I have Pulmonary Hypertension

Lately I have been asked to do presentations at various "groups"... in mid April a member of the Mercer Area PH Support Group asked if I would speak before his retiree group about pulmonary hypertension. He said they would have one more meeting before their summer break but it was kind of a "political" meeting being the day before the Ohio primaries. Well, you know me my ears perked up when I heard political. He told me I would have about 4 minutes as Congressmen, local and state politicians would be there. I said I guess if I can do something in six minutes on TV, I could do 4 minutes before a group. I asked how many would be attending thinking 25 to 30 (I wanted to be sure I had enough brochures to pass out). He said between 8 and 900. Say what!!!
I contacted the Pulmonary Hypertension Association saying I needed a rush for the "Helpful information for patients and families", a brochure for and about pulmonary hypertension. I always have 25 to 50 but not enough for a group that large. The UAW -- yes THE UAW.
Paul, my friend, made arrangements to make copies of letters that could be mailed to Federal Representatives and Senators about HR 1030 and S 2803 respectively; the Tom Lantos Pulmonary Hypertension Research and Education Act of 2009.
Now in April I spoke before a ladies business group about Lupus and Pulmonary Hypertension -- thinking 1/2 hour presentation would be enough, I was told, oh no, you are the key note speaker, take an hour to an hour and a half. So I prepared, I added a little more here, I added a lot more there. I made a power point presentation with pictures and had 28 full pages. I was ready, I "done good". Now I had to switch from Lupus and PH to just pulmonary hypertension and do it all in 4 minutes.
This had to be concise and to the point, I wanted to cover symptoms, causes and effects (those side effects) and most importantly cover the research and awareness bill and make it interesting but not too scary. After all, having pulmonary hypertension is scary.
May 3rd finally arrived. I was ready and good to go. Tom and I drove over to Boardman, OH to a large conference center. There were 5 or 6 "food stations" around the perimeter of the room for the buffet luncheon that would be served; it is a huge dining room. Round tables for seating 10 with white table clothes were set through out. There were several tables at the entrance with brochures of "VOTE FOR ME" and why. As I mentioned, several politicians were to be there. Brochures and flyers on the dining tables as well.
The meeting began, one by one the politicians were asked to speak. Apparently one of the Congressmen was running late so I heard: "Is Merle here now and could she speak"... Woo Hoo -- my turn. I made it to the podium, I was only two rows back.. I had my Flolan (an IV in my chest that goes into my heart) -- attached, I had my portable oxygen tank (canula in the nose) -- attached. I had 3 steps up to the podium; I shut off the pulse on the oxygen and put it on full flow. I didn't want that little puffer noise to distract anyone while I was talking.
I started off with "Good Morning" and almost fell over when a booming "Good Morning" came right back at me. Now as I recall, when I've heard or even presented talks when you say good morning or greetings of sorts you might get a meek and mild response if any. Not here, not at the United Auto Workers Local 1112. These men and women let you know they were there and ready to listen.
I introduced myself and thanked Paul and the UAW for asking me to speak and then I said: "I have pulmonary hypertension - pulmonary hypertension does not have me"!!
I explained what pulmonary hypertension is (Pulmonary Hypertension is a rare, life threatening, progressive and incurable disease of the lungs and heart) also who may get it; the possible whys and for some no known reason. How it is often misdiagnosed or not diagnosed and how long that process can take. Then the symptoms (Symptoms of pulmonary hypertension do not usually occur until the condition has started to progress. The first symptom of pulmonary hypertension is usually shortness of breath with minimal exertion, you may also feel extreme fatigue, have dizziness or fainting spells, heart palpitations, a dry cough; all these can be symptoms. Edema or swelling in the ankles, the legs or the abdomen can occur; bluish lips and skin and chest pain may occur as strain on the heart increases) and the bill now before Congress. I finished with a tribute to Paul's sister Betty who died of this dastardly disease last year and thanked them again for the opportunity to speak to them.
The Congressman came, did his presentation and told everyone what would be happening in the valley and what he hoped for. Very encouraging. Lunch was then ready.
Now on each table there were several letters (but not enough) to either Representatives or Senators and during my presentation I asked that they put their name and address on these and I would mail them or they could and to mail to the local office not the DC office. We gathered over 200 signatures for each Senator and enough letters to mail to 5 Congresspeople throughout Ohio. I need to add that Congressman Tim Ryan has co-sponsored our PH Research and Awarness bill each time it has come before Congress (that's 3 - the most recent being HR 1030) Another Woo Hoo moment.
During and after lunch several people came to me saying their sister, or I was just diagnosed, or someone they know may have this disease. I had several "Envelop of Hope" post cards that PHA has, you fill them out mail them in and the PH Association will mail you a packet with lots of info. People brought over the letters to be mailed, one of the members asked if a donation could be made to the association (PHA), it was voted on and agreeded to, then after the meeting there was not one brochure about pulmonary hypertension left on the tables nor any letters -- plenty of the political info :o)
THEN a few weeks later I receive a letter from PHA saying I am to be awarded the "Outstanding PH Citizen Award" I would be the 2010 recipient, yours truly, me, myself - I.
The letter stated: Awarded to a patient who exemplifies dedication to the Pulmonary Hypertension community through any combination of the following: raising awareness; advocating for PH patients; participating in fundraising efforts; service to PHA; and, helping to provide the public with a voice and face of the PH community. Well, hold me back... What an honor, I was speechless (key word there is WAS) and in awe. I am still flying high -- my local newspaper did an article about it and tomorrow a local TV station is coming for an interview

