Tuesday, May 7, 2019
Three times I have written complete blogs, read them, and deleted them. I want to update you on everything going on but I can’t figure out how to inject humor and levity to my current circumstances. I can’t find a way to explain where I’m at without it sounding like a bad cable movie that leaves you depressed and not at all entertained.
Which leads me to consider why you’re reading this blog anyway. Is it in search of entertainment and a laugh? I doubt it but if so, I don’t recommend this one. Keep scrolling. Is it because you’re in the depth of end stage IC and you’re looking for hope? This isn’t the right one for you either. Is it because you just love me and want an update and to support me? Thank you, from the depth of my soul. My dear, sweet friend sent me a series of encouraging gifs yesterday and I keep thinking back to one that said “I know I can’t stop the downpour but I will always join you for a walk in the rain.” That’s all I want from my loved ones and when they/ you give that without me asking for it I crumble from the weight of my gratitude. So I will give myself permission to just be honest and kind of just ramble in this blog. Thank you for indulging me.
Last I wrote, I was just about to try a new medication but I ended up having an allergic reaction to it and was never able to find out whether it could help me, then I went in for my kidney biopsy only to have it called off at the very last second when they found fluid in my kidneys (hydronephrosis).
I was devastated for a few days. Those two things were my last hope. The last chance of noninvasive treatments and finding answers to all the mysterious problems I’ve had in my urinary tract since I was in elementary school.
The next step is one that has loomed closer with every negative test and failed treatment. In 6 days I will go under general anesthesia and they will put nephrostomy tubes directly into each of my kidneys through incisions in my back. The theory is if the urine drains straight out of them it won’t have time to wreck havoc, reflux or retain in my kidneys. As soon as it’s made the urine will drain straight into bags, one for each side. So I’ll be walking around with THREE bags (a drain bag for each kidney and even though there won’t be much, if any, urine draining through my conduit I still have to wear my regular urostomy pouch too). I can’t decide if my new nickname shall be pack mule or bellhop.
It should be about a week of recovery from the procedure but if after that my pain is improved... or dare I hope... gone then we will know the conduit is the cause of all this suffering and we will move onto a permanent solution.
Ureterostomies. They will take out my entire urostomy system and make stomas out of my ureters (the tubes that normally connects the kidneys to the bladder). Unfortunately that means I would have two bags for life.
The alternative, however, is much worse. If the nephrostomies don’t work... they have no more ideas.
Which means no more tests, treatments, information, answers, and no more hope. It means labeling this my two most feared phrase... “chronic pain”. That makes the idea of two (or heck, even 5) bags not look so bad.
As usual my stress is getting ahead of me. I’m trying to just take it day by day but I’m constantly squelching one worry only to be bombarded with another!
May is equally my favorite and most dreaded month. It’s full of so much fun- some of my favorite people’s birthdays (including my own), Mother’s Day, the beginning of the sunny season in the Pacific Northwest, festive and easy holidays like cinco de mayo and memorial weekend. But... it’s also the anniversary of loosing my bladder (5 years ago) and my Dad (4 years ago). Also those things I love about May like sunny days and celebrations induce anxiety like nothing else does when my health is in a particularly difficult seasons.
How can I thoroughly celebrate my moms birthday when I can barely stay out of bed for a whole afternoon?? How can I hope to go out on Friday night for dinner and drinks for my friends birthday when the idea of wearing pants makes me whimper?? How do I make plans, much less execute them, to celebrate my mom and my mother-in-law on a sweet Sunday when I’m focusing so hard on only taking the bare minimum doses of morphine?? How can I bask in the glorious sunny skies and warmer temperatures when I can’t even find a comfortable position to lay in bed?? How do I celebrate my own Mother’s Day when most days I feel like I barely deserve the title?? How do I celebrate my birthday when I’m basically just celebrating another year of misery??
I do everything I can to not even glance out at the blue sky that seems to taunt me, I try not to notice the tan that my husband’s already getting, I don’t even open the weather app and I dread looking at my calendar. As much as I try and no matter how I feel, I cannot reschedule or stall these things from coming. I either have to drug up and fake it until I make it or I just have to miss out.
Maybe I should be cheerful as the day I get the nephrostomy tubes approaches, maybe I should have hope that this will finally be “it”, maybe I should be reveling in the time I have left that I can lay on my back... Instead I’m just worrying about not being or doing enough, anxious about missing precious moments with my family, and dreading the official surrender that is coming so soon no matter what happens.
