I apolgize beforehand for busting in on a thread like this. I have searched everywhere and even tried to contact my BC/BS provider (as I have had insurance with them for 30 years…and could not get one iiota of simply ‘what if’ detail from them) for help. The ‘story’ is as follows: I have a dear friend from Eastern Europe who moved to America a couple of years ago. Due to difficult work circumstances he has been unable to afford insurance (he now understands the necessity of such despite his limited income). As fate would have it he had to check into the local emergency room (and was ultimately admitted to the local hospital) on Christmas Day 2010 and was eventually diagnosed with ITP (Idiomatic thrombocytopenic purpura – which is basically an unknown condition wherein one’s immune system attacks/destroys one’s platelets). Normal platelet levels (I believe) run about 120,000 to 150,000. His were 1000 upon entrance into the hospital (he was bleeding from eyes, through skin, in mouth, in urine, etc)…and subsequently he was administered a 140units (infusion/bag) of Privigen (10/gm per 100ml)…which when the dust settled cost $44,000.00. He also had a number of xrays/test and spent 4 days in the hospital at a charge of $1185/day.

I was able to help him with information about usual and customary (like BC/BS – Blue Cross/Blue Shield) insurance allowances for the hospital room. For instance, when my wife was in the hospital some time ago…they charged about $1100/day for her hospital stay per day…but BC/BS only allowed about $300/day and the bill was considered paid in full. I am hoping that someone might be willing to share with me some kind of similar feedback with regard to how thier insurance (hopefully something like BC/BS) handled the charges from the hospital for Privigen infusion. I don’t think anyone is privy to how these behind the scenes ‘allowances’ are derived. But for instance, when I had achilles tendon surgery last year…the doctor charged over $10,000.00 for the actual surgery and again BC/BS only allowed him payment of about $2600.00. Again the bill was considered “Paid in Full”. I’ve got to believe that there are similar situations or ‘allowances’ with regard to the payment for Privigen through powerhouse insurance providers like BC/BS.

I am requesting this information so that my friend can have at least some sense of usual and customary insurance related/established allowances with which to barter with the hospital. If anyone has information wherein they were administered a similar transfusion of Privigen…and were charged a similar amount (HCPCS billing code for Privigen is J1459 ($275 per unit…140 units = $38500.00)…and then their insurance provider paid fractions of this cost (say 20-35%) and the bill was considerd “Paid in Full” and would share this detail with me…it would be GREATLY appreciated.

My friend’s life was saved with this Privigen protocol and he wants to honor payment. However, he is simply a waitor in a restaurant…and even sends portions of what little money he makes home to his parents in Romania…and will never be able the pay his hospital bill of $62,000.00+. He would like (to offer/negotiate) to pay whatever is usual and customary (like possibly BC/BS would do) if at all possible. Again, any detail and/or helpful information that anyone can share will be very GREATLY appreciated.

Sincerely,

Bobby Griffith

Tonya & others,
I just wanted to thank you for both of your excellent posts, I think you have shared exactly what Frank needed to hear. Once it is correctly translated for him, what you have said will help this family out greatly. This forum can be so wonderful at times, it makes me proud to be a part of it.

NO to # 1, 2, 3 and # 5-8

YES to #4 Early symptoms started 4 months after flu shot. Following year after another flu shot (not diagnosed yet) was in a wheelchair one week later.

I sent you an email from the forum. I’ll try to help but I don’t know if it will be enough. I have CIDP and was never hospitalized like your mom. I have been in a remission for eight years and have not needed to see a neurologist for eight years. I have only lived in Florida for two years and my only doctor is my PCP.

Sometimes I do searches for the “what if’s” though. What if I start progressing again and need a neurologist.

I’m doing searches for you. I’ll be in touch.

