I am newly diagnosed with an immune deficiency. My immunologist is waiting to repeat the blood work, as I just had the pneumovax challange. However she suspects strongly that I have CVID. My crisis situation came a few months ago when I nearly died from a bacterial infection from a sinus infection turning into meningitis. I was hospitalized and put on IV antibiotics for a month. Since I have had two more bad sinus infections and had courses of antibiotics. In reviewing my history, last year I had a crazy infection in my toe that went up my leg and landed me in the hospital. All of this crazy stuff started happening after having my daughter two years ago. I am scared, feel alone, nobody knows what to say to me except "Oh god, that sucks" "Can you have more kids?"
I am looking for an advice or words of support to someone who is new at this and overwhelmed.
Thank You,
Julia

Julia,
Fear not, you are now amongst others like yourself. Prior to diagnosis, which is usually so long in coming for most of us, there can be years of insane, crazy health issues and scenarios. For some of us it's amazing we survive at all. I was diagnosed with all sorts of bizarre things and endured several unnecessary surgeries during which organs were removed that accomplished nothing. I could go on, but why... I'm sure you understand by now. The exciting thing now is that you have your diagnosis. That is your first major prize, seriously. There are many more chapters to come, but now you have a fighting chance.

You should find lots of support here. We are a small group but informed and loyal. The first thing you do should be to find a great doctor, immunologist or endocrinologist. If you can, find someone who has treated other CVID patients. Depending on where you live it could be difficult, but try your best. If you are unable to find that doctor find one who is eager to help you and learn along the way. Someone who will listen to you and collaborate with you.

Try to relax for a bit now. Research as much as you can and soak it in. With your new diagnosis you are now on your way to a more hopeful future.

Hey Julia! Welcome to the group! I am 20 with CVID and have been on treatment for 6 months. It is such a tough, frustrating, and trying journey to have to walk, and I am so sorry you are having to experience it. It is very scary and overwhelming when we first get our diagnosis. But as fezzywig said, having a diagnosis is the first huge step to starting treatment and beginning to maintain your health. This is a very supportive group, yes small, but we get to know each other and everyone here is supportive and passionate when it comes to fighting this little monster. Scroll through previous discussions and familiarize yourself. We all have similar yet very different experiences with how our bodies are affected and how we manage all of this. Also, join the Immune Deficiency Foundation. They have really good tools, resources, and information to help you understand what you have. You can also request a peer support person and be matched with another immune patient with similar struggles to support you through this and give you another person to talk with. Do your best to relax. Spoil yourself for a while, and do what you need to care for your body and mind. Get your treatment started, and let us know how we can support you. Glad you found the group. Have a good night!

HI there and welcome to the group! I am so happy I stopped by the "female issues" part of our group. Hopefully you have found the main board for Common Variable Immunodeficiency. I really wanted to reply because I was actually pretty healthy my entire life....until I gave birth. Them BAM! Within 10 days my stitches were infected and I had major bronchitis. And it just got worse and worse for 5 years until I demanded they test my immune system. I started treatment within 30 days of being diagnosed.

I wanted to assure you that people with CVID have babies all the time! I also wanted to let you know, this will get better. It sounds as if your doc is right on track with the diagnosis. Treatment can take anywhere from 6 months to a year to work fully, but for most, its a game changer. I am almost 42 now, work full time, single mom, actually I have 2 jobs now LOL.

Agree with Glider to get in contact with www.primaryimmune.org as they have a ton of info and peer support. You can also get in contact with the Gammagard Patient Support Program and talk to a Patient Advocate. It doesn't matter what brand you end up on, you can utilize them. Also, www.immunedisease.com is an awesome website as well. I might suggest you introduce yourself on the main board and a ton more wonderful amazing people will be there with arms open. Its a great place to ask questions too!!

Thank You for your responses! I need to navigate this site better and figure out how to use it - totally new to this type of site! I live on Long Island about an hour outside of NYC. I believe my immun. is good, but will have to see how many patients she has treated with this condition and do research. I work full time, my husband owns a restaurant so I am like a single mother of a two year old! Thanks for you support, I will be getting familiar with the site, and get to know you all.
Best,
Julia