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    Port Tips

    Hi! I’m going to be getting a port soon because I receive IVIG infusions and my veins are all shot. I’m also going to be starting Benadryl infusions. My doctors have recommended it for a while, but with my crappy veins, I decided to wait.

    I’m mainly looking for some inside tips/what you may have wish you knew beforehand

    Like should I get lower cut shirts? Should I get tubbie clips so my tubbing doesn’t get caught? Should I get a specific type of port? Is there anything that you wished you could have changed about your first port placement?

    Anything would help, thank you! 💖

    #EhlersDanlosSyndrome #PosturalOrthostaticTachycardiaSyndrome #Portacath #Ports #MastCellActivationDisorder #Disabled

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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


    Neutra-Phos or PHOS-NaK

    Looking for anyone who has to take neutra-phos or PHOS-NaK supplements and has tricks to getting it down. It’s disgusting. It’s “fruit” flavored so I’ve tried mixing it in with everything I can think of from juices to yogurt and applesauce, even protein drinks. The flavor is so overpowering I can’t get it down without gagging. I’m supposed to be taking it 4 times per day. I’ve already tried pills (I didn’t absorb them) and I’m also on TPN with an extremely high amount of phosphorus (my body just wastes it) so it’s pretty much my only option. Any advice is welcome! SN: I’m allergic to citrus/pineapple, so OJ is out. #MultipleSclerosis #AutonomicDysfunction #Malabsorption #TPN #Portacath #AutonomicNeuropathy #AutoimmuneDisease #Gastroparesis #SmallFiberNeuropathy #PosturalOrthostaticTachycardiaSyndrome #FanconiSyndrome #OrthostaticHypotension #Hypoglycemia #hypophosphatemia



    I was recently started on #tegretol to replace #Topamax because it caused me to have metabolic acidosis. I have noticed in the last few days that I have been super forgetful, saying things that I’ve already said, and the #BrainFog has been real. Has anyone else had this issue with tegretol? If so does it get better over time?
    #MultipleSclerosis #AutonomicDysfunction #TrigeminalNeuralgia #SmallFiberNeuropathy #PosturalOrthostaticTachycardiaSyndrome #Gastroparesis #Epilepsy #Portacath #TPN


    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


    I'm terrified, but thankful #Portacath

    Yesterday I had a Port A Cath placed so that I can continue to receive my treatment, but having this huge infection risk is terrifying for me. I'm really thankful that the option was available to me, but my head is spinning with all of my worries... I feel like I'm drowning. #PosturalOrthostaticTachycardiaSyndrome #EhlersDanlosSyndrome#Gastroparesis

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    Any tips for #Shower with an accessed #Portacath ??

    I have just recently (Friday, today is Tuesday) gotten a port for #PosturalOrthostaticTachycardiaSyndrome and #EhlersDanlosSyndrome and it has to be accessed 24/7. It just healed enough to be accessed for the first time today and I haven’t been able to shower while it was healing, any tips? Right now I have to use 6 tegaderm and gauze but I’m wondering if there’s an easier way to cover it completely with out feeling like I’m wasting so much tegaderm?
    Thank you guys!


    New PCP nerves. #ChronicIllness #LivingWithPOTS #PosturalOrthostaticTachycardiaSyndrome #Dysautonomia #EhlersDanlosSyndrome #Asthma #VocalCordDysfunction #AdrenalInsufficiency #IronDeficiencyAnemia #Portacath

    I finally made an appointment to see a new pcp. I posted a question on Tips for finding a new pcp or something to that effect about 10 months ago. I might be a queen at procrastinating. It wil be nice to have a doctor to manage everything health wise. Its just the initial visit that is so nerve racking. 3 of my doctors recommend her to me so that makes me feel a lot better, but I read the reviews and lets just say I shouldn’t have done that. If anyone have questions I should ask or tips let me know.


    Port tips. #Portacath

    I noticed their was wasn’t any patient tips online or on The Mighty. Getting a port can be really overwhelming and I wish I had these tips in the beginning.

    1. Their are so many options for supplies. If you don’t like your needle or dressing just ask your infusion center or DME company.

    2. You can be completely in control of your port care or not. I personally access my own port at home because that is what make me the most comfortable, but if thats not your thing its ok. I do recommend to ask a healthcare professional(a nurse) to explain/teach basic aseptic technique so that know when to call someone out.

    3. This is not to scare you, but sepsis and fibrin sheath/blood clots are ALWAYS a possibility don’t be afraid call out someone if their not using correct sterile protocol or heparin(unless told otherwise) a embarrassed nurse is waaaay better than being in the ICU because you have sepsis.

    4. talk to your doctor about what the plan is in case you have issue with your port.

    5. If your accessed multiple days or weeks at a time you’ll need to figure out your shower schedule or lack their of since you can’t get your port wet while it’s accessed. This is totally dependent on your preference. You can buy a detachable shower or disposable covers that are supposed to keep water out. Some DME companies will provide them if you ask. What I do is wash my hair as needed in the sink and use wipes or a wet wash cloth everywhere else (except my port site) to get some sense of cleanliness.

    6. Most people don’t care or notice that you have port. I’ve have a port for all most a year. I don’t think I’ve had anyone ask or stare at my port even when accessed. Even if they did so what.

    7. If someone misses your port more than once, twice at most then ask for someone else.

    I hope this helps someone. If anyone has questions let me know. #ChronicIllness #IVIG #LivingWithPOTS #IVsaline #TPN #Dysautonomia