A few weeks ago I received a jury summons, the first one in more than 10 years. I have gotten into this role in the past. having PAH I asked the doc if he thought it was ok for me to do this. Since the day would be spent sitting, he felt it would be fine. This past Sept 21st was my day. It was not the sitting that was difficult but getting to the court room. Parking was diagonal across the street. It was an uphill trek. Entrance into the court house was to climb two huge flights of stairs or up the hill and up a ramp. I selected the hill and ramp. My heart was pounding by the time I got to the door. Still had to wait 10 minutes for the doors to open and another 10 minutes getting through security and up the elevator to the jury room. My heart was still pounding. It concerned me that it took about 30 minutes before my heart did not feel like it was going to jump out of my chest. That concerns me a bit.
Monday Sept 26th I am having a right exercise heart cath. Maybe it will give the answers as to how the PH is doing. This should be interesting. Signing out til then.
The best medicine for the heart is to bend down and lift another up!
Sunday, September 25, 2011
Monday, September 5, 2011
A New Year Started July 1, 2011
It is hard to believe more than a year has passed since the last PH conference. The 2012 conference in Orlando will be just as great.
So much has happened in the past year. A year of H _ _ _ awaited my return from conference. That it was but I emerged a stronger person. First on the agenda was breast cancer surgery. I found out just before leaving for CA the breast cancer from 2001 had returned.
I had an uphill battle with the surgeon and plastic surgeon about what procedures could be done. I could not see me wearing prosthesis and opted for a mastectomy with reconstruction. That meant a much longer surgery plus a second surgery to complete the reconstruction. I had one supporter who made all the difference, Dr Tom _____, a cardiothoracic anesthesiologist. He did a presentation at our support group meeting maybe 2 years before. Little did I know I would need his service. The program was entitled "When a PH Patient Needs Surgery". I never experienced medical concern like he exhibited. Having PH makes one more at risk for surgical complications. So glad I saved his email address. After agreeing to be the one to manage the anesthesia, he called the surgeon, the plastic surgeon and the pulmonologist to explain that if there were going to be complication from the PH, it would happen very early in the case. If everything was going well there was no reason the case could not be extended the additional 2 hours needed for the first stage of reconstruction. If things were going sour, the surgeon could stop after the mastectomy. He contacted the pre-anesthesia folks to update them prior to my visit. Then beyond my expectation he gave me his home phone number, cell number and beeper number to call him as soon as the surgery was scheduled. Just as amazing, the evening I called he spent 2 hours on the phone just talking--allaying fears and telling me what he would do to keep me save.
July 13, 2010 had the mastectomy and first stage of reconstruction. Anesthesia and surgery went without a hitch however I was not without complication. I had no idea what was happening but I developed swelling in my chest and back. When women have a mastectomy you know that arm swelling is a possible complication. I had never heard of what was happening to me--truncal lymphedema meaning my lymph system was not able to handle to fluid drainage so it collected in my back and chest area instead of my arm. An occupational therapist taught my husband the needed techniques to help the lymph fluid travel in the right direction to drain. Every night he had to do these massage techniques. He did this with great care and so lovingly. I also needed to wear compression garments to help keep the fluid from collecting. Finally after weeks of massage, the swelling became less and less until finally it could finally work on its own.
I saw the oncologist in October which to me was a big mistake. It should have been before the surgery so I could weigh all options. No I would not be taking chemo or radiation this time but based on the things she was telling me, I know I would have chosen a different course. It was too late for that now. She wanted me to quit taking the testosterone gel--long story for another entry and take Evista in hopes of preventing a recurrence in the other breast or worse yet metastasis.
