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Just another day with Chronic Illness

Hey ya’ll,
Just wanted to introduce myself to the community - my name is Lexis, 25, living with multiple Chronic Illnesses. Just looking to relate to others. Have yet to meet people with the number of conditions I suffer with. That’s also kind’of hard when you spend most of your life in the hospital and home in bed due to some symptom from some illness. Not to forget, COVID, too. Being immunocompromised seriously makes life so much more difficult. Just going somewhere outside of your safe bubble (home) is a danger and puts you at risk. If I’m not home I’m usually at a doctor’s appointment. I’m sure many of you can relate. I get the simple cold or flu and 95% of the time that’s another admission in the books.

Currently dependent on a feeding tube for nutrition. Current heart monitor connected for a month to monitor my heart conditions. And a double lumen central line placed from time to time for medications & antibiotics. Extra measures used to simply use the bathroom (bowel movements) due to my body being unable on its own (lack of motility).

Anyway, this is not a pity post, I promise. Just looking for people that can relate to atleast some of my situations. I currently live alone..starting a new job soon and school. I’m very excited. Introduction pretty much over with.

Hope everyone has a fabulous day no matter your challenges ♥️

#ChronicIllness #Dysautonomia #PosturalOrthostaticTachycardiaSyndrome #ChronicRenalInsufficiency #Gastroparesis #PsuedoBartterSyndrome #GastroesophagealRefluxDisease #LazyBowelSyndrome #IntestionalMalabsorption #ProlongedQTcSyndrome #SupraventricularTachycardia #microcyticanemia #Pancytopenia #Immunocompromised #Osteopenia #Asthma #SevereAllergies #SeizureDisorder #IdiopathicHypoglycemia

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How is the Kate’s Farm formula??

Recently I was discharged from the hospital (Children’s) and they called my enteral nutrition company, having formula and supplies sent to my home. Well, back tracking a bit, in the hospital I was on Pediasure Enteral 1.0 formula. Had a super hard time tolerating it, even at a medicine cup an hour rate. However since seeing my Gastroenterologist & Dietitan yesterday.. we found I’m not only not tolerating the formula but I’m also rapidy losing weight on it. So I’m now being switched! 🙏 My dietitan wants me on Kate Farm’s (adult) Peptide 1.5. This way I’m getting more of my energy needs in less volume. Also on the plus, it’s organic and plant-based😀

So, I’ve heard really great things about the Kate Farm’s company..wanted to know if the hype is real?

#Gastroparesis #IntestinalMalabsorption #LazyBowelSyndrome #GastroesophagealRefluxDisease #Jtube #FeedingTube #tubefeeds #katefarms #enteralnutrition

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My heart landed me in the PICU..

Hi everyone,
New to the group. However, very use to SVT and Chronic Illnesses in general. I was just discharged from the hospital last week, just in time for NYE. Christmas unfortunately was spent in the PICU, all due to frequent episodes of SVT with combined PVCs. Although this has gone on untreated for a while, I was recently finally diagnosed. In my case it had to get worse before I could get better. Currently on my second home heart monitor. After 4 weeks, once these results are read, my Cardiologist is coming up with a treatment plan that best fits my needs. So I guess my question for you all is.. what type of treatments are you doing right now? If any. We’ve spoken about adding a beta blocker to my medications and possible heart surgery. I just don’t know what to do.

I’m just so tired of having these circuits of out of control, super tachy ectopic beats (for no reason).

#SupraventricularTachycardia #ProlongedQTc #DiulatedLeftVentricle #prematureventricularcontractions #LazyBowelSyndrome #Gastroparesis #Dysautonomia #PosturalOrthostaticTachycardiaSyndrome #Gastroparesis #IntestionalMalabsorption #SeizureDisorder #MicrocyticAnemia #Pancytopenia #ChronicKidneyInsufficiency #Hypoglycemia #Osteopenia #Amenorrhea #Asthma #SevereAllergies #FeedingTube