On January 29, 2010, plans had been made to have a Unity Walk to honor and make note of Pulmonary Hypertension Specialists and Pulmonary Hypertension Association Scientific Leadership Council members Drs. Ray Benza and Robert Frantz, along with Jessica Lazar, PA, who will know firsthand what it means to be breathless. In a joint effort to raise global awareness of PH, they will tackle the ultimate challenge: climbing Mount Kilimanjaro, Africa's highest mountain! Dr. Benza and Jessica from Allegheny General Hospital are not doing this just for those patients they have but for all those PH patients in the PH community -- as is Dr. Franz from the Mayo Clinic.
Western Pennsylvania is hill country, not like Mt. Kilimanjaro but very hilly, and Pittsburgh itself was built on or around hills. They have many stairways to get from one street to another –- a totally different level and very steep -– we’re not talking second story to a home level; we are talking up the side of a hill level. It is also Steelers Country and if you are into football you will know what that means. Pittsburgh is also known as the City of Champions - this past year the Steelers won the Super Bowl and the Penguins won the Stanley Cup. Woo Hoo!
Now for the Unity Walk, we were to meet in the Sandusky Waiting room where Michele, nurse specialist for PH, took us to the eighth-floor PH research area. Because we’re in Western Pennsylvania during the month of January, our flier advertising the walk stated, “weather permitting.” Some days in January can be balmy, which would be just above freezing; this was not one of those days. It was 8 degrees when we left home with a wind chill of -2. THAT’S COLD! The Weather Channel predicted snow flurries in the surrounding area, so I was not expecting the usual turnout, nor even as many of those who had signed up.
We went to the conference room and in the center of the table was a cupcake Mt. Kilimanjaro –- really cute and very tasty. At one end was a mountainous stack of lunch boxes for our post-walk luncheon; the other end had backpacks with a water bottle, stress ball and an exercise stretch band. We were set and ready. On the white board was a hand-drawn Mt. Kilimanjaro with stick people of Dr. Benza, Dr. Frantz and Jessica with “Mt. Kilimanjaro or Bust” written in the mountain.
Jessica Lazar, a physician assistant at Allegheny General, is going on this infamous climb (be sure to read her blog posts) and she told us of her training involving climbing those stairs in the ‘Burgh, climbing the stairs at the hospital. She mentioned that when Dr. Benza makes his rounds along with the fellows, they use the stairs to the 16th floor. Jessica smiled when she told us that some of those fellows are losing weight while being in training with Dr. Benza.
She explained the equipment required: special shoes/boots, wool as opposed to cotton, layers of clothing (but not too much, or you will sweat, and that could freeze). The material required for climbing has to be something that will keep the moisture away from your body, not keep it close to you –- think of a bath towel and how that holds moisture. “Cotton kills” is a term used by climbers.
Through these past months of training Jessica has climbed “hills” around Pittsburgh, climbed those steps mentioned earlier and she learned to adjust her clothing as the weather went from fall to winter as Mt. Kilimanjaro will go from the jungle heat to an arctic freeze. She showed us a little lamp, like a miner’s lamp (remember, we’re in coal country, too), and this one had stretchy string to put around her head, as even one with a leather strap or a “hard hat” type would add extra weight. The climbers weigh their clothing and what they will be carrying in their backpacks. The weight they carry when they start in the morning may only be a few pounds, but by evening it will feel like hundreds of pounds. So every ounce counts. That reminds me of my Flolan pouch; it may only weigh 4 or 5 pounds, but some days it feels more like 20 pounds -- and, again, that is a reason these clinicians are doing this: to feel what we are going through to raise funds for research and awareness of this dastardly disease. Jessica’s emotional reason why she is doing this put a lump in my throat.
She told us of the packers or guides that are required to trek along with our climbers. They will carry the tents, major food and other heavy equipment. When at the lower levels of the mountain, you are not allowed to go off alone, as those hazardous animals are on the loose –- lions and leopards and snakes, oh my. At a higher level above the jungle, they are still some critters to be aware of. Above the tree line, no hazardous critters –- just bitter cold.
