Obstructions and frustrations

I’ve had several dear ones ask for an update recently and I realized a lot has happened since my last blog so I figured I’d catch you up! Last I wrote to you I was getting ready to fly home with a tube sticking out of me like a straw out of an iced coffee. 

I made it home and all was well... for just over 24 hours. Then I woke up in the middle of the night with sharp pain in my stomach and my back. I didn’t have any idea what it was at first. I tried everything I could think of to ease the pain... going to the bathroom, taking a shower, laying in bed, sitting in bed, standing, rocking myself... Then I started vomiting and I knew something was drastically wrong. 

In my completely uneducated but pretty experienced mind I felt the only possibility was that the tube was somehow obstructing my left kidney. So I woke my mom and we rushed to the nearest hospital. I obviously should have made the hour long trek to the university hospital where my specialists are but the pain and nausea were overwhelming and I truly couldn’t make it. 

We checked into the ER and were rushed back but I had some lame-o nurse who never even really asked what was going on. I was literally shaking from the pain and could not stop vomiting into those horrible green collapsible vomit bags. 

I can easily say I have never been in as much pain as I was that night. It truly took over my body and used every ounce of my being to get through it. I plead to God like I never have and honestly... there was a moment of frustration after hours of begging Him to make a doctor appear to help me that I wondered if God was truly there in that room with me. I hate that the pain made me question that. So many times God has shown Himself in this process and it’s hard to accept that my faith was soft enough that the weight of that pain was enough to bend it. 

Finally after almost 3 hours in that room without a single dose of care or medication I got a new nurse who seemed to truly care. He went and bugged the doctor to at least put in an order for pain and nausea meds. 

I usually don’t accept narcotics in the ER because of how often I have to go there I don’t want them to ever think I’m there for the drugs but this time I was so relieved the moment those meds hit my blood stream and the wave of numbness and sedation followed. 

My new angel dressed as a nurse told me it was right before shift change and the doctors hate taking on new, complicated patients but it didn’t take too long for him to snag a fresh one as soon as he got there. 

I was (thankfully) pretty drugged by this point and I don’t really remember much but I know the doctor was really overwhelmed and said he’d order a CT. I don’t even really remember that happening but the results showed I had hydronephrosis  (excessive fluid in the kidney). It seemed to indicate that my self diagnosis had been correct but considering neither I nor the doctor were specialists he wanted to send me to UW where my specialists are. We were all relieved that I’d be seen by the doctors who knew more about my complicated urinary history. 

A few minutes later the doctor came back in and informed us that he spoke to a urologist at UW and “they didn’t want me”. I still don’t really understand what happened there, whether they didn’t know what was going on or if they thought it wasn’t their problem since they didn’t put the tube in or what... 

So the doctor decided to admit me and have their urologist give it a go. Just really fills ya with confidence eh? 

The urologist came by and he looked like a guy who would play a doctor who steals medical equipment and sells it out of the truck of his bronco in a soap opera. That mixed with his obvious lack of confidence was concerning. Then he ordered a loopagram. Fear struck my heart as if he ordered a test where I would gentle descend into an alligator pit. (Feel feel to read my blog about my horrifying loopagram experience https://how-ic-it.blogspot.com/2018/02/loopagram.html?m=1) 

Thankfully at this point they had moved from dilaudid and Benadryl to Ativan and tramadol so I was nearly comatose. (I even sent my dear friend a video that was so disturbing it was comical of me attempting to talk but I just kept falling asleep and whispered “I’m trapped” at one point.) Also I had that catheter still in my conduit so they didn’t have to insert anything in my stoma this time. They just injected their potions straight into the tube that was already sticking out of me. It still hurt. Tears still pooled in my eyes and I squeezed another kind nurses hand. 

The two radiologists muttered to themselves as they directed the nurse and me to adjust things for the viewing pleasure. Then one told me, “it looks good, no obstruction. We can see the dye go all the way up to your kidney.” 

I was shocked! I said to the nurse “I just don’t understand.” I pointed to my abdomen, “I could feel intense pressure right here when they injected it in. What else would that be?” 

The sweet nurse said... wait for it... “maybe you need to fart?” First of all. If I was telling you this story in person I would have said “the f word that means toot.” I hate that word. It’s so crass and unnecessary. Second of all, really? 

I thanked the radiology team who performed the test and was back in the ER in no time. I told my husband, friend, and mother-in-law who were all there when I got back that there was no obstruction and we were all frustrated with all the unanswered questions. Why would the pain have suddenly increased to such an acute level? Why did my urine look like pure blood instead of urine? What was going on? Who was going to help? 

Not long after that I was told that my inpatient room was finally ready and was wheeled upstairs. My heart sunk as I realized it was  a two person room... 

