Hi There,

I am sorry you are so sick and having to wait for Insurance Company Approval for IVIG on top of all that.

You probably are not going to like what I am going to say, but generally, if you are running a fever, coughing up green,brown, or bloody sputum, it is probably a good idea to head to the ER. Immediately Tell the doc you have CVID . That might change the course of any treatment they give you. At bare minimum you'll get some IV fluids, maybe a "clean" room, perhaps mention IV antibiotics instead of the orals, and with all the nebulizer treatments, maybe an oxygen tent might be helpful,too.

I know it bites, but please don't take chances with your health right now. Your immune system is compromised. You are so close to receiving IVIG. You will get better, but you sound in need of treatment right away.

As far as paying for another ER visit, I think it is safe to say that many of us here have outstanding medical bills. The ER cannot refuse treatment. When you are feeling better, Call the billing Department and set up an affordable payment plan.

Best of luck, please post again and let us know how you are doing,
LuLu

Hi there!

I completely understand not wanting to pay for the ER again. I am a single mom and was uninsured for a time pre-diagnosis. I also refuse to go to the ER now as do a lot of us. Its just gross there and the docs seriously have had about 5 minutes of training in PIDD in med school. Can you get in to see your PCP - is that the clinic you have scheduled? That would be your best bet because your pcp knows you best and knows how you react to meds, which ones are best for you etc. If you need an ER they will send you. Its very rare hospitals will treat us differently because of our condition. My last surgery the nurses were kind enough to wear a mask around me, other than that? I was kept in the general holding area with everyone. When I was doing IVIG - I was in the sick room in the nurses station and the MOST they let me do was pick out my own 'stall" to spend the day in. So often I would have people puking next to me all day :) Good times. My only other suggestion would be to discuss with your doc keeping you on a propholactyc antibiotic until you can start IVIG. A lot of us take them even though we are on treatment. Hang in there and keep us updated.

agree with kelli if you dont have a pirmary doc you need to find one that is familar with cvid.or at least willing to consult with an immune doc about your case...IDF has a consultation program for docs if your immune doc doesnt..i see an internist that has several cvid pateints....i see my internist for day to day stuff... infections etc.... my immune doc doesnt treat my day to day infections...but he does consult with my other docs..my immune doc has said to stay away from hospitals if at all possible...with that said there are times you just have to go, but for a rountine infection during office hrs i would head to my primary before the ER...and i stay away from walk in clinics.....anytime i have been in an ER they dont treat me any differently than any other person even after i tell them i have cvid....it would stand to reason that hopefully all the rooms are "clean" so to expect a "clean" room isnt realistic if they have to find you a clean room i would worry about their standard of care....having a cvid dx doesnt give you magical powers that all of a sudden docs now take you seriously like kelli said often they have no clue what cvid is and will often step out of the room to look it up....having a primary that knows you is the most important thing i can tell you...most immune docs dont treat the day to day....my immune doc sees me 1-2 x a yr he only sees patients one day a wk to have him treat me for my day to day stuff wouldnt work....my advice if you dont have a primary doc find one...i have been on ivig since 2007 i get 60 g x 3 wks and i still take a rotating daily anti b as prophylactic....taking a prophylactic anti b until you begin igg replacement might be a good idea i would talk to your doc about it...also remember it usually takes 6 mths to a yr to start seeing significant results so be prepared that even with igg it might not be an overnight fix..... keep us posted...

Hi. :) I also have to agree with Kelli and PCon. My immunologist told me to stay away from the hospital and doctors who are unfamiliar with immune deficiencies unless I had no choice. Before I was diagnosed, I was in the ER or Urgent Care pretty often. Most of the time, Urgent Care would call an ambulance or at least tell me to go to the ER. It really never accomplished anything to go as I would usually feel the same when I left as when I went in, even if I was admitted. I've had to go to the ER once for heart problems since my diagnosis and they didn't know what CVID is. My immunologist did actually want me to come to his office for any infection, although I don't think that this was communicated to his staff. On a different note, if you are have hospital bills that you are having difficulty paying, all hospitals have a financial aid program, but you do have to ask. Most of the time, you fill out some paperwork about your income and circumstances. They also take into consideration the number of accounts you have and the amount you owe. I hope you feel better soon! :)

just putting in my 2 cents: if you are so sick, I sort of agree with Lulu... you may need the antibiotics via IV. Also, I think what is meant by a 'clean' room in ER is a private space, not a group area with just curtains. They usually try to put me in one of those when I tell them I am immune compromised. I would hate for you to get worse and worse and if you have already been on Biaxcin and have many drug allergies, you may need an antibiotic tailored for the particular bug in your system. At the hospital they will culture your blood and find the bug and create and antibiotic concoction to treat it if need be. This is e result of all the antibiotic resistance we have these days. It is dangerous to have something that is not responding to treatment; especially when you have untreated CVID.
Good luck.