RMEMBER TO SMILE -- IT'S CONTAGIOUS
Merle


www.firstgiving.com/CAPHS

Put a smile on my face

About a week ago I had to replace my TV remote. It was among the missing and I think what may have happened is the end table it is usually kept on is right beside a wastebasket... are you having visions of it being bumped or knocked into the waste basket running through your head. Well, that's the only thing I can think of and I checked all chairs and the sofa to make sure it wasn't hiding beside the cushions or under them. Naturally I didn't think of THAT until the trash has been put out for the week. It was getting old anyway, not all the buttons worked; the back button, the mute and another: I had tape around it to keep it together...
So the next day it was among the missing I had to physically get up and turn on the TV, I had to get up and change the channels, adjust the volume do the whatevers that can normally be done with a remote... whew. Now for a normal person this should not be too much of a challenge but when you have pulmonary hypertension it can be. Getting up can be a strain on your heart if your heart isn't in all that good of shape. I wasn't worried about my legs as much as how I got a little sob (that's short of breath, thank you very much) every time I had to get up, go to the TV and make those adjustments. You may or may not know, pulmonary hypertension is a rare, life threatening, progressive and incurable disease of the lungs and heart. Pulmonary hypertension is often misdiagnosed or under diagnosed and can occur in any person, male or female from infant to senior citizen -- and I have it and it's not fun. :o(
Anyway, the next day when Tom is over -- the healthy one, although of late he hasn't been feeling too well -- he makes comments about the remote. So I say lets go to Wal-Mart and I'll get a new one. As I mentioned I really needed a new one anyway.
Off to Wal-Mart we go. We arrive and I head right to the electronics department. We look at 3 or 4 and settle for the one in the middle - price wise. We are getting ready to leave and Tom said aren't you going to look at anything else, I said nope, I'm done. (Haven't been feeling up to par and I didn't want to walk too much around the store).
Well, all the registers are full, people are lined up 3 or 4 deep except for one of those 12 items or less and it was in the back or toward the front of the store. I head for that one and I said to the cashier "You look so lonesome I'd thought I'd stop"... and she said: "I'm so lonesome I could cry".... ;o) That just tickled my funny bone so I said -- "That should be a song tile"... We both laughed. Then she started singing the song and I said who sang that and so the fun began. Tom said Terry Bradshaw (Steeler quarterback from years ago). I said I thought it sounded like something Johnny Cash would sing. She called the manager on those phones they have and the manager said Elvis :o) >
We all laughed as she rang up the one item I had. Everyone of us had someone different in mind. I guess the curiosity got the best of the manager as she came over singing "Hear that lonesome whippoorwill... she said she knew it was Elvis, I said seems more like Johnny to me and Tom said nope it was Terry.... and we all sang "I'm so lonesome I could cry". I thanked her for giving me such a good laugh cuz we sure were laughing and smiling and to have the manager come over and join us... Just kinda made my day.
BUT, it doesn't end there. When we got home we programmed the remote got it all working properly and turned on the TV, checked it out... yep we done good and started watching TV.
I kept smiling just thinking about that lonesome whippoorwill "he sounds too blue to fly -- The midnight train is whining low -- I'm so lonesome I could cry." It got the better of me and I just had to look it up. I hooked up the lap top and googled You Tube and I'm so Lonesome I could Cry. GUESS WHAT -- we were all right/correct. Actually is was a song written and sung by Hank Williams in 1949, also sung by Marty Robbins, Johnny Cash, Elvis, Dean Martin, Terry Bradshaw and several others.
Still brings a smile to my face when I think about it -- laughing is such good exercise for the lungs and I really need a lot of laughing/exercise. I wanted to call and tell the manager and have her tell the cashier but Tom said no...

