Common Variable Immunodeficiency Support Group
Common variable immunodeficiency (CVID) is a group of 20-30 primary immunodeficiencies (PIDs) which have a common set of symptoms but with different underlying causes. CVID's underlying causes are different, but the result of these are that the body doesn't produce sufficient antibodies in response to exposure to pathogens.
I had my blood drawn two weeks ago, to see what my levels were at, and then I went in after one week for my infusion, got the lab results and my levels were at (for IgG) 689, but it said that the normal range should be between 694-1618. Should I be happy with that? Content? And the lab result did not post anything saying it was outside of the reference range.
Just curious. Stimpy
Just curious. Stimpy
Kelli - you are a great mom. My kids loved cereal for dinner and believe me there were plenty of times that's what they had.... The most important part of being a Mom is LOVING your children and you do. She needs you and understands more than you think. I wish there was someone who could help you, it's really hard. Just keep thinking positive and hopefully things will start getting better. And like Stimpy said, "don't be afraid to ask for help" We all need to ask for help now and then.... Just keep loving each other.
BP - good idea about the carrot juice, I'll have to try it. And you're right about the dosing...it just doesn't make any sense.
I'm so glad that I have all of you to talk to, it keeps me sane and makes me feel better about feeling so tired. You give me strength and help me realize that I'm not alone. Kathy
We deserve awards and applause for surviving, mush less dragging ourselves around and working like everyone who is healthy. It takes us so much more time and effort! A few years before I was diagnosed, one of my co-workers came into my classroom while I had bee trying to eat. at the time, I had two bleeding ulcers, which were not finally diagnosed for another year! I went from 116lbs to a mere 92 lbs, and everyone talked about me as if they thought I had been starving myself because my ex had left for Kuwait just before the Iraq invasion. Anyway, I was so embarrassed because I had been trying like hell to eat the sandwich, but just couldn't swallow that. I had begun to tear up from frustration and fatigue when she came in. We finally talked a bit about what had been happening with me-I had told no one what was happening, not even my ex! I thought at the time that he had more than enough on his plate without knowing my drama at home. Anyway, when I explained that I had not been lazy in arriving to school only 10 mins. before first period, or starving myself, because of stress. I described to her the numerous times I had to call in sick at the last minute because another military 'key spouse' {we were a sorority of sorts taking care of the other families...} drive me to the ER while I vomitted blood into a trash can. Getting dressed in the AM would be frequently interrupted by the nausea, vomitting, and need to sit down on a heating pad because of severe back pain and fatigue. Grading papers and lesson planning took me much more time than other teachers took because I was so exhausted all of the time. When I finished, she was crying and apologizing for not having actually ASKED me what was wrong, how I was, or if I needed anything.
Point is-healthy people have NO idea at all, and never will. There is nothing that they could ever do that will help them understand. It's not like a man wearing a fake pregnancy tummy device to know what it is like to carry a heavy belly, or telling someone to try breathing through a pillow to know what an asthma attack is like.
Sorry about the ranting-I just had to cancel and reschedule yet again my back procedure bacause a friend bailed on me at the last minute. I am literally running out of friends I can count on for the real stuff. So many are eager to offer to pray for you, but not willing enough to actually do something that could literally help my health. What is that about?!?
But I am so grateful for my inside friends here! Love ya'll!
Shoshi
I can't help but think that God has set me up in this house that is less than $800 a month in case of a disaster or I can't work. I have been abundantly blessed. I hate to think about the what "if's" but gosh I have 2 diseases and now an autoimmune? They need to get it figured out quick. Don't know how much longer I can go on like this my friends.
Shoshanna - you are absolutely right. No normal person has a clue what we go through. Nor do I tell ANYONE. The few people I do talk to, man I do not want to dump on them you know? I blow it off as I am tough. Some people say I can ask for help. But who? My bff works graveyards and lives across town and has her own problems in life. I dont want to impose on people. I want them to enjoy being around me not be bogged down by my stupid effin issues!
Ok im done ranting lol
Kelli: Its ironic, I am sitting around here bored, without much purpose. If I was closer by, I could help you out by cooking meals, whatever you needed. I swear to God maybe we could open a big CVID house and run it ourselves...It takes a village....LOL
But then a childhood friend of mine said something that made me pause...I sent out a mass email to family and friends right before the first IvIg this month to answer the questions they had. I included links to informational websites like IDF, and resources like some of the clearer uTube videos of others like us going through the IV infusion and SubQ methods. Marla {my bff during my Senior year of high school and she introduced me to my ex} emailed back and asked why the hell I hadn't told her before, and that she felt honored to be among the people I trusted to know this stuff about me. She'd felt left out and hadn't known what to do for me before. I was floored and felt guilty that I hadn't told her right away when I finally got the diagnosis in 2006.
And thanks everyone for letting me get all of that off my shoulders earlier. Just so much frustraion builds and I have no where else safe to release my fears and frustrations.
Shoshi
You asked, How come you get 80 grams, and I get 40 grams. Is that because of size and weight of the individual??
The answer is probably. I'm 240 lbs. Also my CVID is B-cell in nature, B-Cell abnormalities generally need to maintain a higher level of IG
You mentioned the strangeness of the conversions between the viva/Hizentra and IVIG. I'm not sure about Viva, but Hizentra is more concentrated than IVIG (20% solution). I also don't know what concentration Carimmune was, but I do know that I'm getting exactly half of the volume (60ml = 12g).