Just wanted to clarify about what I meant when I said "Clean Room"
When I go to the ER, I get moved pretty quickly to a room in the oncology Dept. These rooms are designed to be especially cleaned and disinfected, and have special ventilation systems for patients whose immune systems have been destroyed by Chemo or Radiation. Even Dr's and Nurses enter "clean rooms" with gowns, caps, masks, and booties.

If it helps, ask your Immunologist to write a letter of basic care to be uploaded into the computer at your local hospital. That 's what I did , so any doc who pulls up my file moves me to oncology right away, tests for my typical infections etc...

Hey! Thanks for all the advice and input. I get to avoid the hospital for now, and I follow up with my pulmo on Friday to evaluate where things are at. I still had a fever, and high heartrate, etc. Does anybody have any pointers on getting a good sputum sample? I suck at these. I definately have gunk in there but it always comes when I'm unprepared, in the shower, or I swallow without realizing...and when I try to get it up its so hard to get a strong enough cough to do the trick. I'm so weak as it is! (gross i know). But if I have a positive culture, which I have before, I'll start IV antibiotics and we won't deal with the same mess of throwing on more orals. Oral abx shouldn't be a big issue, but since I culture multiple resistent bacteria theres very few I can use and the infections get worse and worse so it could be more dangerous to keep using them. So frustrating!! Also, do your doctors ever tell you NOT to use cough meds? I understand that they want me to clear my lungs, but when I'm coughing until I'm puking all night I think it should be allowed! Thanks again!

Lulu,

By chance do you have one of those concierge insurance/doctors? I've heard of them but we don't have those here. Can I tell you that you have been VERY blessed to receive that kind of care and it is definitely NOT the norm. The last time I went to the ER, I was treated in a bed in the hallway for 8 hours. No it was not county hospital either ;) The last time I went to urgent care with what I thought was bronchitis I explained about my lung disease and working VERY quickly and aggressively to get it under control or I could die. I advised I couldn't take amoxicillan as it no longer worked. He promptly wrote the script for amoxicillan. We finally had to put a note in the computer that I was allergic because the doctors simply will NOT listen. My infusions were given in a sick room, literally with sick, contagious people. Hospitals and urgent care is the devil for a lot of us. Side note, I am available for adoption if I can move there and have this wonderful place you speak of haha

Hey Kelli,
No, I don't have a concierge/health manager although it would be nice. However, before becoming sick I was a Social Worker so I was very fortunate to learn how to work through red tape, and by teaching my clients how to advocate for themselves, I guess I kinda taught myself at the same time haha.
The best advice I can give anyone who is trying to get Prior Auths, proper ER care, a specialist covered by Insurance, Food Stamps, etc...is to be a PEST. Call 10x a day every day. Leave message after message on weekends and holidays. Don't let Human services mail an application out to you. Play dumb- say you need help filling it out and go in and sit with someone, Make sure it is filed while you are there. Your Insurance company WILL pay for any doctor, hospital or treatment regardless of what the 18yr old who answers the phone says. Irritate the hell out of people so they want your paperwork processed and off their desk.
It is a tiring process, but it is possible to get the care you deserve and that is Medically Necessary.
Also, remember ER docs are dumb. They are usually residents getting their ER rotation over with so they can move on to their specialty, Most will believe whatever you tell them. So, tell them you have a trashed Immune system, how you are prone to hospital borne illness like MRSA and C-Diff and you can't safely be in a waiting room. Tell the doc you need a "clean room" or your Immunologist is going to have a serious problem with the lack of knowledge and substandard treatment. You will get bumped to the top of the triage list (after the guy with the gun shot wound) and most ER docs will follow your instructions as they are clueless and don't want to get in trouble. If all else fails, demand an Administrator, ask tor the attending, and NEVER back down.

Sorry for the long post...I get kind of wordy sometimes.
LuLu