Remember to SMILE -- it's contagious...

Exercise, an Inspiration

"She was hospital bound for quite a while and when she was able to return home she had a nurse come -- with that first visit she was able to take 2 steps and gradually built that up. She can now do light house work, can go shopping and has gone from 12L of 02 down to 1L".

Another chatter and I decided we would be exercise buddies (we're several hundred miles apart, but hey) so this morning, via cell phone, we started an exercise program. She would use her gizmo and I would use mine -- I have a treadmill which has been gathering dust. I did 4 minutes -- 2 more minutes than I was doing the last time I was able to get on it. I saved the chart I had when I did pulmo rehab and added some lite arm exercises. My doctor told me which I could and could not do. He told me if I got short of breath, to stop and take a break, then go back to doing what I was doing. I am to continue to do the treadmill and gradually add to those walking going nowhere minutes.

Having an exercise buddy has been an inspiration, it gets me going and makes sure I will continue to do exercise. Exercise is so very important for those of us with pulmonary hypertension. It's not only good for our heart but our lungs as well, we need to keep our body active if we want to continue to keep on keeping on. We have to know our limits but we have to be able to use those limits to our best ability.

I'll try to keep you posted on how I do.

Remember to smile -- it's contagious.

I can see the green grass

Last Thursday I woke up and was a little sob -- for those who don't know, that means short of breath. I looked out the front window and I could see FOG -- FOG, oh no. I have trouble breathing when it's too humid. I have pulmonary hypertension and for some of us humidity can be an issue.

Anyway, besides seeing fog I didn't see that white four letter word stuff that has been on the ground most of this winter. We were hit hard this winter with that white fluffy stuff -- that four letter word, was over 3 foot plus deep at times. Wednesday we still had about 4" left and on Thursday morning pretty much zip, nada, not much at all. There some small white patches where it had been plowed and stacked high... not so high now :o) There was a very light rain during the night and washed it all away. It was suppose to reach the mid 40's -- whoo hoo a heat wave.

Tom came over late morning and we had plans to go to the store -- my monthly toilet paper run -- when I run out of toilet paper -- I run to Wal-Mart. Well, I don't run but I get there as quick as I can. On the way to the store we went by the high school and out in the field were students dressed in baseball uniforms and playing or practicing the game. Wow, that does mean warmer weather is on it's way. This has been such a LONG winter. Exceptionally cold, exceptionally snowy.

When you have pulmonary hypertension you have to be careful of the cold air. Breathing that bitter cold air can do damage to your lungs and we (phers) either need to wear a mask or have a scarf over our nose and mouth when we go outside. Now freezing weather is bad enough -- 32 degrees -- but when it drops to the single digits and even sub single digits it's not good. Because of the bitter cold, I didn't go out much this winter. When I did go out I was lucky that the sun was shinning those days.

