Renal Tubular Acidosis

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    #ChronicPain #Migraines #pots #EDS #TemporomandibularJointDisorders #RenalTubularAcidosis

    My heart rate has been all over the place again today and my hip and chest have been letting me know in no uncertain terms they’re unhappy with me and are screaming out in pain! But just for today I thought Bugger it! I’ll go to the beach with my sister and niece. I might not like myself tonight when I try to get to sleep but on such a beautiful day it was worth it! Thought I’d post a pic so others could enjoy it too! Stay strong everyone! 🥰😘

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    Pain!! #ChronicPain #ChronicPericarditis #RTA #POTS #InappropriateSinusTachycardia #RenalTubularAcidosis #possibleeds….#Migraines #tmjd

    Had a CT guided cortisone injection in my hip this morning to help with pain to see if I can delay having hip surgery as my Heart and electrolyte issues due to my RTA is making my Specialists nervous to put me under (Hesitant using anaesthesia as well as worrying about my recovery post and possible complications during the whole thing) I know they said it might take a while to help if it helps at all but I’m in absolute agony! Anyone had any similar issues before? Any advice would be appreciated! (None of the pain relief I have available has worked - Targin & Tapentadol, obviously taken hours apart - and I can’t have any anti inflammatory medications for a couple of days 🥺 due to my bleeding risks and kidney issues)

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    #ChronicPain #InappropriateSinusTachycardia #RenalTubularAcidosis #pericarditis #coronaryarterymusclebridge #Migraine

    On top of my already long list of issues I’ve been struggling with pericarditis for almost 3 weeks now. They initially only had me on conservative management but that didn’t seem to work, so I spent 9 days in hospital for more tests & medication tritration as my heart rate was acting up as well ( it’s apparently still going to take months to get back to ‘normal’). I Was also restarted on my topamax for my migraines as nothing else was working and it got to the point where I couldn’t get out of bed or keep any food down for 3 whole days - not helping in the long run! Cardiologist also discovered what they call a muscle bridge - essentially where a part of one of my main coronary arteries goes through the muscle instead of over it - & now I’m on medication to stop that from spasming & causing more pain along with everything else. I’m too tired and too scared to ask “what next” or “what else”..... Please tell me I’m not the only one feeling that way at the moment!? And that it’s not just because I can’t even sleep lying down currently as it increases my pain so I’m severely sleep deprived to boot! 🥺🥺 (ps this is my sisters cat Molly, hasn’t left me a minute since I’ve returned home from hospital & has helped me in so many ways🙂)

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    #RenalTubularAcidosis #InappropriateSinusTachycardia #pericarditis

    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?

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    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)
    #RenalTubularAcidosis

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    Has anyone with ME and/or POTS been diagnosed with renal tubular acidosis?

    Can't help wondering whether my tubular acidosis could be linked to my existing health problems. #MyalgicEncephalomyelitis #PosturalOrthostaticTachycardiaSyndrome

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    Some people just don't get it at ALL #ExhaustedAlways #PhoneAppsForPain #Renalcellcancer #MedullarySpongeKidney #RenalTubularAcidosis #ChronicPain

    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❤️😬