gliderlove
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- Hey, so I had had a few conversations started recently so I figured I would follow up to let you guys know what happened. I went on my trip. I did have a few run ins with security. I got put through x-ray, patted down, and they ran swabs on my...
- Hey I am about to fly across the country for a conference and am not really confident with how airports run because I typically don't travel alone. My doctor wrote a letter saying that I have to travel with medical devices and various prescriptions,...
- I am wondering who enjoys cooking! This is not really relevant to CVID, though I could create an interesting rant that later ends in an explanation as to how it fits the picture! But, I am a single college student. I am in that awkward stage of a...
- I am having a lot of lab work done tomorrow. We are testing for some additional deficiencies, a bunch of random junk, and re testing all of my antibody responses. They initially were drawn in some odd time frames so he wants to find a "new...
- Hey I am moving from SCIG to IVIG this week. SCIG wound up being a bad option for me and we are having way too many issues with the infusions. So, I have some questions. Everyone seems very on edge anticipating reactions with me, but we're hoping to...
- I have noticed a lot lately that this condition literally consumes my life. Though I may not be the one starting the conversation....it somehow manages to come up. I have needed more favors from friends lately, even if it's just a pet sitter to...
- So a little update on where things are at! There was a new immunology medical center opened up in my home town, and I am getting to go back to consult with an amazing doctor from a huge research center in Colorado. This became exciting when a few...
- I caught that oh so lovely stomach virus that's been going around and have been puking and feverish the last 24 hours. Got sent home from work today, go figure! Needless to say I am super tired, and extremely dehydrated. Any thoughts on how soon it...
- Hey.I am a furnace all day everyday! I can't ever get rid of the fevers, even when I'm having my better days. It's miserable. And the fevers get worse at night which I feel is probably because I work a lot harder to breathe. Anybody around me is...
- Hey! I have a whole list of issues to discuss at my clinic appointment this week but am needing some suggestions on infusion reactions. I am using 10g Gammagard SC every week and always have some type of reaction and may times issues continue until...
- I love this forum, don't get me wrong, but I feel a real need to personally connect with other immune deficient patients. I want to see faces, and have real conversations. Not sure how big our population is, if this would be a possibility, but what...
- Hey there! I just got out of the hospital and had to jump back into classes right away so have a rough recovery ahead. Oh boy, there is so much I could say and attempt to discuss about that stay. It was rough! One thing I wanted to ask though was...
- Hey. I am on my 3rd day in ICU and not doing well. Came up with a nasty fungal and bacterial infection in my lungs. Have a lot of IVs and therapies going but still cant ventilate on my own. Im on non invasive ventilator support right now and trying...
- I was moved from 6grams weekly to 10 grams weekly of Gammagard this afternoon since we can't knock out my infections. I have been using a full 60ml syringe and two infusion sites with the Freedom 60 pump which is the maximum it can infuse. Now with...
- I had an interesting experience yesturday! I made the legal documents for my Advanced Directive with my family. I am 20 but have been very severely effected with this condition in my lungs, GI, heart, etc. It's just bound to happen at some point...