Each day, a climb will consist of approximately eight hours up. They reach a level and go off to the side to adjust to the altitude change, and Jessica told us it’s like taking two steps up, one step down and a side step along the way. I wonder if they’ll make a Mt. Kilimanjaro two step dance ;o). The packers set up the tents and prepare their evening meal. The climbers will carry enough food and water for a day’s use, along with several just-in-case items.
This climb can create altitude sickness and it is recommended they drink 4-5 liters of water per day, and eat lots of food for energy. A common symptom of altitude sickness is loss of appetite, nausea, and vomiting… and if they don't eat and drink, the altitude sickness gets worse. She told us how they may not realize this symptom and how they have to rely on each other when and if they get affected to do what they can to overcome this illness or it’s a quick trip back down the mountain. Jessica has given up caffeine now, as stimulants can create an issue. She said it’s better to have withdrawal symptoms now then when climbing up that mountain. Jessica plans on taking her oxygen sats when she reaches the summit, and one of our members volunteered a pulse ox (light weight) for the climb. The climbers also hope to be able to communicate with PHA on a regular basis while climbing.
The last climb to reach the summit will take approximately 15 hours, and this will be done at night as the bright sunlight will be too overwhelming for a day climb. The climb down will take one or two days as opposed to the seven days it takes to reach the summit. Climbing down is a reversed strain on those leg muscles and the knees, so caution is still in vogue. We thanked Jessica for sharing her thoughts with us and let her know how much we appreciated what she and the doctors are doing for all of us.
Michele, Carrie and Lynn (who work at AGH) then introduced us to staff who work in the research department of the Gerald McGinnis Cardiovascular Institute at Allegheny General Hospital, and we gathered ourselves up for our Unity Walk -– a tour of the PH research department. Our first stop was the Bio Engineering Lab where Dennis Trumble, a bio engineer, showed us a heart made to scale and pointed out the pulmonary arteries, the aorta and other tubes either going to or from the heart. He also showed us an oversized heart and explained why it could be in that condition. Dennis then showed us a pacemaker, a hydraulic pump of sorts and another medical device created at AGH that he is working on –- all these to help the heart and lungs.
We then went on to Dr. Benza’s storage room, where he has DNA samples stored in several freezers for use in PH research. The room is specially equipped to handle the heat from the freezers, so the room is basically at an even temperature.
Then across hall to the Gene Therapy Lab. Dr. Michael Passineau showed us various testings in progress and equipment that is used and how they will benefit us as patients or retard the progression of PH. There is a new not-ready-for-trial-as-yet med and the catheter used on the rats is about the size of human hair. When viewed through the microscope, it looks about the size of a thin straw. Some of us were able to take a peek. It truly is amazing what is going on in their research department. The rats are doing well.
Jessica then took us down the hallway with a mural her son’s daycare classmates made: a construction paper giraffe and a lion, whose mane is made from their hand prints. “They done good."
Now back to the conference room for lunch and the raffle drawings. We were told that the baskets were brought to the cafeteria each day with special totes in front to know which basket you want to win and where to place your ticket. There were a dozen or more baskets to choose from: restaurants, wine and cheese, books, coffee, attend a sports game and a doggie basket (the basket itself was a doggie bed; it also had a food dish and various other goodies a dog would enjoy). :o) several others as well. AGH collected $1,300 from the raffle drawing.
The Pittsburgh goal for the Unity Walk was $2,000 and each support group across the country was asked to try to raise $1,000. Actelion is sponsoring a dollar-for-dollar match of up to $50,000 in donations. The climbers’ goal is to raise $100,000 for PHA’s PH Research Programs and patient serving programs; we are very close to reaching that goal and many of the support groups haven’t even had their Unity Walk as of yet.
My agenda was very brief but I did ask all to call or write their legislators often to either co-sponsor HR 1030 or S2803. I shared information about PHA’s upcoming International Conference in California in June, and for folks to get their flu shot.
I want to thank United Therapeutics for providing our lunch for the day, also Gilead Sciences for providing our backpack specials, and especially the nurses and staff at Allegheny General Hospital for all the help they provided prior to and during this walk. Those members who came submitted the contributions they collected, several of the pharmaceutical representatives who participated added their donations and our total for the day was $3,250 –- with donations still coming in!
