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.
Tomorrow afternoon is my first appointment with an immunologist. Wish me luck!
The doctor's office sent a lot of paperwork in advance -- honestly, completing my income taxes wasn't quite this involved! They asked every occupation I've ever had...every residence I've lived in for more than two years. Of course, every medication and supplement...but also the health of my parents, grandparents, siblings, aunts, uncles...maybe even cousins. It seems they leave no stone unturned. I'm guessing that's a good thing.
My parents are going to go with me. It's about a two hour drive so we'll leave early tomorrow we can deal with traffic uncertainties, have lunch together, and find the office without stress. I don't have to be there until 2:30pm. My appointment is at 3. It will be an all day affair for us. It may be very late when we get back.
I'm guessing there will be blood work involved. I've read that they have to do the vaccine titers to get a definitive diagnosis. My pulmonary doctor ordered two separate immunoglobulin panels - a few months apart - he was concerned about the rate at which I've been losing lung function. The numbers were consistently low enough to fit the CVID criteria.
I'm a little nervous - but at the same time I will be so grateful to be seeing someone who is very qualified to give me answers about what is going on with me and who will hopefully help to improve my quality of life.
When I found out that something was wrong with my immune system, it scared me - to be quite honest. Everything has been a whirlwind of uncertainty, unease, and this crazy effort to learn as much as I can on a very complex subject. You guys are so very knowledgeable and helpful - and that has gone a long way to help me regain my balance going forward. I appreciate every one of you so much.
The doctor's office sent a lot of paperwork in advance -- honestly, completing my income taxes wasn't quite this involved! They asked every occupation I've ever had...every residence I've lived in for more than two years. Of course, every medication and supplement...but also the health of my parents, grandparents, siblings, aunts, uncles...maybe even cousins. It seems they leave no stone unturned. I'm guessing that's a good thing.
My parents are going to go with me. It's about a two hour drive so we'll leave early tomorrow we can deal with traffic uncertainties, have lunch together, and find the office without stress. I don't have to be there until 2:30pm. My appointment is at 3. It will be an all day affair for us. It may be very late when we get back.
I'm guessing there will be blood work involved. I've read that they have to do the vaccine titers to get a definitive diagnosis. My pulmonary doctor ordered two separate immunoglobulin panels - a few months apart - he was concerned about the rate at which I've been losing lung function. The numbers were consistently low enough to fit the CVID criteria.
I'm a little nervous - but at the same time I will be so grateful to be seeing someone who is very qualified to give me answers about what is going on with me and who will hopefully help to improve my quality of life.
When I found out that something was wrong with my immune system, it scared me - to be quite honest. Everything has been a whirlwind of uncertainty, unease, and this crazy effort to learn as much as I can on a very complex subject. You guys are so very knowledgeable and helpful - and that has gone a long way to help me regain my balance going forward. I appreciate every one of you so much.
deleted_user
I know what phone both she is talking about but they have only ever made me breath in and out of a tube in it with a clip on my nose and I didn't pass I failed very bad. any way its a clear cylinder with a bench in it and they close the door on you maybe thats when they suck the air out I always held my breath when they told me to...lol and then almost passed out later hahaha
kelli1b
Tinks - I do those PFT's every 2 months for my lung disease. I thought she meant a booth with no tubes you breath in and out of. I also have to do a 6 min walk each time which is really lame to me because even at my sickest point, I always pass the 6 min walk with flying colors
deleted_user
who is your doc? did you go to kirklin UAB? i see harry schroeder there and LOVE him.....
zephaewryn
Yes! That is who I saw at the Kirklin Clinic. I was very impressed with him :-D
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