Brittani is rejecting her new lungs

[JFN1]

Our 18 year old niece Brittani (who survived Ewing's Sarcoma only to have the chemo destroy her lungs) is rejecting the new lungs she received in May 2007.

About 5 months ago, we discovered she had contracted the adenovirus, which isn't normally life threatening, but because she must be on immuno-suppressants to keep her lungs from being rejected, the doctors had to use other means to combat the virus; apparently she did not get fully rid of it.

Back about 2 months ago, Brittani started complaining about shortness of breath. We took her to the doctor, where we found she was starting to lose lung function. She's down to about 80% lung capacity now, so last week the docs decided to do an open chest biopsy of her lungs to check for something called, "obliterans."

We got the results - Brittani has obliterans. There is no cure, it produces emphysema-like symptoms, and will eventually kill her, unless she gets another new set of lungs.

The doctors don't know (or maybe cannot know) if the obliterans were caused by her earlier bout with the adenovirus, or if the obliterans is a result of organ rejection. Either way - her lungs are gone - again.

Brittani won't have insurance to cover a second lung transplant procedure (she's reached her "lifetime maximum benefits" at the ripe old age of 18), so we're not sure what we're going to do. Our fundraising efforts have produced very little, and no one out there with the ability to make a difference in this situation seems to care enough to do anything about it, so we're not sure what is going to happen. It's clear the insurance company doesn't care - they'll let her die before they spend another dime.

Our burdens, are certainly not yours, so please understand we're not asking for anything. And I'd like to point out yet again that if we had Universal Health Care, Brittani would not have to worry...none of us would have to worry...

Anyway - just though some of you might want to know the latest news...sure wish it was better...

[ThatsMyBarack]

1. ....

:cry:

Thanks for sharing. (:hug: for Brittani)

[bluethruandthru]

2. I'm so sorry about your niece.

I know if she were my child I'd be packing up and moving to Canada!

[malaise]

3. Why don't you take her to a country where she can get

the required medical help without sending the family into poverty.
Maybe DUers can put out some feelers to other DUers overseas.

[austinboy]

4. I'm so sorry

I was so captivated reading your post that I found myself in tears as I got to the end. I feel so sad for your niece. My thoughts and prayers are with you and yours.

[Mojorabbit]

5. I am so sorry to hear this

I was keeping my fingers crossed she would be better. Is there no way to get the media involved?

[JuniperLea]

6. I'm so sorry... she's been so brave

Prayer and positive thoughts heading Brittani's way... and yours.

It's unthinkable that this could happen in the USA. We're a shadow of our former self.

:cry:

[kstewart33]

7. Is Canada a possibility? Or Europe? nt

[KamaAina]

37. Or Cuba?

as presented by Michael Moore in Sicko.

[bonito]

8. .

:hug:

[applegrove]

9. Very sorry to hear that.

[blue sky at night]

10. pack your bags and get the hell out of.....

this place...france would be a start, or how about canada; maybe you could ask for asylum.

[tblue37]

26. It doesn't work like that. A sick person can't just move to

a country with universal health care and then get tothe health care rolls to have their illness taken care of. If that were possible, a lot of people woud be immigrating to Canada, France, or even Great Britain. In fact, you can't even just pick up and immigrate to another country without going through their immigration procedures, and they don't let just anyone in, either.

My daughter is marrying a Frenchman in September. When she has babies, she will make sure the children are born in France, because even though her husband-to-be is a French citizen with French healthcare rights, the children will not be French citizens uness they are born on Fench soil. Since my daughter is an American citizen, the children will be American citizens no matter where they are born, though there will be paperwork to fill out to get them registered as American citizens. But the French don't determine citizenship the same way, and my daughter wants to make sure they will have access to the French healthcare system should they ever need it.

