Ok so here goes. I was healthy my entire life and when I gave birth, that activated something. I was sick within 3 days with infected stitches and bronchitis. And it never stopped (this was in 2003). It started as bronchitis like 10 x's a year, then severe ear infections on top of the bronchitis, then in my mid 30's on top of all of that I got my first sinus infection ever. So literally I would have ALL 3 at the same time like 10'xs a year. Crazy right? And I was raising a baby, single mom, ZERO physical help, working full time. I also had pneumonia a couple of times, pleurisy, all kinds of crazy things. I had been written up at work and was ready to get a hysterectomy and got freaking pneumonia and almost had to cancel it all. I flipped out on my PCP demanding he check my immune system. This had been going on 5 years. He had always blamed my smoking and I just screaming that cigarettes do not have bacteria in them! They checked and I was very low and sent me to 1 of 2 allergists Kaiser had and she did the vaccines on me and TA' DA! I had CVID. Honestly - I was ecstatic. Ecstatic to have proof that I was neither a drama queen nor a hypochondriac like my family had been telling me for 5 years. Ecstatic that I had a treatment. Then a new VP came in and tried to reverse the bad write up I got and HR told him they would not allow it so he wrote a good write up counteracting what the old one said. Then he suggestion I contact our medical department who then told me about intermittent disability using FMLA, how I couldn't be written up again due to being ill. Once on IVIG I never really thought about my CVID. I just lived a normal life. Unfortunately I developed a rare lung disease from the CVID. I still live as normally as possible. I rarely get sick, work full time, have a beautiful little girl to raise and own a home that I love to never leave on the weekends. For me, I have really bad fatigue. I get it from CVID AND the lung disease. So we just figured out a routine. We do nothing during the week except work, eat, feed the cats, try to load the dishwasher. I hired a housekeepr for the big stuff. The weekends I do laundry and pick up, run errands, I try to cook in bulk and freeze and love love love to bake (anyone on my FB I'm so sorry because all I do is post food pics haha). I feel abundantly blessed in spite of it all.

I wanted to add to my already loooong post that yes treatment changed my life, saved my life...BUT it was NOT easy getting there. I had severe reactions to IVIG and my unknowledgable doc pulled me off all IVIG and refused to treat me. I had to learn everything I could, had complete strangers answering my posts all over the internet helping me, had to fight my insurance to get outside treatment, tried 4 different brands of meds and ended up on subq and figure out MY optimal treatment. Its not easy. OPTIMAL treatment is the key, if you are getting treatment and the severity and frequency of your infections have not reduced than you are likely not on optimal treatment. Its not a cure but it can be SO MUCH BETTER.

Wow - You are made out of tough stuff, Kelli. Being a single parent is hard enough - I can't imagine doing it while fighting these battles with your health.

You are very smart to take responsibility for your health care and insist on getting the treatment you need. I think often people go in and just expect the doctor to somehow figure it all out with a game of 20 questions.

I know a little something about fatigue from lung disease. It can really wipe you out. I think members of my family have thought I was just antisocial...and that feeling bad so often was all in my head.

It really makes me angry that you got that treatment at work.

I've been trying to explain to my boss that I am going to need a day off every three to four weeks for treatment. He told me that most illnesses are caused by stress....that his wife was getting treatment for rhumatory arthritis and they found it was all stress related. Clearly, he doesn't get it.

I just sent him an email with a bulletized list of brief facts, a link to wikipedia (so he will know I am not contagious), and a summary of best and worst case scenarios about the impact to my work schedule. Just sticking to the facts only as they relate to my situation. I wrestled with letting them know anything at all because I work in a very competitive market and the current economy makes it even more so. I finally decided to go ahead and just be upfront about it to try to head off any issues later due to absenteeism. Also, given the nature of the type of work I do - there are a lot of things I can do from home...especially given a valid reason. We'll see how that goes. If it doesn't help - I'll chalk it up to 'lessons learned'.

