What A Day!

I’m shivering on a cold metal bench next to a valet station breathing in exhaust fumes in my pee drenched skort on a surprisingly chilly, cloudy morning in Arizona. 

But let’s rewind...

Yesterday I was on the Mayo app for the 100th time of the day scouring for signs of life! Hoping that I would see a stray note or message from any of the doctors when I saw two doctors I hadn’t even seen had put notes in requesting a CT Urogram and a consult with the urology surgeon. After almost 3 weeks down here I know not to waste any time so I called the scheduling line and was able to get those thing scheduled for today right after the biopsy. I was annoyed that so much was happening right before our planned departure but thankful it was happening. I was a little nervous about doing the CT right after the biopsy so I called my nephrologists office and asked but didn’t hear back so I assumed it was okay...

It’s worth noting that yesterday Titus and I also came down with a stomach bug and were throwing up and out of it all day! 

This morning I woke up for my kidney biopsy feeling a little better but shaky from not eating or drinking the day before but I couldn’t do either before the procedure. I showered and got dressed and was ready to go when my mom confessed she was really nauseous now. We decided she should stay at the hotel and my sister would drop me off at the hospital and then take my son to tour a lizard sanctuary (I wrote a letter to them explaining why we are here and his desperate desire to see a lizard and they offered to give him a free tour! He loved every minute of it!) then come back to the hospital. 

She dropped me off and I went in and got all checked in, including the medical wristband adorning my wrist like a sad corsage. 

As I was sitting there playing spider solitaire on my phone waiting to be called back the receptionist called me back up and told me nephrology was on the phone for me... 

I answered apprehensively. It was the nurse from the nephrology clinic calling to say that my kidney biopsy was canceled. I was shocked and asked why but she didn’t know and said she’d have the doctor call me when he was finished with his patient. Then she asked me to pass the phone to the receptionist who murmured affirmative words then hung up and offered to snip my wristband off. 

I called my sister and told her I was done but to take their time with the lizards and then called my mom to vent. I sat on a bench and noticed my beloved cozy skort was wet all along my waistband and realized my bag must be leaking. Thankfully I had a spare because I thought they may need one at some of the tests so I quickly made it to the bathroom to change it but there was nothing I could do about my stinky, soggy clothes. 

So I sat on the bench and began this sad blog but it was too overwhelming and I didn’t have any resolution to it all yet so I got up and just walked around the entry cactus garden... My new cactus friends didn’t even make me feel better, I was so frustrated! The one test that I actually thought might give some answers was canceled! 

Finally the nephrologist called and said he had talked to the chuckle head urologist I saw on the first day and he said he’d come up with some better ideas and not to do the biopsy. This is the same doctor who had someone call to tell me they were canceling my appointment with another urologist because they all work together? Suspicious. 

So Jeny (my sister, rhymes with Deni... Jeny and Deni, get it?) picked me up and we headed back to the hotel where my mom was feeing better and after a little relaxing we headed back to the hospital for the CT. I checked in and waited almost THREE HOURS for the 10 minute test... Thankfully the receptionist called and the urologist said she’d see me whenever I could get there... 

The CT was relatively easy except my pain always increases after a large intake of fluids, even if it’s just drinking a few big gulps to get medicine down much less injecting a large amount of saline into my system quickly. 

Then we shuffled over to the other building, we were quickly called back and brought straight into a room where a doctor was actually waiting for me! 

He introduced himself then asked me to tell me bladder story... (this was the very first time a doctor at the Mayo Clinic asked me to just tell them my version of the story and not just fill in blanks or answer specific questions). He stopped me to ask questions a couple times but mostly he just listened and took notes. He studied my test results and images. Then he said he would go discuss with the surgeon and they’d both come back in. 

They were gone for like 40 minutes but then he and this gorgeous woman, who was so kind and caring, came back in and she said she’d been following my case and discussing it with other doctors. She said she thinks there is some systematic issue that’s causing the cells but in the meantime she had an idea to treat the symptoms. She thought we should try putting a catheter all the way into my conduit then stitch it in place and see if that makes thing better or worse. If it makes things better that could mean that there is some issue with the mechanics of the conduit and it’s not draining properly. As she’s talking I see the resident that I spoke to at the beginning of the visit gloving up and preparing a surely dryer duct sized catheter. Nervously I hopped on the exam table and they began trying to insert it into my stoma. With tears streaming and teeth clenched I told them it was tolerable as they continued to work on jamming this tube into my stoma. He got the tip in a tiny bit at one point but it “shot out robustly” (his words but I appreciated them!) They hummed and hawed then decided they needed a wire (a wire?!) and proceeded to try even inserting the tiny wire in but even that wouldn’t go in... 

She said that this was telling in and of itself and was worried that there’s a stricture right before the opening of the stoma and that they really needed to scope my conduit. 

Then after some kibitzing they decided they would do it with me sedated in the OR then they could revise my stoma if they see an easy fix or insert the catheter and look around as much as they can, as well as repeat that horrifying loopagram test I had over a year ago, and hopefully give us more information. They told me to check in for surgery at 5:30am. 

That was that. So in just 5 hours I will be going in for surgery... we have no idea how invasive it will end up being or if I’ll be admitted or not... 

Ultimately I’m thankful for forward motion and a doctor who is finally truly on the case! She even told me she was going to speak to the first urologist... she didn’t say she was going to give him the business but I definitely got that impression! She also informed me that the urologists still haven’t had their conference about me yet and were awaiting all the tests and images so hopefully after this they will finally be able to do so! 

As thankful as I am to be making progress I so wish I had seen her first and this was all happening at the beginning of our stay here not the day we were planning on heading home! 

Sadly that means that my sister and son are going to head home without us... it’s been so nice having them here and it made me relax and forget all thing medical even for just moments here and there but its time... it’s hard saying goodbye to my sweet boy all over again. I’m hoping the surgery will going okay, they’ll get the catheter in, there won’t be any complications and I can just go home with it in and have my urologist remove it in two weeks. Or is that what I hope? Because maybe that’d mean I need my whole conduit revised. I don’t know. But either way I pray that we will have answers, solutions and I can go home soon!! 

I apologize for the very factual nature of this blog, it was such an emotional day but I wanted to update those who so lovingly have been checking on me and this seemed to be the easiest way! Stay tuned for a comical and entertaining blogs another time! 

I’ll try to update as I can but service is impossible at the hospital and I’m realizing that it’s hard for me to update when I’m so emotionally, mentally and physically draining but I SO appreciate you guys checking on me!!