I’m really trying to rise above, trust that God loves me as much as He says he does, and just enjoy what I can and accept what I can’t. It’s just so much easier said than done...
Thank you all for doing this life with me, for walking with me in the sun or the rain. I truly wouldn’t blame you if you gave up on me but I’m so thankful you haven’t!
Also, I want to publicly say happy birthday and Mother’s Day to my incredible Mom. In more ways than the obvious one, I wouldn’t be here without her. She keeps me going, she carries my burdens as if they are her own, she steps in when she needs to but steps aside when she can. She is my Mom, my sons Grandma, my caretaker, my nurse, my helper, my substitute... my true lifelong best friend.
Friday, March 22, 2019
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!
Monday, March 11, 2019
I got the call today... the one I’ve been looking forward to and dreading at the very same time. The one from the doctor where he says I should go home. Yay for home and all the comfort it brings! I’m trying to focus on that... because if I start thinking about 3 entire weeks here and leaving with more pain, no new diagnosis and no more treatment options I get a little overwhelmed.
Sadly that is the case though... I consulted with a urologist, gastroenterologist, allergy specialist, nephrologist, and a urology surgeon. Then today the whole urology team got together and talked about my case. The only consensus is that no one knows why my body is doing what it’s doing or how to help me. Their final suggestion is to meet with a rheumatologist but the one here doesn’t have availability for months so I made an appointment with one at UW on May 1.
Other than that they claim they will keep chatting about “my case” but I know that without me here, continuing to have appointments and tests results coming in they will forget all about me and my case will go unsolved by this particular team of doctors. Maybe there will be a Netflix documentary that’s like those cold crime case shows except they find medical cases that are never solved and then a batch of even smarter, even more adventurous doctors will pick up my case and decide they want to be the ones to solve it! But I hope I don’t have to wait too long to find out...
I scheduled a follow up appointment with an award winning nephrologist at home for next Monday and then I’ll see a nurse on that Friday to remove this blaspheming tube. Then I have a follow up with my urologist on April 1st to go over everything and see if he has any further ideas or thoughts now that we have ruled so many things out.
That is actually a good way to look at these last 3 weeks, a process of elimination. We now know what it isn’t. It isn’t a food allergy, medication allergy, tuberculosis, parasites, anything GI related, malignant eosinophilia, autoimmune eosinophilia, mast cell disease, no cardiac involvement, or any other typical cause of eosinophil cells. My conduit appears to be draining fine and isn’t obstructed as is the case for my kidneys. We also know my ileal conduit doesn’t look right and isn’t functioning correctly and is full of cells that are trying to tell us something...
All the doctors are overwhelmed and just out of ideas... In an email I got from the allergy doctor he wrote a similar long list of “what it’s nots” then said, “I haven't come across any mention of eosinophilia of an ileal conduit as yet but am continuing to review the literature and once done with that will probably also ask some colleagues, but most have never seen a case of eosinophilic cystitis let alone eosinophilia of the ileal conduit.”
As of now all our focus is on the tube poking out of me like a stick out of the wrong side of a s’more. I’m trying to keep a journal of when the pain comes to identify what’s bringing it on or not. Hopefully the next 10 days with this tube will give us some information.
If I can make it that long with the tube in... I’ve had some complications that are so gross that I will spare you... Considering I posted pictures of the tube sticking out of me like a proud voyagers flag on top of a mountain you can only imagine how gross it is. I will tell you that the tube has tried to make a break for it and when I told the surgeon that he said he wasn’t surprised because of my “robust” conduit. I am now striking that word from my vocabulary, especially when describing fine cheese.
So. Although I can barely sit without pain that makes me tremble, my mom and I are boarding a plane tomorrow afternoon headed for home!
Thank you all so much (again) for doing this journey. I wouldn’t blame you one bit if you yanked off your Team Deni jersey and quit the team after this leg of the journey went so differently than we hoped... but I get the feeling you’re in for the long haul and my overly exhausted and pain contorted nerves is overwhelmed by that. Thank you.
Also I want to publicly thank my mom for doing this entire trip by my side- experimenting with all sorts of take out food and movies on cable, taking me to every appointment and test, then overviewing them for hours with me, watching me cry while she tries not to, packing and repacking for our 6 moves, and literally getting me anything I wanted or needed.
I’m so thankful for my sweet hubby too! I haven’t spent this much time away from him in almost 12 years and I haven’t liked it at all! I’m blessed to have such an amazing partner in this life who has been working, holding down the home base and feeding the 6 pets... (Titus loves to tell people “I have 6 pets that he uses for siblings which means my mom and dad have 7 kids...”)
