She Got The Call Today (Updated)

Hi All -

My niece Brittani, who some of you will remember, got the call today for her second set of lungs in less than two years.



She contracted the adeno virus about a year after her first double lung transplant, which led to obliterans, a disease of the lungs for which there is no cure. She is down to about 17% lung capacity again, and if she didn't get the call today, the doctors were telling us she wouldn't live out the year.

Her original lungs died due to the chemotherapy she received as treatment for Ewing's Sarcoma, a rare form of childhood cancer that attacks the bones. She survived the cancer, but it cost her her lungs...she was only 14 years old when they found the cancer. She's all of 18 years old now.

So - I know we're all busy with the inauguration, but I hope some of you will read this, and send your best thoughts to our niece Brittani. She only has about a 50% chance of surviving the surgery today, and while I'm not religious, some positive energy sent her way surely cannot hurt.

If you want - drop her a note at Caring Bridge - she loved the last ones she got from you all.

Thank you.

UPDATE: Thank you all for your warm comments, prayers, and thoughts. And as a commenter noted below, please send some positive thoughts to the family of the person who died today, so that Brittani could have new lungs. In our position it is easy to forget the compassion of organ donors and the true gift of life they give as their last act on this earth. Our thanks and thoughts are with their family today, and we hope yours will be, too.

thoughts to her, you and the whole family! :hug:

She got the call around noon, and i know she has to be in surgery within 6 hours of the call, and at the hospital within two. She was actually in St. Louis today for a checkup when the call came - a bit of luck, that. She has some final testing to go through, mostly compatibility, to make sure the new lungs won't be immediately rejected.

But the surgery will be today, if the lungs are compatible. Within hours.

And thanks for the hugs - she needs them...

Here is a more recent pic of her:

Your family is in my prayers.

:grouphug:

:hug:

it's also amazing that someone could get a second set in two years time- are the recipient lists that short, the donor lists that large, or something else?

best wishes on her making it thru the surgery and beyond. :hi:

And they are the only organ guaranteed to last no more than 10 years. Just one more reason to bring on stem cell research...

I'm so glad your neice received a donor.
Please-sign your donor cards,people.

religious, i will still have her in my prayers today.

in honor of my first young patient that succumbed to Ewing's Sarcoma over 20 years ago and to give thanks that there is now a treatment for this devastating disease.
Your niece looks happy and healthy and I am glad she got the call today. It will be a wonderful day.
I will light a candle for her health and successful transplantation.
Thoughts and prayers to you all.

I'll send her a note too, at the site. How heartbreaking and scary this must be for her and her parents - and you.

Sending your whole family well wishes and strength.

:hug:

... and will continue to hold her in my thoughts and prayers. Thank you for keeping us updated.

Keep us posted!
:hug:

today and ongoing positive energy.

All the best to you and your extended family.
:hug:

Hoping that the surgery goes as well as it can, and also thinking of the family of the donor, who cared enough to give your niece a second chance. May peace and grace touch the lives of all involved in this very serious, very important day.

It is so easy to forget that the lungs Brittani will receive today came to her through the loss of someone else. This person's compassionate decision to be an organ donor is all that stands between her - and certain death. And their family is suffering today...

So thank you, thank you, thank you - for reminding us of this.

My sister underwent a kidney transplant many years ago. She had 12 years of good health she would not have had otherwise. Sadly, the diabetes she had ravaged her new kidney and she is gone now.

Until we can get these nut bag religious extremists out of office that continue to condemn stem cell research, organ donation is the only hope these people have.

I had a lung resection 23 months ago, and it was quite the process. Having both lungs completely replaced, I can't begin to imagine. So, yes. Prayers and hugs for her and her family, and for the donor's family as well.

:grouphug:

:pals:

on their way )))))))))))))))))))))))))))))))))))))))))))))))))))))))!

:hug: :pals: I really hope the surgery goes well and she is able to live a relatively normal life. :grouphug: Peace.

As the recipient of a donated part I am grateful to the family of the donor. Good luck to Brittani.

I know you'll give us an update as soon as you have news, so I won't ask. And Brittani and your family will be in my thoughts and prayers, as will the generous person who donated his or her lungs. I hope that giving her life will bring some comfort to that grieving family. When so much of the nation is experiencing a rebirth of hope-and I'm so glad that your family is experiencing this on such a personal level--the donor family's loss is a sobering reminder of how bittersweet life can be. But I don't mean to be a downer--I've talked to donors' families and it really is such a consolation to them to know that their loved ones have left such a beautiful legacy.

:hug: to Brittani.

I don't have the words to express how much.

Please pm me for info on how to donate. I don't do paypal but I can send a check to where ever it needs to go. I don't have a lot but I really want to help Brittani and your family.

You are in my thoughts and prayers.

A family friend is a year out from her double lung transplant. Best wishes for speedy healing to Brittani!

:hug:

I sometimes get asthma. It is scary not being able to draw air; can't imagine what it is like for her.

May she be hale & hearty for years to come.

There's an amazing project going on at St. Michael's Hospital in Toronto.

The cell based regenerative gene therapy is targeting the disease Pulmonary hypertension but
holds hope for all needing new lungs. there are already a couple women receiving treatment with
positive results. The patients own cells are removed from the lungs, then later re-injected to create new
lung cells.