[spanone]

11. sending light

:grouphug:

[I Have A Dream]

12. I'm so sorry, JFN1. I wish that I could do something tangible to help.

:cry:

I will certainly send good vibes her way. :(

[shireen]

13. POST THE ADDRESS OF THE INSURANCE COMPANY!! They need a dose of DU rage!

I don't know how far you can go with fundraising when you're racing against the clock, especially given the dismal state of the economy.

Which state do you live in? Is there any state assistance you could apply for? What about medicaid? One of my colleagues has a kid who has been through 2 kidney transplants and cancer. They are getting some help from the state (Maryland).

[JFN1]

14. We've been all through that

She's been fighting this since she was 14, when she was diagnosed with Ewing's. Illinois is a crappy state if you're sick; help from them doesn't amount to squat. And the Federal government is even worse. Medicare (or Medicaid, I don't know which it is) helps some, but they do nothing to cover any of the real world costs associated with her care. And I'm pretty sure they won't help with much for a double lung transplant.

The safety net that SHOULD be in place in any civilized country has been shredded by 10 years of Republican corruption and abuse - there effectively is no net.

And I would LOVE to post the insurance company's name, but I fear I must not, as the insurance is provided by Brittani's Dad's work. I fear repercussions for him...(and how fucked up is that?)

[Hawkeye-X]

15. contact your Senators - Durbin and Obama

I'm sure they'll pull a few strings...

Hawkeye-X

[JFN1]

16. I tried Durbin

as he is our actual Senator - we got a non-committal form letter back. When I followed up with a phone call, the staffer was very rude and not at all helpful. It probably doesn't help that I call his office from time to time to express my views and to tell him (via his staff, of course) what I'd like him to do. I really like Durbin, but his local staff pretty much blows.

We also tried our local Congressman (Republican) and that got us nowhere, and we tried our State Congressmen, all to no avail. Lots of, "sorry to hear that" but no action.

We've not tried Obama, as he's pretty busy right now...

[KamaAina]

36. Try his DC staff

I really like Durbin, but his local staff pretty much blows.

Often the really knowledgeable aides are on the DC rather than the local staff. Or, in a big state like IL, maybe try a different regional office.

WASHINGTON, D.C.
309 Hart Senate Bldg.
Washington, DC 20510
9 am to 6 pm
[phone] - ph
[phone] - fx
CHICAGO
230 S Dearborn St.
Suite 3892
Chicago, IL 60604
8:30 am to 5 pm
[phone] - ph
[phone] - fx
SPRINGFIELD
525 South 8th St.
Springfield, IL 62703
8:30 am to 5 pm
[phone] - ph
[phone] - fx
MARION
701 N. Court St.
Marion, IL 62959
8:30 am to 5 pm
[phone] - ph
[phone] - fx

As for that other Senator, yup, he's busy, all right -- but his Senate office staff presumably aren't. And believe me, it's always the staff who get these kinds of things done.

[Firespirit]

39. Yes, try to contact him. It can't *hurt*

Obama's DC press secretary (or director of communications, I forget which) used to work for John Kerry, another contact possibility. You might also contact Ted Kennedy and Hillary, even though they are not your senators. They're national figures who have an interest in healthcare.

[tblue37]

27. Illinois? Hmmmm. Don't you have a fairly prominent senator from Illinois

who might be willing to call attention to your niece's plight if he (or his campaign) were made aware of it? Perhaps Elizabeth Edwards could also be made aware of it and asked to publicize it. She might have some ideas about routes that might be taken to help Brittani out.

On edit: Write to Oprah, too. Sometimes she takes up the cause for individuals in terrible situations.

The point is to get this so widely publicized that (1) the insurance company will be embarrassed by the negative publicity so they might be forced into cooperating and (2) a wider public will become aware that she needs help. The more people who donate, the greater the final sum will be--and also the faster it will come in.

[shireen]

32. this is totally unreal

how something like this can happen in the USA is beyond comprehension.

they do not value human life. it's all about money.

please continue to keep us updated about Brittani. She is in my thoughts.

