Living with Common Variable Immune Deficiency (CVID) - when Germs Are a Threat
Most people do not know of my CVID illness. I developed a lazy habit of simply attributing most health nuisances to Lyme disease - to avoid the glazed, puzzled, or bored look in people's eyes.
Apparently in our post-AIDS world, the phrase "immune deficiency" is the problem.
Whether it instills mild terror or the word 'immune' confounds the mind, thirteen years later I still don't know.
Though if I'm being particularly evil, I tell someone I have "hypogammaglobulinemia," a broader name for this immune deficiency disease. This is a particularly useful tactic to prematurely end a poorly directed conversation.
Otherwise, the limitations imposed by CVID can not always be hidden and now I've finally decided to come clean.
[For a more academic explanation of what common variable immune deficiency is, and how it's diagnosed and treated, refer to the following article:"Common Variable Immune Deficiency: Symptoms, Diagnosis and Treatment." ]
The following, unlike the aforementioned article, is more of an inside glimpse into daily life with CVID, and ultimately about coping with this immune deficiency disease.
CVID, Shopping and Parenting - Life's Challenges
Common Variable Immune Deficiency (CVID) is simple in essence: it involves a weakened immune system (deficient antibodies) and germs provide additional challenges than they would otherwise.
Trips to the grocery story, for instance, are a calculated risk, especially now living in the city. Yet, I am not nearly as germophobic as I was when first diagnosed with CVID. Then, most every public door was opened with paper towel in hand, and I avoided many outings. That was mostly unnecessary.
It's not as if patients catch anything and everything, but risk of infections is real. Subsequently, a healthy, or unhealthy, amount of fear accompanies the disease.
Exposure to crowds, or even large family gatherings, with someone always a carrier, is a biggie.
Apparently in our post-AIDS world, the phrase "immune deficiency" is the problem.
Whether it instills mild terror or the word 'immune' confounds the mind, thirteen years later I still don't know.
Though if I'm being particularly evil, I tell someone I have "hypogammaglobulinemia," a broader name for this immune deficiency disease. This is a particularly useful tactic to prematurely end a poorly directed conversation.
Otherwise, the limitations imposed by CVID can not always be hidden and now I've finally decided to come clean.
[For a more academic explanation of what common variable immune deficiency is, and how it's diagnosed and treated, refer to the following article:"Common Variable Immune Deficiency: Symptoms, Diagnosis and Treatment." ]
The following, unlike the aforementioned article, is more of an inside glimpse into daily life with CVID, and ultimately about coping with this immune deficiency disease.
CVID, Shopping and Parenting - Life's Challenges
Common Variable Immune Deficiency (CVID) is simple in essence: it involves a weakened immune system (deficient antibodies) and germs provide additional challenges than they would otherwise.
Trips to the grocery story, for instance, are a calculated risk, especially now living in the city. Yet, I am not nearly as germophobic as I was when first diagnosed with CVID. Then, most every public door was opened with paper towel in hand, and I avoided many outings. That was mostly unnecessary.
It's not as if patients catch anything and everything, but risk of infections is real. Subsequently, a healthy, or unhealthy, amount of fear accompanies the disease.
Exposure to crowds, or even large family gatherings, with someone always a carrier, is a biggie.
- CVID basically means low antibody count, dysfunctional immune system and poor resistance to infection.
- Exposure to germs in daily life can produce challenges.
- Life can be semi-normal with CVID, and it can also be quite difficult.
Comments
Mary
(Guest)
(Guest)
02/03/2010
I am a CVID sufferer. I fought with Blue Cross and won in California and Arizona. Keep fighting. I'm on early Medicare and it seems to be taken care of now. I prefer infusing at home to the IV in the hospital. There is not the down time of two weeks when the iv is wearing off. You are at home in the privacy of your own home, and pajamas. Infusion keeps your immunity steady.
People don't understand why I have to isolate myself and how I can get so tired so quickly. I had six straight years of pneumonia. Then I LOOKED sick. I don't look sick enough now. I live alone, I do keep in touch with people on the computer, which helps. Glad to be alive and relatively well. I was at death's door before I got diagnosed. Hang in there one and all.
