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.
Did everybody also know that we can't give blood? I was also told this by my doctor.
Since getting diagnosed with CVID, I haven't asked my immunologist if giving blood is ok, I kind of assumed it wouldn't be because of the IVIG. I was assuming that receiving blood products was one of the things that made us ineligible to give.
Shoshi
You may not be allowed to donate plasma, but the Immune Deficiency Foundation suggests that we visit the plasma sonation centers and tell the donors and staff how their donation are saving our lives.
You must also consider yourself. An IVIG patient is an expensive patient. We all know the value of the little bottle of miracles. It makes zero sense to give back something we were given at such a high price. In general, we should avoid needles when we can, and limit our exposure to unknown others... Blood centers can be a scary place for people with immune disorders. Even at private drives, there is still a possibility that things could go wrong for us.
I understand the feelings if you find yourself in the middle of a blood drive, or simply want to give back since we seem to take so much. Afterall, our IVIG takes hundreds of donors to create our little bottles of life.
There have been months when I have given so much blood for testing, I end up becoming even more anemic. Being just a little lower than normal is not bad, but when you begin to drop down into the single digits things unravel quickly. When I was hospitalized earlier this year I ended up having to get a transfusion. They took so much of my blood for testing, my numbers fell quickly, too low to recover on my own.
My personal answer to fighting off the guilt, yes guilt, I can't help it, I have thrown myself into startomg a blood drive at my office. This time of year, holidays coming, people seem more likely to give. I am hoping to get 100 percent participation. There are 41 employees at our local office in Austin, but the national number comes out to more like 100. I would like to think I could get those folks to continue the trend.
But for now, I am happy with our office participating. If you go to the Red Cross in your area you can get ideas if you consider taking something like this on. As people learn how important it is to give, they are usually excited to participate. Some not so much, afraid of needles etc., but don't give up. I respect their reasons to say no and move on.