Renal Tubular Acidosis

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Renal Tubular Acidosis
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    As if the issues with my RTA & IST isn’t enough I’ve been in hospital now for 5 days with Myopericarditis! 🤦🏼‍♀️🤦🏼‍♀️ Scared to ask what’s next.....! Have been going around in circles! Pretty much over this, would like to know if anyone else has had so much issues added on the whole time with the RTA & ITS.... & if so, how have you coped?

    Community Voices

    Anyone else been so frustrated with their Drs they just want to shout, cry, scream etc all at the same time? And maybe even shake a Dr?

    I’ve only been diagnosed with Renal Tubular Acidosis in the last 3 months but the Nephrologists here are giving me the absolute runaround. My cardiology team actually made the diagnosis after I kept losing Potassium and they investigated and after a bunch of tests made the diagnosis and referred me to the nephrologist who then literally saw me once, added a bunch of tests, changed one of my tablets and said “okay, I’ll see you in our out patients department in two weeks”. I was readmitted to hospital again since (several times actually) and had to be admitted under my cardiology team again because the nephrologist wouldn’t see me over the weekend and thus wouldn’t do any blood tests or adjust any medications. On the Monday morning, she kept avoiding any calls by either nursing staff or the cardiology team regarding me as well. The head Cardiologist had to actually track the Nephrologist down and talk to her face to face for her to come and see me, just to have her give me the same thing as previously about just ‘keep taking your medications and I’ll see you in OP in 2 weeks’’. After not getting an appointment letter, I started phoning just to be told no referral had been made for an appointment. Only after getting my GP involved and calling daily did I finally get a call last Monday to say I had an appointment for Thursday 5 Nov but wouldn’t you know it, got called this morning to say it’s been moved to the 19th. So after 2 months I’m still waiting for answers & getting absolutely nowhere! It actually feels like she’s avoiding me because she has no idea how to treat it! Anyone else have similar problems before? The real issue I actually have with all of this is that I keep losing my Potassium and the medications I’m on don’t seem to be keeping up, so my heart rate keeps going haywire, as high as 160 for hours on end. And obviously I feel absolutely crappy when that happens so I can’t work when it does & it’s happened several times at work already- unfortunately I don’t work in a place where I can just go home & it doesn’t matter, as I’m an RN myself..... - so I’ve been told I might have to stop working till this has been sorted, how am I supposed to get anywhere with a Dr that might as well not exhist? (I unfortunately live in a relatively small town with the nearest other hospital 4 hrs away)
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    Community Voices

