Friday, February 26, 2010

PH awareness on the roof of Africa...

What a great staff meeting this morning!

At 10:00am, I had a scheduled call from Mt. Kilimanjaro by the climbers...the perfect time to include our entire staff.  We knew from their posting yesterday that they were to begin their final ascent from about 15,300 feet at midnight and make the 4,000 foot final push to 19,330 feet about 6 hours later.

Dr. Ray Benza was the first on the satellite phone and thrilled us with three words, "We did it."

He went on to tell us that they reached summit at 6:45am.  He said this was the most difficult physical thing each of them had ever done.  "There were several points on the ascent this morning when we were so tired that the guides had to keep us away from the edge of the cliff... It was astounding at the top of the mountain.  We could see half of Africa.  It was unbelievable."

"The physical constraints we felt at altitude were very similar to what pulmonary hypertension patients feel.  We were breathless continuously.  Today, it was hard to breathe at each step.  We checked our pulse oximetry as we ascended the mountain. At baseline we were doing great, just like normal healthly people, but by the time we were at the top of the mountain, our saturations were dipping into the low 70s, our heart rates were above 120. We were stressed.  We felt exactly what our patients suffer every day of their lives.  It gave us more of an appreciation of what our patients have to endure every day of their lives.  It endeared them to us even more."

Dr. Benza went on to tell us that it was below freezing at the peak.  They only stayed for an hour because they had no water to drink - all their water and food had frozen.  Beginning their descent, they began to double time down the mountain...6,000 feet down in four hours. He described it as being like skiing through gravel.

The biggest surprise was how hard it was.  "We knew it would be hard but we didn't imagine it would be this hard."  He said, exposed to high altitude for seven days, they were even breathless getting dressed.  "It was exactly like our patients. It humbled us quite a bit."

Jessica Lazar was next on the satellite phone.  She described being sick on the mountain, severely dehydrated.  "It wiped out whatever reserves I had for the last two fact, when I was diong the summit attempt, I got separated from the group because I was having exertional syncope which is a little dangerous. I would keep track of which side the cliff was I on and when I felt it coming on, I would fall in the other direction. It took me a bit longer but I was able to get to the top.  The guys were really helpful and stayed with me all the way to the top."

Jessica said the most spectacular view was the first sight of the mountain they were about to climb floating above the clouds.  "At one point," she said, "I saw light and dark and thought it was the clouds but realized it was the mountains. We have so many pictures to share with you."

Before the call broke up, Dr. Frantz spoke briefly about climbing by moonlight and getting to the summit, "the rim of the crater" just as the sun was coming up. 

He described it as being on the roof of Africa.

Listen to the bloggers' daily reports from the mountain on the PHA website or on the climbers' blog. If you haven't already, don't forget to support their efforts!

Monday, February 22, 2010

California x 2 = Kilimanjaro

On Friday I had the opportunity to celebrate the beginning of the Path to a Cure Climb by attending the Actelion Unity Walk in San Francisco.

As the climbers are on Mt. Kilimanjaro, the pace is picking up...both at home and in Tanzania.

Before the walk, Actelion's CEO, Shal Jacobovitz, spoke about Actelion's commitment to patients and their understanding of what the climbers are doing.  I had a chance to thank the Actelion employees for their support and the company for providing a matching fund at a critical time in our organizing process.  Betty Lou Wojciechowski spoke about the importance of Actelion's support of the Climb to patients and families.

Then, over 100 employees poured out of Actelion's headquarters and began a 1.93 mile walk (scaled to the 19,333 ft. of Kilimanjaro), raising over $2,500! Check the slide show.

But, it didn't end there.  Betty Lou rushed back to Southern California for a Unity Walk organized by two support groups - mostly patients.  They walked 1,933 feet and raised $1,933. 
...and here's another slide show.

The climbers climb and the beat goes on!

Wednesday, February 17, 2010

A smile through it all...

In so many ways, on so many days, I'm inspired by our community.

Today's inspiration came in a very different the  form of a snowman...a very special snowman...a PH snowman, complete with oxygen concentrator!

Thanks to Leslie Polss for her unrelenting sense of humor and for sharing this picture of her response to the recent snowstorms - and to her PH.

If you want to see more of Leslie's creativity and spirit, you'll find it in abundance on her website.  I hope you'll enjoy her S.O.B. (Short of Breath) cartoons.

Thank you for the smile, Leslie, as always.

Tuesday, February 16, 2010 expanding frontier

The building permits went up yesterday on our office building on Roeder Road.

So, it's happened again.  For the sixth time in eleven years, PHA has filled its space and is getting ready to deal with it.
Our Maryland history started out on my family's porch in 1999.  It took a very short time for Laura, my wife, to point out our space limits there.  Then, we went to Silver Spring Avenue where we grew to a staff of five part-timers with three desks and four chairs.  I knew it was time to leave the 400 sq. ft. and roaches behind when all five staff were in at the same time one day and one of them was working from his laptop sitting on a box of brochures

I remember an early visit one day from board members Linda Carr and Judy Simpson.  Linda swallowed hard and said, "This is lovely".  I think that's the only lie I ever heard her tell.

