Wednesday, November 18, 2009

Pulmonary Hypertension Awareness In Davidson County NC

I have waited a few days to post this.The truth is I really want to be in DC right now with the patients for advocacy day,but I know we don't always get what we want.I was however able to speak to an editor of a free magazine that is distributed to over 100 locations through out the county I live in.It is called Davidson Focus.They used my story on Pulmonary Arterial Hypertension with some pics from our learning day last week. There will be 22,000 issues of this magazine given to all the hospital,doctors offices,herbal and vitamin shops,and physical therapy centers,etc..Hopefully one person will read it and learn something .
Here is the link to the pdf page :
I am on page 20 I believe.if this does not work then go to :
Click on see all stories and it will let you download the story as a pdf file.I hope this works.
Have a great day.Happy Awareness Month !!!
Peace Phamily

Saturday, November 7, 2009

November is Pulmonary Hypertension Awareness Month. Pass it on!

When I first heard I had PAH,I felt totally overwhelmed and went into denial.The information the doctors gave me that day was too much and way too scary.I had just had my first cardiac cath.I thought they were mistaken.Not me ...No way !
The first thing I did after that was to cry.I had also been told it was very rare and the only other person that had it in the area,actually lived in Massachusetts and she had just had a heart/double lung transplant.
At that time there were so few of us in the country,I relied on the people I met at the transplant support group.There were no groups or even websites for Pulmonary Hypertension available.I felt very alone with my diagnosis.Even so I stayed connected to these people because they gave me hope.Then my brother in New York was diagnosed followed by my sister.We had each other to talk to,but that was a few years after I was diagnosed.
Today I am a co-leader to a PH Support group.I have many friends all over the U.S. with this disease.I no longer feel alone and I my life is full of hope !!
The best advice I heard from everyone was to listen to my doctors and fellow patients.Take extra good care of myself and change my life style.It took me awhile,but that is exactly what I did.I cleaned up my act,lost weight,started to exercise and lived life to its fullest a day at a time.
That was over 20 years ago and I still try to live my life my by this advice .I exercise,keep my weight in check,listen to my doctors and stay very connected and involved with my phfriends and phamily.They have saved my life many times and I love them all .My brother passed away 2 years ago from this illness He was a fighter and held on for a long time. My sister is very strong and a fighter as well.We stay in touch with each other and share news that we hear about PH.
For awareness month this year,I am reaching out to more doctors with information on PAH.I am trying to get my story published in a local medical magazine and I continue with the advocacy work that I love so much.My personal goal is to reach out to 5 primary care doctors with info on PH and try to get them involved with PHA.I have already done this with one,4 more to go.
If you have PH or know someone that does,try starting a blog or join the big PH family on face book.Spread the's awareness month !

Thursday, November 5, 2009

Pulmonary Hypertension Learning Day

Tomorrow I will be at a learning day .It has been put together as a joint effort between Duke University Hospital and U.N.C in Chapel Hill.
I was asked to speak in the afternoon,so I will be on the panel with a doctor,nurse and and 2 pharmacist.Wow ! I had no idea it was going to be a panel type thing .I thought it was going to be a small meeting.Anyway it is an absolute honor to do something like this.I will follow up on Saturday and give more details and maybe even pictures.
On another note: Fort Hood.How terribly sad.So many people have been and will continue to be effected by this.I pray that they have peace in their hearts soon.
The irony of it all.A psychiatrist loses it and does what he has been helping others not to do.May God have Mercy on him.

Monday, November 2, 2009

Awarenss Month is Here !!

The picture above is me,Cindy Pickles ,Senator Kay Hagan and Janet Cecil at her DC office-we had coffee and doughnuts together.What a treat !
I know it has been awhile since I posted on here.I got kind of lost doing so many other things.I have found my way back-so here I am .
As I have already said November is Pulmonary Arterial Hypertension Awareness month.I plan on writing everyday about PH.Personal stories,new info etc.
First I would like to begin with an update.I went to Maryland and DC last month .There were three of us from North Carolina and we wanted to lobby.That is exactly what we did.We met with Senator Kay Hagan.We told her about PH,how it effects us,how many patients there are in NC and we asked her to bring our bill H.R. 1030 into the Senate.She said she would take it into consideration.We also met with Jennifer from Senator Richard Burr's office.Gave her all the facts and info and asked the same thing.She passed the info on to his Public Health Expert.We are hoping they will do something together.Following up on this is imperative.
I so enjoy advocacy.I love the whole legal process,going to Washington DC and meeting new people.Doing this has helped me in a way I wasn't expecting.It has boosted my self-esteem.I honestly feel that I can make a difference.We all can make a difference.We are a phamily that cares for each other and holds each other up when we are down.
One of the perks from our trip last month was an invitation to tour the White House.There were 4 patients and 3 caregivers touring the white house on October was totally awesome!
We also got a chance to meet the entire PHA board and fill them in on what we have been doing.
I went to a support group meeting there and got a chance to visit with Ellen for a few minutes and take some pics.It was a great trip.We accomplished what we set out to do.We were also able to drop off a legislative kit at Congressman Butterfield's office.That visit made it official.All 13 reps and both senators from North Carolina have now been presented with H.R 1030.The Tom Lantos Pulmonary Hypertension Research and Education Act of 2009-woohoo !!!!
As of today in N.C. we have 4 co-sponsors and 2 senators considering our bill.I hope and pray that we will get more co-sponsors and get this bill passed.