Of course I’d also like to thank my dear friends who set up the go fund me. I never would have guessed we would have been here for over 3 weeks and therefore it’s been way more expensive than I planned and we’d be living under a palm tree if it weren’t for their thoughtfulness and so many peoples generosity!
Okay this is seriously sounding like a acceptance speech but just a couple more... Also thanks to my dear friend Melissa who has patiently asked for updates and encouraged me every day and graciously wouldn’t let up when I thought I didn’t want to talk about things.
Also my Grandparents, Aunts, Uncle, Siblings, and Cousins who have been with me on this ride since I was 13 and are just as committed to praying and checking on me as they were at the beginning!
As the stars on stage actually accepting awards panic about... I’m sure I’m forgetting someone specifically but just know that every prayer said, comment posted, or text sent has meant so very much to me!!
Saturday, March 9, 2019
I think most of you know by now that I’m from Washington state, in a suburb of Seattle and Tacoma. I love it. I have never in my life wished to live any where else because it is truly my home and hopefully always will be! I love the big trees, the green in every direction you look, the glistening bodies of water that you can’t go too far without running into, the true four seasons and I even love the rain that makes it all possible!
One of my other favorite things is the big mountains looming in every distance you see. We’re surrounded by mountain ranges and of course Mt. Rainier in all her majesty! When it’s a clear day and the sun is out there is nothing more beautiful than a blue sky hemmed with the white and blue peaks of the glorious mountains. We even have a saying in the Puget Sound area, “live like the mountain is out!”
The thing about those mountains is they’re undoubtably massive and foreboding. I would never, from a distance or upclose, ponder whether I could climb them. (I acknowledge that some whackos do in fact climb these mountains and it is possible for them but I’m winded after a vigorous stair climb...)
But the mountains here are so different! I’ve tried to capture them with my phone camera but it’s impossible to clearly see the details and proportions that simply make them... minimal. I look at those petite, smooth mountains bare but for some brush, rocks, and occasion cactus. It makes me think even I could climb to the top of that glorified hill!
Then every time we drive closer to these “mountains” I realize it’s actually much bigger and so steep! You would have to be a skilled climber to summit these deceiving mountains!
This trip has been a series of climbs in various terrains and elements. Literally not one things has been as it seemed it would be or what I expected.
Yesterday morning I woke up at 5 am snuggled up with my sweet boy and realized I couldn’t say a true goodbye without waking him and making him sad to be leaving me all over again so I just petted his little face and said a quick prayer over him and got up and got dressed. We packed up our stuff and left leaving my sister and son there to pack up their stuff and head west towards home when they woke up. Our stay at that hotel was over but I had surgery to go to and a little recovery to endure so we needed to be closer to the hospital.
I got to the hospital and checked in and was wearing a fancy gown and socks in no time!
(This would be a good time to mention that while most of the doctors I’ve seen here have been incredibly disappointing all of the modern, high tech gadgets and ways of doing things were awesome and the campuses were all decked out and lovely!)
They got me hooked up to an IV and I met with all the nurses and doctors and was treated wonderfully! No one knew exactly what was going to go on in surgery so we were all a little uncertain but confident.
They wheeled me back to the OR for what my mom and I have guessed to be around my 40th time and they gave me the good stuff. The next thing I knew I was waking up in the recovery room in more pain than I can remember. Tears were streaming down my face before my eyes were even open... I was physically overwhelmed with the sensation of pain covering so many areas. I could barely decipher what pain was what and how to accurately describe it to the various nurses and doctors who were trying to help alleviate the pain. The nurse was practically pouring doses of morphine in my IV but the lowest the pain ever got was an 8. I was using words I never use except when the pain possesses me like this. (Just the other day I described a frustrating day as a “spit show” and my dear husband asked if that was the Little Rascal’s version? Ha!)
Finally the surgeon showed up and I shrieked in between sobs “there’s glass in my stoma! Please take it out!” I could barely see my stoma because it was wrapped in a weird kind of Ostomy bag that I’ve never seen, it basically looked like a Tupperware stuck to my stomach. But I could see there was a red tube protruding from my stoma and black stitches holding it in place. It wasn’t glass but it felt just like a broken glass bottle was stuck in my stoma. The doctor kept asking me questions but the pain had overtaken my body and I couldn’t communicate any more than that.
