My Journey with CVID
ฝัง
- เผยแพร่เมื่อ 28 ก.ค. 2022
- Liz is sharing a bit of her health story - what led to a diagnosis, and what it's been like over the last decade of living with an immune deficiency disease called Common Variable Immunodeficiency (CVID).
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I found your channel by searching CVID. Thank you for putting this out there! Sick most of my life although energy level was like the Energizer Bunny. Until it wasn't. Diagnosed at age 58. SCIG weekly since March 2019 and no infections! Energy level is now my main thing. I'm subscribing and looking forward to more videos about your journey.
Thank you for sharing your journey with cvid, I m newly diagnosed and found this helpful.
I also have CVID and was diagnosed about 1.5 years ago. I had a lot of the same issues you had ever since I was a kid (I'm 38 now) . The part where you talk about worrying about every little ache and pain is something I really relate to. I'm still struggling with this, but I'm getting better. I had a lymph node biopsy because it was enlarged and it came back benign. But I still think about what else is going on inside of me. I'll get through it eventually. I appreciate your story and for sharing it. It really helps me a lot to hear other people's journeys. Take care.
Good video. I was diagnosed recently. Thank you.
I'm diagnosed with CVID just last Wednesday and the last couple of days have been a rollercoaster of emotions. Anxiety, peace, not accepting, hopeful. Seeing this vlog really made me calm in a very anxious moment. Thank you for being so open and giving me some sort of hope and peace, knowing the road ahead is unknown but it does can get better. I only have had mild symptoms besides severe sinusitis and they discovered my low IgG and IgM by chance during the sinus operation. The fear of getting all the other scary stuff a CVID patient is more likely to get scares me, but like I said: your vlog really made me a lot calmer. Thanks again!
I was also diagnosing by an allergist! I’ve been treated for allergies and sinusitis for 60 years! Allergy testing was absolutely normal! I was so shocked with this diagnosis I didn’t even know what questions to ask! Fatigue has been a lifelong problem as well. I’m waiting for prior approval from Medicare to get started on SQIG weekly. I’ve found your story inspiring. I know God is in control ❤️
I hope you've started your treatment and having a great experience with it! SCIG for 5 years. Prophylactic antibiotics and allergy meds and I've not had an infection in over 5 years!
You are such a beautiful person, inside and out. I love how you use your experiences to bless others, thank you. I do believe God will continue to bless you in return.
🥹Thank you so much! ❤️❤️❤️
My daughter was diagnosed at age 25. The treatment made her feel worse. She stopped treatment almost 2 years ago and isn't really doing well. Lung problems, swollen lymphomas, gastro problems, edema. Can't get her to go back on treatment. I hope you are still doing well. She did the what u r doing with the treatment in the legs to iv to having a port put in. She is to have treatment every 3 weeks. Sorry for the rambling.
Thank you for your testimony. God has brought me so far with so many crazy things. We do have to trust him. I always say nothing is going to happen to us that doesn’t pass through his hands. Bless you for your walk.
I enjoyed watching your video, God bless you, everything is happening for a reason. I got diagnosed with Cvid 2018 after still birt, limph node surgery, constantly having allergies and pneumonia . Everything you mention. No one in my family had any genetic disorders. I would like you to talk more about treatment, insurance, work issues and everything that affect your life as zebra 🦓. Thank you and stay strong. I'm in the process of finding insurance so they can Hook me up on meds each month
My daughter was just diagnosed with CVID, thank you for sharing.
It took 4 decades to get diagnosed. Constant sinus infections for decades. Finally allergy shots did not work & resulted in immunology testing. My levels increased 800 points with the first infusion. Really has changed my life.
Thanks for sharing! You have a great outlook and message about your faith. So glad that you are in a good place!
Thank you, Kathy! ❤️❤️❤️
I just got diagnosed last year and did my first subcutaneous IG treatment this week. I'm excited to have something that explains why I'm always sick, but worried that I won't always have access to these expensive treatments. The doctors, in general, haven't understood, because my numbers are close to normal. I got diagnosed from failing my vaccine pushes, and the number of infections I get. It's just worrying half of the doctors I see think it is nothing, even though it explains all of my symptoms. I already have monoclonal gammopathy and lung damage that I think are related to being 37 before the CVID was diagnosed.
Edit: I'm also suspicious my mom
has it, since it's usually genetic. She had the same thing happen with lymphnodes in her neck, and they biopsied the wrong tissue.
My brother is suffering cvid and diagnos 2008. Doctor are advised ivig injection monthly life time
This is exactly my story but my thing is recurrent pneumonia. I am not officially diagnosed yet but I see an immunologist in a few weeks. IGG, IGA and IGM are almost nothing. Thank you for sharing your story!
So beautiful, inspiring, hopeful and encouraging!! May God continue to bless you and your family. I know this took a lot of courage to do this…👏🏻👏🏻👏🏻👏🏻🤗.
Thank you so much!❤️❤️❤️
Thank you for sharing your story! You are such a strong person! It's been a tough week, and I needed to hear somthing like this and be reminded that God is in the details.
Thank you, and I am SO glad to hear this helped you when you needed it! I hope this week is better❤️🙏🏻
first tine i found out that i have cvid i laughed and said well that explains all the illnesses
Thank you so much for sharing. I have been going to my doctor and 4 different specialists for over 2 years now. Nobody can figure it out. I have yet another specialist appointment next month and I am going to bring this up as a possibility. Were your IgG subclasses levels low when you got your blood work done? Mine are all low and I have re-occurring sore throat, swollen glands etc but no one seems to be doing anything about it except they keep on giving me antibiotics. It has been so frustrating.
Have they considered giving you IVIG infusions. That is the normal protocol for individual with CVID. My son has been receiving them since he has been 10 every 3 weeks. He also has no strep or pneumonia titers.
The next thing they did for me was called "vaccine pushes". They give a certain vaccine like, tetanus and pneumonia vaccines are commonly used, and test if you actually make enough antibodies for immunity. I failed those tests which is what the insurance was looking for to cover immunoglobulin therapy.
I still have to take antibiotics because the immunoglobulin won't quite treat active infections. My immunologist/allergist said I should get my infections cultured to use more targeted antibiotics.
There are hundreds of types of immunodeficiencies too. Sometimes your numbers are
low, sometimes they're closer
to normal, but the cells themselves are flawed. You should get further tests, it takes a long time though.
I'm so glad to hear you are doing well! What kind of doctor would one go to to get tested for CVID? I know you said it was your allergist, but is there another specialist that someone would normally go see?
Thank you! I would just ask your primary care dr to run bloodwork and check your levels. And if they’re low, you could mention CVID and see what your dr says? Maybe he/she would then refer you to an immunologist. ❤️
Immunologists would know the most about it, allergists are more common. I also see a hematologist, and he knows a bit about it. It's fairly rare, like 1-25k to 1 in 50k people. So, even the doctors that treat immune diseases, when I bring it up, they haven't usually heard of it beyond the immunoglobulin count. I also have to mention that I don't tend to make antibodies to vaccines. That helps them understand a bit better. Sometimes with rare diseases, we know a bit more than our specialists, because maybe they have never seen a patient with it.
May the Lord continue to bless you🙏🏻. Thank you for your honesty. You are right, when we first hear the words about a chronic disease, the unknown fear can be the worst….you have helped many people today…Blessings to you today😘
Thank you, friend! I hope so❤️🙏🏻😘
ia m diagnosed since 2008 sarted with privigen where I was once allergic to because of a charge .Am now with kriovic...; plus because I va got Asthma/copd mix a new medicament which goes subkutan called xolair.
right not the half of normal doctors knows what it is you say i ve got cvid..; oh you re positive with covid the answer🙄
Tears. Thank you. 🤍 I started IVIg last month and you have made me feel less alone in this and given me so much hope. Again, thank you.