I bought my monthly supplies, we stopped for take out on the way back and headed home. It was so nice to get out and since then, I've been out twice -- who could ask for more. One outing was for the Cleveland Area Pulmonary Hypertension Support Group. The first of the year, the first of the decade. We don't meet during the winter months because of the weather and it was great to get back together, to share to learn what we can. Our presentation was on "How to Eat Having Pulmonary Hypertension" -- great interaction and we learned a lot. Support is so important for many who have pulmonary hypertension; it's a scary disease, a life threatening disease that affects not only the lungs but also the right side of the heart.

Remember to smile -- it's contagious.

Merle

On one of my previous posts Karen wrote and for some reason her note was deleted. I remember her saying her Mother was new to PH. Please write back and I will help in anyway I can.

HEART ~ Function vs Emotion ~ A Ballet

The weekend of February 19th and 20th, it was my privilege and honor to participate in a ballet. And yes, I said participate in a ballet. Maria Caruso, Artistic Director of Bodiography Contemporary Ballet was approached by Dr. Dennis McNamara, Director Heat Failure Transplant Program at UPMC; who attended a previous ballet about a health issue. His daughter is an apprentice under Maria.
Knowing Maria as little as I now do, I can imagine that first vision she may have had. She is a remarkable young woman full of vision, passion, emotion, nimbleness and forth site. She is a go getter and persistent in doing what needs to be done – to the point when it was decided a ballet would be performed about heart transplant patients and pulmonary arterial hypertension patients – she asked and was allowed to watch a heart transplant. Now how devoted is that.
Notes were sent and a meeting was planned in September. Several heart transplant patients and several pulmonary arterial hypertension patients met for the first time to discuss the possibility of having a ballet in February – heart month. We were to meet at the ballet studio in Squirrel Hill.
Holly, a phriend and member of the support group, and I decided to see what it was all about. Bryan, her husband said he would drive, so off we went to see what great adventure lay before us. We arrived in Squirrel Hill at the appointed time, there was a nice parking garage not too far from the studio, with just a slight incline to get there. I jokingly said to Holly, I just hope this isn't on the third floor. Well, guess what. I looked at those steep steps, I looked at Holly and Bryan and said there is no way I will be able to get up those stairs to the third floor. Holly felt the same so Bryan went up to the studio and mentioned that we would not be able to do the stairs. Maria came down and we all went across the street to a cafe and had our first of several meetings. During those meetings the intent was to see how we as transplant patients and PAH patients felt – what we had gone through; what we are we going through now. The photo shoot was set on the third floor so Holly and I would not be in the billboard photos that would be placed around Pittsburgh announcing the ballet.
At that first meeting there were several of both types of patients but with work schedules and distance involved, not everyone could continue meeting as hoped. Four heart transplant patients and two PAH patient would be part of the HEART TEAM. The dancers practiced. we met at the cafe; the dancers practiced more frequently we met at the cafe; we then met at the Club One Fitness Center for our first all together rehearsal.
We the patients, watched as the dancers danced and Maria counted out the beats. She told us the musicians would be Cello Fury (three classically trained cellist and a rock drummer); she had a tape of the music they specially composed for this ballet. I watched in awe as those dancers moved about to the beat of a heart; to the moan and drone of a sorrowful mode moving on to the upbeat of joy and extended life. The movements were more of a flowing motion. Their movements were graceful and emotional and filled with passion. A lump grew in my throat and tears welled in my eyes as I saw what Maria in her vision had created. The drive home that evening Holly and I spoke of the emotion they had captured of our struggle prior to and now with treatment; you could see the same for the heart transplant patients; their struggle prior to a transplant and now their new life.