Actually I need to briefly discuss the testosterone gel. More than a year before I went to see a friend from church who happened to be a reproductive endocrinologist--who knew all there is about hormones. I took research articles with me in hopes he would agree to start me on the testosterone. The research was done on rats and then on human lung tissue--no clinical trials. Testosterone is not only needed for muscle strength and endurance but due to the NO pathway has a vasodilates the pulmonary arteries. Woe there! Analytical reasoning--women need a tiny bit of testosterone. I had breast cancer in 2001 with chemo and radiation. Chemo chemically killed my ovaries where testosterone is made. How could I be so stupid. Testosterone dilates the pulmonary arteries. Could this be a contributing factor to the PH? After taking the testosterone gel for only 3 days, muscle pains that I thought were coming from the scleroderma were gone. Mind you, I still plenty of other joint pains. Sandpaper dry eyes had improved to the point that I could not even tell when the plugs in my eyes washed out. Testosterone is also needed for tear production.
Being a good PH patient, I ordered copies of my medical records. I could have spit fire when I saw the oncologist consult note which said something to the effect "she needs to take the Evista and come off the testosterone. She can take another calcium channel blocker for the PH". I was so mad. This told me she knew nothing at all about PH. I would love to take a different calcium channel blocker and be able to breath better. Only if it was that simple. My next drugs are inhaled or IV. I could not bring myself to take the Evista for any more than 3 days. All I could think of was the bone pain that I had while taking Tamoxifen after the breast cancer in 2001. Without any injury, I even developed a bone bruise in my right knee with edema in the bone marrow. They are sister drugs.
By the time I went back to the reproductive endocrinologist, I felt terrible for being off the testosterone for 2 months. We devised a plan where he would give me low dose and I would have frequesnt monitoring of the estrogen and testosterone levels. HE also referred me to a gyn oncologist as I was not going back to the previous one. I am well aware that I am treading on thin uncharted ice but it is my body. The new oncologist spent 2 hours going over with me every possible treatment option. The bottom line as it circled around was the same path I was on.
Stage 2 reconstruction was done on November 2, 2010. I was groggy when the nurse gave me three half pills. When I asked what they were--she told me Viagra which I knew was the same drug as Revatio for PH so I took them. The previous inpatient stay I brought and took my own PH drugs. This time I would only be in overnight. Within a short time my BP fell out the bottom and I spent the night in trendelenberg position (head down, feet up) and taking loads of IV fluids. By morning my BP was up to my low normal and I was discharged. Later that day the specialty pharmacy called about filling the Letairis. When given the opportunity to speak to the pharmacist I asked him if Viagra can be split. His answer was absolutely not as you interrupt the special coating that allows the drug to be absorbed slowly. having three half pills--I had 3 areas from which rapid absorption occurred.
With everything going on I was forced to cancel our yearly fall PH golf tournament. That was sad but I saw no way for it to take place. We would reschedule it for the spring.
My husband wanted a different course for the tournament. We spoke to them in early December and set the date--May 14th. I had not planned on working on the tournament until after the first of the year but had a call asking me to submit a grant application before the first of the year. This required a budget, action plan, timeline and the grant application. Wow--right here before Christmas. It was submitted in a timely fashion and approved.
Real work on the PH tournament started after the January 1st. There were other grant applications to make, save the date card to make and mail, letters to write, registration forms to make and mail, businesses to visit. Right in the height of these activities I fell and sustained a significant injury that had me non-weight bearing for 5 weeks--bone bruise of the right knee again along with a large hematoma under the kneecap. How could the tournament work be done. It was extremely hard. I wrote more letters than ever before using the laptop upstairs where I could keep the knee elevated but the wireless printer was downstairs in the computer room. So I would print and print letters. When my husband came home he would collect all the letters and bring them up to be stuffed and prepared for mailing. This went on for weeks. Finally I was able to start putting weight on the knee and it was off to PT, still trying to pull this tournament together.
The NC Cure PH Golf Tournament came off with a few only a few hitches like 2 weeks before the golf course did not plan us to needing be inside as there was also a wedding and we were not supposed to bring our own food. Well they improvised and allow s to bring food since it was already ordered and they rearranged furniture to allow us to be inside. Plus the last minute doctor I enlisted to speak, called early that morning. He could not come as his kids were sick. did I believe him--yes I did.