Thank you so much for sharing your experiences - and also for the encouragement. I'm sorry you've had such a difficult road.

I've been going through a wide range of emotions since seeing the immunologist this week. A few brief moments of self pity...then I get mad and get determined to kick this thing in the tail.

I've been smoking forever. With the onset of asthma about six years ago - we just thought it was related to that plus the fact that I am so crazy allergic to everything. My pulmo doctor, however, was alert enough to see that smoking would not cause lung function decline at such a rapid pace. In his practice, he observed that when he had patients who did not respond to treatment and who lost lung function so quickly - they often had hypogammaglobulinema. He put two and two together.

I've managed to quit smoking twice for three months - only to start all over again. I'm working very hard to quit now given my current lung condition. Got rid of all my ash trays. I've cut it by about 50% this week. I HAVE to quit. Smoking didn't cause this - but it doesn't make a lot of sense to keep 'rubbing the inside of your lungs with sand paper' when you are fighting to keep lung function.

I have good days and bad days. I'm on antibiotics for a chest infection right now and I just blew a 400 on the peak flow meter. That's pretty darn good for me with my 44% FEV1.

Of course, I caught my mother telling someone this week that my problem was all caused by smoking. (despite all the evidence of having had this condition since childhood -- repeated infections that were difficult to clear, multiple ear drum ruptures, three sinus surgeries, etc.) I'm trying to be patient and gently educate her. *sigh* She means well.

A couple of things:

1. Your eligible for intermittent FMLA if your company employs 50+ people and your boss can't do anything about it. This would cover your infusions, doc appts, etc:

DAMIT sorry I hit return and it entered it:

To be eligible for FMLA leave, an individual must meet the following criteria:

Be employed by a covered employer and work at a worksite within 75 miles of which that employer employs at least 50 people;

Have worked at least 12 months (which do not have to be consecutive) for the employer; and

Have worked at least 1,250 hours during the 12 months immediately before the date FMLA leave begins.

2. I have not ever heard of a reduced lung function being a symptom of CVID. It is however VERY common for us to get bronchectasis and other lung issues. Lucky your doc thinks they are related though or he never would have tested you! :)

From what I've read - patients with CVID lose lung function at four times the rate of a normal healthy person. I'll have to find where I read that. Bronchectasis most definitely would cause a person to lose lung function.

I appreciate the tips on FMLA. I have been there about six months.

This is one article I read correlating loss of pulmonary function with CVID:

http://qjmed.oxfordjournals.org/content/95/10/655.full

This article is not a very good 'pick-me-up', fyi. Here's a table from this studly:

http://qjmed.oxfordjournals.org/content/95/10/655/T1.expansion.html'

True, it may be due to complications resulting from CVID, but my understanding was that there was a correlation. Also, PFTs were part of the diagnostic process at the immunologist.

Granted, I am very new to all of this though. I know I have a lot to learn and I don't have the terminology down.

Thank you for the link. After reading it I would agree its complications from CVID. Most of the patients had an added comorbidity:

42 out of 47 patients had respiratory symptoms mostly due to bronchiectasis, asthma and recurrent chest infections.

CVID as a stand alone diagnosis does not imply reduced lung function as a symptom. Once you develop one of the above, then you would have it. I have the granulomatous lung disease they spoke of in that study. This is good article to add to my "health" folder.

If you don't mind my asking - did you have the granulomatous lung disease when you started treatment? -or is this something that developed after you'd been on treatment for a while?

i'm really sorry you are dealing with that.

