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.

661 Members

2,972 Posts

0 Online

gliderlove 04/14/2013

Hey. I am on my 3rd day in ICU and not doing well. Came up with a nasty fungal and bacterial infection in my lungs. Have a lot of IVs and therapies going but still cant ventilate on my own. Im on non invasive ventilator support right now and trying to avoid intubation due to higher infection risk. GI system had me doubled over last night, thank God for morphine. They told me once I am able to go home I need to be in search of transplant team to be prepared. That was a surprising talk! Anyways, I just need some good juju. Im exhausted and cant keep up. Thanks!

deleted_user 04/14/2013

Hey Gliderlove!

I am sending all the good vibes I can your way and lots of positive thoughts. I'm so sorry this happened to you...it seems like it all happened very quickly. Stupid CVID.
You seem to be keeping a positive attitude which is awesome and I know that everyone here is rooting for you.
Transplant? Bone Marrow?

I don't know how much time you have spent overnight in hospitals, but I want to share some secret information on how to get the nurses to REALLY like you! Start like this "I'm cold, can I have a blanket please?" In 5 minutes push the call button and say "I'm kinda hot, can I get some Ice Chips?" Wait 5 more minutes. Push the call button. "Nurse, I think the Ice Chips made me cold. Could I have an extra blanket please?"
Trust me, the nurses will love you, and you will have lots of fun too!

OK, Glider, sending all kinds of good energy your way, you rest and take care, and feel better.
Post when you can...keep us updated :)

kelli1b 04/14/2013

OMG what kind of transplant?? Sending prayers your way RIGHT NOW!! ((hugs))

gliderlove 04/14/2013

they want me prepared for lung transplantation. functions in the 30s right now. a little more awake this afternoon than I have been but everything wears me out! thanks for the prayers.

deleted_user 04/14/2013

hope healing is heading your way.... hang in there......bless your heart

ChocolateMoosie 04/14/2013

I'm praying for you! I hope you feel better soon. Keep us posted on how you are doing. :)

deleted_user 04/14/2013

Lots of prayers and good thoughts...keep us posted

countr 04/14/2013

I will also keep you in my prayers. Try to get as much rest as you can. Keep us in touch, we are here for you.
LuLu I liked the humor in getting nurses to like you.

deleted_user 04/15/2013

Hey Glider,
Hoping this morning has brought you some strength and healing, that today is better than yesterday.
You are strong!
Still sending out the good vibes :)

deleted_user 04/16/2013

Hi Glider,

It's Monday and I sent you some positive thoughts yesterday, but I thought 'What the Heck?'' I'll send some more today! So, good thoughts coming your way, and hopes for a speedy recovery.

Ummm...just because there are 2 posts from me in a row does not mean I'm like stalking you or something, OK? See, It's just that it's early in the morning and I have the time and so what if I have 2 posts in a row right? I mean they are kind, well meaning posts...this is SO not harassment :)

Sorry for my off beat sense of humor...
Truly hoping to hear good news about your health soon...
Hang in there, LuLu

gliderlove 04/16/2013

I weaned off the machine that was breathing for me. I am still in ICU and having to gain back my strength. I got to eat applesauce; it's funny because I would have given it a 5 star rating! Interesting what will get you excited after 5 days without nourishment. Hopefully things improve quickly from here. 5 days in ICU is driving me to insanity. I may need a psych consult soon. Not being able to communicate, or punch somebody in the noggin when they're causing you pain is no bueno. My independence is one thing I don't do well without. My WBC count is super low right now, so everybodys coming into my room with funny suits to keep from giving me cooties, they gave me a bonus 40g IVIG. I wear out very quickly, like a few text messages make me ready for another nap. Anyways, that's where things are at. Thank you so much for the positive thoughts!

countr 04/16/2013

So thankful they weaned you off, I assume a ventilator machine. Hang in there glider. One of the hardest things for me when I've been in ICU is trying to get some sleep thru all of the beeping machines. But, any way try to rest when you can and give your body time to heal. Hopefully the IVIG will help give you a boost. Thank you for letting us know how you are doing. I will continue to keep you in my thoughts and prayers.

deleted_user 04/17/2013

Lots of good juju, good healing thoughts your way!

gliderlove 04/17/2013

Finally out of ICU but am looking at a couplemore days in the hospital as I now aquired pancreatitis. Go figure. At least theres a light at the end of the tunnel. Cant wait to be home!

deleted_user 04/17/2013

So glad you are out of ICU!
Stupid hospitals and their hospital borne illnesses-MRSA, C-Diff, and now Pancreatitis. Geez!
How are your lungs recovering? Is there still talk of a transplant?

Speedy Recovery,
LuLu

countr 04/18/2013

That is wonderful news. I am keeping you in my thoughts and prayers. Hopefully you will be home soon. Let us know when you can how you are doing.

Join the Conversation