A couple great things happened with regards to the tournament. One couple who always played with us had been hounding a friend who is general manager of the KIA dealership to put a car up for a hole in one prize. he finally agreed. We spoke briefly on the phone twice. When we finally met on tournament day he said to me "I had no idea what pulmonary hypertension was so I asked my mom who is a retired nurse. Anytime you do one of these events I will be happy to sponsor a car as a hole in one prize". WOW! I could hug his neck.
The other wild event kind of transpired with a lot of divine intervention. I her name on facebook--a longtime childhood friend of my son. She used to work in the NASCAR business and thought maybe she could get me a door prize or silent auction item. I sent her a private message. She called a few days later and explained that she has been out of the business for a long time and lost most of her contacts but she would try. Later she told me she prayed about it as she wanted to get me something special. Did not hear from her for a few weeks. She called to tell me what happened. Since her husband restores and builds race cars they were invited to the 2011 NASCAR Hall of Fame dinner. she was not feeling well that evening and her husband went alone. He came back just as excited as a kid getting his first puppy. Tiff won the grand door prize. As he was telling her what it included she is shaking her head until he got the message--we can't keep this. Nope! I prayed about it and it is going to Cindy. You would not believe but it was a NASCAR racing helmet signed by this year inductees--Richard Petty, Bobby Ellison, Junior Johnson, Ned Jarrett, and a could other that right now slip my mind. Plus there were 4 tickets to the pole race Thursday before the Coca Cola 500 and a copy of the photo CD that was shown during the dinner. Can you believe it. Eat your heart out racing fans. We had no idea what the helmet was worth. I received it 3 days before the tournament. Feverishly I snapped several pictures and forwarded to a sports memorabilia company to get an appraisal. Because the signatures were not authenicated the estimate was low $1650 to $1750. There was no time for the authentication process. Here is where the story gets good. A three way friendship because of different reason brought all this together. I called a nurse I used to work with as our former boss had passed away. They are also friends with Tiff's mom and her husband. We know Tiff and her mom from living 4 houses apart years ago when our kids were little. My son and Tiff stayed friends all through school and college. Kathy, the nurse already knew about the helmet when I called her. She told me her husband would start the bidding at $500 even though he would not be at the tournament. We did not get one bid on the helmet starting at $500. I contacted Tiff to talk about the three options. 1) I could see if Virgil was still interested in the helmet for $500. 2) I could spend another $150 and get authenticated or 3 I cold give it back to Tiff to wrap up and surprise her husband at Christmas. Tiff said hat if Virgil was not interested she would buy it back. There is no way I would let her buy her own helmet. After calling Kathy to see if her husband was still interested, she becomes very quiet on the phone. It seemed like 20 minutes went by before she finally said "let me see if I can get more money out of him". We laughed. A few days later when we spoke she told me what she said to him, "Cindy Said she got one bid on the helmet but if you still wanted it she would let you have it for $600". SOLD just like that. If he ever finds out the only other bid was his--he would murder bothe of us. Not really--he knows we are both certified nuts anyway. The tournament netted just over $18,000 of which $5000 will go toward patient scholarships and the rest to research. Thanks to all those who helped make this event possible.
We just wrap up a busy month with the golf tournament and along comes June. I had been helping One of the UT employees for several months with details for their upcoming PH 5 K Run. All proceeds were to benefit all the Carolina PH support groups. Went down to Raleigh the night before the race. Dinner was great fun but 4am came very early. John and I were out there just after 5 AM. I was amazed at the response of the event for a first time event. Figures have it around maybe 300 people. Somewhere around $17000 were raised. PHA decided to use the funds for Conference scholarships. We are so blessed.
July brought the UT Educational Dinner. It was great--met old and new friends.
As mentioned July 1st is the beginning of my New Year. With the breast cancer behind me, I can now focus on PH awareness and finding a cure. Before moving into that mode we had our grandson visit one week in July and one week in August. Kids are so full of energy and so very smart. He was a joy.
Thanks for listening. For more PH information visit www.phassociation.org
Cindy
So much has happened in the past year. A year of H _ _ _ awaited my return from conference. That it was but I emerged a stronger person. First on the agenda was breast cancer surgery. I found out just before leaving for CA the breast cancer from 2001 had returned.
