People make change...

We usually write about end points...the things that happened.  The reality is that the outcomes and results we celebrate are most often built upon long and hard work.  Today, my blog is about a year's long process that, in truth, began quite a bit before the 2006 event with which I open and will no doubt continue long after this month's victory with which I close...
In 2006, Carl Hicks (then PHA board chair-elect), Dr. Ramona Doyle (then at the Vera Moulton Wall PH Center at Stanford, Congressman Tom Lantos (who has since passed), our Washington representative Gavin Lindberg, myself and others went to the Department of Health and Human Services to meet with their leadership and discuss our concerns about the then new PH transplant standards.  The new rules moved PH patients lower on the priority list...based on interpretations of information that our medical leadership and PHA disputed.

HHS was engaged and the meeting led to follow ups with the United Network for Organ Sharing (UNOS).   UNOS is the private, non-profit organization that manages the nation's organ transplant system under contract with the federal government.

PHA's medical leadership worked hard to get it right and to build some appropriate flexibility into the system for PH patients.  Their interest led to increased activity within the influential International Society of Heart and Lung Transplant (ISHLT) and, for the past several years, these doctors have been building a strong and active assembly within ISHLT and continuing to engage UNOS.

In early-August, PHA circulated the following message to over 600 physicians who are members of the PHA medical group, PH Clinicians and Researchers.  (The LAS mentioned in the note refers to the Lung Allocation Score.)

Physicians PHA works with, who are also involved with the REVEAL Registry, gave a presentation at the ISHLT in 2009. Following that, UNOS invited them to speak to the thoracic council about their results on the LAS score. Dr. Ray Benza was then asked to be on the thoracic board and began to advocate changes in the LAS for PH patients. Dr. Benza reports that the Thoracic Board - particularly its current chair, Mark Barr - was very receptive. UNOS’ new policy on submitting lung allocation score exception requests for candidates diagnosed with PH appears below.

Dr. Benza has asked us to circulate this to the PH medical community as quickly as possible since it may impact current and future patients awaiting transplant.
PHA thanks and congratulates the physicians who have been building a rapidly growing and effective PH section within ISHLT, including Drs. Benza, Frantz and Park and others and Dr. Benza for his work on the UNOS thoracic board.

The change is partly described by UNOS, as follows:

Lung transplant candidates diagnosed with pulmonary hypertension (PH) and who meet the following criteria may qualify for an increase in their Lung Allocation Score (LAS):

1. Patient is deteriorating on optimal therapy, and

2. Patient has a right atrial pressure greater than 15 mm Hg or a cardiac index less than 1.8 L/min/m2.

We hope this decision will increase options for more patients living with PH and needing to consider the transplant option. 

People make change.  We benefit from their persistence and thank them for their dedication.

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 days....in 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!

Godspeed...

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)

Path to a Cure...

February 19th to 25th.

Those are the days that Drs. Ray Benza (Allegheny Hospital, Pittsburgh) and Bob Frantz (Mayo Clinic, Rochester, MN) will be climbing Mt. Kilimanjaro.  Their goal: to raise $100,000 for PHA research and patient-serving programs.

Today, with seven staff, we had a run through on ways we'll be able to help.  Jess McKearin reported the web pages are up, as are the donation page and the Unity Walk page.  

Our goal for the Unity Walks is to have 25 walks around the U.S. in support and coordination with Dr. Frantz' and Dr. Benza's climb. Besides helping to meet their fundraising goal, the Unity Walks will raise awareness of PH in communities around the U.S.

It was a pretty exciting get together, as we added more and more ideas.  Soon, word will be out to our entire community - and beyond.  I guess inspiration breeds inspiration...and we are all inspired by what these two doctors are doing to support our common cause.

Some years ago, a doctor told me not to expect much from doctors financially.  He said that his peers saw what they did with their patients every day as their contribution.  It made sense, I guess, but that's not the way it is at PHA...and our community is strengthened by that.