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Can we live a normal life?
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Just curious to see if anyone has lived a pretty normal life here after going on IVIG? How long has everyone here been living with cvid? I am just worried hearing about all the horror stories on the web:( Is there hope for us to go on living?
Posted on 03/14/11, 03:15 pm
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Reply #1 - 03/14/11  8:01pm
" Up until recently I lived a completely normal life. I think it depends on how well your doctor manages your particular case. My doc was very aggressive and kept upping my Ig replacement until I stopped getting sick and had no problems switching brands when I had significant reactions. I am a single mom, work full time for the vp of a large oil company, and even helped out in my daughters class all through kindergarten. I can't see any reason why you shouldn't lead a normal life :) Even with my new lung disease, my plan is to go back to work and live each and every day as normally as possible. Why should I miss out on anything just because of CVID? No way Jose! "
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Reply #2 - 03/14/11  8:19pm
" It's not as bad as it seems disneyfan. When people are posting, they often are asking for advice or support on the things that worry them the most. It doesn't make for a very comforting example of life with CVID.
I was diagnosed 1 1/2 years ago, and I've been on IVIG ever since. Life is now pretty normal. I'm a lot healthier than I was, the only thing that I can't do anymore is run, and I can't say I miss it. My husband is my rock, my kids are healthy and almost grown up, and I have the support of a large family who keep waiting for me to need help. (I'm fine Mom, Honest!!!!)
People with CVID who are treated with IVIG or SCIG can usually expect to live a normal life span. We have a few more challenges, and things to keep track of, but there is a treatment for it, and maybe someday there will be a cure.
When you're worried about something, or just need to vent to people who know what you are going through you've found the right place.

TinaMcg "
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Reply #3 - 03/14/11  10:07pm
" Some of us do . . . I think it really depend how early your are diagnosed and what kind of damage your infections have caused. I am one of the lucky ones. I was diagnosed almost 30 years ago. I was one of the initial subjects in the initial trials of IViG in the US. I have been married 28 years to the same wonderful woman. I've been pretty lucky in my career, I've own several businesses and led several others. My biggest gig was running $100 Million public company, Both of my kids have CVID. My son was president of his college student government and my daughter is a freshman at an Ivy League University. Some of us lead pretty normal lives. I have been lucky. "
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Reply #4 - 03/15/11  7:44am
" You absolutely can live a normal life while on IVIG!! I think that the situations you read about (on here and other message boards) are the exceptions - not the rule. And as Mark said, it depends on when you were diagnosed. I was diagnosed very early ... I have very little lung damage ... so I am living life quite normally. Try to live your life, and not dwell on your condition - it will let you know when you need to pay attention to it - just don't let the 'idea' of having CVID consume you!

Welcome to the board! It is a great place to ask questions of people who've been there! "
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Reply #5 - 03/15/11  6:32pm
" I guess I could say I live a fairly normal life, but when you have always been sick it is the only thing you know and it is normal to you. I've had CVID all my life but diagnosed a little over a year ago. You find ways to make things work for you, you wash your hands a little more, and get clever about how to make sure you're getting what you need.

Yes there are days when I'm really down, and I feel like I've been hit by a truck, but even people who don't have CVID have those days too, we just get them a little more frequently.

I am an executive for a retail company. I work 10 hours a day, 5 days a week and every other weekend. I live on my own with my fiancee, and we have two kittens. I have vacationed outside the country, taken road trips, and done all sorts of things. I just make sure I have my inhalers, I listen to my body when it tells me to slow down, and I always know where the bathroom is lol.

We can live just as normal a life as what normal is as long as we listen to what our bodies are telling us and follow their rules. A lot of people on here have really great family stories, and are very encouraging.

Hope that helps :) "
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Reply #6 - 03/15/11  9:45pm
" if the weather stays the smae i find that i get sick less.
unfortunately any change in the weather i get sick more i notice.
thats been happening alot so ive been sick on and off lately more.
and yea i pretty much have no quality of life besides going to the doctors and out here and there but not alot of walking unless there are places for me to rest and catch my breathe or lean on "
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Reply #7 - 03/15/11  10:28pm
" It is my opinion, and hope that we can indeed live a long and normal life. I was diagnosed with CVID right at a year ago. I am 30 years old, and had no history of reoccurring sickness/illness. I suppose I am one of the fortunate ones to have been diagnosed so early. I have had 11 IVIG treatments so far, with no real side effects (with the exception of being tired afterwards). I usually take 2 extra strength tylenol prior to each treatment. I know when I was first diagnosed, I didn't know what to expect or think, and I was concerned what the future held for me. After several talks with my doctor, and the posting of many questions/concerns on this website, I manage to sleep a little easier at night knowing there are many others out there going through this exact thing. I can't emphasize enough the amount of insight that i gained from the various others who post on this website. "
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Reply #8 - 03/17/11  5:45am
" From my perspective, my life is as good as I allow it to be. I really have a great life, even if I do know where every bathroom is within a five-mile radius of my home. :-) I am doing so much better now that I am on treatment. This is my new normal. :-) "
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Reply #9 - 03/17/11  8:01am
" I am almost 40, was diagnosed about 9 months ago but think I have had this all my life. I have two boys in Elementary school and after they were born I was sick a lot more often. Things adults should have immunity too I did not. After being on IVIG I have been able to be in the classroom and school with only one cold (nothing more than a reg. cold) and one bout of Flu that when an infection started I was able to get antibiotics within hours and I recovered similarly to everyone else. This has been a real life changer for me.

My dh has been offered an assignment to Bangalore India that would start in about a year and we are seriously considering going. With my treatment, remembering to have great health habits and some caution about mosquitos, I think it will be a lot of fun. "
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Reply #10 - 03/17/11  9:05am
" I was diagnosed in 1990. So I have been on the IV form of gamma globulin and I have been on Hizentra sub q, first in the testing form and now that it is out I still take it. I lead a normal life. I have a full time job. I do try to not overdue it. I get up and go to the bed at the same time each day. I also have ra and am followed by a great rheumatologist and and immunologist. "

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