Hi there...boy can I relate. I lived a totally normal, HEALTHY life, until I gave birth at 32, then I was sick non-stop until I was diagnosed. It was like the cvid laid dormant and childbirth activated it. Crazy. So I didn't find out about my CVID until my daughter was 5 and was a single parent with very little help the entire time. If I was sick, I had to care for her, no help. So if it was me, knowing what I know now, here's what I personally would do:

If it was JUST CVID, once my treatment was optimal (meaning very few infections and manageable fatigue), I would not hesitate to have her again ESPECIALLY with a helpful spouse :) I personally, had to give in and hire a housekeeper to come twice a month, I have a gardener, I cook in bulk when I can on the weekends and freeze for my work week and we do NOTHING during the workweek (Jalen has gargantuan amounts of homework so she cannot participate in after school sports), we come home, eat, clean up (sometimes), feed cats clean litterbox and homework...nothing else....and we get through. I am not so exhausted on the weekends that we can't do things...you just sort of figure out a way, you know? It is DO-ABLE and so so rewarding. I did it pre-cvid dx for 5 years, then for 2 years at optimal treatment and it was not a problem...I would do it again

NOW, I also developed a very serious lung disease from my CVID...thats a little different....I still go back and forth whether I would do it again knowing I would have this terrible lung disease. High dose steroids for months, roid rage, bah :( guilt...Needless to say I will refuse all future steroids. My daughters school has to have an action plan that if her class has an outbreak of anything I have to pull her out of school until it passes, she tried to wear a mask yesterday (101 fever) but felt so crappy she just wanted to suck her thumb and took it off...I can't kiss on her, we try not to hug but its just too hard, its just the 2 of us you know? Shes sick and just wants me to hold her, so I do, she knows she is not supposed to play with her friends if they are sick because I could get sick and go to the hospital (in all reality I could die, but you don't tell a child that).....Its a little hard on her BUT its also her "normal".

I have talked to people with cvid who raised children who turned out to be perfectly wonderful, productive, happy adults...matter of fact, I don't think anyone has ever told me that because of the cvid, they wouldn't do it again. You'll be surprised how strong you are as a mom...and its easy to give the attention they need in the simplest ways :)

omg that was so long I am so sorry

Kelli, that's the kind of responses we need to hear lol! don't worry about it being long...and dancer, I don't have a lot of advice because I'm only 17. But I'm keeping an eye on this thread, because it's something that's in the back of my mind.

I completely agree, Keli don't worry about it being long. After reading your response I felt good and like it might be a possibility to be a mother for the first time since I've gotten sick. You always have such good advice/ sharing your experiences. You are a role model for all of us! Thanks you for doing what you do!!

Aww thank you :)

I see this is kind of old, but I wanted to add a here here to Kelli! I am in the same boat as Dancer. We go back and forth on the child issue. I'm 32 and feel like its now or never....

Ok wait back up, wtf am I talking about? It IS now or never. I had surgery last summer to remove 45 fibroids from my uterus so that we COULD have kids. This was the second of these surgeries I had. The surgeon wanted me to start trying to get pregnant ASAP after the surgery knowing they can grow back quickly, and as he said " the next time we go in there, its either to take a baby and the uterus, or just the uterus." (because of the 2 surgeries I have to have a c-section) But the surgery is what triggered my CVID, so we obviously never got around to trying.
Now that I'm starting to feel halfway normal, there's this monkey on our backs. Wow, I did not even know this was bothering me or going to come out till I started typing. I was really just going to thank Kelli and agree with dancer. Funny the stuff that's right there and we don't even acknowledge it.

Soooo.... I know what your feeling, but have a timer on top of it. Lol.

Gosh I swear, it is NOT documented, but us CVID women have so many female issues. Not all of us, I'm not trying to make a blanket statement. But just the fact that we needed this private subgroup, looking at the responses from our surveys that we have all done...we have some common problems. I HAD to have a hysterectomy due to such painful periods. It devastated me. In hindsight, it was probably for the best, but still. Just popped in to say how intersting LOL

Thank you Zapp..I say GO FOR IT!

