Saturday, May 17, 2008

Sandy goes to Washington, D C

Good Evening my friends trust you all are well and breathing easy these days. Myself I got a little run down from the big Washington D.C. trip but let me tell you it sure was worth it. It was the first United For Lung Health Advocasy Day 2008. There were 18 various organizations that joined us as well as about 70 participants, patients, caregivers, etc. All the delegates for the states were teamed up and of course I was team Florida. My team consisted of Bob Campbell who is an Alpha 1 patient and John Walsh who is the President & CEO, co - founder Alpha 1 Foundation what an awesome team. Our goal was to meet with various Senators, Congressman/women, Representatives, to spread the message about funding needed for Lung health research, HR 552 Pulmanry and Cardiac Rehab. Act., HR 3904 Family Asthma Act, Environment/Radon increased funding for HR6 The Diesel Emission Reduction Act.

I was asked how COPD/Emphysema has changed my life, well we all know that answer except for the lay person. I heard someone say is Asthma catchy ! The first day I met with Congresswomen Illiana Ros Leichtin was an awesome lady, I know she will help us she was so concerned about learning what she could about emphysema etc., we then met with her staff member Jay O'Callaghan (hope I spelled this correctly) just let me know He to was very concerned and I told him how I live day to day, antibiotics in one hand and a rescue inhaler in the other because I never know when I may have to use on or the other, in fact today I started the antibiotics as I came down with a cold from mingling with so many different follks and being on the airplane and in the airports..

The following day we met with Senator Nelsons staff and then on to Senator Martinez's staff. I feel that we did make an impression.

I was so happy to speak on behalf of those of you who could not make the trip or did not know about the trip, in the future I will be sure to post about anything that you all might be interesed in participating in.

One other bill we did lobby for was HR1282 which expands open enrollment of Medigap to cover disabled Medicare Benificiaries.

That about wraps it up for tonite my friends, Rember till we meet again,

~Inhale 123

~Exhale 1234

Breathe Easy,


Friday, May 9, 2008

Washington DC/ C- Pap ID Tags

Hello my friends..I was doing some surfing about Sleep Apnea which you all know I have as well as many others and found a site that offers ID tags for our sleep apnea carry bag..which by the way is not considered a "carry on" as it is considered a Life Support is not wasted I learned The tag is about 10/5 one side is bold lettered Medical Equipment Identification Tag and the other side: Medical Alert , Respiratory Equipment and gives you the option to note cpap/bipap/vpap/autopap and then list the owners name.

I was happy I found this site especially for my upcoming trip to Washing DC for the first Federal Advocacy Day for Lung Health

This weekend I will be getting everything together lots of info not to much clothing to pack only going to be a few days..but I know the anxiety and stress will be high..I will but my breathing techniques in high gear and think of all of you who could not make it and just hope I make a difference for all of us. Until we meet again my friends remember,

~~~Inhale 123

~~~Exhale 1234

Breathe Easy,


Wednesday, May 7, 2008

Satisfaction Guaranteed !

Good afternoon my friends hope all is well and it is a good breathing day ! The reason I am writing today is that I received a reply about the "Spiriva" capsules it is as follows:" What happens to the little particles when we puncture the capsule" hmmmm good question, I e/mailed spiriva and asked that same question....within minutes the phone rings..yup it was the folks from Boehringer Ingelheim replying to my query.

Here is their reply: Once the capsule is punctured the minuscule particles are usually caught in the "screen" of the Handihaler and if for some reason the screen does not catch them they are ingested..causing no harm as they are a hard gelatin and not plastic...I read the "Patent's Instructions for use" it does indicate that "Spiriva" is a light green, hard gelatin capsule.

I asked about the empty capsules she asked if I had them, I was glad I did keep them, I mentioned to the gal that I had contacted her company before and the reply was that they could not do anything about them..she said I apologize for that, do you have the capsules if you do I will send out an envelope to you to send them back to me. to be here is the best part I also saved the blister package which had the lot # on it....She asked what pharmacy I had the prescription at I told her, she said I will call them and call you right back, which she did within the next 5-7 days there will be a "Courtesy Replacement" for me...Wow!

I have to tell you, the gals I spoke with were very nice and understanding

I am glad I saved the empty capsules. If anyone has the same problem save the empty capsules, contact the Company...Oh one more thing always check the chamber to make sure nothing is blocking it..
I made a point also about the "Thrush" she appreciated me bringing that up and will look into it.. I hesitate to use it cause how bad my mouth gets, and if I don't use it I have a difficult time breathing !...I choose to live with the "Thrush"...The best thing to do is be sure to rinse your mouth it is soooo important. Also she asked how I use the "Spiriva" I told her I inhale the capsule, then exhale, without using the "inhaler "
I then inhale and exhale again..that is the proper way to use the "Inhaler"
So, until we meet again my friends remember;
~~~Inhale 123
~~~Exhale 1234
Breathe Easy,