    Finding a Doctor Who Actually Helped Treat My Chronic Pain

    I’m hunched over in a hospital bed shivering, vomiting in a blue puke bag and crying — the kind of tears that make your vision blurry. While I wish I could say this was my first time experiencing these symptoms brought on by extreme pain, I can’t. I have a chronic kidney illness where my body overproduces kidney stones leaving me with millimeters and centimeters of rock hard deposits of minerals and salts dancing throughout my kidney, my ureter, my bladder and my urethra. I have a chronic kidney disease illness that leaves ER doctors saying, “I don’t know what that is — can you spell it for me one more time?” Meanwhile, urologists are speechless because they like to say their only job is to do surgery and these stones that haunt my kidney and my emotional well being often don’t warrant anesthesia, an operating room and an opportunity to scrub in. I’m not writing this for myself today. No, I am far too exhausted and angry at my body and the healthcare system that isn’t made for chronic illness to fully articulate everything I want to say. Instead, I am writing this for my chronic kidney illness that deserves a fighting chance and respect from medical professionals who will look me and this condition in the eye, unafraid to tackle what exactly it is I need. The truth of the matter is that none of these doctors I have ever stumbled across, even “the best of the best,” know much about what I need. Here is the process of care and fair warning, it may exhaust you the way it exhausts my body, my mind and my spirit: When I’m in pain, I let the urology department know. They say, every single time, they don’t treat pain. They tell me to go to the ER. When I’m in the ER and all signs point to kidney stones and my issues being urological, the ER team tells me I need to follow up with the urologist. When I tell the ER I was told by the urology team to go to the ER, they tell me that is incorrect and often lecture me as if I have not followed directions or I have misstepped. Sometimes I even show via online portals where the urologists write in all caps “GO TO THE ER — WE CAN’T HELP YOU.” Repeat this scenario over and over again. When you go into the ER for pain management because the department where your true health issue lies won’t treat you, you become what they call a “frequent flier” and in the eyes of many, but not all physicians, a “drug seeker.” Yes, when I come to the ER after being told to by my urologist, I am seeking pain relief due to the foreign objects doing acrobats throughout my flank. Yes, when I come to the ER after being told to by my urology team, I am seeking relief for the renal colic and ureteral spasms bringing me to my knees. With this chronic illness, going to the ER is like going to Las Vegas — you may hit the jackpot with the provider you’re assigned or you may go home with nothing (not even your dignity intact). I know this because I have been to the ER at least 15 times in the last two years. The commonality I’ve experienced with the bulk of my ER visits amounts to gaslighting and being told I’m “crazy.” Not only am I sick of it, but my body has had enough. Telling me I’m crazy doesn’t stop the kidney spasm or me from peeing out stones. In the last week and a half, I have been to the hospital not once but three times. On a Wednesday morning, I noticed blood in my urine and heavy fragments (also known as kidney stone gravel) coming out every single time I peed. Within hours of this happening, I was vomiting and lying on the floor of my bathroom thinking I was going to die. The pain hit me hard. After making it to the hospital, I hit the ER jackpot. My labs were done quickly, an IV was immediately started, anti-nausea medicine started to flow, and the doctor had the nurse immediately administered an anti-inflammatory pain medication and an analgesic while they waited for me to get an ultrasound. The ultrasound came back. Stones. Everywhere. The test results from my blood and urine came back — infection and all signs pointing pain from the stones. I was given another round of pain meds and then sent home with Ibuprofen (yes, Ibuprofen) and anti-nausea medicine. Now, I didn’t go to medical school, but if a patient is showing stones and it’s notoriously known that stones can be described as the equivalent to giving child birth, why is nothing but Ibuprofen being prescribed? It’s almost like the goal was for me to end up back in the ER. And guess what… I did. Saturday rolled around and I was vomiting all over my apartment, hunched to the side (it’s always my left flank giving me hell), screaming that I felt like I was experiencing little earthquakes inside of my body while hot glass cutting the inside of me came out with every drop of pee I released. I felt like someone was stabbing me over and over again with a dull yet determined knife. Quickly I was triaged and brought back to a bed. I asked for a cup to give a urine sample because