Wednesday, December 23, 2009

Some days are a joy...some are not

We celebrate so many advances in the treatment of PH that sometimes we forget the other side of the coin.

Yesterday was a sad day.  Within a two hour span we learned of the passing of two good people, two good friends, Phil LeGrande and Wendy Bockhorst.

May they rest in peace.

Debbie Castro wrote to fellow staff about Phil...

Dear Staff,

For four years, Phil donated hundreds of hours, lots of energy (of what he DID have), tons of inappropriate jokes, and even $125 to PHA during an urgent matching funds competition on Facebook. He was a support group leader, an advocate on the Hill, and one of our most steadfast and reliable daytime office volunteers.

He usually came into the office with a great attitude, in spite of always having to take breaks to rest. Of course, he came in feisty some times, but he always wanted to make a difference in the community and to help others. He came in with body aches and pains and never complained about it. He complained about everything else, but never about his pain. I loved him for his ability to LIVE life and to expect great things out of himself and others around him.

About a year ago, he stopped responding to our emails, calls, and even letters. It turns out that he was just too sick battling his PH and perhaps residual symptoms of lung cancer.

I posted a message about Phil LeGrande passing away on FaceBook and heard back immediately from at least 4 of our old volunteers. Everyone is saddened to hear this news.

Jess McKearin wrote to us about Wendy...

Dear all,

I’m very sad to report news that Wendy Bockhorst passed away earlier today. Her husband Bill called to let us know. Wendy was a PH patient, Support Group Leader in Phoenix, Ariz., advocate, special events organizer and an all-around wonderful woman.

Wendy definitely was an example of hope to other patients. Bill said that Wendy always made a point to tell others that she lived with this disease and wanted to make the most of that opportunity to impact others’ lives. They were also recently remembering the 2008 Conference together and Wendy was talking about how excited she was to attend next year’s. She was already planning for her 2010 Cure PH Casino Night – her 6th special event overall.

She spoke of why she loved planning events: “One main reason that I get involved through special events is because my PH is genetic…if I can continue working to raise funds for and awareness of this disease, then maybe the next generation won’t have to suffer as much. So much has been done in recent years, and PH treatment options now are just unbelievable... By continuing to stay involved, one day we can find the cure.”

Please don’t hesitate to offer other thoughts or memories of Wendy if you’re willing to share. I’ll create a condolence card for us to sign tomorrow.

The fight goes on.

Friday, December 11, 2009

Kahina's story...

Thanks to  Christine Dickler, PHA's Associate Director of International Services, for this guest blog...

During the holiday season, it’s more apparent than ever how lucky we are to have so many friends and partners in this vibrant community. With hundreds of support groups, dozens of online community groups, and local events to draw us together, we can take stock of the incredible people we meet thanks to this otherwise difficult disease. And new connections are being made every day, in places much further than we might ever have imagined…

PHA’s International Services department is an active hub for patients, doctors, and associations outside the US. The connections PHA makes with the global PH community enhance and inspire our work every day. This fall, we were contacted by a young woman in Algeria who was in search of medication for her mother. Kahina explained that though the drug was approved in her country, her mother frequently did not receive the deliveries in time – an obstacle that left her without treatment for days, weeks, even three months, while the life-saving drug was locked up in customs. Every few months for more than two years, Kahina travelled to the capital to demand that the government approve funding to pay for the next supply, that the hospital place the order well before it was needed, and that customs release the treatment promptly.

As we learned more about her mother’s immediate needs – medicine that would dramatically improve her pressures and keep her well – Kahina’s story revealed a much greater need: advocacy for every patient in Algeria and medical education to ensure adequate treatment. From what Kahina knows, there are only three or four PH patients identified in all of Algeria, and these patients, too, must endure periods without proper therapy.

In the story of Kahina’s mother, there are many heroes. There is the doctor in France who finally recognized her symptoms, allowing her to begin returning to her life as an active painter. This doctor continues to advise her local physician, who must perform tests she doesn’t fully understand in facilities that aren’t fully equipped for the task. There are the government officials who, not understanding the severity of PH or the importance of the expensive drugs, approve an order that costs 20 times more per month than the average monthly income. There are the pharmaceutical representatives who ensured that an ally was placed in the central pharmacy so that medicine would be ordered correctly, and in advance.

And of course, there is the story of a daughter who made friends across the globe in order to keep her mother safe – even if it means taking on new battles! With one of her mother’s ten drugs made more accessible, Kahina says that she’s start fighting to get another approved for reimbursement, saying “…another issue to be solved , I’ll try to do my best again!”

Tuesday, December 1, 2009

A Thanksgiving message...

On Thanksgiving day, I checked e-mail not expecting to find much.

How wrong I was.

It was a pleasure meeting you last week at the Pulmonary Hypertension Summit at the Cleveland Clinic. I was there a few years ago when you spoke at that summit, but did not get to meet you then. I want to thank you again for all the work that you do. It means so much to me and to other patients with this terrible disease. On this Thanksgiving day, I am very thankful for all the things in my life that I am blessed with. I am also thankful for people like you and the PHA and for the amazing work that you do. I thank you from the bottom of my heart (and lungs!). May you have much more continued success with the PHA. I have attached a picture of you and I from the event and also a picture of myself with Merle and my doctor, Dr. Minai. Happy Holidays!

Maria Martuccio

The thanks is all mine Maria.  You motivate me. You motivate our staff who I shared this with. You and people like you are the drivers of our ever-accelerating vehicle.  Thank you.