Guess it's time for you to find a home infusion company . . .I've never understood why anyone would not prefer to have their infusions at home on their schedule on their comfortable couch.

Give you insurance carrier a call and find out who you in your in network specialty pharmacies are. It will probably cost you less out of pocket because most specialty pharmacies have programs to forgive your out of pocket expenses, but better than hospitals or physician's office. Unless you are on Medicare, Medicaid or have Kaiser then all bests are off.

Mark I am on Medi/Medi (medicare/medical) I was lucky to find this doctor. Someone told me today that Kaiser accepts medi/medi, so I am going to call and find out. Its just that I am going to have to go through THE WHOLE DAMN SHEBANG AGAIN!!!!! New doctors, transferring medical records. tests, tests blood withdrawal, driving back and forth to Sunset/Kaiser. And to think people want socialized medicine, going to the doctor out here is like going to a foreign country, waiting in a room with standing room only. I am just going to go off the ivig awhile until I can mentally build up all the schlepping I have to do. Pray I don't get major infection,which I'm sure I won't, but ya never know, it's just like dig a hole and throw me in if I die (she say's with a LAUGH). Better yet, maybe I could get a good job with excellent health insurance I could afford (now there's a fantasy, living in Southern California) like there's even any jobs out here. So, let God's will be done. P.s. I USED to have infusions at home (totally luxury) because as you know I have been doing this 14 years, so I have been on both ends of the spectrum. I NEED MONEY. Oh yes, the state of CALIFORNIA is BROKE, so trying to get health care is a fight.

Stimpy, if worse comes to worst, you can also have infusions at the hospital in the day care area. Did you call your doctor? I would think that your doctor would need to find another place right away for you. Having it at home, though, sounds like a dream...

Oh Stimpy, I'm so sorry that you have to go through this! I will definitely be praying for you! Hopefully you'll find the help that you need right away. How scary and awful! Sending you big hugs and lots of positive thoughts!

I just thought it might be time to look for help through the IDF advocacy center. Here's a link to a list of groups that might be able to get things rolling for you: http://www.primaryimmune.org/resou...
and here's the link to the IDF advocacy center: http://www.primaryimmune.org/advoc...

Sorry...links didn't work...here's another try:
Advocacy Center: http://www.primaryimmune.org/advocacy_center/advocacy_center.asp

Patient Resources:
http://www.primaryimmune.org/resources/resources.htm

Hey guys, its all o.k., ya know I have been doing this quite awhile, so I am used to the upsets, its just that it was so WIERD that my doctor, doctor Ira Felman who has high integrity, great doctor, etc. I mean, you call the office and the receptionist just says, "they went out of business" its just wierd. But I will totally be o.k., I'm really lucky I don't get sick, almost like complete remission, if there is such a thing. I mean I know the spiel, if I get really bad sick, I just call my immunologist and say I need antibiotics, and in fact I hoard antibiotics, just in case. Ha ha, I am ahead of the game. Hope everybody is doing well. Crazy medical doctors, eh?

i can not believe that!! so sorry you have to deal with this mess!!

I'm sorry you have to endure this. It is a giant hassle, but you must muster up your strength and do it again. You can do it. Nonetheless, I empathize with your struggles. I don't know your family situation, but if you can, I would lean on them a little bit. Once in ahwile it's okay to feel a little defeated. You have been given allot to deal with. Without some anger and sadness, even panic, you wouldn't be human. I live alone and have a brother 2 thousand miles away. I must do everything, and I mean everything myself. Many times I have driven myself to the ER or taken a cab. I have languished in bed for weeks at a time, never seeing or talking to anyone. Nonetheless, there is still a driving life force that pushes us through. I hope that you will tap right into your inner strength, it's there for you.

Markincle, you do understand that not all people are candidates for the subcutaneous ivig treatments... and for some folks it is just not the right format. Not everyone is as lucky as you are. I'm glad that it works out so well for you and makes you happy, that's great. I doubt that this is actually true, but there are times when you sound quite condescending and convinced that you know more than the rest of us. I hope I'm wrong, but, regardless you might consider toning the rhetoric down a bit.

Thank you fezzy for saying what some of the rest of us have been thinking, I agree that Mark probably has good intentions, but sometimes the tone is a bit harsh. Many of us are very fragile from all that we are going through, and to feel put down here in our "safe place"--even if it's unintentional--is more than we can bear. For some of us this is the one place that keeps us going. I'm fortunate that I have a support system locally, but so many others here have no one but this group.

One of my biggest fears in life is to be sick and alone and have no money and no insurance. Or even to be sick and alone and trying to hold down a job to keep insurance. I don't know how some of you do it, you are incredibly strong and I admire that strength! :)

Hey fezzy, ditto on that. I am fine, I feel guilty for even complaining about anything sometimes, because like I have said, I have been dealing with this for 14 years, and although in the beginning it was a NIGHTMARE, and like you I was all alone, driving myself to ERs, people just poo-pooing me, and oh yeah, just prescribing me antibiotics until the next crisis or infection, and frankly I don't know how you keep your head above the water, I mean working and having to be self-reliant. Maybe that fact just keeps you going. But I sure it would be nice to just feel healthy for two years without getting sick. I feel like I am in complete REMISSION with the cvids, as for now, I know I will be fine. It was just such a SHOCK to go in to the doctors and EVERYBODY'S gone, and oh by the way, I just got the letter today, that they were going out of business. Who knew. Anyway I know a lot of you are dealing with dual and/or multiple diagnosis, so that is extremely hard. You need a place to just vent and let it all out and cry without being judged. But also knowing that we have all been in the place of being in pain that you think is going to kill you and that nobody is around to care, or comfort you. I just know when you are in t hat kind of pain, don't feel ashamed to be on pain medication until the doctors can figure things out. Once I was so sick with sepsis, and so used to dealing with pain my lips turned blue and my husband took me to the ER and they asked me WHY DIDN'T YOU CALL 911? And I was like, dumbfounded, did not even think I should. So people out there if you cannot breathe or your in intense pain and can't drive yourself to the ER call 911, that is what t hey are there for. Anyways i am RAMBLING. Everybody hang in there, I'm praying for everyone's good health and comfort. God Bless

Oh yeah, Princess are you working on getting disability? I would definitely start getting the wheels in motion, for the years down the line. You definitely need to be getting disability.

I'm on short-term disability right now, but hoping to be able to go back to work full-time by the end of the month...perhaps it's a naive hope, but I really want to be able to continue with my career.

Can you work while applying for SSDI? I assumed that you'd have to be out of work to even start the process...

Stimpy, is it just the infusion center that is out of business or is the doc out of business too?

"Markincle, you do understand that not all people are candidates for the subcutaneous ivig treatments... and for some folks it is just not the right format."
I never said any thing about subQ. I've never been a fan. I just said it might be might be time to consider getting home infusions. My opinion is if you're not on Medicare, Medicaid or Kaiser it is by far the most convenient, least expensive way to get your infusions.

Sorry if you don't like my tone. I guess I'm better at trying to find solutions to treating our physical illness. I've been on IViG for over 28 years.

I honestly don't know what was condescending in my post.