I know how this goes and I wanted to go ahead and get it over with. I peed in probably my 600th cup ever, handed over my arm where they stuck me six times before they found a vein to start an IV line to take blood from, and shortly after I was poked and prodded the doctor came in to say: “So, why aren’t you seeing your urologist right now?” Doctor’s love to ask this question. And then I love to respond back with what I already shared with you earlier, “Urology told me to come here, they said it’s not their problem to treat my pain.” Every time I say this, doctors always make the same face. I follow up with, “So if I’m not supposed to come here for pain management and they aren’t responsible for pain management, who is?” There is no answer to this. Over the last four years of ER visits, kidney stone surgeries (I’ve had multiple) and urology appointments, not a single physician of any kind has been able to take responsibility for treating the pain caused by my stones. This doctor nodded at my logic, ordered me a CT scan to see if there was any obstruction that maybe an ultrasound missed, and he put in a cocktail of an anti-inflammatory pain medication, anti-nausea medicine and an analgesic. CT was backed up, so after a few doses of pain relief and a few narcotic pain-relief tablets, I was finally taken back. Breath in. Hold your breath. Breath out. I did this over and over again knowing the CT was boldly exploring the kidney causing me such out-of-body pain. My results came back. A two mm stone deep in my left kidney. The doctor at this point left his shift. I had a new doctor assigned; she showed me my stone and asked me just how badly the pain was and where it was. “Bad. So, so bad — sometimes I don’t think I’ll live through this.” She nodded and said “You will.” She wrote me a prescription for a pain reliever that would last three days. She wrote me another prescription that is only effective for helping men pass kidney stones. She told me to follow up with my urologist and sent me on my merry way. I made the pain reliever last six days instead of three, but on Thursday morning of last week I was vomiting, writhing in pain from my left side and feeling like I could faint at any time from the pain. The spasms were out of control, radiating around my left flank and through my ureter and urethra. I went straight to the ER because we all know what my urologist would have told me to do. Quickly, I was triaged and admitted to the ER where a handsome doctor appeared to say, “I’m going to be your ER doc for today but not only am I working in the ER – I am a urology PA.” I quickly told him my history. I told him I am experiencing spasms in my kidney and my ureter. He asked me what the doctor’s usually do to treat me for pain. When I told him an anti-inflammatory pain medication and anti-nausea medicine he said, “Well I’m from urology and I don’t necessary think your situation warrants this type of pain medicine — so let me get you something for the pain and look at your labs. Have you ever heard of Ibuprofen?” I peed in a cup. My friend Brianna would go on to tell me it looked like “root beer” from the dark, dark coloring. The cup was filled with gravel sediment. The urology PA didn’t want to give me IV fluids despite the color of my urine and the sediments in it. He didn’t want to give me an anti-inflammatory pain medication. He didn’t want to give me the pain reliever. But he did want to tell me, “I think your disease (Renal Tubular Acidosis) is getting worse.” What could he do for that? “There’s nothing I can do for that, I’d just follow up with your nephrologist.” I demanded IV fluids based on my urine sample being dark and feeling dehydrated, while I sobbed for pain medicine, for anything to help. Getting frustrated, I said: “What exactly can you do for me? Your department tells me to come to the ER when I experience these attacks. You’re not treating me for this attack. If you weren’t here from urology and I was assigned a different ER doctor today, I probably would be getting some pain relief. So what am I supposed to do?” He had no answer except “urology is surgical.” If you consult any medical textbook, it says urology is the study of medicine and physiology concerned with the function and disorders of the urinary systems. Urology can’t just be scalpels. So, reader, if you’ve made it this far, let’s recap: When I am in pain and I consult urology, they tell me to go to the ER When I am in pain and I go to the ER, they treat me for pain but tell me to follow up with urology When I follow up with urology regarding my stones, they send me to see a different speciality (a nephrologist) When I see my nephrologist, they tell me it’s not their job to treat my pain and that I should go to my urologist or the ER The baton is passed from department to department and I am shuffled around like a game board piece except I do not get to roll the dice, pass go and collect $200. Shortly after realizing the urology PA was not going