You can easily use IVIG while pregnant, lots of women do it :) Your doc just needs to remember to up the dose as you gain weight. Your hubby on the other hand? I have no advice :( Its hard, normals just do not get it, seriously.

> Sorry for so long, I was wondering if anyone else has been
> pregnant with CVID or had family in denial. Any help will be
> very appreciated!

I can't be of much help other than to be a "random internet guy who can empathize" with your situation.

(I'm a guy, and my family is very supportive -- in fact, I would say, almost ecstatic that we found the problem and are treating it. After my first IVIG injection 2 weeks ago, I've already felt better than I have in years -- my cough has disappeared, my sinuses are clear, I can smell stuff, etc.)

I'm sure that things will work out for you. You'll be on the path to sorting this out before you know it.


> My hubby said he'll either pay for an abortion or to get
> me started on my treatments, then I'll have to get a job.

The concept of "being able to pay for treatment" comes up on this board so often that it's really saddening to hear. I just ... when I think about the people on this board, the number of posts that I see about insurance, and the politics surrounding US healthcare, I don't even know what to say ...


> We have a 3 yr old in the home to care for too. I don't
> handle stress well and to think of giving up the chance of
> treatment is too overwhelming.

With 3 kids, I imagine that you're a strong person, and you'll get through this.

Whenever my wife and I have something really important to talk about that the other just "isn't getting", we tell each other about how important it is. My wife will say something like: "This is 10/10 on the importance scale", and when I reflect on it, I realize that maybe I hadn't seen it as being so important (maybe I thought it was only 2/10 important), and this usually forces me to reevaluate what that means to her.

On the topic of health, my wife & I both have immune system issues (different problems entirely, though). And we both acknowledge that treating our problems leads to better happiness as a couple, as well as better happiness (and dignity) as individuals.

(Beyond the basic "heart-to-heart talk", counseling is always an option...)

DUH! Gosh I'm so sorry...my brain doesn't work after being at work for 9 hours...Ok here are some resources. First call www.primaryimmune.org THEY CAN HELP I swear...they will give you some ideas. The other is to contact https://www.patientservicesinc.org/ they also provide payment assistance.. Thats all I see so far but will update if I find more.

I know this might not be popular opinion, but please don't have an abortion. I know it seems hard to deal with all of this, but just think positive thoughts. There have been tons of pregnant women with CVID, including you! You've already been pregnant five other times, and you've proved you can handle it. You can definitely use IVIG while pregnant, too.
Your hubby is in denial, but you're not alone! I've got a whole family in denial about so many of my health concerns, related to CVID and unrelated. I've found that the only way to get through to them is to sit them down and really tell them what it's like, what struggles you're going through, right from the heart. Sometimes you have to do it more than once, but eventually they realize that your hardships are way more than they can even begin to imagine. Then, when they're in their right mind, you can sort things out together.

Also, Kelli is right, go to primaryimmune.org. So many great resources!

You can do it! And we're all on your side. *hugs*

Thanks to everyone who replied. I took everyone's advice to heart, checked out resources, and called all of my drs. I did get my first treatment last week and approved for financial assistance.
My husband realized I wasn't just jabbering nonsense when the nurse came for the infusion.
But I decided to not go through with the pregnancy after all, owing child support (my two oldest children don't live with me), medical bills, and looking into the eyes of my two year old, knowing that she needs me every day, I coudn't take the chance of being sick more than neccessary. It was not a decision I'm proud of.
I really appreciate everyone's replies and support, thanks for understanding.

Alinae - Any decision you would have made would have been the right one. But after reading your story, I, personally, would have opted for the termination. After I had my second child, and when she was about 4 or 5 is when I was diagnosed with CVIDS. I had a wonderful life. A beautiful home, A husband with a good job that wanted me to stay at home and raise our children. Which I did. I need not want for anything. Excellent health insurance. Well when I got CVIDS, EVERYTHING changed, husband could not understand my energy changes (him being very "type A") very athlectic, etc. He was in denial also, couldn't understand why I was sick and tired all the time, in fact he would get angry if we were on vacation and I would get a raging throat or ear infection. Some people that never get sick dont have compassion, they "lack" a compassion or caring gene, I swear. It sounds like you really have your hands full, and ANYBODY would be under stress. Don't expect him to change, the husband, I mean. Anyways, long story short, my husband ended up divorcing me, leaving me without a job or any health insurance, he took the kids because I basically had a nervous breakdown and did not want my children to SUFFER living with a mother with no source of income and no health insurance to receive my IVIG to keep me healthy long enough to keep a job. And yep, he remarried a HEALTHY successful woman with no children, soooooooo.......take care of YOURSELF and the children you have now, and enjoy EVERY PRECIOUS moment with them. You need to TAKE CARE OF YOURSELF FIRST so you CAN BE THERE FOR YOUR 3 YEAR OLD. Don't feel sad about your choice I have lots of friends and know lots of people (my sister included) that have made the choice to terminate. They knew it was the wisest choice for them and their lives. Remember there is no magic husband fairy that is all of a sudden going to make your husband change. I wish for you to get your IVIG and to be a wonderful mother to your children, they will always love you before a man, eheh, I'm man bashing now. Oh yeah, I would also ask your gyno to give you an IUD so you don't have to go through this again. I can only hope that my saying this doesn't offend you or anybody. My sister happens to deal with women all the time in these stressful situations and my best friend is a labor and delivery nurse, basically women helping women and supporting them, and I know for a fact they would have agreed with your decision.

It really breaks my heart, but you have to believe that you made the best choice for YOU. It would be easy for any one of us to say keep the baby, when we aren't the ones in your shoes, with your stresses, degrees of ilness and energy, and an unsupportive spouse. I also have a husband who thought my CVID was a ficticious diagnosis. Long story short, once he has been with me to a few procedures, and he sees how bad my bad days really get, he's softened some over the past year. I think he's beginning to realize I complain much less than I have a right to.

Again, you made the best choice for you and your family. Have your husband go with you to a few appointments and infusions, have him ask questions of his own. Sometimes, we here have found that much of the 'anger response' we get from family is related to how helpless they feel, that they can do nothing to change our health back to what they want it to be.
We are here for you-your 'inside family & friends'-being that we are on the inside of a very cruel joke, so to speak. We get each other. Vent, scream, cry, rage away-we will be here for you!
Shoshi

Hi Alinae,
Thank you for sharing your post with us as I cannot imagine what you're going through regarding your pregnancy. However, I can sympathize with the unsupportive spouse that just doesn't get it. I've been there. The main thing is that you are on the right path now that you have a definitive diagnosis and I am certain once your treatment begins you will slowly begin to become stronger physically and that will help with your mental stress. I have had a diagnosis for 3 years and started my treatment 14 months ago. There were many ups and downs and slow progress but 6 months into the treatment with Hizentra Subq I began to feel better than I ever have in my life. My life has returned to a more 'normal' life than I've ever had. Best of luck to you and know that anytime you '
just can't handle much more' this group will be here to support you. The people here are wonderful with lots of great information and extremely kind and generous. So reach out anytime you need. Best of luck and hang in there!

Just checking in to see how you are doing.