:hug:

[GreenPartyVoter]

17. I am so sorry *hugs* Maybe Michael Moore can help you guys get her somewhere she can get help??

[JFN1]

18. I wrote him an email

haven't heard back...I know it sounds trite, but we've tried everything we can think of. We've written celebrities, businesses, city, county, State, and Federal officials, insurance companies, foundations, charities - I even wrote Bill Gates!! We got a lot of help at the beginning, four years ago. But I guess we're "old news" now; no one is stepping up.

[GreenPartyVoter]

19. I detest our health system, but I am sure you hate it even more. *extra hug*

[malaise]

21. This is too sad

You have me in tears.

[Olney Blue]

20. I'm sorry about Brittani.

[Contrary1]

22. Your family might consider doing what these folks did:

I posted this on DU last March. More than $700,000 was raised in a matter of days. Sadly, Michael passed away May 25th when the second round of chemo failed. All funds that exceeded his medical needs were donated to the fight to cure cancer.


Family trying to raise $500,000. by Thursday for son's bone marrow transplant

Only 19, and his lifetime insurance benefits have already been reached. What a shame that the insurance companies seem to have a limitless amount of money to lobby in Washington, or sue some poor scmuck for return of monies they paid out.

Community joining fight to raise money for Noblesville teen

"One family is reaching out for help and relying on the power of a chain e-mail letter to help raise funds for a teenager in need of a bone marrow transplant.

Tom and Kelly Treinen received word Friday their son Michael has reached a lifetime cap for insurance and the family would have to pay $500,000 for the transplant out of their own pocket.

Michael is battling Acute Myelogenous Leukemia. He was diagnosed in May 2007, went into remission in December 2007, but the Leukemia struck again in January.

The Treinens have set up a trust fund and e-mailed friends asking for a $20 donation to be sent to Harris Bank in Noblesville. In the e-mail, they ask recipients to send the letter to at least 20 people. The transplant operation would take place in the Children’s Hospital in Seattle, Wash. The insurance company informed the family the money is needed by Thursday.

“We are no longer the typical American family and like most of you do not have $500,000 to send them,” The Treinens wrote. “I know that many of you do not know us. I can assure that a year ago we would never have believed that we would be asking not only our friends and family, but complete strangers to help us pay to save our son’s life. Believe me when I tell you this is the last thing we want to be doing. But, you do what you have to do.”

[MuseRider]

23. Oh I am so sorry.

My heart is aching for you and for Brittani. Murder is what this is. We spend all our money to murder to spread freedom all the while letting something like this be called health care. I am so sorry. I wish it was better too.

Sending thoughts of peace to you all. :hug:

[roguevalley]

24. I am appalled about this. I am so sorry. I wish you only the best.

My cousin, my beautiful cousin is fighting the same disease. These orphan diseases are the worst. God bless you and your family through all your trials. You are all loved.

RV

[mitchtv]

25. I can relate having recieved a liver transplant

and lost a relative waiting for a lung transplant. I was rejected for transplant by my HMO , luckily I was in a represented bargaining unit and we had open enrollment. I was able to change companies. All best wishes and praiyers for Brittani

[Ilsa]

28. I'm so sorry. I hope your niece and her family find a way. This breaks my heart. nt

[AZBlue]

29. I'm so sorry. Let us know if there's anything we can do to help.

Several posters have good suggestions upthread - I can't think of anything to add at the moment. But you know that if there's anyway DU'ers can help, all you need to do is ask.

:hug:

[Th1onein]

30. 80% is normal lung function

However, it will go down very quickly. They've had some success in using aerosolized cyclosporine in these cases--pretty good success, actually. Can you talk to your doctor about this course of therapy? It's new, but not that new.

[JFN1]

31. I don't always get the terminology straight

I mean 80% of normal lung function, not total function.