I had an uphill battle with the surgeon and plastic surgeon about what procedures could be done. I could not see me wearing prosthesis and opted for a mastectomy with reconstruction. That meant a much longer surgery plus a second surgery to complete the reconstruction. I had one supporter who made all the difference, Dr Tom _____, a cardiothoracic anesthesiologist. He did a presentation at our support group meeting maybe 2 years before. Little did I know I would need his service. The program was entitled "When a PH Patient Needs Surgery". I never experienced medical concern like he exhibited. Having PH makes one more at risk for surgical complications. So glad I saved his email address. After agreeing to be the one to manage the anesthesia, he called the surgeon, the plastic surgeon and the pulmonologist to explain that if there were going to be complication from the PH, it would happen very early in the case. If everything was going well there was no reason the case could not be extended the additional 2 hours needed for the first stage of reconstruction. If things were going sour, the surgeon could stop after the mastectomy. He contacted the pre-anesthesia folks to update them prior to my visit. Then beyond my expectation he gave me his home phone number, cell number and beeper number to call him as soon as the surgery was scheduled. Just as amazing, the evening I called he spent 2 hours on the phone just talking--allaying fears and telling me what he would do to keep me save.
July 13, 2010 had the mastectomy and first stage of reconstruction. Anesthesia and surgery went without a hitch however I was not without complication. I had no idea what was happening but I developed swelling in my chest and back. When women have a mastectomy you know that arm swelling is a possible complication. I had never heard of what was happening to me--truncal lymphedema meaning my lymph system was not able to handle to fluid drainage so it collected in my back and chest area instead of my arm. An occupational therapist taught my husband the needed techniques to help the lymph fluid travel in the right direction to drain. Every night he had to do these massage techniques. He did this with great care and so lovingly. I also needed to wear compression garments to help keep the fluid from collecting. Finally after weeks of massage, the swelling became less and less until finally it could finally work on its own.
I saw the oncologist in October which to me was a big mistake. It should have been before the surgery so I could weigh all options. No I would not be taking chemo or radiation this time but based on the things she was telling me, I know I would have chosen a different course. It was too late for that now. She wanted me to quit taking the testosterone gel--long story for another entry and take Evista in hopes of preventing a recurrence in the other breast or worse yet metastasis.
Actually I need to briefly discuss the testosterone gel. More than a year before I went to see a friend from church who happened to be a reproductive endocrinologist--who knew all there is about hormones. I took research articles with me in hopes he would agree to start me on the testosterone. The research was done on rats and then on human lung tissue--no clinical trials. Testosterone is not only needed for muscle strength and endurance but due to the NO pathway has a vasodilates the pulmonary arteries. Woe there! Analytical reasoning--women need a tiny bit of testosterone. I had breast cancer in 2001 with chemo and radiation. Chemo chemically killed my ovaries where testosterone is made. How could I be so stupid. Testosterone dilates the pulmonary arteries. Could this be a contributing factor to the PH? After taking the testosterone gel for only 3 days, muscle pains that I thought were coming from the scleroderma were gone. Mind you, I still plenty of other joint pains. Sandpaper dry eyes had improved to the point that I could not even tell when the plugs in my eyes washed out. Testosterone is also needed for tear production.
Being a good PH patient, I ordered copies of my medical records. I could have spit fire when I saw the oncologist consult note which said something to the effect "she needs to take the Evista and come off the testosterone. She can take another calcium channel blocker for the PH". I was so mad. This told me she knew nothing at all about PH. I would love to take a different calcium channel blocker and be able to breath better. Only if it was that simple. My next drugs are inhaled or IV. I could not bring myself to take the Evista for any more than 3 days. All I could think of was the bone pain that I had while taking Tamoxifen after the breast cancer in 2001. Without any injury, I even developed a bone bruise in my right knee with edema in the bone marrow. They are sister drugs.
