Common Variable Immunodeficiency Support Group
Common variable immunodeficiency (CVID) is a group of 20-30 primary immunodeficiencies (PIDs) which have a common set of symptoms but with different underlying causes. CVID's underlying causes are different, but the result of these are that the body doesn't produce sufficient antibodies in response to exposure to pathogens.
Had my infusion on Friday and while it started off rocky, it appears I am having fewer reactions this time.
My dh mixed the gammagard sd so it had plenty of time to dissolve before the nurse arrived. We were suppose to use the infusion pump that was delivered last week but it was broken. It kept saying the pressure was too high for no apparent reason. It took two sticks to get the IV started but then things went well. The nurse backed off on the rate at my first complaint of a headache and asked often how I felt. The infusion took 8 hrs from needle in to needle out. I have taken tylenol and benedryl all day saturday and this morning and have not had even a headache until this evening and it is very mild.
My dh fixed the pump after playing with it for about 15 mins. A part had gotten stuck. We are going to use it next time. My nurse still claims she is able to eyeball the drip rate accurately but she can not.
My sons (7 and almost 10) came in half way through the infusion and watched as she took the IV out. They are excited that the next infusion will be while they are home from school. They want to see the whole process. They seem to be more at peace with the idea as they see the process. I think it somehow helps them with the fear to know what is happening rather than wonder about it.
I did have one question. My nurse will be out of town the day my next infusion is scheduled and I am gone the week before so she has asked to put it off one week. How do you handle those situations?
My dh mixed the gammagard sd so it had plenty of time to dissolve before the nurse arrived. We were suppose to use the infusion pump that was delivered last week but it was broken. It kept saying the pressure was too high for no apparent reason. It took two sticks to get the IV started but then things went well. The nurse backed off on the rate at my first complaint of a headache and asked often how I felt. The infusion took 8 hrs from needle in to needle out. I have taken tylenol and benedryl all day saturday and this morning and have not had even a headache until this evening and it is very mild.
My dh fixed the pump after playing with it for about 15 mins. A part had gotten stuck. We are going to use it next time. My nurse still claims she is able to eyeball the drip rate accurately but she can not.
My sons (7 and almost 10) came in half way through the infusion and watched as she took the IV out. They are excited that the next infusion will be while they are home from school. They want to see the whole process. They seem to be more at peace with the idea as they see the process. I think it somehow helps them with the fear to know what is happening rather than wonder about it.
I did have one question. My nurse will be out of town the day my next infusion is scheduled and I am gone the week before so she has asked to put it off one week. How do you handle those situations?
I can't tell my kids that I have CVID. My daughter has OCD (fear of germs/contamination) and by God's ironic grace, I'm the one who can't handle the germs. Thankfully she is otherwise very healthy, but the thought of me having issues with my immune system would freak her out. Glad your kids are supportive! I'd love to do home infusions someday, but can't unless I can get my infusions faster so I can do it while kids are in school. GOOD LUCK!