Read their blog: On January 29, 2010, plans had been made to have a Unity Walk to honor and make note of Pulmonary Hypertension Specialists and Pulmonary Hypertension Association Scientific Leadership Council members Drs. Ray Benza and Robert Frantz, along with Jessica Lazar, PA, who will know firsthand what it means to be breathless. In a joint effort to raise global awareness of PH, they will tackle the ultimate challenge: climbing Mount Kilimanjaro, Africa's highest mountain! Dr. Benza and Jessica from Allegheny General Hospital are not doing this just for those patients they have but for all those PH patients in the PH community -- as is Dr. Franz from the Mayo Clinic.
Western Pennsylvania is hill country, not like Mt. Kilimanjaro but very hilly, and Pittsburgh itself was built on or around hills. They have many stairways to get from one street to another –- a totally different level and very steep -– we’re not talking second story to a home level; we are talking up the side of a hill level. It is also Steelers Country and if you are into football you will know what that means. Pittsburgh is also known as the City of Champions - this past year the Steelers won the Super Bowl and the Penguins won the Stanley Cup. Woo Hoo!
Now for the Unity Walk, we were to meet in the Sandusky Waiting room where Michele, nurse specialist for PH, took us to the eighth-floor PH research area. Because we’re in Western Pennsylvania during the month of January, our flier advertising the walk stated, “weather permitting.” Some days in January can be balmy, which would be just above freezing; this was not one of those days. It was 8 degrees when we left home with a wind chill of -2. THAT’S COLD! The Weather Channel predicted snow flurries in the surrounding area, so I was not expecting the usual turnout, nor even as many of those who had signed up.
We went to the conference room and in the center of the table was a cupcake Mt. Kilimanjaro –- really cute and very tasty. At one end was a mountainous stack of lunch boxes for our post-walk luncheon; the other end had backpacks with a water bottle, stress ball and an exercise stretch band. We were set and ready. On the white board was a hand-drawn Mt. Kilimanjaro with stick people of Dr. Benza, Dr. Frantz and Jessica with “Mt. Kilimanjaro or Bust” written in the mountain.
Jessica Lazar, a physician assistant at Allegheny General, is going on this infamous climb (be sure to read her blog posts) and she told us of her training involving climbing those stairs in the ‘Burgh, climbing the stairs at the hospital. She mentioned that when Dr. Benza makes his rounds along with the fellows, they use the stairs to the 16th floor. Jessica smiled when she told us that some of those fellows are losing weight while being in training with Dr. Benza.
She explained the equipment required: special shoes/boots, wool as opposed to cotton, layers of clothing (but not too much, or you will sweat, and that could freeze). The material required for climbing has to be something that will keep the moisture away from your body, not keep it close to you –- think of a bath towel and how that holds moisture. “Cotton kills” is a term used by climbers.
Through these past months of training Jessica has climbed “hills” around Pittsburgh, climbed those steps mentioned earlier and she learned to adjust her clothing as the weather went from fall to winter as Mt. Kilimanjaro will go from the jungle heat to an arctic freeze. She showed us a little lamp, like a miner’s lamp (remember, we’re in coal country, too), and this one had stretchy string to put around her head, as even one with a leather strap or a “hard hat” type would add extra weight. The climbers weigh their clothing and what they will be carrying in their backpacks. The weight they carry when they start in the morning may only be a few pounds, but by evening it will feel like hundreds of pounds. So every ounce counts. That reminds me of my Flolan pouch; it may only weigh 4 or 5 pounds, but some days it feels more like 20 pounds -- and, again, that is a reason these clinicians are doing this: to feel what we are going through to raise funds for research and awareness of this dastardly disease. Jessica’s emotional reason why she is doing this put a lump in my throat.
She told us of the packers or guides that are required to trek along with our climbers. They will carry the tents, major food and other heavy equipment. When at the lower levels of the mountain, you are not allowed to go off alone, as those hazardous animals are on the loose –- lions and leopards and snakes, oh my. At a higher level above the jungle, they are still some critters to be aware of. Above the tree line, no hazardous critters –- just bitter cold.
Each day, a climb will consist of approximately eight hours up. They reach a level and go off to the side to adjust to the altitude change, and Jessica told us it’s like taking two steps up, one step down and a side step along the way. I wonder if they’ll make a Mt. Kilimanjaro two step dance ;o). The packers set up the tents and prepare their evening meal. The climbers will carry enough food and water for a day’s use, along with several just-in-case items.
