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.

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/ Common Variable Immunodeficiency Support Group

CVID is ruining my life

Treslynn
Treslynn

Hello, I'm new here. In 2013 I was in Padre Island exploring for sea shells from 3 am until 9 with a friend. Afte 5 days I was getting very out of breath and 11 hours later I was in ICU for a week. Diagnosed with CVID , I get the IgG infusions monthly and have been in the hospital with pneumonia 14 times! Last week I went to stay with new grand baby for several weeks and ended up going by ambulance to another hospital with pneumonia and sepsis.Has anyone gotten this disease this quick and from maybe  inhaling, ingesting or some other way? I use to be very active, on prednisone for a loooong time and now am 60 pounds heavier.

shrink
shrink
Although your symptoms are different and flare-ups more dangerous, I pray for the days when I am well enough to be with my grandchildren. It happens sometimes and we take these windows of opportunity. (I hate that term) but it really applies to us. Afterwards, I am so completely exhausted and have to recover for a few days, but it's worth it. It fills the soul. You will have these days. XX
Martinm
Martinm
Can someone help me. The doc called today and said I have CVID and to look on webmd.....and he would have me go to a specialist...omg...reading webmd is insane
kelli1b
kelli1b
Have any of you called and spoke to a patient advocate or called the Immune Deficiency Foundation? WEALTH of knowledge. MyIGSource has advocates who have PI as well 855-250-5111 and IDF is www.primaryimmune.org, both offter tons of amazing resources, free of charge of course
Treslynn
Treslynn
I have called and left a message to the Patient Advoocate. Am waiting for a call back.. Since I bloodworm is good now aBCBS says I do not need it. My Dr was in a peer to peer session, told that Dr it is because I'm taking the IGg infusions. Now he wants All the records.? It sounds like he is not familiar with the disease. Isn't BCBS doing malpractice? It will be 4 weeks since I was suppose to have another infusion. I didn't keep good records, but before getting the infusions I would be hospitalized more days, in ICU more, and I would be so wiped out that it would take months to regain my strength. I was in bed so much I believe my calf muscles atrophied because I had to relearn to Evan wear flip flops and I still can't wear my shoes that have barely a heal. I'm Leary about me calling, would I first be better to call BCBS case worker?Would love to get some advise
MonikaMouse
MonikaMouse
There are meds to battle exhaustion. You should also be on an antibiotic FULL TIME! To boost your immune system. Get your prevnar 13 & 23 pneumoccal injections even if they work just a little bit. Swipe mask n gloves from your clinic. Do not grocery shop, stand in line at the pharmacy, or go into any medical building without these on this time of year. It could kill you. Only a hemotologist and a center for disease should be handling your CVID. Not your family physician! Your hemo can help you when you do have pneumonia. I have had almost 30 cases. Im 45. I was just now diagnosed. Little too late. Fight for what you need. Pleurisy sucks as does intercostal chondritis. Get on a full time antibiotic. If you get migrai es, switch to Topamax. It has an appetite suppressant. Helps w weight loss ;)