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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gliderlove 02/12/2013

This has been an extremely long battle of being sick, and in the hospital, and recieving treatment without knowing the cause of why I was sick as I'm sure many people went through! I was sent to an immunologist and we finally did tests that gave us answers! I am starting SCIG soon. I am quite confused on what to expect though. I understand the concept of the infusions and condition, but there are still things I am confused about. I constantly have lung infections, will cough blood, and have trouble clearing secretions. I take about 4 nebulizer treatments every morning and evening while doing vest airway clearance therapy to keep my lungs healthy and minimize secretion bulidup. I have issues with my heart that I stay on medication for. I also have a lot of GI problems. I couldn't absorb anything, and lost 50 pounds in 6 months so am taking 4 creon pills every time I eat to help me keep things down. I think some of my specific questions are if it is normal to have to do so many additional treatments with this condition? I haven't found reliable info on if this is something I aquired, or was born with? Also, prognosis? Docs had alot of scary conversations with me prior to diagnosis about my life possibly being cut shorter than normal depending on what my lungs contract. Is this still what I should expect, or can I live until I'm 80?! Sorry if this is a huge repeat on other threads! Also, how do you guys work to improve your social lives while living with a chronic condition? I'm only 20 so feel that I am always pushing my limits to keep up and be normal! Any advice will be so greatly appreciated!!

kelli1b 02/12/2013

Hi there, I am so glad you found this group. A ton of amazing people with lots of experience. I'll try to answer some of your questions:

1. CVID is a Primary Immune Deficiency meaning it is a defect you are born with vs a secondary immune deficiency such as HIV which is acquired.
2. Did they do a baseline CT scan of your lungs? Bronchectasis is a VERY common occurrence with CVID. This is a widening of the airways caused by repeated infections.
3. Gut issues are VERY common with CVID
4. Prognosis is very good once you are on OPTIMAL treatment. I emphasize this word a lot because so many people are not on optimal treatment. Many people go on to live pretty normal productive lives.

Please know this takes some time to work. It is a very gradual process typically 6 months to a year to see the full results.

I developed a scary lung disease from the CVID. That being said, I work 9 hours a day, single mom (for those of you who have read this a 1000 times just say "yada yada yada" lol), own my own home, have pets and live a pretty normal life. Fatigue for me is the hardest so I just found a new normal for me. A positive attitude will get you so far. Realize this is not a death sentence. It is so scary in the beginning, but it will get better and the treatments will become part of life. Don't push yourself too hard, but live as normally as you can!

gliderlove 02/12/2013

Thanks so much! I already have bronchiectasis forming in my lungs. I have tracheobronchomalacia of my airways as well, which in short is a collapsing airway upon every breath which can cause my infections to fester and become more severe since my cough isn't always effective when I get too gunky. I get CTs and bronchoscopys to keep tabs on it. They actually thought I had CF for a while, so this is already a more encouraging outcome! Thank you SO much for the info though. I've been living with it for a long time, but info regarding the breakdown of the condition can still be overwhelming in learning how it is causing all of this. One more silly question though...why does this not progress like this early in childhood?

kelli1b 02/12/2013

You know, i do not have a good answer for that one. There could be many factors. Better replacement therapy, less infections perhaps? There is really no telling. Has your dose been increased as you have aged? Are you watching your levels? It IS overwhelming. I was trucking along with my CVID diagnosis and WHAM got hit with a lung disease. I get overwhelming. I would discuss your dose and overall health with your doctor and maybe you need an increase in dose?

CChris 02/13/2013

I just want to welcome you to the group and offer you so much support for what is probably such a hard and complicated journey. I too am in my twenties and dealing with a new diagnosis. I think what is very interesting about common variable immunodeficiency is that it is variable, which means it varies from case to case. And I have only been a member on this forum for a short while yet I see so much here that I have in common with others in terms of long battles with health. Mine are GI, upper respiratory and migraines. I too struggle with deep questions about outcome. I think it's natural to want to know in some regard what to expect from this, and we all want to relate to one another. I think Kelli has offered really great advice too. Finding an optimal treatment is the hardest time, because things aren't set. And that's the place I'm stuck at too. A book that is helping me through is: Full Catastrophe Living: Using the Wisdom of Your Body and Mind to Face Stress, Pain and Illness.

In terms of improving the social skills, I see it as something that is in flux really. When I was first diagnosed, my health was really bad and I had to march to beat of my health for a while and accept a smaller circle. It's day by day. If my strength grows, so does my circle for that day. And I have to have patience with myself to accept that. It is still hard!

Best of luck!!

deleted_user 02/13/2013

Hi,
Just thought I would welcome you to the group as well. I am very recently diagnosed as well (last month) and have NEWBIE tattooed on my forehead! LOL.
I'm afriad I can't offer much advice as I am learning myself but since I joined this site I have felt much calmer and more 'normal' since the day they told me.
I'm 40, so double your age, and I live a very active life. I'm fortunate to live not far from the beach so whether winter or summer, we go for long wals, collect shells.. I have two small kids (3&6) and I just about manage to keep up! Some days I don't feel like it but I push a little and end up being so happy that I did... other days aren't so good and you maybe don't feel like even crosssing the door, so... movie night, pizzas, feet up on sofa and that's bliss.
I still go out occassionally with friends eating and dancing and they understand if at 11pm I grab a taxi cause I have had enough.
I'm worried too about the future, ALOT, but I havejust read Kelli's post and when I read..'A positive attitude will get you so far' , I thought... she's nailed it on the head.
I'm terrified deep down and I'm going for my second infusion tomorrow at 8am. I have read all the advice, followed all the links and read the articles, and I am ready for it...
I believe the treatments will do me good and prevent further damage and infection , or at least dramatically cut them down, and so should you. There is no reason you cannot have a full and rewarding life.
I wish you every success .

gliderlove 02/13/2013

Thank ya'll so much! I am just getting started with setting up the infusions, and we're starting low and building over the first few weeks to therapeutic dose to help reduce effects and irritation. I have just been on chronic antibiotics for several years, along with the other lung therapies and treatment every day. I am culturing multiple resistent bacteria though, so only 2-3 antibiotics can be used anymore. It's good we figured it out now!! You gave amazing input though, and I really appreciate it! This is a comforting place to browse and feel better prepared. Sometimes you can only take so much out of what the doctors say, and you need peeps that get it!

deleted_user 02/13/2013

just a reminder....
there is hope for a more 'normal' life with optimal treatment (whatever normal is!)
getting dx early will keep you from lot of the damage that comes from years of going undx....so thats good news
i have cvid my cousin has it and my daughter...
my daughter went to college, was on a full track and cycling scholarship....she is now in her 3rd yr of pharm school...life is doable you just have to be a little more careful...find a knowledgeable doc that treats infections quickly and aggressively to avoid the damage left behind from too many infections...
there is hope...i was a 4th grade teacher for 17 yrs before i had to retire (i got whooping cough from a student in 2010) it left a lot of damage but i did what i loved for 17 yrs now i make the most of each day and do as much as i am able...
it isnt a death sentence just a shift in how you do things....

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