I've had CVID from birth, based on my health records and life experience. I started out my journey with tonsillitis at four mos and carried on from there with ear infections (so painful), fevers, bronchitis, bronchitis, bronchitis, Rubella (even after the vaccine) from which I was horribly sick, sinus infections, eye infections, asthma, eczema, the list goes on. In looking back, I never had the energy that my friends had, and my family thought I was lazy...but I remember feeling so tired so easily. But, if you hear you are lazy enough times...you start to think you might be! I had a couple years in high school where things evened out, and then I got married and got sick over and over again--my instructors would set up a desk for me in the back of the classroom in college because I had to attend, and I often had bronchitis...and in my 30's started having ever worsening fatigue to which the docs could find no reason, and that ramped up with 7 cases of pneumonia and was finally diagnosed at age 42 (I'm about to turn 43) after my GP said, "Something's not right...you're the sickest person I know!" And off to the allergist I went (again--I've been to allergists many times). Who bumbled my diagnosis, and treatment, so I ended up calling IDF and they recommended my current Imuno doc and TADAH I've been getting treatment for 27 weeks and am improving in tiny baby steps.
SO grateful to have treatment...to know I"m not crazy...to know I'm not some whacko who wants to be sick (your head starts to mess with you, you know?), but to have a solid diagnosis and be feeling better for the first time in years. Uh...then end?

TealOrca-
Thank you so much for sharing your experiences. It sounds like you, too, have had more than your share of suffering. Who is IDF? What do you mean by your last sentence "Uh...then end?". Did the treatments stop? Did you stop responding to treatment?

> How long have you had CVID? What events led to your
> diagnosis?

According to my immunologist, most CVID patients are diagnosed after having suffered for about ~10 years with symptoms. If I think back, this is actually fairly accurate for me.

I started getting really sick in university, and my persistent cough was diagnosed as asthma (sound familiar?). Of course, it wasn't asthma -- it was CVID, but no one knew it at the time.

I believe that the sickness coincides with changes to my sleep patterns caused by university study. (In fact, I'm still fairly sure that there's a link between sleep and CVID, yet to be discovered.)

Anyway, in 2011, about 2 years after my first child was born, I got fed up with being sick all the time, and this set me and my doctors on a path to figure out why. And here we are.


> Were you scared?

Not overly. I ... thought a lot about it. I had concerns, but not what I would call outright fear. In the end, I decided that there are a lot worse ways to go, and IgG treatment is small potatoes in the end.


> Has treatment changed your quality of life?

Well, I guess. I'd say that my response is probably more muted than that. I would say: I'm no longer so sick, and I have more energy. So I feel better.


> I haven't been getting out because I feel like crap most of
> the time! LOL

I've felt very similarly. It has to do with feeling crappy and having low energy as a result. I was spending my energy up just doing regular daily things, and by the evenings and weekends, was so tired that I found myself just not wanting to do anything.

I didn't develop the GLILD until years AFTER I started IVIG, probably 2 years into optimal treatment.

You know, Teal reminded me of something. Although I was rarely sick growing up, I had WEIRD things happen to me. So I too had my tonsils removed but not until age 2, was born with a cleft lip, had normal childhood illnesses. The ONLY things I remember happening between like 8 and 20 were a kidney infection and maybe bronchitis twice. All very normal. Then when I was married in 1995 I had my first miscarriage, then Epstein Barr, then ITP (resolved by steroids) then I developed Hydradenitis Supertiva (excruciating), then I woke up one day with a golf ball sized granuloma in my abdomen (no injury no prior surgery), then I had ITP, a swollen lymph node in my neck suddenly...ALL requiring surgery. I now know I should have NOT given up my spleen but my hematologist at the time said people were still getting Hepatits from....Immune Globulin and I hadn't had kids yet, so there wen't my spleen....after my 3rd miscarriage I learned I had a blood disorder. So when I say I was never sick growing up until I gave birth...its all very true but I had some weird stuff happen along the way LOL (ITP is a common precursor to CVID, but other than that nothing I said above would indicate the disease)

Yeah, I had croup, bronchitis and tonsillitis at age 2 1/2 and they rushed me into surgery.

IDF is Immune Deficiency Foundation.

The end was just the end of that story. :)