Now not to completely go off on a tangent but seriously... how is it 2019 and people are still sharing hospital rooms?! We have to stand way behind people checking in for a doctors appointment to give them privacy but then you get admitted and you’re a thin, faded sheet away from another person while they go through the humiliating unpleasantries of any hospital stay. You hear each other’s consults with their doctors, you see them shuffle to the bathroom, you smell their food, you hear them snore and vomit... All while their hearing you do the same! It’s inhumane... It didn’t take long to hear my roommate had an... anal abscess... and the things she had to go through were truly unfortunate but it wasn’t a picnic hearing them either. 

Anyway. Not long after I was as settled into my portion of the room as I could get did the radiologist himself show up. He was kind of out of breath as he told us that he was so sorry but they realized they’d been looking at my images backwards and my left kidney was in fact obstructed. 

Apparently... they usually have the patients lay on their stomachs while they do the test but I had to be on my back so they could access my stoma. So when they thought they were watching my left kidney it was actually my right one. When they looked back at the correct side they saw the dye wasn’t going up into my left kidney. *Slap palm to forehead now.* Don’t ask me why they weren’t looking at both sides anyway! 

Next the urologist showed up and said he thought we should remove the catheter in my urostomy and then give my kidney one night to drain and if things didn’t clear up after that he would have to put a nephrostomy tube in. From what I understand it’s a tube that is inserted into the kidney that has a little bag attached externally to drain the excess fluid in the kidney. I was terrified of that and definitely didn’t want this random urologist who didn’t know anything about my complications to be doing any real interventions but I desperately wanted the tube out. So I agreed to that part and figured we’d worry about the next step after we found out if that did the trick or not. 

(I also want to mention that throughout my 3 days in the hospital my mom, the doctors and I tried contacting the Mayo urology team several different times and ways but we never heard from them. They literally just put that tube in me then sent me homes and washed their hands of me. Ironically enough, that finally made me write to the Patient Experience team to share my frustrations but I never heard back from them either...) 

Sweat and tears soaked my face as he dug into stoma with scissors and tried to snip the stitch holding the tube in place. I was just about to tell him to stop when he announced that he got it then pulled the tube out. I seriously still get shivers just thinking about that! Thankfully he told the nurse to give me an extra dose of meds and I drifted into fitful sleep in no time. 

The next morning I woke up and mentally examined my pain so closely that I couldn’t be sure what I was feeling in comparison to the day before. I had to have medication all night long to be able to sleep through the pain but it seemed less intense, less breathtaking. 

I wasn’t allowed to eat or drink all day in case I had to have that surgery. The urologist ordered an ultrasound to see if the fluid was still trapped in my kidney. Hours passed slowly until finally they came and got me and a old, round man quickly and painfully ultrasounded both sides. Then he declared the hydronephrosis resolved. 

I didn’t get my hopes too high until I heard it from the doctors but sure enough the urologist came by soon after that and told us that although the kidney still seemed a little swollen from the trauma of the ordeal it was no longer obstructed! He said it would take a couple days for it to recuperate from everything it had been through and after 2 full days of such intense pain and nausea he wanted to make sure I could control my pain and nausea orally as well as eat and drink so he said he’d keep me for one more night. 

The next morning I felt better. All my meds were by mouth and I was able to eat a muffin! I was home and in my bed before lunchtime! 

Wow. What an ordeal! We still don’t really don’t know what happened... my theory is that the tube just got pushed too close to where the left ureter is hooked up to my conduit so the urine just couldn’t get by. 

I happened to have already scheduled my nephrology appointment for two days after I was discharged so it was nice to see her and get her perspective. She agreed that the obstruction was caused by the catheter and commented on how healthy my right one must be because even with being down a kidney my levels were all stone cold normal.

It’s so confusing and yet wonderful that after everything my kidney function is still so normal. She said it seems unlikely that there’s eosinophils in my kidneys because if there was she didn’t think they could be functioning so well... However with my symptoms, the inconsistent lab results, and the fact that I’ve had such an extensive work up of the rest of my urinary tract she felt like it would really be worth doing a kidney biopsy which should be in early April. 

The next night I got an email that the rheumatologist had a cancelation so there was an opening early the next morning! 

He was also very nice and if nothing else he seemed intrigued by me. I have already had a full work up of autoimmune disease and he felt confident it wasn’t any of those. He also didn’t seem to be interested in my theory that my body is allergic to my urine. But then he did something literally not one other doctor has done... He bypassed trying to figure out why my conduit is doing what it’s doing and just skipped ahead to what could we do about it. He kind of broke it down and just thought out loud... What could help inflammation that doesn’t respond to steroids? He mentioned a drug that typically treats lupus that could maybe help! So I’m giving that a try... He said it could take 1-3 months to tell if its really helping but I’m trying to be hopeful! 

I told the nephrologists that as crazy as it sounds my goal is to be doing better by summer. Have you seen those “come visit Idaho” commercials? The one that says “you only have 18 summers” or something like that?! They get me every time, it’s just so true. We’re almost halfway done with summers with my baby... It’s hard enough to not get to enjoy every day with him but summer is our season and I can’t be this debilitated during our season so.. chop chop!