Meg
(Guest)
(Guest)
11/21/2009
While I don't suffer from CVID, my 5 yr old son does, so I can empathize - your struggle is his. He was diagnosed at 2 after a tough few years as a sickly baby with multiple ear infections, sinus infections and finally swollen, hot joints that led to 8 days in the hospital treating a misdiagnosed "staff infection". I tried the IVIG for several years but the side effects where brutal (migraines, vomiting, etc.) and the 9 hr days at the hospital once a month with a two year old were miserable. We discovered from our immunologist at Childrens Hospital in DC there is an alternative called Vivaglobin. It's a weekly subcutaneous treatment that takes approximately 2 hrs but can be self administered (or administered by parents in our case) since the needles go into the fat in your belly instead of the veins in your arm. So much better than the long days at the hospital worrying about what possible germs we were picking up there! Plus the insurance companies should like it since it's less per m
kandi
(Guest)
(Guest)
11/19/2009
treatment here in Seattle is $17k per IV. Glad to learn there is a sub small injection. Blue Cross is refusing to pay and it will go to arbitraton.
kandi
(Guest)
(Guest)
11/19/2009
treatment here in Seattle is $17 per IV. Glad to learn there is a sub small injection. Blue Cross is refusing to pay and it will go to arbitraton.
Kandi
(Guest)
(Guest)
11/19/2009
Have CVID and Blue Cross will not pay for iv treatment. Have lung disease named pulmonary fibrosis
I am 42, have a serious case of C.V.I.D. Now - A B
(Guest)
(Guest)
08/13/2009
I just had a biopsy for a lump under my arn near by breast. What are the Cancer Risks & treatment for C.V.I.D.? Also, I've been self infusing for over 1 year. But the I.V. sites are becoming very sore & am considering going back to "Home Health Care" I.V. to give the skin on my thighs, stomach to rest. Do you have Cancer Risk Treatments Info? Also, since I am truly sick, anemic, trying to maintain my nursing career. Now had this biospy & it's not an infected lymph node?[
Deborah
(Guest)
(Guest)
07/19/2009
I was finaly diagnosed 2 years ago after being chronically ill my whole life. Your article made me feel that I am not alone. I also don't truly explain me illness because many jump to conclusions and others are just tired of me being sick. A year ago I had to go to the hospital by ambulance. Right away I hears "oh, you are HIV" That changed the way I explain things and most of the time I just don't say anything. Family is not supportive as they always say "She sick again!" I feel that most people just don't want to bother anymore. I've had to quit working and being on Disability id rough and appears to be another huge stigma. I found you by chance, maybe by fate. Thank-you for letting me know that I'm not alone.
Rebecca
(Guest)
(Guest)
03/10/2009
I was diagnosed with CVID in August of 2008 at age 41 after 3 years of moderate to severe illness culminating in the loss of a 1/3 of my right lung to an abscess. I had the bizarre symptom of systemic reactions every time I ate ANYTHING, but didn't test allergic to a thing. After receiving IVIG infusions (when it was finally discovered that my IgG were quite low and IgA a little low) the symptoms have dramatically improved. The autoimmune hives that I have had for 8 years have also disappeared. I don't isolate myself completely. I'm just careful to wash my hands alot. Don't touch my face. I don't shake hands either, which can be awkward, since I have to meet new people frequently... sometimes I blame it on the hardware in my right hand from a break several years ago. I have links on my website to information about CVID, IVIG infusions, and plasma donation, as well as my story. www.rebeccazook.com (go to Bio, click on the antibody icon)
sher
(Guest)
(Guest)
01/27/2009
thanks for a well-written piece. i was diagnosed with CVID after having ITP (basically, my platelets left and didn't leave a note ;-) the only reason i was diagnosed relatively quickly (6 months) is because i have a sibling who also has CVID.
to alan who wondered why he would get so tired or achy after an infusion: your body is essentially being introduced to "invaders" if you will and it is reacting. taking an antihistimine before an infusion as well as some motrin helps me a lot -- i have had horrific reactions to IVIG in the beginning. but that helps a lot. i still get pretty wiped out afterwards for the evening, though. so i rest.
hang in there!
~sher
http://www.wrekehavoc.com
Ann
(Guest)
(Guest)
12/28/2008
My so is 16, and told he has CVID last year. He also has Thalassemia minor, IBS, chronic Sinusitis, and stays ill all the time, with one problem or another. He has reactions to his IvIg infusions and gets headaches a lot. I am a single Mom, now unemployed and had to put him on state insurance so he can receive his treatments every 4 weeks. They come to the home now to give them. He keeps a decent attitude about it all, but he is soooo lonely from all the isolation. I am trying to find a way to help him with at least his symptoms from the infusions and the sinus and stomach problems. I am do this with natural herbs, minerals, priobotics, and organic healthy foods. We are starting to have a few favorable reactions to it all, but it will only be known in time. I will be writing a book when I have more answers. If anyone would like to be part of this, please write to me at newcar315@yahoo.com. I hope to have something that will help others and make it easier for all that are dia
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