I am not certain what treatments they are trying - she will be in the hospital for several weeks as they try something. I know with transplant patients most "normal" treatments are off the table, due to the immuno-suppressant factor. I do know that steroids are part of the treatment, as they were for the adenovirus. She's been on and off various steroids (one reason for the swelling in her face in some of the pictures we've posted) since she got off chemo (and during, too, I think).

She also has the added problem of being diabetic, a condition which she had almost immediately after the transplant (and which affects many transplant patients), then it went away for about 6 or 7 months, but returned, and remains. So I just don't know what they are going to do.

[Th1onein]

42. Don't depend on doctors.

You've got to be an ADVOCATE for her care, even if it's trying something new. Cyclosporine has been used as an anti-rejection drug for MANY, MANY years. Talk to her doctor. INSIST on trying something different. All you'd have to do is use the drug in a different way--aerosolization versus intravenous or by mouth--probably have to buffer it with something, depending on it's pH, or use the IV solution.

I've been through this before, with my son, who had cystic fibrosis. This girl has, at best, about 13 months to live, and that's WITH their current standard of care. The odds aren't going to be much better, even with retranplantation.

The train is heading down the track.

[shireen]

45. totally agree

I've had to deal with serious illnesses these past 5 years, and I strongly support Th1onein's statement. We need to be own advocates, not rely on doctors. I love my primary care doctor, but she has to deal with many patients so I don't expect her to micromanage my case. I do a lot of my own research, and let her know what I've found. I've even suggested medications to her. It's hard to do it when you're sick, and sometimes, I wish I had a healthy me alongside as my health advocate. In Brittani's case, she's a kid. She needs an adult advocate to aggressively study her case, do research on the internet, educate her and her family about what's going on, and ask her doctors about other treatment options. It's very hard difficult work, but don't stop ... you'll eventually reach a level of expertise that could help Brittani significantly.

[shireen]

33. one more suggestion

write a letter to the editor of the hometown newspaper about Brittani's ordeal. Keep it short and concise to increase chances of publication. At the end, simply say something like: what else can we do to save Brittani's life?
Pose it as a question ... that will force readers to really think about it.

The goal is to simply create awareness in the local community. Shake the tree and see what falls out.

Please keep us updated about Brittani.

[JFN1]

35. Thank you for the idea

We've had the local papers involved - both of them wrote nice articles about Brittani when she was first diagnosed. But it has been nearly four years; I will contact them again. Thanks.

[shireen]

34. Nance Greggs wrote an excellent post about Brittani

http://journals.democraticunderground.com/NanceGreggs/409

I forwarded it to Thom and Louise Hartmann, hopefully they'll cover Brittani's story.

[The Backlash Cometh]

38. May God give you strength during this difficult time,

and may he be the one to forgive those who interfere with good medical assistance, because I sure won't.

[WillowTree]

40. Is she not eligible for AllKids?

http://www.allkidscovered.com/

[Firespirit]

41. One more suggestion

If you do not already have one, go to DailyKos.com and create an account. In a few days you will be able to post a "diary," or article. Tell the full story, including the bit about the rudeness of Durbin's staff. Your article will almost certainly make the "recommended list." And, politicians and their staff DO READ this site, and sometimes post on it. There are also tens of thousands of people, with a huge body of knowledge, that participate.

[knitter4democracy]

43. She needs the best hospital she can get, too.

It's not just for a transplant--she needs the best in lungs there is. I'm not sure who'd that be, but she needs the latest treatments with the best teams out there. If anyone deserves it, she does. Think big research hospital. What about St. Jude?

[shireen]

44. K & R, keep this visible. nt

[Vinca]

46. Have you tried contacting the Shriners?

Their hospitals treat kids regardless of insurance status. Universal healthcare would make a huge difference to so many. I just don't get this country. My best wishes to Brittani. I wish I was rich and could help, but I'm among the uninsured and living on the tightrope.