I feel ironmouse :(

20 years of same crap. Being harassed at school, work, family and friend events for "making it up so my mind would make me feel sick", I got diagnosed with CVID 3 months ago. I am on my 2nd infusion and this is really life changing. For the first time in my life I have gone 6 weeks without getting sick. It's incredible and for once I feel like I have a chance at life

Thanks for sharing your story! I was diagnosed about 10 years ago when I suddenly developed symptoms of colitis. It turned my entire life upside down, but subq treatments have stabilized me and I've been in remission for about 2 years. I still get my infusions weekly and though this diagnosis has stifled my academic and career aspirations, I'm still here and still moving forward. Take your health seriously, people. And be your own patient advocate.

l finally got my cvid diagnosis when I was 39. My immunologist at first doubted it despite my having multiple autoimmune diseases, nonstop digestive issues, recurrent infections, multiple vaccine failures, being deficient in all 4 IgG subclasses and a sister with cvid with IgG subclass 1 & 4 deficiency. When he finally diagnosed me, he had a good sense of humor, jokingly asking if I was about to wring his neck as I had an immunodeficiency my entire life. To make things easier from IVIG vein scarring + frequent hospitalizations for infections // surgery, I recently had a power port portacath implanted, and things have continued to get better for me.

I got diagnosed with Cvid almost by accident, had to see an allergist to have an allergy test before I had my deviated septum fixed, and as I was leaving his office he told me that there was a really rare disease that would explain the constant sinus infection and such I was having, he asked if I wanted to be tested and I said “sure, why not” and here I am a year later taking SCIG

I was diagnosed at 34, after I bled for eight hours following a wisdom to surgery and during an iron infusion, they realized that I wasn’t able to retain the iron. Through that they found out that I had the CVID but I’ve had it for my entire life. I always wondered what was wrong with me and now I understand.

Someone said I'm a hypochondriac. I was so angry

I was diagnosed with CVID a couple of years ago and I’m also on IVIG but I go to the cancer center for it because my doctor isn’t comfortable with me doing it at home. I also get IV iron when I need it and I’m actually waiting for my hematologist to put the order in for it. I can’t have it on the same day as my IVIG. I had one done on the same day and had a high fever and with me having CVID I get admitted to the hospital for all fevers of over 101.5. As a child I had a lot of sore throats with fevers of over 104 all the time plus sinus infections. The severe infections didn’t start until about late 2015 or early 2016. Due to my CVID I get pneumonia quite often. Prior to 2016 I had a walking pneumonia once and was given antibiotics from the urgent care. I was in my late 20’s or early 30’s. Then my first one after that was in February 2016 and I had double pneumonia. Spent a night in the hospital because the hospitalist said I was ok to go home even though my lungs sounded horrible. The month before I had stomach issues from nausea, vomiting, and diarrhea and went to the ER just to be sent home since my labs were clear and my cat scan showed only a couple of nodules that I needed to keep an eye on. A few hours after discharge I woke up needing to go to the bathroom and I couldn’t move. Not at all. I couldn’t even turn my head. I yelled for my husband to wake up and help me to the bathroom. He had to drag me. At 7am I still wasn’t any better so he called 911 and I was taken to a different hospital. This one was our level one trauma center and the doctor did a quick evaluation in the hallway as EMS was bringing me in. Several hours later I see a bunch of doctors and nurses coming in with the code cart. My heart rate shot up into the 160’s. I was admitted to the ICU. Apparently my K+ dropped to critical levels and obviously it happened quickly and that’s what caused the paralysis. Apparently I’m high risk for it again but so far so good. March I was admitted for routine inpatient infusions for a chronic issue I’ve been dealing with and I was going in about every 3-4 months. April through June I was doing well. Then July came and I had an appointment with my neurologist to order my inpatient infusions again. I would stay for up to a week and sometimes more if needed. My heart rate was in the 130’s and my pulse ox was 92% so she sent me to the ER because she wanted the doctor to clear me and get the ok for my infusions. It took a week to clear me. Then I was there for another week for my infusions so that was a 2 week stay. Went home for a week and ended up readmitted. My legs were terribly swollen. My vitals were fine though. By the time I got up to my room my oxygen levels dropped to 87% so I had to be put on oxygen for a bad pneumonia. That’s my second one that year. I was there for a week before going home. August through September I was able to avoid the hospital. Then in October and November I had a bad GI infection that had me in the hospital for about 1 week each. I was sure December would be a good month and it was my 40th birthday. My birthday came and went and then exactly 1 week later my now ex husband found me laying in my own throw up and called 911. I was delirious with a fever of over 105. Back to the hospital I go and I was admitted to the ICU with severe sepsis. I was hospitalized for a month and came home in mid January so I missed Christmas and New Years. I spent about 3 months of that year in the hospital. 2017 I was in the hospital for about 2 months total and I had pneumonia that year as well either once or twice. 2018 I had another severe pneumonia. Probably septic pneumonia and I was in the hospital for that one for 2 weeks and needed a bronch done as well while I was admitted. I was admitted several more times that year. Thanks to my CVID I’ve had pneumonia at least once per year since 2016 if not more. I lost count. I’ve had GI infections. Numerous ones and all ended up in the hospital almost every time. I’ve had sepsis 4 times including the first one I mentioned. The second and third were early stage and I was only in the hospital for 5 days each. My last one was a few weeks ago and I got double septic pneumonia and that one was really rough. I was in the hospital for a good week. Also ended up with a bronch and an ECHO which was abnormal and I’ve always had normal ECHOES in the past. All of this was thanks due to my CVID. This latest one should never have reached pneumonia because I was on oral antibiotics for 12 days and that failed so I saw my pulmonologist who started me on IV Rocephin and Decadron (an IV steroid). That failed so they switched me to another IV antibiotic which also failed and I had to go to the ER after 3 doses out of 5 due to breathing issues. I had pneumonia. Double septic pneumonia. I’ve had all of my pneumonia shots but due to CVID they don’t work on me except for a few strains. It’s been absolutely awful!

I was just diagnosed yesterday. I have seen so many doctors of all specialties since the 90s and had so much bloodwork done, and although I did find major answers to some things, this piece of me still didn't make sense. In an attempt to find a silver lining- I was diagnosed with severe anemia last year that is not responding to any types of treatment (🤞hopefully it turns out to be nothing too crazy lol 🙏) and because of that I got to see my amazing doctor who took a chance and bingo! CVID. Knowing that this woman struggled with health issues her whole life and feels tons better now, gives me so much hope! I'm due to start treatment next week 😊

First they told me I was getting immunoglobines..than they text me no !!! I'm dying

It's so scary

My brother died before his 1st birthay I have this

What is CVID (common variable immune deficiency) !? ... scary...

I think I'm in hell 17 diagnoses every one of them I need globulines..I don't get them grtz belgium