By the time I went back to the reproductive endocrinologist, I felt terrible for being off the testosterone for 2 months. We devised a plan where he would give me low dose and I would have frequesnt monitoring of the estrogen and testosterone levels. HE also referred me to a gyn oncologist as I was not going back to the previous one. I am well aware that I am treading on thin uncharted ice but it is my body. The new oncologist spent 2 hours going over with me every possible treatment option. The bottom line as it circled around was the same path I was on.
Stage 2 reconstruction was done on November 2, 2010. I was groggy when the nurse gave me three half pills. When I asked what they were--she told me Viagra which I knew was the same drug as Revatio for PH so I took them. The previous inpatient stay I brought and took my own PH drugs. This time I would only be in overnight. Within a short time my BP fell out the bottom and I spent the night in trendelenberg position (head down, feet up) and taking loads of IV fluids. By morning my BP was up to my low normal and I was discharged. Later that day the specialty pharmacy called about filling the Letairis. When given the opportunity to speak to the pharmacist I asked him if Viagra can be split. His answer was absolutely not as you interrupt the special coating that allows the drug to be absorbed slowly. having three half pills--I had 3 areas from which rapid absorption occurred.
With everything going on I was forced to cancel our yearly fall PH golf tournament. That was sad but I saw no way for it to take place. We would reschedule it for the spring.
My husband wanted a different course for the tournament. We spoke to them in early December and set the date--May 14th. I had not planned on working on the tournament until after the first of the year but had a call asking me to submit a grant application before the first of the year. This required a budget, action plan, timeline and the grant application. Wow--right here before Christmas. It was submitted in a timely fashion and approved.
Real work on the PH tournament started after the January 1st. There were other grant applications to make, save the date card to make and mail, letters to write, registration forms to make and mail, businesses to visit. Right in the height of these activities I fell and sustained a significant injury that had me non-weight bearing for 5 weeks--bone bruise of the right knee again along with a large hematoma under the kneecap. How could the tournament work be done. It was extremely hard. I wrote more letters than ever before using the laptop upstairs where I could keep the knee elevated but the wireless printer was downstairs in the computer room. So I would print and print letters. When my husband came home he would collect all the letters and bring them up to be stuffed and prepared for mailing. This went on for weeks. Finally I was able to start putting weight on the knee and it was off to PT, still trying to pull this tournament together.
The NC Cure PH Golf Tournament came off with a few only a few hitches like 2 weeks before the golf course did not plan us to needing be inside as there was also a wedding and we were not supposed to bring our own food. Well they improvised and allow s to bring food since it was already ordered and they rearranged furniture to allow us to be inside. Plus the last minute doctor I enlisted to speak, called early that morning. He could not come as his kids were sick. did I believe him--yes I did.
A couple great things happened with regards to the tournament. One couple who always played with us had been hounding a friend who is general manager of the KIA dealership to put a car up for a hole in one prize. he finally agreed. We spoke briefly on the phone twice. When we finally met on tournament day he said to me "I had no idea what pulmonary hypertension was so I asked my mom who is a retired nurse. Anytime you do one of these events I will be happy to sponsor a car as a hole in one prize". WOW! I could hug his neck.