This is an older release on the project, it's come a long way since 2005.
http://www.phcentral.org/news/011305NORTHERN.pdf

Warm regards and best wishes

I wish you and her all the best.

And I'd like to suggest something to the DU'ers reading this. If your state allows it, have "organ donor" put on your driver's license, so if you die unexpectedly, parts of the body you are no longer using may help someone else.

:hug: and hope she has a safe recovery!

Girl has been through a lot, and still a great big smile. You must be proud.

:grouphug:

for a quick and strong recovery for your lovely niece.

:hug:

:hug: :grouphug: :hug:

Please keep us updated...

:grouphug:

I am happy to spread JOY to Brittani tonight.

JOY to the donner also...... We Are One.

Glad to see she is still hangin' in there. Sending positive energy... Best wishes!

FS

Brittani has been in surgery since about 8pm Central. The new lungs showed up around 1:30am, have been checked in, and everything appears to be okay.

Brittani's old lungs have been removed, and so far, she is doing "great." The rest of us are scared out of our minds.

More news when we have it - and thank you all so very much.

I'm glad she's doing great so far! Here's more vibes! :hug:

She is such a beautiful girl. I read through her website what an amazing young woman she is. And strong.
That will get her through the night.
Sending you hugs.

:hug:

My thoughts will be with her in the coming days.

Thanks for the update.

Dr. Huddleston just came out himself to let us know that the surgery is complete and she will be in recovery for the next hour or so and then we may be able to see her for short intervals. This surgery was more complicated than the last time, he said there was more scar tissue and lungs were in much worse shape this time. The next 24 hours are critical (of course) and Brittani will be more or less unconscious until at least tomorrow. They will be keeping a close watch over her and she will be admitted to PICU (pedicatric intensive care.)

But she's alive - so far, she's beat the odds.

Thank you all.

...I considered lung transplant not long ago but opted out after seeing the others applying for candidacy. I felt selfish.

My pulmonologist can't understand why I'm not on oxygen as my FEV1 is only close to 20%. But for whatever reason, my body is coping well even at 45 years old.

Don't wait until you cannot qualify to get yourself listed--it will leave your options open.
I am an organ donor and I would not have a qualm about someone in your condition receiving my lungs (provided I didn't need them anymore).
Seriously. Think hard about this. Wanting to live a full life is not being selfish. It is merely a gift to your family.

...as my quality of life after a transplant would actually be diminished over what it is now.

My wife and I would have to give up our jobs and home to relocate in order to wait on the transplant. In this economy, that would be pretty difficult considering my limited employment options.

The medication, steroids, risk of infection and other changes it would wreak on my diet and body would be severe. Right now, the only thing on my body that's not humming along are my lungs. That would change with the transplant regimen.

The "success" rate they quoted at the transplant center was a survival rate of 50% five years out from transplant. My pulmonologist said there is no doubt I will be alive and kicking for well over a decade from now. An operation would hack my life expectancy down considerably.

There are some amazing things going on in stem cell research now. A therapy and treatment that has been developed in the last few years is making amazing strides and growing biological material using the subject's own genetic material. There is a person out in the world with a bladder grown via this method and a dog in a lab had a uterus grown and transplanted via this course that she used to deliver a litter of pups.

If the new president is serious about furthering science and research, human organ transplant could undergo a radical change in the next decade.

If it were a question of getting new lungs immediately after you requested them, that'd be one thing. But it doesn't work that way. So, from a purely pragmatic perspective, get yourself on the list now, and be noble if a set of lungs makes itself available and you don't need them at the time... but get yourself on that list now in case you need them when the opportunity arises.

You are wonderful for being so self-sacrificing. :hug: But don't go overboard with your nobility. The world is a better place for people like you in it. We need you here.

I will be following this all day. Best wishes.

My thoughts will be with her and your family today.

license I didn't think about the folks that might benefit...
To see the face of someone that that trivial act could help is mind blowing.
My thoughts are with you all today, I cant imagine my kids in that sort of situation.
Hang in there, our family is praying for yours.

Dave

:hug: :loveya: :hug:

May your operation be a successful one.

:fistbump:

I am the one from Scotland.

I saw a message on her guest book from her nana that says she got a call and things went well! :)

Best wishes.

What a great smile! Thinking of her today. Please keep us posted. I tried to leave a message for her at Caring Bridge but I could not access it. Will try again later.

Sending prayers hugs and vibes her way!:hug:

and hope that everything goes well.

What a brave woman she sounds like!

I will send her a note.

Love and prayers to her, your family, and to the donor's family.

:hug:

And good initial news, thank God.

(the site is linked in the OP)

Good vibes sent to your beloved

Brittani :thumbsup:

who made the gift possible.

And bless you and your family. Best wishes to help you get through these trying times.

My disease was intestinal, so very different from your experience--- but I almost died too, and experienced alot of very scary stuff along the way..... Now I'm 51

Here's a book I've been reading that speaks to me so strongly, about our soul choices on levels we may be only slightly or not at all aware of.... I don't know, though I think when I get an awareness that resonates on that deep soul level, I can feel it; maybe it will fill your heart up too? Courageous Souls: Do We Plan Our Life Challenges Before Birth?

It's on Amazon

Much love to you, your family and to the person who left a gift for you as they moved into another realm......

Hold tight, little girl. May you wake with new lungs and new hope.

I wish her all the success and a speedy recovery.

Hugs and kisses to her on this special day!

:hug: