new to CVID

[liverbird]

I'm 31 years old and just found out this past week I have CVID.

I've had a sensitive stomach (IBS) most my life and I get sick a couple times a year but aside from that I've been pretty healthy and have had no serious infections. The only thing I'm sure to get yearly is an ear infection. But for the most part I feel like I'm healthier and active than most friends my age.

I was doing a routine check-up with my primary and we did some bloodwork. We noticed my globulin levels were low so he had me do some more tests on this. After those results came in he referred me to an Asthma/Allergy/Immunology specialist. The specialist had me do all sorts of blood tests for my gamma globulins, IG's, IGG subclasses. They all showed my IGG, IGA, and IGM levels were really low or not detectable but my white blood cell count was fine.
So the A/A/I specialist thought if I'm so healthy despite these low antibody levels maybe I'm producing them but just losing them in my gut. So then I went to see a GI specialist for a colonoscopy and upper GI endoscopy to check for any type of inflammations or celiac. After all this and also a capsule endoscopy nothing was found that would indicate I'm losing my antibodies through my gut.
I got HiB and Pneumovax vaccines and even then I showed no response to this in follow up tests. Finally we had my blood drawn and sent to Mayo Clinic for analysis of B cells. Their results showed everything is consistent with a diagnosis of CVID.

At this point it looks like I'm going to need IVIG and to constantly do all kinds of testing to check my lungs, chest, spleen, thyroid, check for cancers and autoimmune disorders. All of this is so overwhelming to me I'm still in a state of shock and can't seem to grasp it all. It's just so strange to me how I've been well for so long and suddenly have to have this treatment path that seems so intensive to me... I'll read through these forums and look for positives from others' experiences with this.

[s162216]

Hi and welcome to the forum,

Whilst this may all come as a shock, and something that seems so complex with so many questions that you want to ask, don't worry as we are all here to try to help you out. A lot of people have your reaction of sheer amazement when they find out, likely because of how CVID is fairly rare and something they've never heard of (or have most doctors for that matter!)

The typical diagnosis of CVID comes after someone has a lot of infections that they can't shake etc, but some people (me included) just seem fine with perhaps a few more infections than usual and are shocked when their told they need IVIG. Its much better to find out sooner than later though as unfortunately a lot of people have a habit of going suddenly downhill and the IVIG is there to help limit or stop this happening - the decision to prescribe IVIG infusions is not taken lightly as immunoglobulin is a limited resource (it being from blood plasma) and the cost is extremely high so the doctor has to really consider the facts. IVIG is not bad though and even if you don't think at the moment you'll see any benefit from it trust me you'll probably feel a bit 'different' after a few months on it (the effect is difficult to describe if like me you didn't feel like you were unwell before).

You might want to take a look at our 'CVID Quick Information Sheet' in the PID Information Bank if you've not already seen it (link to it here: www.primaryimmuno.proboards.com/index.cgi?board=pidinfo&action=display&thread=559 ) as that should help answer some basic questions you might have. If you have anything that your worried or concerned about, or just want to ask something then we are all here to help!

Sam

[mali42]

Hi
I had virtually had zero igg iga igm at age 44, the last 2 years was horrible with constant infections only to be eased by antibiotics resulting in minor lung scarring which could have been avoided if they discovered my condition earlier.

At the age of 31 I felt as you do now that i was mainly ok with always being on the go, doing a full time job with overtime three kids wanting attention, i would have been horrified at the thought of having infusions, it does take a while to get your head around the situation but you will get there.

I have been infection free this year and feel good most of the time apart from slight fatigue so I'm doing well.

Ask any question someone should know the answer.

Malcolm

[liverbird]

Thank you Sam and Malcolm, I appreciate the replies. I spent last night going through majority of the forum. It definitely feels a bit more relieving to hear everyone's experiences and knowing I'm not alone.

[marksmom]

Hi -
You are definitely not alone! My son was diagnosed at 3 months of age, much like you with no illness but testing for another condition revealed a severe immune deficiency presenting as SCID but thankfully was later diagnosed as CVID.

I know right now is completely overwhelming for you, but with time, knowledge and experience you'll be amazed at how "normal" all this becomes.

My son is 12 and he does his treatment subQ - once a week in the fatty tissue of his stomach versus IVIG, which he was on for years until the veins didn't cooperate. I'm from the US and we haven't had any insurance issues at all, ever...I saw from your other post you asked about that.


There are some really helpful sites in the US for information, too - NORD (rarediseases.org), Immune Deficiency Foundation (primaryimmune.com), and IGLiving magazine (not sure the website but if you google it, it will come up).

This is a really good place to ask questions, too - and get support.

Best wishes,
Rachel

[liverbird]

Thank you for the reply Rachel, I will check those links for sure. And I'm glad that you have had no issues with insurance, I hope for the same for myself!

[elained]

Hi liverbird,

I was new just 6 months ago! And look how far I've come. Here are my most recent thoughts:

So today was infusion 3, which I did myself.

With the nurse observing and taking vitals.

Totally ok, no infusion site problems, no side effects, out to lunch afterwards.

The infusion takes an hour.

From now on I'm on my own.

What WAS the big deal? When I first heard about the idea I was horrified.

Some reasons:

1. At first I thought it was an injection and THEN the realization of an infusion taking much longer than a simple injection stunned me.

2. Then I thought it was ONE LINE (it is four). And the Hizentra video is like brain surgery the first time you watch it.

3. And the infusion material (blood from 1000 people?) seems bizarre.

4. And the amazing cost (98% or more is covered by insurance) but it seems overwhelming that anything can cost so much every year.

5. AND the warnings about 'things that can go wrong'. And do go wrong for some people.

6. And doing it once a week, possibly for the rest of my life. It seemed like a HUGE deal.

I guess we adapt. At least I have.

It's easy to do.

It does produce a LOT of little pieces of plastic, I'll say that.

I think I'll switch to evening infusions when I'm on my own.

And traveling will be no big deal, and they send four weeks worth at a time.

Hey, I'm one of you (almost) now, how amazing is that?

Hugs

Elaine (North Carolina elained)

[john]

Hiya Mr Liverbird,
As these good people have pointed out all the things that you should know about immunodeficiency and its treatment, I'll just chip in and tell you that I was diagnosed over 20 years ago and have been on infusions ever since.
I started with Intramuscular, quickly went on to intravenous and for the past 7 weeks have been self-administering Hizentra by Sub cut!
The infusions make an amazing difference to my life, the treatments fit nicely into my lifestyle and my health is good!
Welcome to a very small club of people with CVID worldwide, and to our forum, where you can ask us ANYTHING you want, and we'll do our best to give you the benefit of our experience!
Hope to hear from you soon!

[liverbird]

Thank you John and Elaine, I'm happy to hear you are both doing well. I'm past my initial shock and now I'm just waiting for the call for when my first IVIG will be!

[john]

Hi,
I'm pleased that you're coming to terms with your news, it's always a shocking thing to hear and believe me, EVERYONE responds in the same way.
It's so much better to be diagnosed and to get well again than to spend your life getting worse and worse, try to focus on that.
Have a good weekend....