Lori,
I sent you a PM in response to your reply.
Liz

Hi Erika,
I just found out that you are posting, that is good. The hospital you are in has a system where they allow people to send an email to patients. I hope you were given the one I sent today. Just take care and be well right now. We’ll talk when you are home and doing better, see if there’s a way we can meet. I have no phone number for you. I lost the number you gave me once before and your recent message on my answering machine wasn’t clear. You have my number, if I can’t answer will return call. Emails are easier for me.

I am in a remission and have not needed a neurologist, but did a research on the chance I might want one. Would you want the name of the doctor I thought might be good? I think he was at Florida Hospital.

Hi Erika,
I know that I won’t be able to help you with advice because I have CIDP and I’m not able to relate to what you go through at all, but maybe it will help in another way to know that you are not alone. I moved from New York to Kissimmee, Florida a year and a half ago. We do not live too far away from each other. I’d like to say that we could meet, but I do not drive and arranging transportation is a huge problem for me.

If you would like to get to know each other even though we can’t relate with illnesses, click on my name and email me or PM me.

I do respond to emails but just so you know, I am having serious problems with my computer and I hold my breath waiting for the BIG crash. My tech guy doesn’t know what’s wrong yet.

I am one of the “old timers” from the old forum.

OK…call me computer illiterate….how do I get a pic of my grandkids on here….can send them from my email box but that would not work. Anyone?

I was just informed to day that i have a hearing set for August 19th can anyone help me with what i will need or what i should do and have for this hearing so i can get approved please help……. thank you

Hello again,
This might also help if you live near enough, try Dr. Theodore Nukes at Heartland Neurology Assoc. in Indianapolis or Carmel. I don’t know how much he knows about GBS, but he is experienced in neuropathy’s.

Usually a teaching hospital is the best place to find well informed doctors.

Dawn,
I responded in your “Kevie’s pictures” post.

Hello,
I can really relate to what you are saying, everything almost echoes how things are with me. The only difference, I have CIDP and deal with the severe residuals that may not get better.

I don’t know if I have answers, but would you like to have an understanding email friend to talk to? Just click on my name and email m4e.

Hello Kylie,
We need to know more so that we can try to help you. You said that you are looking for a neurologist in the states. Do you live in the United States or another country? If you are in another country, are you trying to come to the United States and you want to know which state has good hospitals and good doctors? The people on this forum have GBS or CIDP, does your father have GBS or CIDP?

Don’t worry about how you spell things, we’ll figure it out or we’ll ask you what you mean.

Hello Dawn,
We can still see the whole picture of Kevie, so you didn’t fail. I love his beautiful eyes.

First let’s see if someone with alot of computer knowledge contacts you to tell you how to resize it. If no-one responds, click on my name and PM me. I may know enough to help you. I check for PM’s and emails often, so I’ll get it. I explain things in simple language and in detail.

Hello Catrina,
Your father probably doesn’t have what the people here have, but I think some of us will try to help you as much as we can. It is not your fault that your father drinks alot, DON’T EVER BLAME YOURSELF. Drinking alot is a sickness, just like the sickness that I have.

Your father must see a doctor and he probably won’t want to go, but that is what he has to do. Try to talk to him about seeing a doctor. If you know in your heart that he loves you, then ask him to go to a doctor because you love him and need him. Can someone else help you to talk to him? Do you have other family members? Do you go to a church that will help you to convince him to go to a doctor?

After he see’s a doctor, then the second step will be for him to start helping himself.

From My Heart,

when you check into the parks tell them you need a wheel chark and are disabled. in calif the let you and ond other person go to the front of the line for rides . it make your time in tha park alot easer , and syou cad do more with less stress on your body:D

Dawn,
I sent you a private message, hope you’ll read.

My advice would be to ALWAYS TRY TO SEE BOTH SIDES so that no-one says your friend doesn’t do enough or son asks for too much. I have CIDP, the chronic stage of GBS and I am waiting to find out if I may also have a second chronic syndrome, so I can understand what “son” goes through. I know his frustration when he tries to do things and his fatigue. I live with my mother and I am also a CAREGIVER to my mother who is close to being bedridden now. So I am feeling things from both sides. Trying to care for her literally drains me, but I would do it even if I had to crawl to her (which I did one time when I fell). I know your friends helplessness and how tired she must be from her own battle. SON needs someone to help him and so does your friend, then they can help each other. They both also need their “QUIET” time, I know I do.