to listen to me or help me and the IV ran dry, a nurse came in my room. Nurse Karen shut the door, sat down on the hospital bed and said, “Sweetheart, I’ve been a nurse for over 12 years and what I can tell you right now is that the doctor is not going to help you or listen to you. He isn’t even taking your labs seriously. But it’s OK, I have a plan for you.” I started crying. She grabbed my arm with the IV, pulled it out and started rubbing off the tape residue. She pulled out a pair of scissors and cut off my hospital armband. “You, my girl, are going to get dressed, you’re going to take your paperwork from your previous ER visit here last Saturday, and you’re going to go to another hospital right away. Your labs and urine sample are not OK — you need to be treated and a doctor needs to hear you. Do you understand what I’m saying?” I was sobbing and probably making no sense, and she said it again: “You are to get up out of this bed and go immediately to another ER, mention nothing about what happened today, and I promise you — you will get the help you need.” She hugged me and said, “I see this all the time. You aren’t the first and you’re not the last. But go to another hospital. You are not well and you deserve care.” So I followed Nurse Karen’s directions and ended up in another ER. They read my previous discharge paperwork at the front desk, triaged me immediately and after waiting two hours — I was given a bed and a doctor came in to do a full work up. Urine. Blood. A review of my ultrasound and my CT. When the doctor came to my bedside, I worried he wouldn’t listen or give me the time to explain the pain I’m having, where it was located and a brief history of my kidney stones. Instead, he listened to my history, he asked more questions than any other ER or urologist has asked in all my recent visits combined and he actively asked how I thought I needed to be treated to get my pain level down. Like magic — this doctor put a plan in place. Since I kept telling the doctors I was experiencing spasms in my kidney, he decided to treat me with a muscle relaxer to see if the kidney and urethral muscles would stop spasming. How come no one thought to try that despite my running soundtrack about spasms before? Quickly, they gave me a muscle relaxer, anti-inflammatory pain medication, pain reliever, an antibiotic for my kidney infection and IV fluids and within an hour — the pain that was fluctuating between an eight to a 10 was down to a six. The spasms stopped. There are no words to describe the relief of having the painful spasms stop. There are no words for having a doctor take five minutes out of his day to listen and have a conversation with you vs. a doctor coming in to tell you what’s wrong with you before you get a single word out, and it’s clear they haven’t even read your chart. If it wasn’t for Nurse Karen, I wouldn’t have gone to get the help I so clearly needed and I very much would not be typing this right now pain-free. I am grateful for her and the directions she gave me, but the magnitude of gratitude I have for the ER doctor who took the time to listen to me knows no bounds. Being a patient with a chronic illness is not something that is going to change for me. Being a patient who has chronic pain is not something that is ever going to truly go away. However, being a patient with a chronic illness and chronic pain is part of being human, and I am desperate for healthcare providers to treat me like a human being. I am 32 and I don’t want to be told my chronic illness is getting worse without a reason why or a plan to help me get better. I am a woman who doesn’t want to spend hours in the ER, especially during a pandemic like COVID-19. I am a person who wants a standard of healthcare that isn’t based on shaming, belittling and assumptions. I have learned how to bear this pain during my flare ups because without doing that, I worry I wouldn’t make it through my attacks or I would end up in emergency rooms screaming like a mad woman only to be treated worse for my condition. I have learned how to manage myself with this pain to the best of my ability. So I ask seriously for ER providers (and urologists) to learn how to manage chronic pain and chronic illness for the sake of the healthcare system and their every day 1:1 patient experiences. I ask seriously for these providers to learn compassion, active listening and out-of-the-box thinking even when they are overworked and tired. I ask seriously for these providers to see me as the woman I am and the pain I’m in and treat me accordingly, not based on an assumption or what they think will act as a band-aid. I don’t need a band-aid, I need a medical hero to take me seriously with a true plan of attack — I need them to take me as seriously as I take my pain and my chronic illness. I need a medical provider to see me as a whole in search of relief — not a temporary fix. Ultimately though, it comes down to this: I need a provider who is as strong as me.