We went from Silver Spring Avenue to Sligo Avenue, two blocks away.  The building was old but it was well kept by the landlord who was an octogenarian known in the area for his pride in his properties.  Most importantly, the price was under market and what we could afford.

With 1,200 sq. ft. we had enough space to grow.  Soon - at the beginning of 2001 - I was converting staff (including myself) from part-timers to full-timers.  With the support of the community and a strong growth in patient programs, though, it didn't take long for us to fill that half-floor space.  At about the time we leased the rest of the floor, the building was sold...and PHA learned a lot about how quickly a building could go downhill.

Over the next two years, we had more than 35 leaks in our top floor space.  The heating and air were a wreck and temperatures in the office varied with the seasons - from the 50's to the 80's.  At about the same time we were able to break the lease, we were bringing in the health department to deal with growing mold.  I was proud - and, I must admit, amazed at most of our staff's ability to stay true to the cause and continue to support our growth in the midst of a really difficult situation.

Our next move was a big one and we thought it would sustain us for quite awhile.  We leased 6,100 sq. ft. on Roeder Road, five blocks from Sligo Ave.  PHA continued to grow, and even faster in a good environment and, with a staff in the 20's, we filled that space too.  In 2007, we added another 2,000 or so sq. ft. on the floor above our main space.

Surely, that would be enough!

Well no...  We were soon expanding our medical education, meetings and publishing programs.  Membership and patient programs were also growing very fast.  Staffiing grew to the mid-30's and a very sophisticated year-round internship program has been flourishing and adding new value.

So, a few months ago, our board approved yet another move.  It was a good time.  In this economy, we were able to negotiate approximately 40% more space at about 18% more cost.  Renovations started yesterday and in mid-March, we hope to be reconsolidating our entire staff on the 11,000+ sq. ft. we'll be moving to on the top floor of our current building

And that will be our last move for awhile.  We hope.

Monday, February 15, 2010


Now it begins...

Dr. Bob Frantz of the Mayo Clinic and Dr. Ray Benza and Physicians Assistant Jessica Lazar both from  Allegheny Medical Center in Pittsburgh are packing up and getting ready for their flight to Tanzania.

Once there, they will prepare to summit the 19,330 ft. Mt. Kilimanjaro, the highest mountain in Africa nad the tallest freestanding mountain in the world. Their adventure will begin on February 19 and go through Feb. 27.

During the past two months, it's been my privilege to be part of a team that has met weekly by phone to help turn their climb into an opportunity to increase awareness of PH in the U.S. and globally and to raise a minimum of $100,000 for PHA's research and patient-serving programs.

We have heard about the medical professionals' rigorous training for this climb.  We have learned about their understanding - and intention - that, at the heights of Kilimanjaro, they will experience the symptoms of pulmonary hypertension their patients live with every day...the better to offer informed and empathetic treatment. We have been inspired by their blogs.

Their itinerary, as produced by their guides and sent by Jessica Lazar, is below but their climb is already a success...

Tremendous awareness is already buiding.  You can find links to some of the press on PHA's Climb pages

They are also very close to their fundraising goal...within $7,000 as I write this. You can help get them over the top by visiting their Donation page or attending one of the Unity Walks being held to support the Climb.

The Climbers will be electronically equipped and will be doing interviews (I'll be doing one of those interviews on Feb. 23) and posting updates daily from the mountain.  Check their blog and the PHA website to follow their progress,

Here's their itinerary...

DAY 1 (Feb 19)

Arrive anytime at Ilboru Safari Lodge in Arusha, Tanzania. With prior arrangement, airport pick up and private transfers to the hotel are available from Kilimanjaro International Airport (JRO), or simply make your own way by taxi. We will gather in the evening for a pre-climb briefing and an equipment check. We will also confirm you have the appropriate mandatory medical coverage and travel insurance.

DAY 2 (Feb 20)

We take a ride to Londorossi National Park gate to complete the necessary registration formalities, before driving a short distance on a steep track through farmland and plantations (9,200 ft). We continue climbing steadily on foot through shrub forests and stands of giant heather to reach the rim of Shira Plateau (11,000 ft). The views across the surrounding plains open up as we approach our first camp, Simba Camp (11,600 ft).

[4-5 hours walking]

DAY 3 (Feb 21)

Today is an easy day to help acclimatisation and to explore the grassy moorland and volcanic rock formations of the plateau. We walk to the summit of Shira Cathedral (12,300 ft), a huge buttress of rock surrounded by steep spires and pinnacles. There is a tangible sense of wilderness here, especially when the afternoon mists roll in. From our camp near Shira Hut (12,600 ft), we take in the unforgettable views of Mt. Meru as she floats among the clouds.

