I was diagnosed when I was really young. I used to go to the hospital once a month to get IVs but now I do it at home I've been doing it Sub-Q for close to seven years and I started sticking myself four years ago. I don't think I'll ever get to stop doing it but at least when I do it I can be at home and not in a hospital. I also love it because my dad just started doing it this year 2011 and so now we use that time to bond.
@horsegirl35474 are there still support/communication type groups online anywhere? My mother, aunt (both passed away), sister & niece all had/have CVID. I am trying to get the word out to more people about CVID as it seems many people are misdiagnosed. My dr did not know what it was. The communication/support type sites I have found so far do not have any current communications
I'm 13 I was diagnosed with CVID when I was 10. My 1st treatment of IVIG was almost 3 weeks ago, but since the treatment's started 2 wear off we might have to do the infusions every 3 wks instead of every 4. The reason why I'm watching this is b cuz I've got very pour veins so when the nurses at the outpatient center aren't able to access a vein 2 start the IV anymore & since my immunologist doesn't think a portacath would be a good idea then I'll probably switch 2 sub-q=)
hey i have agammaglobulinemia ( a form of immune deficiency ) and im running off a port on my upper right chest at the moment ..but because im a firefighter and and the air packs we where are always pushing down on my port makes it really uncomfortable ...my doctor says that i should go to sub q .. for a few reasons ... my levels would be better, its less time consuming , and it wouldn't interfere with my job as much .. what did you think of it ? does it hurt ? how big are the needles ? Thanks
about 5 months after this, my immune deficiency came back. i chose to have a port put in and get IVIG every 4 weeks. like tinmanlover1994 said, how bad it hurts depends on where you put the needles - the more "extra padding," the better! the needles are only about the size of thumb tacks, so they're not too intimidating. i like IVIG better because rather than not feeling well for 3 days out of the week, it's 3 days out of the month. i think it all depends on personal preference though.
I have CVID and have chosen ivig every 3 weeks. Definitely more invasive, but I LOVE not thinking about it for 2.5 weeks in between infusions. But, my veins aren't great so I'm think about a porta-cath t make hooking up easier.
I have CVID and have chosen ivig every 3 weeks. Definitely more invasive, but I LOVE not thinking about it for 2.5 weeks in between infusions. But, my veins aren't great so I'm think about a porta-cath t make hooking up easier.
it all depin's on whir you put the needle's if i wear you do it. it is not that long at all and you don't mess school win you get it and you can do it when the school day is over so you don't mess school and this really works and it helps me alot and it is way butter thin going to the hospital and mess school for the whole day so you shod get sub-q it really is butter thin with you are doing now so do it ok
i get sub Q t wo and i use 4 niddile and i t really help's me i do my sub Q win i get home from school so that i don't mess school and it is really good two have it at home and i am happy for you that you will be done with subQ
I was diagnosed when I was really young. I used to go to the hospital once a month to get IVs but now I do it at home I've been doing it Sub-Q for close to seven years and I started sticking myself four years ago. I don't think I'll ever get to stop doing it but at least when I do it I can be at home and not in a hospital. I also love it because my dad just started doing it this year 2011 and so now we use that time to bond.
horsegirl35474 6 months ago
@horsegirl35474 are there still support/communication type groups online anywhere? My mother, aunt (both passed away), sister & niece all had/have CVID. I am trying to get the word out to more people about CVID as it seems many people are misdiagnosed. My dr did not know what it was. The communication/support type sites I have found so far do not have any current communications
MamaFox79 3 months ago
I'm preying and sending it to FB for them to prey too. God can and will heal you,so. believe it ,ok by HIS stripes we are made hole.Again
MDF12 9 months ago
i was born with no imonie sysitem and the anut abodys i have are dead so i get subq it has been almost 2 years sine i started subq in december 2008
tinmanlover1994 1 year ago
Comment removed
EinaudiRulez 1 year ago
I'm 13 I was diagnosed with CVID when I was 10. My 1st treatment of IVIG was almost 3 weeks ago, but since the treatment's started 2 wear off we might have to do the infusions every 3 wks instead of every 4. The reason why I'm watching this is b cuz I've got very pour veins so when the nurses at the outpatient center aren't able to access a vein 2 start the IV anymore & since my immunologist doesn't think a portacath would be a good idea then I'll probably switch 2 sub-q=)
EinaudiRulez 1 year ago
I have never heard of anyone ever being "cured" of CVID. I have CVID and subcutaneous or IVIG is a lifetime thing.
Stay Strong!
keeliey1 1 year ago
idk lol im pretty scared to do it lol ..... pretty sad comming from a firefighter huh ? i get my infusion every 3 weeks from a home health nurse
battlekid90 2 years ago
hey i have agammaglobulinemia ( a form of immune deficiency ) and im running off a port on my upper right chest at the moment ..but because im a firefighter and and the air packs we where are always pushing down on my port makes it really uncomfortable ...my doctor says that i should go to sub q .. for a few reasons ... my levels would be better, its less time consuming , and it wouldn't interfere with my job as much .. what did you think of it ? does it hurt ? how big are the needles ? Thanks
battlekid90 2 years ago
about 5 months after this, my immune deficiency came back. i chose to have a port put in and get IVIG every 4 weeks. like tinmanlover1994 said, how bad it hurts depends on where you put the needles - the more "extra padding," the better! the needles are only about the size of thumb tacks, so they're not too intimidating. i like IVIG better because rather than not feeling well for 3 days out of the week, it's 3 days out of the month. i think it all depends on personal preference though.
hopechangesthings 2 years ago
@battlekid90
you can put the needles in 4 parts of your body
1.the tummy
2. the place were you get a shot at the DR's
3.the pace in your leg were you get a shot at he DR's
4.below on your backside a little bit B4 booty
but the best place to do it is ware you have the most fat on your body of the 4 sopts
tinmanlover1994 1 year ago
I have CVID and have chosen ivig every 3 weeks. Definitely more invasive, but I LOVE not thinking about it for 2.5 weeks in between infusions. But, my veins aren't great so I'm think about a porta-cath t make hooking up easier.
Arlo221122 1 year ago
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I have CVID and have chosen ivig every 3 weeks. Definitely more invasive, but I LOVE not thinking about it for 2.5 weeks in between infusions. But, my veins aren't great so I'm think about a porta-cath t make hooking up easier.
Arlo221122 1 year ago
Hey does it hurt? My mom really wants me to try it but im too scared :(
JessicaandJillian 2 years ago
it all depin's on whir you put the needle's if i wear you do it. it is not that long at all and you don't mess school win you get it and you can do it when the school day is over so you don't mess school and this really works and it helps me alot and it is way butter thin going to the hospital and mess school for the whole day so you shod get sub-q it really is butter thin with you are doing now so do it ok
tinmanlover1994 2 years ago
i get sub Q t wo and i use 4 niddile and i t really help's me i do my sub Q win i get home from school so that i don't mess school and it is really good two have it at home and i am happy for you that you will be done with subQ
tinmanlover1994 2 years ago