I made fliers for the event; sent them to the appropriate sources. The pulmonary hypertension centers in Pittsburgh, the Pulmonary Hypertension Association in MD so all PAH patients in the area would know of the ballet and attend if possible. UPMC graciously bought tickets and any heart transplant patient or pulmonary arterial hypertension patient and their family members could attend at no charge.
The special weekend was fast approaching, I was so excited it was a good thing I had some self-control. I did buy myself a new top for the occasion – purple with a black sparkly bow on it and a black sweater with sparkles too. They were on sale, I'm sure left overs from New Year's Eve. Holly and I decided we would wear something similar – color-wise – purple to match our lips. Once someone asked me what shade of lipstick I was wearing. I said it's called lack of oxygen... ;o) Holly bought me a “bling” to match hers. A silver heart with purple jewels throughout. It is beautiful.
On Friday we were to meet at the Byham Theater at 1 p.m.. This theater was built in 1904 so you can imagine the culture that oozes from it's walls. It was restored in 1999 so technically/electrically it is very up to date. The murals and such are typical of the turn of the century – the other turn of the century. It is a captivating structure. We were to enter at the back of the building and had a special code to punch in. We opened the door and low and behold STAIRS, oh no. I had my cart with my spare meds and spare oxygen, there was no way I would be able to lug those up the stairs, then Holly found an elevator. Whew, saved again.
The dancers were stretched out in the main lobby, Maria was counting out the beat as they moved about and got their muscles ready for the evening performance. Watching them wore me out and we hadn't even started. I remember back when I could do things like that. I took dance when I was a kid... 4 or 5 years old but I always loved to dance – to go out dancing. They use to call me twinkle toes because once I got up on the dance floor, I never sat down until the music stopped. Now, well now – we won't get into that. I can tap my toes and shake my shoulders a bit and roll my hands/arms until I'm a little sob (that's short of breath) thank you very much.
The rehearsals began and yes there is a 's' at the end. We went through the performance; Maria is an excellent director – lighting had to be just right; those of us who are non performers had to learn how to walk into those lights that are set on the side for the proper ambiance. Several adjustments had to be made and re-rehearsed again – for the dancers again and yet again. Things had to be perfect. We had a break which gave us enough time to go next door to the Renaissance Hotel for a light dinner. Several of us went together and one of the heart transplant patients saw some friends from CORE (Center for Organ Recovery & Education) and when Pat told them what we were doing, they bought our dinner. Such an incredible gesture. We headed back and when we walked into the theater itself there were the dancers on stage still going over their performances. Practice makes perfect. One more run thru and then it was time to put on our best and get ready for the real thing. I didn't wear a tutu.

When the curtain opened we were in a tableaux arrangement; the music began, the dancers danced. Each of us either had a dancer or maybe two or three dancers to express our function.

“Act I – Function: The first portion of Heart is an abstract rendering and representation of the organic function of the heart. It begins with the introduction of our collaboration and the visualization of the connection between each patient and their heart. This has been created to demonstrate the color, texture, movement, flow, and macrobiotic behavior of the organ itself as seen and felt from the eyes of the choreographer during heart transplantation.”
My dancers were Nicole and Maggie who did an excellent presentation of the struggle we with pulmonary arterial hypertension have and as I explained to them my struggle.
“Act II – Emotion: The second portion of Heart depicts the physical preparation prior to heart transplantation as well as the operation itself. The surgery will be visually demonstrated by world-renowned transplant surgeon Dr. Robert Kormos. The second act then displays the choreographer's physical interpretation of each of the patients' experience with heart disease (PAH too)
“Patient and performing artists meet again to represent the unification of a common organic disease. As the patients depart we prepare for heart transplantation and anesthesia.
“Each patient's heroic story is represented by yet another performance by their now emotional representation.”
During Act II as Dr. Kormos and Maria (his assistant) performed open heart surgery a dancer mimicked the struggle a heart would have prior to and during the surgery. The doctor then lead the dancer off stage representing the old heart and a new dancer dressed in white was led on to represent the new heart prior to blood being added.
The dancers did single performances; in groups of several of the artists and in groups of just two or three. When it came time to do the 'patients' emotion the audience would note that each patient sat at the edge of the stage while their dancers showed the struggle some of us have gone thru and some are still going thru (PAH patients). It truly was very emotional.
Nicole and Maggie showed the pressure that I have felt in my chest when Maggie stood on top of Nicole! Then the closing of that segment Nicole dragged off Maggie showing the weight of my oxygen tank and all the other just-in-case stuff I have – such as my Flolan, my mixed meds my just in case meds.