The other wild event kind of transpired with a lot of divine intervention. I her name on facebook--a longtime childhood friend of my son. She used to work in the NASCAR business and thought maybe she could get me a door prize or silent auction item. I sent her a private message. She called a few days later and explained that she has been out of the business for a long time and lost most of her contacts but she would try. Later she told me she prayed about it as she wanted to get me something special. Did not hear from her for a few weeks. She called to tell me what happened. Since her husband restores and builds race cars they were invited to the 2011 NASCAR Hall of Fame dinner. she was not feeling well that evening and her husband went alone. He came back just as excited as a kid getting his first puppy. Tiff won the grand door prize. As he was telling her what it included she is shaking her head until he got the message--we can't keep this. Nope! I prayed about it and it is going to Cindy. You would not believe but it was a NASCAR racing helmet signed by this year inductees--Richard Petty, Bobby Ellison, Junior Johnson, Ned Jarrett, and a could other that right now slip my mind. Plus there were 4 tickets to the pole race Thursday before the Coca Cola 500 and a copy of the photo CD that was shown during the dinner. Can you believe it. Eat your heart out racing fans. We had no idea what the helmet was worth. I received it 3 days before the tournament. Feverishly I snapped several pictures and forwarded to a sports memorabilia company to get an appraisal. Because the signatures were not authenicated the estimate was low $1650 to $1750. There was no time for the authentication process. Here is where the story gets good. A three way friendship because of different reason brought all this together. I called a nurse I used to work with as our former boss had passed away. They are also friends with Tiff's mom and her husband. We know Tiff and her mom from living 4 houses apart years ago when our kids were little. My son and Tiff stayed friends all through school and college. Kathy, the nurse already knew about the helmet when I called her. She told me her husband would start the bidding at $500 even though he would not be at the tournament. We did not get one bid on the helmet starting at $500. I contacted Tiff to talk about the three options. 1) I could see if Virgil was still interested in the helmet for $500. 2) I could spend another $150 and get authenticated or 3 I cold give it back to Tiff to wrap up and surprise her husband at Christmas. Tiff said hat if Virgil was not interested she would buy it back. There is no way I would let her buy her own helmet. After calling Kathy to see if her husband was still interested, she becomes very quiet on the phone. It seemed like 20 minutes went by before she finally said "let me see if I can get more money out of him". We laughed. A few days later when we spoke she told me what she said to him, "Cindy Said she got one bid on the helmet but if you still wanted it she would let you have it for $600". SOLD just like that. If he ever finds out the only other bid was his--he would murder bothe of us. Not really--he knows we are both certified nuts anyway. The tournament netted just over $18,000 of which $5000 will go toward patient scholarships and the rest to research. Thanks to all those who helped make this event possible.
We just wrap up a busy month with the golf tournament and along comes June. I had been helping One of the UT employees for several months with details for their upcoming PH 5 K Run. All proceeds were to benefit all the Carolina PH support groups. Went down to Raleigh the night before the race. Dinner was great fun but 4am came very early. John and I were out there just after 5 AM. I was amazed at the response of the event for a first time event. Figures have it around maybe 300 people. Somewhere around $17000 were raised. PHA decided to use the funds for Conference scholarships. We are so blessed.
July brought the UT Educational Dinner. It was great--met old and new friends.
As mentioned July 1st is the beginning of my New Year. With the breast cancer behind me, I can now focus on PH awareness and finding a cure. Before moving into that mode we had our grandson visit one week in July and one week in August. Kids are so full of energy and so very smart. He was a joy.
Thanks for listening. For more PH information visit www.phassociation.org
Cindy
Monday, July 5, 2010
We made It
I sincerely hope that all who were able to attend the 9th International Pulmonary Hypertension Conference last week in California learned a lot and had as much fun as I did. It was a great conference. See you in Orlando 2012. Don't miss it.
Saturday, March 13, 2010
Preparing for 2010 Conference
The June conference will be the best ever. Excitement is mounting as the time draws closer and travel plans are a work in progress. I traveled to California last week for meetings and some final conference preparations. It will be great. The weather should be warm in the upper 80s with zero humidity making it easy for us to breath. Starting June 1st I am going to slowly start adjusting my sleep pattern since CA is 3 hours behind the East Coast. I want to be awake and enjoy every minute there. See you in sunny CA.
Being Part of Path to a Cure
Piedmont PH Support Group had 12 patients, family and friends show up for our Path to a Cure Unity Walk that was held February 23, 2010 at Hanes Mall in Winston-Salem, NC. Thanks to Barbara Hockaday, manager of the local Accredo office for providing sandwiches and water. $425 was collected to support the efforts of Dr Frantz, Dr Benza and Jessica Lasar to not only increase PH awareness but raise research funds to find a cure. Thanks--we really appreciate being part of this event.
Arrangements were finalized for Wednesday February 24, 2010 for our conversation with the mountain climbers. As the time drew near a call came in explaining how sick the group was and the call would need to be rescheduled. The window of opportunity was not very big. The following day the conference room was not available and Friday I had an appointment with a new cardiologist which was already put off once. (The doctor rescheduled so he would have more time to go over all the records. LOL). By the time it could be rescheduled the guys would already be well off the mountain.