Hi all.
Sorry for the late post but just thought i'd add my bit:-)
I was diagnosed with cvid when I started fertility investigations.I had been sick for years but my yearnings to be a mummy gave me the strength not to be fobbed off by by doctors anymore! I was horrified to be told to get healthy first, then worry about a baby, I really didn't care if I was sick, I just wanted to have a baby!
Hardly surprising, 2 year's later, immune health still iffy, a failed ivf cycle to my name, my world flipped a bit. I had to give up work for 4 months, then went back part time and focused on getting healthy.i joined a gym, gained 15 kilos which I really needed, and finally started feeling well.
Last month we tried another ivf cycle. I have reduced ovarian reserve so can't make many eggs. To our doctors amazement we had 2 good day 5 blastocysts for transfer last Monday. I test on Saturday. Lots of prayers! But whatever the outcome I know I managed to overcome really scrappy health and poor fertility to get better results than we could ever have wished for!
If I am pregnant I don't know how I will manage the tiredness, i just know that I WILL!!
Hope this helps:-) xxx

Omg. I can't explain how much I appreciate finding this group! It is so nice to find people who are experiencing the same things I am. I have been struggling with wanting to have a baby for the last 2 years. I was diagnosed with CVID 3 years ago and have felt like my life has been on hold ever since. I started with IVIG at that time but ended up in the hospital with meningitis, a reaction to the IVIG. I have been off the therapy since then since I am high risk for it happening again, and I feel like my life has been a roller coaster since then, getting anything and everything possible when it comes to infections. I have now started the subq therapy and am hopeful this will work and I will be healthy enough to have a baby. I have the same worries as some of you posted above, how will I ever have the energy to take care of my household, work, and take care of a baby?? My husband will help of course, but I am struggling to make it through a week of work as it is. I appreciate reading the encouragement from a mom who is doing it! Thanks kelli!

So another question for those of you who have had kids while battling CVID. Did you struggle alot during pregnancy or more so after? Just wanting someones opinion who has gone through this. I am just trying to plan ahead for the worst but hope for the best. Did you go to a special high risk pregnancy clinic?

For me, giving birth is what triggered the CVID in me. Then I got progressively worse (bronchitis, double ear infections, sinus infections all at once. One time I got strep 7 times in one year in addition to my other infections) for 5 years until I was diagnosed. From what I understand from the conferences I have been to and heard the docs speak, you don't need to seen by a high risk place, you will already be seeing an immunologist who will increase you IGG as you gain weight. Thats the only change while prego. Make sure you have a good immunologist though, that is a key to us being on optimal treatment and being given the right choices of treatment.

Hi. My CVID was also activated by childbirth. I was 41 when I had my daughter. Because of my age I went straight to IVF and got pregnant on the first try. Had a miserable pregnancy and my daughter was 6 weeks early. I blame most of my pregnancy issues on my age, though. Anyway, I'm lucky as I don't get sick that often and I do not have the fatigue that some of you have. I am a single mom too and honestly, I feel like I have more energy now. I guess you just adapt. My new normal is bedtime at 9:30-10:00. I also try to work out a few times a week and that really helps.

Anyway, best of luck to you!

I am 28 and have been struggling with this too... My partner's family just does not understand what having kids would entail for me where I have CVID... And am hypothyroid to boot, which will make pregnancy much more difficult and complicated. Thankfully, my partner is more on the "no" side for kids... I can barely muster enough energy to work and do basic life things... like clean and grocery shop. The thought of having kids terrifies me because I think I would get really depressed from the stress of it all.

Are any of you concerned about passing CVID on to your children? I could not imagine having to burden a child with this... My specialist told me I have a 50% chance of passing it on to my child. It's genetic... It would break my heart to watch a kid go through what I've been through... Brings tears to my eyes just thinking about it.