Finally he left and came back then told me he was going to use a local anesthetic and numb the whole area. Next thing I knew I quivering and sobbing as he injected the medication straight into the stoma and all around it. The nurse held my hands and I squeezed so tight... Not too much longer everything sort of started to ease up. He stayed with me until I said the pain was down to a 5 and he told me it was a good sign that the local worked because it meant it was pain from tube and the sutures sewn into my stoma and flesh and not some kind of obstruction.
They graciously called my mom to come back in the recovery room and between her calming presence and the medication I fell asleep for a little bit longer. I woke up and the nurse started preparing me to leave! I started freaking out! What if the local wears off! I can’t deal with it! All I have is some piddly oral morphine! I need the anesthetic! She comforted me and said I should be okay and I could call the doctors on call if we needed anything... she even called our new hotel that was just a few minutes away and told them I was coming and they better have a room available. I don’t remember what she looked like or her name but surely she was actually an angel.
Next I had the arduous and painful task of getting dressed. Every bend or tug sent pain rippling through my body but I made it through. I stayed connected to my drain bag and they wheeled me out to my mom waiting in the rental car. I am SO thankful we had the forethought to spend a little more for one night to get a nearby hotel because the drive was miserable but I was settled in the cozy, clean hotel bed and after my mom closed the curtains and I took medicine we were both asleep in no time.
We woke up after a fitful nap and I needed more medicine so I quickly ate a banana and swigged it down. My mom picked up some Italian food and we ate in bed with hand towels as placemats and watched an old JLo movie on cable. Then we went back to sleep. (Sleep is truly gods gift to us humans, it’s the only real respite from life!)
This morning I woke up shaking from the pain but I could barely move without the tube moving and causing that pain to seemingly shred my stoma and my soul. Thankfully once the morphine was on board it was once again tolerable and my mom brought me breakfast from the buffet and I was even able to shower.
Now I’m just laying in a towel in the hotel bed dreading having to put any form of clothes on that might even brush against this protruding tube...
The real question I’m sure you’re wondering is... is it working? Well. I’m not entirely sure. The one thing I can tell is that instead of regular bursts of pee pouring out of my stoma it’s now just constantly dribbling out of the drain tube. So that does seem to be consistent with the concern that the pee pools in my conduit which makes it stretch and hurt. The conduit was never meant to hold any urine but simply be a byway to get from my kidneys into the bag. But there is still some urine occasionally sneaking out of my stoma next to the drain tube so the fact that my abdominal pain is still there doesn’t really mean anything since it seems that it could still be puddling or reacting to the urine itself which is another theory. Otherwise the pain and extreme sensitivity I have now with this tube sticking out is so distracting and it’s hard to say what pain is from the trauma of that whole process. Not to mention them sticking a scope all the way from my stoma to my ureters as well as inserting the tube up that far then sewing it in place. They said the inside of my conduit looks like a “cobblestone street” and just weird! They also took biopsies and hopefully those will give them information for their conference.
We’re moving to another hotel... our 6th move since being in Arizona, that’s slightly further but also cheaper... (who knew lodging in Arizona during spring was SO expensive?! Our options were crack den infested with cockroaches or luxury resort. It was hard to find something in between... thankfully a friend who’s sister works for Marriott gave us a hook up!) Then I will keep watching for signs of improvement or worsening of symptoms and then await their call after the conference on Monday. If all goes well, they don’t have further consults or tests and the tube isn’t too miserable we will (fingers crossed) be flying home on Tuesday!
I’m praying this drainage tube will give us some answers that we can take home with and chat about with my urology team at UW. As painful and difficult as this (hopefully) last portion of our climb has been I’m thankful to at least be getting more information and it makes it feel like this whole trip wasn’t a waste of energy trying to climb a mountain that is completely inhospitable.
I’ve debated whether I should post these pictures but I think we’ve been through enough all together and you know it makes me feel better to share the pain hahahahaha!
Thursday, March 7, 2019
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!!
Monday, March 4, 2019
In doing research for my last blog I started typing cactus into google and as overly helpful as it wants to be it gives suggestions of what I might be typing. While usually annoying sometimes it is helpful and other times it’s hilarious! This time it was led to a hilarious (to my easily entertained self) revelation.
I typed cactus and Cactus Doctor popped up! I clicked on the website because let’s be honest... the human doctors don’t have any ideas how to help me.