    Community Voices

    Mom, wife, friend & cancer survivor trying to get through life one moment at a time:)
    I have renal tubular acidosis and medullary sponge kidney in the only kidney that remains due to renal cell cancer and it only functions at 28%. I am constantly in pain and exhausted. When they removed my cancerous kidney my adrenal gland had to go along with it. I honestly didn't know until then just how much that adrenal gland helps you out. So although I look fine on the outside I am one sick woman on the inside and people just don't get it. Even my own family will tell me to get up and just get moving and I will feel better. Oh they are sooo wrong. It only makes me feel 10 times. worse. Hang in there you guys, it has got to get better for us!! And if it doesn’t, we have each other❤️😬

    Lisa Prins

    Using Humor to Cope With Having All My Teeth Removed

    I wanted to share some of my thoughts and humor as I adjust to life with full dentures. I’m at almost four weeks post extraction now, and it’s been an interesting journey! I wanted to have all of my teeth extracted, and I’ve shared two articles about why with The Mighty. I’ve been in a dental nightmare for over a year, losing teeth every month and getting horrible infections, due to my health issues and medications like prednisone. My teeth rapidly started deteriorating about a year and a half ago. So. What is it like to get all of your teeth extracted when you’re in your 30s? Well. Wow. So much to say, it’s hard to know where to start. But I’ll start here… if I could go back, I would demand being fully sedated for the procedure and would not recommend anyone do it while awake, even with nitrous isn’t good enough. I thought I was a veteran, a champion of tooth extractions, having already lost 12 teeth in the last year. I was wrong. I had complications. It took over three hours. It was traumatic. I can’t lie. It was traumatic and far more painful than I anticipated. I have issues metabolizing dental freezing too quickly, so I felt most of the procedure. I had nitrous but it didn’t seem to do much this time. In saying that, I still don’t regret having them all extracted. I have another infection in my mouth right now and it is responding to antibiotics much better, and much quicker, than when I had teeth. In the past, I had a blood infection/sepsis from my teeth. So, this is huge for me, that my body is now able to fight these oral infections better and quicker. Some of the things I’ve faced will be unique, because I had a surgery date, but wound up needing them removed five weeks early. So I was not able to get what they call “immediate dentures.” They usually like to do immediate dentures. They work like a bandaid. I was warned I might have to wait up to six months to wear my dentures, since I didn’t get immediate ones. But, since I only had my bottom and top front teeth left to be extracted (12 in total), I was able to start wearing my dentures only 10 days after my extraction. That is very quick, but it’s because I didn’t have any back teeth to heal. Front teeth heal faster. However, I’ve had complications. Tons of bone fragments and an infection, so I’m only to wear the dentures as needed and only if they aren’t hurting me. Mine fit great and I love how they look. I’m incredibly happy with them. I’ve also faced some preconceived judgments from some in the medical community. Assuming I am an illegal drug user because I’ve lost my teeth at my age. That has not been enjoyable, but they all realize once they meet me that they were wrong. I still really dislike the disdain. What if I were an illegal drug user? I would still deserve respect. But… I’ll leave that thought to end here. Now. Here’s the fun stuff! My random thoughts! Will I ever get used to brushing my teeth while holding them in my hand??!! It feels so weird!!! Looks so strange! Hehe. I’m in public with no teeth. My mouth is naked. Ahhhhh I’m in public with no teeth! I hope no one notices! (It’s gone well. With my infection and the 10 days without dentures, I’ve needed to go out without teeth and it all worked out just fine.) Mmmmm watermelon and ice cream and icy slushy drinks, my gums are asking you to marry them. Please. Commit to me! You feel divine! Darn you salad! Why are you impossible to eat?! Clickety clack! Oooops!!! There goes my bottom teeth!!! Wow. Chicken is much easier to eat without teeth than I expected! And chocolate is hard to eat without teeth. Oh wait… It melts. Phew! We’re all good! I can still eat chocolate, everyone. No need to panic! I sound like Elmer Fudd. That’s so cool! I think my teeth are lonely in their container of water. Do they miss my mouth? They’ve been alone for days! My poor teeth. (Nothing like giving human feelings to dentures!) Hey. This could be beneficial! I look 20 years older without my teeth and 10 years younger with them! I can try for some senior discounts! And loiter around some 20-year-olds and pretend I’m with them! So… it’s been a funny, painful, sad and interesting journey so far. The pain was extreme, but I’m recovering. The emotional impact hits me at times, really hard. I made the decision to have my teeth removed; however, my teeth made it so it was the only rational decision. So, I do have moments of grief, especially when I have pain, or see how I look without them, or have difficulty eating. It’s not been easy. But it has been completely worth it! We want to hear your story. Become a Mighty contributor here.

    Lisa Prins

    Renal Tubular Acidosis: What It's Like to Be in Chronic Pain

    Pain. Chronic pain. Unrelenting, all-encompassing, world-altering agony. What is pain? Pain is my constant companion. It clings to my body and my mind, at one with every cell in my body. It’s a heavy layer of grit that claws away at my clarity. Sometimes it’s a slow, seeping fog. Layer upon layer. A hazy, unrelenting blur upon my thoughts and reflexes. At other times it is a sharp knife that slashes into my soul, causing my thoughts and my mind to bleed. There’s no way to escape the cognitive effects of pain. I’m in the midst of excruciating kidney pain right now and I’m writing, despite how difficult it is, because I want to fully capture this. To truly convey how it kidnaps your thoughts and your life, when in the midst of it. It is taking me hours to write a paragraph that would normally take me a minute or two. But I want this to be real. So I’m doing it. It will take as long as it takes. The pain puts my body, my adrenaline, my heart rate and my blood pressure into hyperdrive. My thoughts are a mile a minute, racing along with the beat of my rapid heart, yet my thoughts are also smothered, dampened by globs of heavy, molten tar. Acute yet dulled by the persistent, heavy pulsing of agony. Rapid yet distorted. Deep yet distracted. Disoriented. Pain is not a choice. Pain like this can’t be controlled. There is no mind over matter when pain is at this level. You have to accept the pain and lower yourself into it. It can’t be fought. It won’t be ignored. If it could be, my mind would do that. The best my mind can do is just continue to survive. To cope. To somehow make it through the onslaught. The battle. To keep trudging along. To not give in to the tiny voice that whispers through sobs of agony and fear, that it wants to give up. That voice that feels like it simply cannot do this any longer. I am powerful. Not because I have pain. Not because I can power through pain. I am powerful because I can remain myself, at my core. I am powerful because I can retain my will to live, when the heightened pain and deadened brain could overtake me. Break me. I am powerful because I am still here, living my life to the fullest extent I can. Finding joy. Feeling love. Spreading hope. Feeding friendships. On my worst days I do very little, but it’s still doing all I can. That is what matters. That is strength. I am strong because although my mind may sometimes feel it can’t go on, I always manage to somehow make it through. We want to hear your story. Become a Mighty contributor here.