Hizentra Infusion for Common Variable Immunodeficiency (CVID)/Hypogammaglobulinemia
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- čas přidán 11. 09. 2024
- Instead of IVIG (Intravenous immunoglobulins), I do immunoglobulin infusions subcutaneously (SubQ), which allows me to do them at home weekly instead of at an infusion center monthly.
I get lots of questions about what’s involved in SubQ IG and how hard it is to stick needles into yourself.
This video shows the entire setup process, including an up-close shot of the needle (I use 4) and inserting them. The video ends at the beginning of the infusion, as I spend infusion time just sitting in a chair.
This was excellent! Nice work. I am an IVIG infusion nurse and only have given intravenous infusions but will start teaching patients how to do subq IVIG. This was a great introduction to accompany my online trainings. Thank you!
Thank you for taking the time and effort to make this. You were very articulate and clear, and helped alleviate our fears of this new SCIG. So grateful to you. 🙏🏼
Thank you for this
U made it look so easy
Blessings dear
Will start mine soon
So glad I found this. I just got informed that I have cvid and I needed to start at home therapy treatment. This was very informative and I'm praying this is the answer that makes me feel better finally 🙏🏻
Also are you feeling better once you have started this treatment?
@@scoopstroop85 I feel a million times better. I still get sick a lot, but it doesn't last as long or turn into anything as severe, usually. Also, my energy levels are much higher--even now at 7 months pregnant! I'm honestly terrified of the idea of ever NOT getting to do infusions now.
@@UndefiningMotherhood I'm so glad to hear your doing well! Congrats on the baby. The last 3 years for me have been brutal and after visiting numerous different doctors throughout the time and was always told your a healthy 28 year old and nothings a matter but I knew deep down inside that I'm sick and I found a immunologist who looked deeper into me and diagnosed me recently with Cvid. Its such a sigh of relief because I never thought I had a chance at feeling better again but after hearing this I'm so optimistic!
Thank you for making this video.
I’m on Gamunex for my CVID. Mine is done with my hickman over several hours. I’m also on Tylenol and Benadryl as well but I use my own Benadryl because I’m on that everyday and I can’t swallow pills without struggling. I’m on IV fluids at home due to my POTS being so severe plus I have IV Benadryl and Zofran. I still get infections as well and some are bad and some are not too bad. My biggest issues with the infections are GI infections, pneumonia, and sepsis. My last pneumonia was a few weeks ago plus I was septic. I had double pneumonia. I get pneumonia at least once per year since 2016 and sometimes up to 3 times per year. All have resulted in admissions to the hospital. I’ve had sepsis 4 times with the first being nearly fatal and a month long hospital stay. The 2nd and 3rd were early stages so it was only 5 days each in the hospital. I have to get admitted for all fevers of over 101.5. The last time I stayed home and that was this past Sunday. I had a fever of 102.4 but I’m tired of being in the hospital. IVIG has thankfully reduced the infections and hospital stays. This year I’ve only been admitted twice which is great compared to all other years from 2015 through now. 2016 I was admitted 8 times and missed Christmas and New Years due to the severe sepsis. I was in the hospital for a month. CVID has been hell and has really ravaged my lungs. I have gotten both pneumonia shots but most are not very effective due to my CVID. I have gotten all of my COVID shots and boosters and thank god I’ve not gotten COVID.
love your video thank you for making this i saved it to help me with my start of Hizentra
Glad I could help!
@@katyhuieharrison5266 Yours is by far the best teaching one on Hizentra. I send Others to your video for help
Thank you so very much!
This is the best video I’ve seen. Thank you so much for sharing! You mentioned before you start you take Tylenol, What was the other drug you take before?
Benedryl. Just to prevent any type of allergic reaction, as those can happen. My pharmacy sends it all with my infusion medicine.
@@katyhuieharrison5266 thank you!! Good to know
Katy, that was really informative! Can you please tell me the name of the infusion pump you are using? Is it the Freedom 60? Great job!
A+doctor in 🎉😊 1:54 1:55 1:55
Thank your video, I am going to start SubQ IG in the next few weeks, you answered some of my questions, Where do you get your supplies?
I've been doing SubQ for 5 years now. All the supplies come from the specialty pharmacy that ships your meds. I have the same pump as she does. Matter of fact, doing my infusion right now. It's Liquid Gold time. lol The specialty pharmacy should have a pharmacist available 24/7 to address any concerns. They have helped me with leaking issues I had after losing a bunch of weight. My pharmacy, Accredo, is very helpful and accessible. Good luck to you as you learn this process. You are not alone on this journey. There are a few FB groups specifically for patients and caregivers.
Exactly what @normahenley5834 said! I used Advanced Infusion Care as my pharmacy, which was selected by my doctor. They send everything I need each month.
I just started Hizentra infusions and found out I'm allergic to Tagaderm. Luckily I found your video prior to starting and it was very helpful in getting me prepared to start. I was wondering what cover you use instead of Tagaderm?
I told my infusion pharmacy I needed one for sensitive skin. I’m out right now so not sure what they gave me, but they did have one for people who were allergic to the traditional glues.
@@UndefiningMotherhood thank you. I'll check with them.
Thanks 🙏🙏🙏
I never got an Epi pen.
How can you afford this?
I was able to get copay assistance, and I'm fortunate to have insurance that covers the rest. Many compounding pharmacies have programs they can help you apply for.
@@katyhuieharrison5266 Copay assistance here too its worth calling and asking about it
Copay assistance from the manufacturer. I have an outrageous deductible and out-of-pocket and could not treat w/o the assistance. Ask your pharmacist or call the Immune Deficiency Foundation and tell them you need assistance. Good luck!