The services summary described pretty much what I had imagined “The Cactus Doctor is a cacti horticulture company specializing in all varieties of cacti. Keeping your cactus alive and healthy is his passion. Whether your cactus is sick, looks unhealthy, needs pruning, surgery or transplanting give The Cactus Doctor a call and we will schedule a house call or phone consultation. The Cactus Doctor wants all of your cacti to be healthy and beautiful.”
Perfect. I wonder if I called and said “oh why yes, hello. My name is Deni and well the cactus is my spirit plant. I find myself really sick and looking unhealthy sooo could I schedule a house call and see if you can fix me up? What’s that? You only work with literal cactus? Well. I guess I understand that a metaphorical cactus isn’t quite the same... yes, I have sought professional help... no not psychiatric help. Well fine. No need to be rude. Good day to you sir!”
Since I value the perception of my sanity I think I won’t go to the trouble of finding out how that conversation would go in real life.
Anyway! I was just contemplating what a difference a good doctor makes. I actually don’t mean an especially wise doctor or one with an impressive Ivy League education. I mean kind and empathetic. I don’t care if they graduated from the same school the cactus doctor did or Harvard, if they look at me in the eye and truly listen to me with their heart and brain they are golden in my book.
Today I had my nephrology appointment (after God once again moved giant mountains and moved my appointed up 3 whole weeks!) and he was a old fashioned good doctor! What a difference it made! He listened and heard me. He realized how much the pain and illness is stealing from me. He searched the depths of his brain for an idea because he saw the tears threatening to spill out of my eyes as I told him no one knew what to do to help me and I left my home and my family in search of answers only to be in exactly the same place I was when I got here.
He said I was rare, unique, uncommon, and even exceptional (obviously). He marveled at the multiple negative tests, complicated urine and pathology results, and my symptoms. He asked lots of questions and we joked back and forth.
He sighed then said “ordering a kidney biopsy for this is rather unconventional but I think you’re at the end of your rope and it would be worth while to see the results.”
He also paged the urologist to try to get some answers from them because they supposedly had their conference about me today and I haven’t heard a peep from them. Then he ordered my biopsy to be on Thursday and told me I should go home on Saturday.
After I got back to the hotel and snuggled in the luxurious bed I checked my Mayo app to find his notes from the visit and was pleasantly surprised! While it was full of unrecognizable medical jargon it also had phrases like “Ms. Jovanovich is a very nice 31 year old...” and “this unfortunate mother has been plagued by chronic pain since she was 14”. These simple little nuggets amongst the heavy facts he described brought tears to my eyes. He saw me as a person. As a nice yet “unfortunate” mom! I’m not just “a briefcase in the form of a body that is carrying around their baffling medical case” like I keep saying! I’m a mom, wife, daughter, sister, aunt, granddaughter, niece, cousin, friend.
(I also have to tell you that in my chart it also says “rodents in house- yes” it’s in reference to Titus’ pet guinea pigs but it definitely sounds like we have a mouse infestation but instead of treating the problem we’ve just embraced them, dressed them in tiny shirts and named them Jaq and Gus Gus...)
My quality of life is what’s at stake here! I acknowledge I can’t die from this like a lot of their patients could but in some ways the absence of hope of healing is just another kind of death.
So, although I don’t have a single new answer or treatment plan, today I got valued by a doctor and it meant so much to me! He saw that investing his time and resources in me was worthwhile!
My kidney biopsy is on Thursday. I don’t really know what to expect for the actual procedure except they will numb the skin then stick a big needle into my back and sneak a chuck of my kidney out. Then they will run it through the gamete of tests! They will specifically be looking for the eosinophil cells that are always in whatever urinary system I have and they will check on the kidneys general welfare.
I feel slightly encouraged and I’m excited to get the results! Either way it will answer the question of whether my issues start at the kidneys or somewhere after.
I’m hoping I can take the exhaustive elimination process I’ve done down here back up to my doctor and they can hatch some kind of next step... but first I have to get through this week and get home.
Today we were driving to the appointment and I saw a row of cacti with support beams holding them up. I’m assuming they were newly planted and these beams stay in place until their tiny roots take hold of their new ground but it was the exact picture of me. Me, the cactus, and you ,my beloved family and friends, the beams holding me up. I know I’ve said it a million times but I need you to understand how much I mean this... I COULD NOT do this without you guys. I’m so greatly blessed to have you all out under the sun, holding up my weight (which, thanks to prednisone, is almost 15lbs more than it was 2 months ago...) and just standing with me. What a gift you dear beams are to this cactus.