CF awareness

[julie]

Some of you might remember posts from a few weeks ago where we were talking about CF awareness and contacting some TV shows like 60 Minutes, Dateline NBC, Oprah...

At this point, I have a "leading" story that I would like to start out the letter with (written by somebody else), and want to add a few paragraphs about my husband and my concerns about the lack of knowlege regarding CF (how people don't believe CFers are living to adulthood, that adults with CF need support and assistance as well, that although CF doesn't kill as may people as AIDS or CANCER it is still a big concern and awarenes about the genetic factor of it-and the iimportance of genetic testings as a part of "family planning" can help reduce the CF diagnosis). I wish to make it only a paragraph or so, and include contact information such as an email address and/or phone number.

I hope to get 5-8 more people to "add" to this letter, but I need people who are willing to (in the event that they are interested in doing some sort of story) be interviewed and share their stories. If you are interested, please either email me at division902@hotmail.com OR post your breif story here along with contact information. I hope to have an email ready to be sent out to
1. 60 minutes
2. 48 hours
3. Dateline NBC
4. Oprah

and I would like to add a few more shows to the list to contact if anybody has any ideas.

Thank you SO much!


Julie (wife to Mark 24 w/CF)

 

[Emily65Roses]

You don't have to live anywhere specific, do you? If not, then I'm up for it certainly. Tell me, what exactly am I writing to "share my story" or whatever? Let me know, or feel free to email me. Emily65Roses@yahoo.com
I can also give you my phone number and junk via email if that'll help.
<img src="i/expressions/face-icon-small-happy.gif" border="0">

 

[anonymous]

I want anybody anywhere who is interested and willing. There is no guarantee that we will get anybody whos really interested in doing a story but then again we might. I was hoping to get a very breif "story" on each person who's interested in contributing regarding their Cf diagnosis (age, complications...) and then very breifly what you would bring to the show. Meaning, do you have a "CF soapbox" that you wish you could teach more people about? For example, mine is that although the care/services aren't perfect- most of the time children get much better CF care, medical coverage, medicaid, benefits and such... than adults do. Additionally, I don't think there are enough CF docs willing to follow patients into their adult care, nor in many places is the adult CF system set up the same way as the childrens (at least most of the time, how you can see the dietician, social worker, nurse, doctor, PFT people all in one stop) are and I think that is a major disservice to adults with CF. General awareness is my goal but I feel there are also some specific areas that could be addressed, that is just mine.

Thanks em,

Julie

 

[EmilysMom]

Emily,
You could mention the story about the night we went to the ER and they bumped you back and forth between the pedi Er and the Adult ER because they couldn't figure out where you belonged. (We finally ended up going home and calling an ambulance) CF being a childhood disease but you are an adult....where should you have been treated? That was an interesting night !

 

[JazzysMom]

The ER story is similar for me. I was transferred from our local ER to my CF hospital ER. I sat in the "adult" side for hours & hours. The charge nurse refused to listen to what I had to say & even told me that I am not the only patient she has. I explained to her (through yelling & screaming at this point) that I was aware how an ER works & I was not looking to bump ahead of anyone, but that someone, somewhere in that ER was waiting for me. In the meantime my Mom & first husband were in the waiting room. I got up (gown & all) & went out to get them with security following me. I explained everything to security & within 2 minutes they found the ER doctor who has been waiting for me on the "Pediatric" side of the ER. He had been in touch with my CF doctor who called up to my local ER was I was coming from looking for me. HOURS & HOURS could have been saved if the charge nurse would have just listened to me. I had to resort to a full screaming match, walking out (but coming back) & having security follow me. It has NEVER happened again. Unless I am unconcious I go directly to the floor now.

 

[CFHockeyMom]

Julie,

Great Idea! My CFer would be interested in helping out. He's only 8 but is passionate (if an 8 year old can be passionate about anything other that PS2) about CF awareness. He wants his "Make a Wish" to be a PSA about CF. Let me know if you're interested in including him.

 

[anonymous]

I would like to see someone represent the fact that medical coverage and hospitalizations are only one part of CF. With medical and technological advancements, like lung transplants etc., those of us with CF have been able to extend our lives. Quantity of life is important but I believe one of the major issues that faces CFers is also qualitity of life. It is important to illustrate those of us with CF are interested in advanced education (Masters Degrees and PH'Ds) and that they want to be employed, many of us enjoy working full time and others would like to work full time. Sheding light on these issue may illuminate to prospective employers there is an untapped workforce if they are willing to be flexible-if not now hopefully in the future.

In short CFers want and need to contribute, just like everyone else. And although many of us are, there are many more who could. They just need to be encouraged. They need to know that there is support out there and that truly anything is possible.

If I can be helpful in anyway please feel free to contact me at senatorgraham@yahoo.com

Sincerely,

"Senatorgraham"

"My friends are my estate. Forgive me the avarice of hoarding them."-Emily Dickinson

 

[anonymous]

Sten, I will put that in the "paper"/email that I send. Those are some really great things you pointed out. Since I don't have CF myself, I don't struggle with any of this stuff firsthand (but believe me I have my own issues <img src="i/expressions/face-icon-small-smile.gif" border="0"> ) so I want as much input as possible. I will let everyone know when I put it together and when I plan to send it out, I am thinking two or three weeks. Mom of the 8 year old, that's wonderful, if theres anything specific that he wants mentioned, or wants to write a few paragraphs to include, I would love to have it. You/he can email me at division902@hotmail.com

Thanks everyone,


Julie (wife to Mark 24 w/CF)

 

[anonymous]

If you're interested i would be willing to share a few stories..... you can email me anytime at emeraldmirror@hotmail.com

Ashley 21 w/cf

 

[Starfall99]

Just another idea, you might want to find CF doctors to talk to as well, I know many of them are very dedicated to their patients and helping us naviagte these issues. And since they see so many patients they're probably even more aware of the critical issues surrounding CF care than we are!