Hello Pinky,
I think one of the first things you need to do is find a good neurologist who knows about GBS/CIDP. You should also find out if you might now have CIDP. I never had pain, but I know from listening to our family here that it’s real and if I did have pain I would want a doctor who would allow me to try different medications until I found what helps. Your post sounds like you do not have a good neurologist. I went through six neurologists!!!

Please tell us where you live, just a country/state/BIG CITY is enough. We’ll try to help you find a doctor and there might be a forum member near you.

Hello Pinky,
I have another syndrome, CIDP, never had GBS and I can’t relate to it, but I just wanted to say WELCOME TO YOUR NEW FAMILY, WHERE WE FEEL WHAT YOU FEEL. NEVER NEVER NEVER NEVER give up hope! I believe 100% that we are not hopeless.

Give people about three days to respond to your post, we’re in different time zones and we can have good days/bad days.

I LOVE your name. I love puppies and dogs, we have alot of dog people here, my name CODYSTANLEY is my two dogs.

Hello,
Welcome to your new family where we feel what you feel. I have CIDP, different then what your daughter is battling so wait for others to respond. IF YOU TELL US WHERE YOU AND YOUR DAUGHTER ARE, WE WILL TRY TO FIND A LIAISON OR MEMBER IN YOUR AREA. You’re not alone, we are here, NEVER NEVER NEVER NEVER GIVE UP.

A friend of mine has been in hospital for about 4 weeks now with GBS, my god, I can’t believe a guy who was in great shape is now paralized from the neck down, his wife is there by his side at all times. For anyone out there please please let me know what it is I can do to help them out, I’m still in shock and he seems to be getting worse, now on a machine to help him breath, can’t speak probably because of all the tubes down his throat and apparently his vision is dimished as well. How long does this down side last? His wife is putting up a good front, but I’m sure she is ready to fall apart, they have 2 small children and lots of friends but nobody is really sure what to do to help them.:(

Hello Molly,
I sent you an email through the forum. This is something else you can try to do. I think our foundation administrators would recommend it. The foundation offers a ASK THE DOCTOR column in our newsletter The Communicator. If you asked for a packet, you will receive the newsletter. CALL THE FOUNDATION 1-610-667-0131 and tell them your husbands story, ask them if it can be put in the column for the doctor to answer.

NEVER NEVER NEVER NEVER
GIVE UP
WE DO HAVE HOPE
from my heart,
Liz

[B][SIZE=”5″]Somebody please help! [/SIZE][/B] We have had 24 days of over 100 degrees and there is no end in sight. My hair is a constant mess, I keep sweating off my make up, and the AC at work stops working around 2-3 and I don’t get off until 5. I’m getting cabin fever too. Can’t go shopping as it is too hot in any store. No telling what my electric bill will be. I may be taking donations soon.

I’m melting…

I still can’t figure out how to post a thread. Probably just me but I would love someone to give me a hand.
Connie

My husband Eric has been diag. with GB. Can you give me any information about the disease and what happens?
\
Thank you,
Anthey

Hi George,
So glad you are back with us and you’re now okay. If you have any problem getting that ramp up, post again, and we, the members, will work together and find a way to get it done.
I’m going to email Morrada and tell him to open the TAVERN, so stop in.
We now have a location and your email, it makes us feel so helpless when you need help and we have no contact.
Liz

GEORGE,
I hope you listened to everyone and called 911, it doesn’t matter that you don’t want to do it, it doesn’t matter that they are ass**xx##’s, you HAVE to do it.

When you’re able to post again, would you tell us where you are! Like Ali said, we’ll find someone in your area who can put that ramp up, we’ll try to find a member who lives in your area. Our members stretch out across the USA.
From my heart,
Liz