This climb can create altitude sickness and it is recommended they drink 4-5 liters of water per day, and eat lots of food for energy. A common symptom of altitude sickness is loss of appetite, nausea, and vomiting… and if they don't eat and drink, the altitude sickness gets worse. She told us how they may not realize this symptom and how they have to rely on each other when and if they get affected to do what they can to overcome this illness or it’s a quick trip back down the mountain. Jessica has given up caffeine now, as stimulants can create an issue. She said it’s better to have withdrawal symptoms now then when climbing up that mountain. Jessica plans on taking her oxygen sats when she reaches the summit, and one of our members volunteered a pulse ox (light weight) for the climb. The climbers also hope to be able to communicate with PHA on a regular basis while climbing.
The last climb to reach the summit will take approximately 15 hours, and this will be done at night as the bright sunlight will be too overwhelming for a day climb. The climb down will take one or two days as opposed to the seven days it takes to reach the summit. Climbing down is a reversed strain on those leg muscles and the knees, so caution is still in vogue. We thanked Jessica for sharing her thoughts with us and let her know how much we appreciated what she and the doctors are doing for all of us.
Michele, Carrie and Lynn (who work at AGH) then introduced us to staff who work in the research department of the Gerald McGinnis Cardiovascular Institute at Allegheny General Hospital, and we gathered ourselves up for our Unity Walk -– a tour of the PH research department. Our first stop was the Bio Engineering Lab where Dennis Trumble, a bioengineer, showed us a heart made to scale and pointed out the pulmonary arteries, the aorta and other tubes either going to or from the heart. He also showed us an oversized heart and explained why it could be in that condition. Dennis then showed us a pacemaker, a hydraulic pump of sorts and another medical device created at AGH that he is working on –- all these to help the heart and lungs.
We then went on to Dr. Benza’s storage room, where he has DNA samples stored in several freezers for use in PH research. The room is specially equipped to handle the heat from the freezers, so the room is basically at an even temperature.
Then across hall to the Gene Therapy Lab. Dr. Michael Passineau showed us various testings in progress and equipment that is used and how they will benefit us as patients or retard the progression of PH. There is a new not-ready-for-trial-as-yet med and the catheter used on the rats is about the size of human hair. When viewed through the microscope, it looks about the size of a thin straw. Some of us were able to take a peek. It truly is amazing what is going on in their research department. The rats are doing well.
Jessica then took us down the hallway with a mural her son’s daycare classmates made: a construction paper giraffe and a lion, whose mane is made from their hand prints. “They done good."
Now back to the conference room for lunch and the raffle drawings. We were told that the baskets were brought to the cafeteria each day with special totes in front to know which basket you want to win and where to place your ticket. There were a dozen or more baskets to choose from: restaurants, wine and cheese, books, coffee, attend a sports game and a doggie basket (the basket itself was a doggie bed; it also had a food dish and various other goodies a dog would enjoy). :o) several others as well. AGH collected $1,300 from the raffle drawing.
The Pittsburgh goal for the Unity Walk was $2,000 and each support group across the country was asked to try to raise $1,000. Actelion is sponsoring a dollar-for-dollar match of up to $50,000 in donations. The climbers’ goal is to raise $100,000 for PHA’s PH Research Programs and patient serving programs; we are very close to reaching that goal and many of the support groups haven’t even had their Unity Walk as of yet.
My agenda was very brief but I did ask all to call or write their legislators often to either co-sponsor HR 1030 or S2803. I shared information about PHA’s upcoming International Conference in California in June, and for folks to get their flu shot.
I want to thank United Therapeutics for providing our lunch for the day, also Gilead Sciences for providing our backpack specials, and especially the nurses and staff at Allegheny General Hospital for all the help they provided prior to and during this walk. Those members who came submitted the contributions they collected, several of the pharmaceutical representatives who participated added their donations and our total for the day was $3,250 –- with donations still coming in!
Read their blog: http://pathtoacure.blogspot.com/
Awesome event and such a very special day.
Remember to smile ~ it's contagious.
