion was fraught with discouragement and frustration. I tried to remain optimistic by telling myself, “At least it’s not a rejection! And hey, I am not diabetic anymore, so this is totally worth it!” But I was leaking urine from my tube day and night. It got all over my clothes, it smelled, and I carried around a ‘pee-bag’ attached to my leg that I had to unscrew and drain in the toilet every couple of hours. Also, the pain I felt during the procedure never went away. It was a horrible burning sensation in my stomach just underneath the insertion site.

I don’t mean to complain or sound negative. Looking back, I suppose would rather have some complications during recovery rather than during surgery. So while it really wasn’t that bad, it still took its toll on me mentally.

The breaking point was when I started leaking urine from the insertion site. I leaked A LOT of fluid. Imagine peeing from a weird hole in your stomach. You can’t stop it, it’s gushing down your clothes, and you just want to lay down and cry. I couldn’t do that, so I went to the Emergency Room, then back to the angiogram team. After 3 days of trial and error, and two different tube replacements, they finally stopped the leaking. The painful burning sensation, we all found out, was from the original tube not being inserted deep enough into my stomach. Apparently, I was feeling pee rush from a hole in the tube into my open flesh. (The hole is supposed to be there, but it’s supposed to absorb fluid from my kidney.) It burned. It burned really bad. But now it’s all gone.

On the brighter side, I returned to work on Monday to find my desk adorned with kidney and pancreas pictures. One co-worker went so far as to clip a ‘pee-bag’ to my wall. (She used pickle juice and a sandwich baggie.) It looked very authentic. Another co-worker brought in kidney-shaped rice crispy treats. Ha ha! Do I have a cool team, or what?

Everyone was overjoyed to see me and treated me like a celebrity. It is good to be around the beautiful smiling faces I’ve missed over the past 5 weeks. When people ask how I feel, I tell them mentally I feel better than I have in my entire life, but physically I am still catching up. My surgery scar is nearly 100% healed, the nephrostomy tube will remain in my stomach for another 4 ½ weeks, but it is no longer painful, and it no longer leaks, and I am no longer connected to a 'pee-bag' so I am urinating normally.

By the way, I recently discovered where the ureter is located. For some reason, I thought it was some sort of muscle near my prostate, but no. It is the tube that connects the kidney to the bladder. A-ha! So now I understand how the tube is helping to keep the ureter open.

Some minor annoyances have been when friends try to give me health advice. I know it comes from a good place, so I try to take it in stride, but what they don’t understand is that I have an entire team of medical professionals telling me exactly what I can and can’t do, what I can and can’t eat or drink, and what precise steps I need to take to ensure my health. It’s not just one doctor. It’s not just one person at the transplant clinic. It’s a team of surgeons, nephrologists, doctors, and pharmacists who deal EXCLUSIVELY WITH TRANSPLANT PATIENTS. Most people understand this, but there are always a few who think they know better.

Those rascally scamps!

Anyway, the entries into this blog will probably come less frequently, but they will continue until I am completely healed and functioning normally. I may even post a few entries after that, just to reflect on my life as a new person. I still need to write a letter to the donor family. It will be hard to write, but I know I need to do it. I’m just not sure how to express my gratitude…

Thank you for following this adventure. It has been an awesome roller coaster ride and I’m glad everything is turning out for the best. Your kind thoughts and well wishes have not gone unnoticed and I’m glad you’ve been here with me. Your encouragement has really helped.

Rock N Roll!!