Because of the length of our stay – being there early for rehearsals, I knew I would run out of oxygen in my marathon tank so I had to bring back up; I also had to bring my mixed medicine and my back up medicine; a change of clothes etc.everything for this now just-in-case life I lead as do other pulmonary hypertension patients lead. I used my red carry cart. Friday night I left it back stage, Saturday night I used it on stage. The back up oxygen is very heavy and Friday night it slipped off my shoulder and wrenched my arm. Soooo Saturday night the cart was with me.
After the performance there was a question and answer time and the audience had the opportunity to ask questions. Many were directed to the heart transplant patients but several were directed to me or Holly with questions about pulmonary hypertension. Each of us had a chance to share our feelings and emotion of the night and it truly was an emotional time. Tears flowed as we shared our appreciation for the accomplishment and of the awareness that was presented this past weekend. This performance was awesome and Maria and her dancers are phenomenal. Maria gave each of the patients a bottle of champagne and some gummy fish, we gave her a bouquet of red roses. Holly contacted me Saturday morning and asked if I had any phenomenal bracelets – those that say phenomenal hope (for and about pulmonary hypertension) – she wanted to give two to her dancers. What a wonderful idea so I made plans to give Maria and each dancer a bracelet for being such phenomenal people; we also gave our new phriends, the heart transplant patients one for being such phenomenal people for what they went thru and the hope they now give us.
After the performance we exited stage right... I gathered up my coat, used oxygen tanks and was heading to the lobby to meet my family. Oops... the incline in the theater -- how soon I forget things. I thought it would be easier for me to meet them in the lobby than for them to fight the crowd and come get me. I saw a young man and asked if he would pull my cart up to the lobby. He said he would and was surprised with the weight of the cart even though it was on wheels.
This was a phenomenal event – a time in my life I will cherish forever. I thank all those who made it possible and also to all who participated in making it a true and emotional success

Path to a Cure

I just spoke with the climbers... Jessica is back to feeling better she said the two doctors took very good care of her. They are about ready to go to bed as it is 6:30 p.m. their time (10:30 a.m. eastern). At 11 p.m. they will wake up -- have something lite to eat and then climb to the summit... remember the sunlight; they have to climb during the night.
I asked Dr. Benza if they were above the treeline now and he said they are looking DOWN on the clouds!!!
Unfortunately, we were cut off but I was reconnected... so to make sure they got all our well wishes, I told them how every one is rooting for them from afar -- how those positive thoughts and prayers are going their way and Dr. Benza said they will do their best to reach the summit -- it is the highest any of them have every climbed and more of a challenge. The connection was cracking again and I know they are tired so I felt a 15 minute conversation was the best we could do right now. They will call again on Sunday when they reach base camp.
What these doctors (Dr. Benza and Dr. Franz) and Jessica are doing is above and beyond the call.... To try and have or give yourself pulmonary hypertension, I guess to better understand those of us who have it, and to raise funding for research and awareness for this rare and life threatening disease; well, I just don't know what to say. Thank you just doesn't seem to be enough for what they are doing for all of us in the PH community.
If you have pulmonary hypertension you may know that "sound" when someone talks.. their speech just isn't the same... I could hear me several years ago before I was on treatment; I still remember the struggle to talk. They weren't that bad but I could hear the strain in their voice. Or maybe it was the connection but I don't think so.
I wish them well -- sending those positive thoughts and prayers. YOU ARE AWESOME!!

Merle -- remember to smile, it's contagious.

They made it to the summit!!!!

Unity Walk - PGH

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.