[4-5 hours walking]

DAY 4 (Feb 22)

The morning walk is a steady climb away from the moorland of Shira Plateau to reach the broad upland desert beneath the Lent Hills, with expansive views in all directions. After lunch in our camp close to Moir Hut (13,800 ft), there is the option of a more strenuous afternoon walk to reach the summit of the Lent Hills (15,400 ft). We can explore the area beneath the Northern Icefields, a remote place rarely visited by tourists, with unusual views of Kibo. Few visitors get to this remote corner of Kilimanjaro.

[3-6 hours walking]

DAY 5 (Feb 23)

We enjoy a morning of gentle ascent and panoramic views, walking on lava ridges beneath the glaciers of the Western Breach. After lunch at our Lava Tower (14,900 ft), there is a steep but spectacular afternoon walk on the rocky lower slopes of the Western Breach. This afternoon excursion is highly recommended for acclimatisation purposes and for the superb views of hanging glaciers on both sides of the Breach.

[4-6 hours walking]

DAY 6 (Feb 24)

A steep descent into the bottom of Barranco Valley (12,800 ft) leads us to the famed Barranco Wall and its steep climb. At the top the undulating trail crosses the flanks of Kibo with superb vistas of the Southern Icefields. The terrain is volcanic scree, with pockets of vegetation in sheltered hollows, and a powerful sense of mountain wilderness. Our next camp is at Karanga Camp (13,100 ft), the last water point on the approach to the summit.

[5-7 hours walking]

DAY 7 (Feb 25)

We follow an easy path on compacted scree with wide views that gains altitude unrelentingly to reach Barafu Hut (14,800 ft) for lunch.

There is a short acclimatisation hike to the plateau at the bottom of the southeast valley (15,700 ft). The remainder of the day is spent resting in preparation for the early morning final ascent.

[3-5 hours walking]

DAY 8 (Feb 26)

We start our ascent by torchlight about 1 a.m. so that we can be up on the crater rim by sunrise. The steep climb over loose volcanic scree has some well-graded zig-zags and a slow but steady pace will take us to Stella Point (18,800 ft), in about five or six hours. We will rest there for a short time to enjoy the sunrise over Mawenzi. Those who are still feeling strong can make the two-hour round trip from here along the crater rim to Uhuru Peak (19,345 ft), passing close to the spectacular glaciers and ice cliffs that still occupy most of the summit area. The descent to Barafu is surprisingly fast, and after some refreshments, we continue to descend to reach our final campsite, Millenium Camp (12,500 ft).

[11-15 hours walking]

DAY 9 (Feb 27)

A sustained descent on a well constructed path takes us through a lovely tropical forest alive with birdsong and boasting lush undergrowth with considerable botanical interest. Our route winds down to the Kilimanjaro National Park gate at Mweka (5,400 ft); and on through coffee and banana farms to Mweka village, where we are transferred to Ilboru Safari Lodge in Arusha.

[4-6 hours walking]

DAY 10 (Feb 28)

After breakfast, we can arrange for a private transfer or taxi to Kilimanjaro International Airport (JRO)

Monday, February 8, 2010

...and then there's staying at home

My last blog was about  the complications of travel.

Staying at home may not be much better.

I live in Takoma Park, Maryland which is 10 minutes from PHA's Silver Spring office and right next to Washington, DC.

Coming from NYC many years ago, I've always appreciated the "more reasonable' snows we have in this area.  Enough for some occasional white...not so much that shoveling becomes a major part of life.

At least, that's the way it was until this year.  We just had our second major snowstorm in six weeks.  And, this one was a doozie!   Starting Friday evening and going through late Saturday, we got about 30 inches - the largest drop in my 35 or so years in the area.

Well, shoveling has become a major part of my (and everyone else in the area's) least this weekend.

At any rate, I'm all dug out and was able to slide my way to work today.  Next snowstorm is scheduled for tomorrow night.

Traveling too much...

So, here's a story about nothing much except maybe how frazzled my travel is becoming.

In the last week of January, I made a short trip to San Francisco.  I had a couple of meetings, followed by a talk at a conference.  The schedule went long and my presentation was delayed by about an hour.  When I finished, time for my return flight was tight and I raced back to the airport.

Once at SFO, the airport security line wasn't too bad and I got through in 15 minutes, leaving me 15 minutes before boarding.  As soon as I reassembled myself, I started making calls and looked for gate 85.  Overhead was a sign for gates 75-90 and in front of me was a wall.  Focused on my call, I saw an escalator to my right.  I got on and - halfway down - turned around and saw the wall had opened up just past the escalator.

I turned back and looked down...and saw the security desk.  When I got to the bottom, I saw said to the TSA officer.  "I took the escalator down by mistake.  I was the only one on it and you were watching me.  I didn't pass you.  Can I turn to the right in front of you and go up the stairs?"

"No.  Once you're on the escalator you're out and have to go back through security."

Oh well, I did my double security and made it to the gate in time to be the last person on before they closed the doors.