My doctor, for example, ran a CF clinic at a large children's hospital for many years. He wanted to expand the clinic to include adult patients as well so we could have continuity in our care instead of being forced to transfer to the adult clinic in a different hospital. The hospital refused, so my doctor just picked up and left and started his own clinic in a different hospital (I believe it was a whole dramatic thing involving him breaking his contract or something)! So, doctors may be able to add some interesting insight to this project as well.

Good luck!!

 

[anonymous]

Ashley, I have finished my final for school (yeah!!! and it's only 1am) so I would love to chat with you sometime. I will send you an email.

Eliana, that is a good idea. I will talk to Mark's current doc as well as his past CF docs-thank you!


Julie

 

[letsrockcfem]

Julie~
I think most of you know I'm in a Detroit based rock n roll band...but what my friends and I have been discussing latelyis how can we ban smoking from bars here in Detroit. NYC and Cali (the whole state??) have done it. I never thought I'd actually be playing gigs but I am almost every weekend and the smoke kills me at every show. I come home after everyshow and jump in the shower and do a treatment then wake up the next morning feeling terrible. I would like some awareness on how second hand smoke really cuts discourages my right to live and long and healthy life.
W
Emily
23 pwcf

 

[julie]

Good one emily, I will be sure to mention that in the letter. I know how frustrating that can be, not firsthand of course but smoking bothers me too in general and there are places Mark and I choose not to go because it affects him so much. I will definately mention that.

 

[anonymous]

Julie -

i think your idea is great, we've all gone through so much!

i would love to get involved, and would totally be up for an interview, etc., assuming something comes from this (i bet it does!). I've actually been interviewed for our local newspaper, and was on the show ZOOM when i was younger for a CF fundraiser a friend and i have had since 1st grade. It was such a great experience, and all though it was such a small thing, i felt like i spreading awareness.

So many people on this website do some many things, just like you are, and it makes me so happy to see everything in progress. I feel so "at home" and feel like i can vent whenever i want.

Sometimes i think of CF as being a mixed blessing/bittersweet, because although its a horrible disease, its allowed me to mature so much faster then my friends, im true to myself, and i have goals in life. CF is a part of me, and contributes to who i am today, im happy with who i am, and if i didnt have CF growing up i don't no that i would be happy with myself.

Okay, so now im babbling, but anyways, please keep us informed on what goes on, and if theres anything i can do, or we can do, just say the word <img src="i/expressions/face-icon-small-smile.gif" border="0"> Im so proud to hear that you are doing this. Best of luck!

-k

15w/CF

 

[julie]

Ok, I have contact information for the following shows:

Dateline NBC
Oprah
60 Minutes
60 Minutes II
MSNBC Health
Lifetime


Are there any other show suggestions that anyone thinks we should contact????? If so, please let me knw, I will get the contact emails so we can "mass email" them and really push for a show-thatnks for everyones ideas and suggestions. I am working on revising the "letter" I wish to send out, and will post it on this site, with the contact information as soon as I hear if anyone has any more ideas. With the letter, feel free to add, modify, delete, or whatever you need to do to make it work for you. It should be posted on here no later than the third week in September (sorry I am going underway for 2 weeks and won't have too much computer access)

 

[anonymous]

Even though my daughter passed away last year, I know what you all go through. My daughter had a lawyer willing to take her case for a transplant. Here in Texas , she was on the Star program but they will not pay for a transplant so she would have had to go back on medicare for the transplant to be covered but then it would not cover all of her medicines. Before she turned 21 she was on our insurance but once she turned 21 they dropped her. I also remember when she turned 18 medicare and her SSI were going to be droped because they said her medicines sustained her and that she could find a part time job . Like with a part time job she could afford her medicines. We fought and won but if wasn't easy. Sometimes I think if she would not had to fight everyone maybe her life would have been longer. I don't know if I could be of help to your cause but if I can. You can e-mail me at Loleta22@aol.com.

 

[proudmom2lilCFer]

I would love to share my unique story about my son and his crazy chromosomes. He is definately a rare one. But, whatever happens, I would love to see something about CF. I think it is so important that people are aware of this disease, and the amazing people that live with it everyday. Good luck!!

 

[anonymous]

Julie-
I would love to be a part of this. I have already tried to contact many of these shows to get the word about CF and transplant out there...but to no avail. I think that could add an interesting side to our story, the aspect of transplant and what happens when that is the only option. I would love to write something. I will put something together if this aspect interests you. I have a busy week coming up as it is the first week of classes for me (and I haven't been in school in 15 months...so I have to adjust to the workload). I will try to get something to you by the beginning of next week.
Thanks
Margaret
Double lung tx 11.11.04

 

[julie]

Mother of the son who passed away, I will be emailing you this week. Margaret, I would LOVE to include something like that when I send them a show idea. If it's something you can type up then copy and paste here, as well as email to me (in a word format) that would be great. That way, when others send in their "show ideas" (I am gathering proper mailing addresses right now, there aren't too many shows who accept ideas via email, them want them snail mailed) they can include your story if they wish. If anyone else wants to submit their "ideas" or stories this way, please do the same (post on here and email to me in a word format) and remember to include your contact information in case someone from the network wants to get ahold of you directly.

 

[IG]

If you need anybody else I'm willing to help, although I don't know in what capacity I'd be useful. Other than the whole double lung transplant thing [with a hearing loss due to medications] and the young factor. [had it 12 days after I turned 17]. Anywho just thought I'd let you know.