To my surprise Jessica from PHA called mid morning on Thursday, February 25th. Dr Benza and Dr Frantz checked in with them. Jess wanted to try to patch the call to me. This was so unexpected but so exciting--totally unexpected. We had a great conversation talking about many different things from our walk, the snow, the beautiful view, climbing the mountain, being SOB. Thanks so much for sharing your adventure with us.
We are not only thankful that all three of you made it home safely but for your efforts to combat this disease.
Arrangements were finalized for Wednesday February 24, 2010 for our conversation with the mountain climbers. As the time drew near a call came in explaining how sick the group was and the call would need to be rescheduled. The window of opportunity was not very big. The following day the conference room was not available and Friday I had an appointment with a new cardiologist which was already put off once. (The doctor rescheduled so he would have more time to go over all the records. LOL). By the time it could be rescheduled the guys would already be well off the mountain.
To my surprise Jessica from PHA called mid morning on Thursday, February 25th. Dr Benza and Dr Frantz checked in with them. Jess wanted to try to patch the call to me. This was so unexpected but so exciting--totally unexpected. We had a great conversation talking about many different things from our walk, the snow, the beautiful view, climbing the mountain, being SOB. Thanks so much for sharing your adventure with us.
We are not only thankful that all three of you made it home safely but for your efforts to combat this disease.
Wednesday, February 17, 2010
Hear is Talking to You
As you may know the Piedmont PH Support Group is hosting a Kilimanjaro Unity Walk on Tuesday February 23, 2010 from 6-8 pm starting at BestHealth in Hanes Mall; Winston-Salem, NC. We are excited about this event hoping we can add some to the research funds.
Arrangements have been ironed out for us to actually speak to the our heroes climbing Mt Kilimanjaro via satellite phone link up. Since this could only be arranged from 8 am - 12 noon while they are in base camp, February 24th at 11 am was selected, the day after our walk. Many PH patients are not early risers. LOL
We needed to arrange a conference room with a good speaker phone. So if you are in the area on Feb 24th come join us on the Campus of Wake Forest University Baptist Medical Center. We will be on the 4th floor Miller Street conference room. The building is located at the corner of Miller Street and Cloverdale Avenue; Winston-Salem, NC next to Wendy's. Look forward to seeing you there.
Thanks team.
Arrangements have been ironed out for us to actually speak to the our heroes climbing Mt Kilimanjaro via satellite phone link up. Since this could only be arranged from 8 am - 12 noon while they are in base camp, February 24th at 11 am was selected, the day after our walk. Many PH patients are not early risers. LOL
We needed to arrange a conference room with a good speaker phone. So if you are in the area on Feb 24th come join us on the Campus of Wake Forest University Baptist Medical Center. We will be on the 4th floor Miller Street conference room. The building is located at the corner of Miller Street and Cloverdale Avenue; Winston-Salem, NC next to Wendy's. Look forward to seeing you there.
Thanks team.
Friday, February 12, 2010
Media Madness
Diane Ramirez is working with her contacts at the local Fox News. They did a PH story for us in November 2008 for Awareness Month. Our hope is for them to do a story about the Kilimanjaro Climb and our walk to be held on February 23 at Hanes Mall in Winston-Salem, NC.
I have been in touch with the WS Journal who previously did a story regarding David, one of the PH kids in our support group. I am convinced Lisa, the reporter will be back in touch in the next couple of days with an answer.
Excitement is mounting!
I have been in touch with the WS Journal who previously did a story regarding David, one of the PH kids in our support group. I am convinced Lisa, the reporter will be back in touch in the next couple of days with an answer.
Excitement is mounting!
Sunday, February 7, 2010
Support the Kilimanjaro Climb
Good Evening. This is definitely more fun than watching the Super Bowl!!
