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Pre-surgery hunger hack

I’ve got #Surgery in the morning to have my chemo #PowerPort removed and replaced. They said no food or drinks past midnight. So at 11:45pm I had myself a protein shake (lactose free) and 2 mini powdered donuts. Found myself a nice little loophole!

Lately at night intense hunger pains and #lowbloodsugar wake me up in the middle of the night in an intense cold sweat. I think since I lost 45lbs recently (I’m guessing due to the #Cancer ) I need to get my #insulin adjusted. I’ve lowered it a little bit and that’s helping some.

Here’s to hoping this port surgery goes better than the last and isn’t 24/7 pain like the current one! Also that the new one actually works!!


Re-ocurring blood infections (MSSA) in chest port, hickman line and PICC line??? (help)

I have multiple illnesses that require me to have a port to get IV infusions 3 times a week. My first port I got was over a year ago but only lasted a few months until it got a pocket infection and was draining puss and was red. We took it out and did some IV antibiotics until I was cleared to get it replaced. We have done this about 4-5 times due to every line getting infected (we've tried power port, Hickman and PICC). There is something in my blood causing these to happen but cannot figure it out. I need to get a new line ASAP. PLEASE HELP! #PowerPort #chestport #chemoport

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Nervous 😟

Just venting my anxiety. I’ve been in the hospital for almost a week. I was forced to come in to the ER when I woke with a 102 fever and palpitations much more severe than my usual POTS flutters. I was diagnosed with #Sepsis and #SIRS - scary. It took a while for the cultures to come back, but they finally narrowed the infection down to my #Port . Tomorrow I have to go down and have the port removed and have a #PiccLine placed so I can continue getting my #TPN . I’m not usually a nervous person, but I am so anxious about the removal. Could be some #PTSD related to IR and my j-tube days or just fear of the unknown (pain, sedation, etc.). Local anesthesia is not always effective for me so that’s one thing on my mind, plus I don’t like not having all the details ahead of time. 😟
I’m sure I’ll be fine once it’s said and done but this on top of not feeling well has me 🤢
#Disability #Hospital #AutonomicDysfunction #Gastroparesis #TotalParenteralNutrition #Malabsorption #FanconiSyndrome #MetabolicCondition #MultipleSclerosis #Hypoglycemia #AutoimmuneImmunodeficiency #SmallFiberNeuropathy #OrthostaticHypotension #Anxiety #interventionalradiology #AutonomicNeuropathy #PowerPort #Portacath

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Has anyone had a pinching pain while port is accessed? Is it normal? #Portacath #PowerPort #LivingWithPOTS #homeinfusions

I had a port placed on July 1st, we let it heal for a week before accessing it for the first time in which there was some difficulty because it was still healing but we got it accessed. However the last few times my home health nurse has come to access it we will get it accessed and then I run my infusion and all is good until I start getting a pinching feeling/pain where the Huber needle is inserted. Is this normal?

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Struggling tonight

Having one of “those” nights... My sister, niece and I are taking a little mini vacation tomorrow - Sunday (No worries, we aren’t going anywhere around crowds or to any “hotbed” states” but we still have our masks & loads of sanitizer packed) so I have had an abnormally extra busy past few days trying to prepare. My body is so sore and hates me right now. I was hoping for a good night’s rest, but due to being so uncomfortable I took a dose of pain meds which makes me insanely itchy despite pre-medicating with Benadryl, Zyrtec, Pepcid, Tylenol, & Phenergan. I was able to fall asleep for about 3 hours but woke myself up scratching, now I can’t sleep. I’m also anxious about the trip for several reasons but mainly right now because we typically fly when we travel because it’s faster and easier on me all around. However, this trip we are driving and it’s about a 5 hour trip without stopping. I am so scared it is going to put my body in turmoil to be in the van that long. We are planning to make frequent stops, I have extra pillows, blankets, hot/cold packs, compression socks, literally everything I can think of to keep comfortable but I can’t help but be nervous. It’s been years since I have traveled more than 1 to 2 hours anywhere. I just want to be able to enjoy myself once we get there.
#AutonomicNeuropathy #AutonomicDysfunction #Gastroparesis #MultipleSclerosis #TPN #Portacath #PowerPort #ivfluids #SmallFiberNeuropathy #AutoimmuneAutonomicNeuropathy #OrthostaticHypotension #PosturalOrthostaticTachycardiaSyndrome #Malabsorption


If you have a #Portacath, do you access it yourself? #Ports #PowerPort #Gastroparesis #AutonomicDysfunction #PosturalOrthostaticTachycardiaSyndrome

I’ve had a j-tube for 4+ years and have always taken care of everything myself. Today I had a port placed and I no longer have the j-tube. The hospital is setting me up with home health, case management, nurse visits, etc. to basically do everything (access the port, run fluids/tpn, and do anything else needed)... I expect this in the beginning, and I know I’ll need nurse visits for lab draws and such, but does anyone have a port and access it themselves and run their own fluids/tpn? I’m a nurse (currently disabled) so I’d be fairly comfortable doing everything myself. TIA

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I need some Tricks to Heal wound at my port sight? Vitamin C? Clean 3x a day?

I had remicade on Tues. and felt like my port sight was sore after the infusion. I went back Thur to have them change my dressing and when RN took the needle out it drained clear pink yellowish liquid. I was admitted right away and on IV antibiotics. The test came back negative for bacteria infection... thank god. But I don’t want to lose this port. I’m praying the little wound heals in the next week or the doc is going to take it out.
Please say a prayer for me.... I don’t want to have to go back to 3 to 4 nurses trying to find a vein every infusion. #UlcerativeColitis #PowerPort