about me

I am 51 years old, I live in small town Kansas, I like to call it Hooterville! I am married, have no children, live with 2 cats, 1 small white dog, am a nurse, and I was recently diagnosed with CVID. What the heck is CVID?? That was my question, too.
More about me...I was born in another small town in Kansas and have grown up within 200 miles of where I was born. I remember being a sickly child, but I was "cured" when I was in the second grade and had my tonsils removed. I don't remember getting sick much after that until....about 1986. I had graduated and was working as an intensive care nurse at the VA in Wichita Kansas. I had multiple sinus infections, bronchitis, even sinus surgery. I remember feeling miserable, and I was in trouble at work because I was sick so much. I saw my PCP, an ENT, and an allergy doctor. The allergy doc told me that I was "allergic" to yeast...What?? I followed the yeast free diet for a while but didn't feel any better or worse with or without it. So I resumed eating "yeast" products and didn't think much more about it. I remember feeling sick with upper respiratory problems almost constantly. I got rid of my cat..."you might be allergic to cats". We built and moved into a brand new house..."I could be all the old stuff in your old house". I gave up friends that smoked, "you shouldn't be around second hand smoke". We didn't go or do anything because I felt so bad, always. I remember visiting family and falling asleep on the floor at their house because I felt so rotten. Nice company wasn't I? I visited my sister and spent the whole time on her couch because I felt so bad.
My dad got sick and died of leukemia. We moved to small town Kansas. I went to work, oh but I missed the first whole week because I had bronchitis. What an introduction! I worked and got sick. I missed the whole summer of work the year OJ killed his ex wife. I followed that closely on TV. What a life! I changed jobs to a "day" job. If I don't work nights that might make me feel better~but alas NO. I got sick regularly and I never missed a day or 2 I missed an entire week. Changed jobs again, maybe if I didn't provide direct patient care I wouldn't get sick. Still no good. I still got sick. I got the pneumonia vaccine, it's important to stay well.... It's a good plan but didn't work. Spent a week in the hospital with pneumonia. I had NO sick time left, but a boss that didn't get angry because I was sick. Find your blessing where you can.
On April 9, 2009, I had pneumonia, again, but this was different. The right side of my chest hurt so bad I could hardly breathe and the bloody sputum was never ending. Xray shows bad plueral effusion. Life flighted to large hospital in the city. 2 days in medical ICU, better. CT shows "loculated pleural effusion". What the heck is that??? We need a thoracic surgeon...Who me??? We are going to open your chest cavity and scrape off the infection from your right lung!!! Who are we talking about????
Off to the OR, first let's put in an arterial line...That's my arm.... Wake up in Surgical ICU....I used to work here. Mark is at my side, so is a chest tube, an indwelling urinary catheter, and multiple IV lines! You want me to do what!! get out of bed and walk??? What is going on here.... Eventually recover enough to go home with my friendly oxygen concentrator. You really shoud consider changing jobs to stay out of so many nursing homes... Oh I'll think about it...bronchitis again, and again.... Maybe I should change jobs... Work 5 minutes from home, sleep in my own bed and care for old people. Bronchitis, bronchitis, bronchitis, bronchitis... Maybe you need to go see the pulmonologist again. Might be this or that, let's do some lab.
A week later... this is Dr. Trumbold.... your immune levels are the lowest I have ever seen on a patient... WHAT is happening to me.... put in a portacath and give you gamma globins every week for the rest of your life...if you don't have lymphoma..... need more tests. Study about this on line... scared silly.... Will send you a copy of your lab. Go see PCP, he will fix me. "This is out of my league". Go see a specialist in immunity....
Welcome Dr. Bernabe. "Surprised I am not meeting you in an intensive care unit." More tests including 90 ml of blood, urine, CT of chest and of sinuses. Going to start SubQ immunoglobins as soon as insurance OKs. Week goes by, another week goes by, and another goes by... I thought we had to get right on this.... go with the flow. Insurance has denied your request for immunotherapy, need more information. Another week goes by.... wait and wait and wait...
Need to have the first dose in a controlled setting...where... will set it up for you. Who knows how to do this? I can read the instructions. I recieved 89 ml of Vivaglobin in the left side of my abdomen with this crazy spring loaded pump...not even an electronic pump... where am I?
Cough cough cough, bloody sputum, fever not good. Come to KC to see the doctor... "sickest person I've seen today" Chest Xray = double pneumonia. SHIT!!! Home health to come out tomorrow to teach how to infuse Vivaglobin... Janie comes SA02= 85% not good at all... need to call the doctors office. Hospital....
IV immunoglobins...might have anaphylaxis... start slowly at 1 am ... if you feel your throat swelling call me... Who does this life belong to??? No reaction yippee.... feeling better, go home tomorrow more IV antibiotics... Feeling still better go home... go to Kansas City see Dr Bernabe... thank you for working with PCP to keep in hospital near home....
Another Chest xray still cruddy... lung sounds not good very congested.... off work for 2 weeks...WHAT???
Where does a person's life change into the chaotic routine of chronic illness? Feel bad lets put some chaos in your life too?!
I have done some studying about this CVID, common variable immune defienciy, that does not mean that I understand it at all. But all my signs and symptoms point toward the correct diagnosis. The guys that Mark works with asked if it was like HIV! What, how could you even suggest that... but is it??? No, I have learned that HIV/AIDS is an aquired illness and CVID is something that I was born with, the inability to produce antibodies.
I have had 2 sub Q infusions of the Vivaglobin, at about a bizillion dollars an infusion...and one IV infusion of Octagam... Sounds like octomom to me.... This is what happens to other people, not me. I think that I have said that before. This is my life. Dr Bernabe assures me that I will get better and feel like "myself" again. I don't know that I even know what "myself" feels like I have felt crappy for so long.
My journey through CVID.