share: pulmonary fibrosis

Janet,

You don't need to send a picture. Your words create all the picture any of us need to see. Natalie was obviously a joyous girl with a family who adored her (and vice versa). And that gave her strength and grace when she needed it most. She's a very inspiring girl.

While of course your lives are changed forever, she would not want you to stay devastated forever. She would not want that to be her legacy. But I know that she would be very proud that her aunt is trying to get the word out about IPF and help others!

Hang in there, Janet. One day at a time. It's all we can do sometimes.

Thank you so much dear Diane for your mail. How incredible that you should come across Bob O'Rourke and the piece on The Today show. I so regret missing out on that particular show today.

We did know about IPF and initially that is what they told Natalie but when her oncologists and pulmonary specialists had a conference, they realized that hers was due to the radiation she had received nine years before, to treat her Hodgkin's Lymphoma!! Natalie was very bright and smart. She did a lot of research on her own, on the internet, at medical librarys and articles. She knew more than she let us the family know about it. Her brother said she knew her fate but was trying to be optimistic and trusting in the Lord. The poor kid fought so hard most of her young life, I guess she just got tired and went home.

Thank you so much again for forwarding the information on Bob. You are so kind and I am so glad to have found you. Maybe I can figure out how to send you a photo of our Natalie so you will see how beautiful she was and how much her loss has devastated us and changed us for ever. Nat was not a partygoer or someone who liked to drink, smoke or do drugs. She was always very reserved, quiet, happy in her own company with her two sweet dogs,, staying in her room most of the time and playing her CD's of MJ, Aliya, Alicia Keys made her happy. Nat had graduated from sound engineering school in New York just two years ago and moved back to LA to find work,, but soon after that her illnesses, depression, eating disorder history and the biggest one of all - being told she will die as double lung transplant for her would be impossible given her frail, declining health and then there would be no guarantee for full recovery,...\\\
Image how a young girl facing a delemma like that must keep a positive and cheery attitude when facing a death sentence!

Looking forward to hearing from you again,

sincerely

Heartbroken aunty Janet

Heartbroken,

Me again. This morning as I was watching the Today show, I saw a piece they did on idiopathic pulmonary fibrosis that you might be very interested in. A man named Bob O'Rourke was diagnosed with it 3.5 years ago. "Idiopathic" means they don't know what causes it, and they have no idea what caused it in Mr. O'Rourke. The irony is that he spent his career working around the scientists of Cal Tech. And yet he is faced with this disease that no one truly understands.

His only option is a lung transplant, but of course that's a very difficult operation and the waiting list is long. Despite all the work he did at Cal Tech over the years, he says that publicizing the cause of pulmonary fibrosis is more important to him than anything else he's accomplished.

"Before I take my dying breath, I'm going to make this a household word," he tells the interviewer.

When I searched for Bob O'Rourke on the internet, I found that he's been very active in trying to get the word out. Check out these links:

http://www.sgvtribune.com/news/ci_15067014

http://www.prnewswire.com/news-releases/pulmonary-fibrosis-cpf-to-receiv...

And here's a "We Love Bob O'Rourke" Facebook page:

http://www.facebook.com/pages/We-Love-Bob-ORourke/114695968555261

I know this doesn't make your loss of Natalie any easier. But know that you are not alone in trying to get the word out.

Heartbroken,

I am so very, very sorry about your loss of Natalie. She was so young, and had been through so much. And you and your family went through all that with her. Of course you are devastated. Losing a beloved family member hurts so very badly.

Here is what I love about your post, however: Natalie's spirit still shines through it, and through your words. It is clear that she was a happy, loving child and adult, despite the challenges she had. That can only be due to the family you and your mother made for Natalie and her brother when they were young. You gave her an amazing gift. And I know she gave you so much in return.

For others who are interested, here is a link to the Pulmonary Fibrosis Foundation, where you can learn about the disease, donate to the cause, learn about research or fundraising, or contact the group:

http://www.pulmonaryfibrosis.org/

And heartbroken, please know our thoughts are with you. And know that Natalie is still making a difference -- your post here is a perfect example.

Dear Pat,
Thank you so much for your feedback and heartfelt condolences. I am still in shock and pain at the loss of my precious Natalie whom my mother and I raised and cared for most of the time while my sister was "otherwise occupied"!!!! Natalie was dealt an unfair hand right from the start, beginning from the time her parents divorced when she was only five and her brother, ten. She also battled with anorexia nervosa and was in rehab for two years. Then the cancer and finally the PF. Natalie had a cheerful outlook despite all that she had endured in her young life. Had there been a miracle drug to extend her life if not cure it, she would have gladly taken it just as she took all her other meds all of these years for the Hodgkin's cancer.

I am angry and hurting at the thought that yes, all those 200,000 plus who are living under the same sword hanging over their heads without any hope for a cure or treatment. I keep seeing Natalie's beautiful face struggling for breath and the pain she constantly experienced...no one should have to go through that, especially a young person, through no fault of their own, but mainly because of arrogance and ignorance of physicians, specialists and others who refuse to pay attention to the seriousness of this disease and the dilemma people and their loved ones have to face.

Please pray for our Natalie's soul to rest in peace....we prayed to the Lord for a miracle but I guess He knew best..I do hope that one day this disease will get the same attention, if not more, as the other select few everybody harps on about constantly.

Thank you again for writing,

Sincerely,

Heartbroken aunt Janet

Hi heartbroken - It's a tragic loss that your Natalie is gone at such a young age. Thank you for taking the time to let others know about her and how much you care for her and miss her.

I understand your frustration is seeing other medical conditions receive more attention. Sadly, there are some causes that have more resources than others do and hundreds of terminal illnesses get little attention.

Our healthcare system does a poor job in helping young people with cancer. This is changing, thanks to many people in their 20's and 30's who are refusing to go along with the old system, but it's still not the type of care and concern and informed support that young people need.

I hope at some point you will find the strength to help educate others about pulmonary fibrosis, just as you have done by writing to EmpowHER.

According to the Pulmonary Fibrosis Foundation, the most recent estimates indicate that approximately 128,000 Americans are affected, although there are published estimates that suggest the number may be as high as 200,000. More importantly, it's anticipated that the number of diagnosed individuals will continue to increase.

There are many people who would benefit from your efforts to educate the public, and I hope you will continue to speak out and tell Natalie's story.

Take care,
Pat