COMMON VARIABLE IMMUNE DEFICIENCY (CVID) | My Dad's Experience with CVID & IVIG
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- Опубликовано: 26 июл 2024
- I'm excited to have my dad on my channel to talk about his experience living with CVID (Hypogammaglobulinemia). He explains how he got diagnosed, his current treatment, and we show some of his bloodwork before and after IVIG therapy. Do any of you have CVID or know someone who has CVID?
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My name is Samantha Wayne and I have been creating advocacy videos on RUclips since 2009. I created Live Hope Lupus in order to create a space where those with chronic illnesses could get information and support. Please subscribe to follow me along on this journey!
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Thanks for the video. I have CVID and am on 50 grams of Gamagard every three weeks. This is my twentieth year receiving IVIG. I am 77 years old and the therapy has changed my life. Good to see you getting the word out. I hope you are active in the IDF community. Keep up the positive attitude
I have Lupus and CVID. After two sinus surgeries, lots of ear infections, chronic bronchitis, and bladder infections my doctor sent me to immunologist who diagnosed me. Been on IVIG for the past 6 years. Thank you for this video!!! I’m 61 and feel like I’m the only one with all this sometimes! Thank you for sharing! God bless!
My 33 yr old daughter has recently been diagnosed and we are on the road finding the right dr and getting the meds. What a testimony from your dad. Thanks for that.
Omg this is literally my exact story. I got ear infections all the time when I was young, constantly on antibiotics. Eventually I got allergy tested and blood work done, where they found saw I had low levels across the board especially in IgG. Told me I had CVID and started getting IVIG treatments once a month ever since. It’s been eight years and I live the most normal life with zero post treatment symptoms.
Evan Carlson Hi! I had chronic suppurative otitis media since I was a baby. It’s still going now. I also have chronic lung problem (bronchiectasis) for five years. I would love to check the level of my immunoglobulins but it’s not easy here in Indonesia. Glad that you feel better after the IVUG treatment.
Made Pramana I hope you find a way to do so!
I have CVID - was born with it - but got very sick when I was 28. Didn't get a proper diagnosis til I was in my late 30's. Doing better now on treatment but still take daily antibiotics and my IGG weekly. Also have permanent lung damage from so many pneumonias. Your dad is an amazing guy - i'm glad he finally got a diagnosis. Check out the IDF if you haven't - the Immune Deficiency Foundation - lots of great resources there.
I have Lupus and CVID. I just started IVIG two weeks ago. I can totally relate to your dad and the chronic Pneumonia’s. I am so happy he has finally started IVIG infusions. I hope he continues to do well.
Same 2 diagnoses. I had bad luck with my one IVIG treatment, so I switched to weekly subcutaneous infusions at home, which works perfectly for me. Stay well! (I resisted treatment other than antibiotics for 6--8 years, not realizing how serious CVID could be, and because of the copayment cost.I shouldn't have waited quite so long)
Thanks for this. I'm 56 and I've just been diagnosed with CVID. Your story sounds very familiar - colds ,sinus problems and generally being sick for years and years.. I have a hospital appointment with an Immunologist tomorrow so hopefully all goes well..Its nice to hear that things can get better!!
Your dad looks AMAZING considering how his levels were... I rewatched this bit and paused it twice cause I did a double take..... 😁😍
So I have lupus and watch your channel I also have cvid! So this was really cool to watch! Thank you
Nicole Norton I knew that some of my viewers had CVID so I thought it’d be helpful. I did see a stat that 25% of those with CVID have an autoimmune disease as well. Can’t imagine how it is living with both.
Nicole Norton I have lupus with CVID as well. It's terrible. What treatments are you doing? Ty
I do IVIG infusion every 3 weeks for the CVID, and prednisone and Benlysta for Lupus.
I was diagnosed in November 14 ,2016 with CVID started infusions in January of 2017 I started off 1 treatment a week but that was lived shortly after I was still staying sick and my numbers were still in the low 400 so in March 2017 we started strong med and now been doing the treatments2 x a week for almost 2 years my life has completely changed I never knew how sick I really am
Stacey Simpkins that is great that you had a turn around. For my dad we realized he was sick all the time! It was amazing to see him progress.
I also have CVID and autoimmune disease
Allergies 🙄eye roll? Girl you need to be put in a hair commercial. This is a great video, patient education. Hope it tips somebody’s ear and think to ask their doctors. He looks like a wonderful father and person, all the best to him.
Thank you both for this video, you seem to have a lovely relationship too. This was really interesting and informative - I have Crohn's D and work in an immunology lab. I'm assuming there's a hereditary link between Lupus and CVID(?)
J Kally not that I know of! Something worth looking into.
CVID can lead to various autoimmune disorders. They initially thought my problems were autoimmune, dozens of tests and doctors came back without answers. What finally tipped them off to an immunodeficiency for me was that my Covid vaccines did not make antibodies for immunity, then we tested a bunch of other vaccines, and I did not make antibodies.
Lingering infections in immunodeficient people can travel from the bloodstream into our tissues like our joints. This causes a lot of symptoms that would look like an autoimmune disorder, which are far more common than CVID. My main complaints have been GI issues, joint pain, and severe fatigue. But testing for every autoimmune disease came back inconclusive, but the testing did show some things wrong with my immune system, like I am ANA positive, and have very high inflammation, but it never pointed to a rheumatological disorder.
The immune system dtysfunctioning itself can also lead to autoimmune diseases and people with CVID are also at higher risk of blood cancers like lymphoma and multiple myeloma.
I finally got diagnosed with this at 37. I already have lung damage from pneumonia and bronchitis, no tonsils, multiple sinus surgeries from chronic sinus infections, arthritis, widespread inflammation, and a pre-cancerous hematological disorder. So, it's already done a lot of damage. All I can get are antibiotics, but vaccines don't work well, and I keep getting viral infections. I hate how slow getting treatment is, even once you're finally diagnosed. Almost a year now, and we're still testing different vaccines to see if they make antibodies. I can't wait to actually start treatment. My doctor says it'll likely be sub-cutaneous IG that I can do at home. I am happy that the IVIG helps your dad, hopefully it'll be worth the wait for me.
Since it's genetic, Sam, do you think it is possibly the underlying cause of your lupus?
Great advice from your lovely Dad. Your a lucky girl to have him in your life.
I agree with natural. I've said often I'm vegetarian, don't smoke, drink, eat processed food or any drinks like Cola, fizzy drinks, diluting juice. I never have, I never liked them. I drink water, one maybe 2 black coffees a day. Thinking positively, trying to do, is again great advice from your Dad. As autoimmune diseases can cause depression, osteoporosis, gastrointestinal, plus many other problems, remaining positive, or as I say, determined definitely helps.
All good advice and thank your Dad so much for being willing to bear his soul to others. It's not easy. I personally prefer not to make my SLE known. I've been in Hospital as SLE attacked my lungs caused pneumonia, pleurisy, infection, ?TB. I was determined to do everything to improve, I do think it helps. It's also good to try to recognise your symptoms as it can save your illness from lingering on. I know I've pneumonia before I get the x-ray. I knew my lungs felt funny recently. I had Thrush in my lungs! I had never heard of that. I was aware babies can have Thrush on their tongue, so was astounded! Treatment and it cleared, though I try to avoid antibiotics, you don't always have a choice! Doesn't matter which autoimmune disease you have, be aware of change and act on it, don't let it rule you. Watch out and get it before you end up poorly.
Janet Rodgers very great advice from you as well! My dad is really a great guy, he’s always happy and positive. I’m sure no one realizes he lives with a condition like this. Glad you’re in tune with your body!
I've had CVID for 34 years. Switched to sub-q 20 years ago. Much easier with lower risk of severe reactions. Also no need for additional meds or steroids..
I will be so glad when they figure out what I have. Your dad is really lucky at least he knows and can get treatment. I'm seeing a reumatologist next week. I can't wait. Hopefully I will find out what's going on.
I was diagnosed with Lupus last year 2017 still undergoing more tests, I've had several infections with antibiotics, thank you for the information I'll be sure to discuss with my doctor
Lillian Z Ybarra I’m glad you found this video helpful. Hope you find the answers you are looking for soon.
I have civd to
I have CVID too just diagnosed in April the infusions make me nauseous and have headaches violent vomiting facial swelling and petechiae. I’ve had 3 infusions so far Gamunex-c
I have the ivig every 4 weeks, it has helped so much, I was getting sick all the time and antibiotics didn't help
I was also diagnoised with no IGG after years of sinus infections and 2 pneumonias that almost killed me. I do the subcutaneous IV every 2 weeks myself and have been for 5 yrs and also doing better. I have changed from Gamma Guard to Cuvitru that is made by same company but it is formulated thicker and infusion takes less time. I also have autoimmune issues . Don't know if that goes with auto immune issues. We have to keep a positive outlook on life
sue maynor I did read a stat that 25% of those with CVID will develop an autoimmune disease as well. Thank you for sharing!
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What was his number on the ugh before treatment. Mine is at 478 currently.
I meant IGG
@@loridean8936 IGG was 83 originally
Thanks Ann. My reference range is. 700-1600. So if his was 83, he was seriously low.. I was diagnosed a year ago finally, I was constantly sick.
@@loridean8936 do they treat you with antibiotics? It's a miracle he lived this long with that number, he had some serious illnesses!
@@wayneus3 I am constantly on antibiotics it seems. They want me to do the ivig, but it would cost me $500. Per month, and currently living on social security disability, so the cost is to high for me right now. Once I turn 65 in 7 yrs I can get supplemental insurance to help. I just have to stay alive till then. Lol
Are you getting the vaccine for COVID-19?