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    Chronic illness gift basket help?

    Hi all! A friend of mine (21 year old female) is having a really rough time with her chronic illnesses lately (more being diagnosed and in & out of ER) and her friend and I are getting together to make a care package to surprise her with. She has POTS, EDS, and more. Does anyone have any ideas that would be inexpensive? I’m currently unable to work and have no source of income 😅. #ChronicIllness #PosturalOrthostaticTachycardiaSyndrome #EhlersDanlosSyndrome #Gifts #PiccLine #MedicalZebra


    #FeedingTube #EhlersDanlosSyndrome #Dysautonomia #TPN #GJtube #PiccLine

    I’m looking for people who have any type of alternative nutrition. I’m struggling a lot with it. Don’t know where to post this. I have so many questions.

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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


    Advice for a #PiccLine newbie?

    I got a #PiccLine three days ago for #TPN .
    Any newbie advice?

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    Tips on a hickman line #ChronicIllness

    I’m getting my first hickman next week, I’ve had two picc lines before for TPN but my doctor had to pull my second line yesterday. During its original placement it was put to far deep into my chest so it had to be pulled twice, a total of 5 1/2 centimeters. After all that the insertion site was bigger than the line so it couldn’t heal properly. We’ve attempted to place a hickman before but I had a panic attack so this time they’ll put me fully asleep but I’m still really scared. #ChronicIllness #HickmanLine #PiccLine #SuperiorMesentericArterySyndrome #TPN


    One Week Into Hospital rant

    #CysticFibrosis #hospitalstay #antibiotics #PiccLine #Breatheeasy.
    just wanted to vent a little bit about how my hospital is going (not that anyone cares too much lol). so basically I’ve always been on the same meds for MRSA and Pseudemonous; vancomycin, tobramycin, and ceftazadime, and usually by now I’m feeling a bit better but I don’t??? oh yeah and I also tested positive for mycobacterium in August so they don’t know if that’s what’s causing my symptoms. I’ve just had a super bad wheeze and was coughing up blood over the weekend and ever since then I’ve sounded way way worse. also note that ventolin doesn’t work for me at all so they don’t believe it’s Asthma of any kind. I’m a little worried because I have PFTs tomorrow so I really, really hope they haven’t dropped or I’m going to be spending a few more weeks after next week here.
    another thing that bugs me a bit is that I’m on another ward this time because I’m growing mycobacterium so I needed to go into a negative pressure room and I’ve just found a bunch of differences that have bothered me a bit. no one comes to clean my room anymore which is pretty odd because they did everyday when I was on the “less infectious” floor with the MRSA and pseudomonas. also I found that the nurses really aren’t as educated with cf and I always tell them that I take creon right before I eat anything and it’s not like a strict time I must take them, but they don’t really listen to me. since I’ve been here vitals and everything has been good but they still come in every hour to check of oxygen is working when I’m not even on oxygen. so kinda weird and different, also not hating on nurses AT ALL! I’m so grateful and thankful for the hard work they put in and probably wouldn’t be where I am today.
    a little off topic but last night somehow all my dressing came off of my picc line? and it was just exposed cause it doesn’t have sutures or anything to keep it from falling out. luckily I realized and woke up and it didn’t fall out but I’m just worried about possible infection as i accidentally touched it when it was dark in the middle of the night and was definitely breathing on it.
    anyway that was kinda a long rant but I wanted to let it out :)


    Sick and Tired of being sick and tired...

    No one can seem to figure out what is going on with me. My body is one huge mess. In February I was sent to #ER when my PCP had my labs drawn STAT at her office because she said I looked white as a ghost and noticed that my hair had drastically thinned.

    My hemoglobin came back at 5.5 and so I ended up admitted to the #Hospital for a few days where I received a blood transfusion (2 units then). They monitored me and my hemoglobin went up to 8.3 so I was discharged & sent home.

    I followed up with my #hematologist and it was decided that I would have a #PiccLine placed and would begin a series of #ironinfusions . Since February, so in the past 8 months, I've had to have a total of 7 #bloodtransfusions (for a total of 13 units transfused).

    My #Endoscopy and #Colonoscopy showed no signs of a GI bleed. Even the site where I'd previously had a severe bleeding gastric ulcer is nicely scarred after having it cauterized 3 years ago. My #BoneMarrowBiopsy came back normal. My #uterinebiopsy came back normal. I even had the #capsuleendoscopy (#PillCam ) done to check further into the small bowel and apparently that came back normal as well.

    I've had over 30 iron infusions (have tried both #Ferrlecit and #Injectafer ) and still my Ferritin levels, Iron levels, & Iron Saturation remain in the single digits.

    They've not been able to get my hemoglobin above an 8.3 and it's only been above 8 two times (an 8.3 once & an 8.1 another time). On average, I live on a day-to-day basis with it in the 7's, but it has dropped down to 5.0-5.5 over a handful of times. It seems I've needed a #Bloodtransfusion nearly every month.

    I'm so utterly exhausted all the time. I have no energy or motivation for anything. My life consists of appointment after appointment. I basically don't leave my house unless I'm having to attend an appointment. I just don't have it in me.

    My depression has hit so hard. I isolate even more than before because I have absolutely no energy. And that only fuels my #Depression and #PTSD even more. It's like the life is being sucked out of me in all directions.

    And the doctors seem to be following up with me less and less. Like this is no big deal. If only they were the ones having to go through this...

    #IronDeficiencyAnemia #Depression #PTSD #MedicalPtsd

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    I finally got a picc line and iv fluids regularly every other day! I’m so excited to finally be able to do iv therapy at home rather than a peripheral iv and fluids at the hospital! #Ivtherapy #PiccLine


    Has anyone gotten their picc line out for Lyme and then get all the systems back but test negative? #LymeDisease #Bartonella #Pain #PiccLine

    I recently got my picc line out that I had in for 8 months to fight Lyme Disease and Bartonella. I was doing fine for the 1st week but now all of my systems have come back. I feel like I’m back to square one but my blood test are coming back negative with 1 strain of Lyme so my doctor is not treating me. I can hardly walk I use my hands this is crazy. I thought the day they told me I was negative for Bartonella and only had I strain of Lyme I would be relieved and move on with my life. I never thought I would say this but I wish I had my picc line in, I felt so much better.


    Itchy PICC Line Dressing

    How do yall deal with an itchy PICC line dressing? I'm using the most hypoallergenic sensitive skin option my Homehealth Pharmacy has, I'm on high doses of antihistamines, and I use cold packs to take the sting out of the itch. But it's still awful. I've had it since Dec 2018. Thanks yall!! #picc #PiccLine

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