Sounds like you already have a good head on your shoulders and do not easily give up!! Don't give up, keep going to college and get your degree. I just started using Hyquvia at home in July. After the ramp up period you only do it 1 x per month in the privacy of your own home:) you don't have to worry about telling anyone or driving to a hospital to get your infusion. It's scary to think of it as life long. I'm struggling with that thought everyday too but if it helps you to feel better and live normally isn't it worth the 1x per month infusion? Ps..,I haven't had any side effects. I hope that gives you some hope for your own positive experience. All I do is hydrate really well before, during and after. You got this!! You can do it!! It's treatable!

Welcome nht30,
You have a lot going on right now- feeling ill, dealing with a new diagnosis with life-long implications and the confusion of treatment options. My son Jeff is 16 and was just diagnosed with CVID in April. He also has an auto-immune disorder, Evan's Syndrome. He started on Hizentra infusions until he turned 16 in June then switched to Hyqvia. Hyqvia isn't approved for use until 16 yrs old. He finished the ramping up period 9/3/15 so he is now on monthly infusions. He just said to me the other day"This won't be too hard to do at college." I think that has been a big worry for him as a HS junior- How will I handle this at college? Will everyone have to know? He hasn't learned to do the infusions yet- that's next on our list. That was a luxury we had that I realize you do not- he could deal with the emotional side while I did the infusions. We talk about college a lot- he could go to college close enough to home to come home to do the infusions monthly. He could do them in the college infirmary. He can do them in his dorm room. There are many kids in college with health issues that require treatment- diabetics, kids with cancer, etc. Although not easy to be dealing with all this new information, try to look on the positive side: once you get regulated on antibody infusions, you will probably begin to feel better than you have in a LONG time. The monthly infusion will become routine and you will feel so much better!! I think it will be important to include 1 or 2 people that you feel close to in the dorms- let them know about your condition and I'm sure they will be there to support you. I have found that the infusion company that taught me and my son Jeff were very thorough and I felt competent in the procedure very quickly. Depending on how and where you start your treatments, use the support of friends at college and/or the infirmary staff. As overwhelming as it seems, you will learn very quickly and become independent very quickly also. Your improving health will make it all worthwhile. Good luck and keep in touch on how you are doing.

Hi nht30,

You've come through lot to get to this point of diagnosis and treatment, but know that the treatment can help turn it around. It can help you to feel better physically and that can help everything to improve.

I've only had a few IVIG infusions and although I had some side effects, they were manageable - I've had far worse times managing being sick. We learned to keep the infusion slow, so by my last infusion, the side effects were much less. People often take pre-meds (benedryl and tylenol) to help manage the side effects, and I found them helpful. Also, hydrating helps, before, during and after. The infusion made me very tired (perhaps the benedryl too) so after, it was a pretty quiet day, and twice that went into the next day. Overall, I'm relieved to have found something that helps me to be healthier.

Some folks find the subcutaneous Ig easier to manage because it more commonly has less side effects. I haven't tried them yet but should be starting Hyqvia soon and am looking forward to seeing what it will be like. I gave my kitty subqs for many years because of kidney disease, and although not literally the same, I figure I should be able to manage this if she put up with me poking her with needles twice a week for all that time! :)

You will be able to manage this. As you become more familiar with it, it won't seem as daunting. When I was researching the treatments, I found this video of a person showing the subqs and that helped me to understand it a little more:
https://www.youtube.com/watch?v=K4JSng7iIBw

Good luck and hang in!

Hi, I'ved been really sick for about 8 years! I had a fungus in my upper right lung and Bronciactasis in the upper right Bronchial tube so a couple of years ago I had to have lung surgery where they removed my upper right lung and Bronchial tube. So finally a year later since I did get any better, my Pulmonologist suggested that I see an Immunologist. I went to the immunologist they did some blood test and found I had CVID, so I've been on SubQ Gammaguard Infusions every week, my side effects from the infusions are headaches, some times fever, and allergic reactions on the needle sites where I get really bad webs and they are really red swollen and very swollen, but I feel like if that going to help me then all of that is worth it. I've been on the subQ for about a year and a half, but my last blood work showed that my immune system is very weak and it also showed that the white cell was very high...the doc said that I continue to have infection in the body...So I really don't know if the infusions are helping me any!!! I'm going to the doctor in December to find out what's next...I hope my message gives you so insight on the infusions, I have heard that the monthly IVIG infusions are more aggressive!! Good luck and God bless!!

Have you ever discussed a dose increase with your doctor?