As you may know a little more than a week from now, Dr Frantz from the Mayo Clinic, Dr Benza and Jessica Lazar from Allegheny General in Pittsburgh will be starting out on a journey that will take them close to the top of the world. They are doing this in support of us, patient with Pulmonary Hypertension. We need to support them as in doing so we are also helping ourselves. Researches believe a PH cure is just on the horizon. The time it takes to get to the horizon will be shorter due to the efforts of caring people like these three.
Have a great time you guys. Be safe. Bundle up and thanks a million.
As you may know a little more than a week from now, Dr Frantz from the Mayo Clinic, Dr Benza and Jessica Lazar from Allegheny General in Pittsburgh will be starting out on a journey that will take them close to the top of the world. They are doing this in support of us, patient with Pulmonary Hypertension. We need to support them as in doing so we are also helping ourselves. Researches believe a PH cure is just on the horizon. The time it takes to get to the horizon will be shorter due to the efforts of caring people like these three.
Have a great time you guys. Be safe. Bundle up and thanks a million.
Tuesday, January 12, 2010
Jury Duty
My husband receives a summons for jury duty at least once a year. I never get one. It has probably been 15+ years since I had one. Believe it or not a summons came for me in the mail today. Yikes! February 23rd, the same day as our Unity Walk supporting Dr Frantz, Dr Benza and Jessica as they trek up Mt Kilimanjaro for PH. Do you think the judge will let me off for this reason? Maybe I could get him to donate! LOL. I can be convincing!
The day before I call to see if my assigned number is required to report. I should still have enough time even if I need to show up jury duty. I wiIl need a back-up plan in case I'm not out in time. John says you stay until they are finished with you. What next Charlie Brown?
The day before I call to see if my assigned number is required to report. I should still have enough time even if I need to show up jury duty. I wiIl need a back-up plan in case I'm not out in time. John says you stay until they are finished with you. What next Charlie Brown?
Saturday, December 19, 2009
2009 PAH Reflections
Wow the year is almost gone again. Where does the time go? Another good year for Piedmont PH Support Group. PH activities are always in the forefront. I need to comment more frequently as I will probably forget something important. Give me a minute to think of everything that happened in 2009.
---Good shock of all shocks, I was asked to serve on the PHA Board beginning in January 2009. This is a definite honor. Attended the first meeting in Orlando February 2009--truly a learning experience. There is so much behind the scene work that makes the PHA organization work like a fine-tune, oiled machine. The dedication and commitment of the physicians, staff, volunteers , patients, families and friends to find a PH Cure is beyond remarkable.
---Our group again participated in the spring Belk's Charity Day. This is an easy fundraiser with no cash out of pocket. Anyone who has a Belk's in their area can contact the store office to getout details. They hold a spring and a fall charity day.
---May 2009 we held our second 5K PH walk/run. Even with the rain we had 40 participants and raised $10,000 for PH research. The new PHA calendar arrived today. Diane is the one holding the sign, "I walked 5K for PH.
---Traveled to California to the 2010 Conference Hotel to help with logistics planning. The conference is going to be awesome. Again there is so much work that goes into pulling off a quality event of this magnitude. You will just love it. Even John is planning to attend conference this time. I think Disneyland was more a pulling force than PH. LOL He is still a kid at heart.
---Diane Ramirez again arranged congressional visits in NC expanding outside of our group's representatives. Diane contacted other support group leaders in NC, schedule congressional visits and arrange for patients/family to attend their district visit. During the summer visits were made to Rep Heath Shuler, Rep Sue Myrick, and Rep Patrick McHenry with another Representative co-sponsoring the Tom Lantos Research and Education Act without even having a visit. To my knowledge NC has the most co-sponsors. Go Tarheels!
---Diane had her PH story published in FOCUS, a patient information magazine distributed to hundreds of physicians offices in the area.
---September 2009 we held our 4th NC Cure PH Golf Tournament. The golf pro suggested that we schedule 4-5 tournaments a year. It doesn't matter if we hold the tournament or not, just schedule it as they want guaranteed rain for the course. 72 golfers played as the rain fell all day long. Three of our four tournaments had rain. Is there a black cloud hanging overhead?
---October 09 was the second Board Meeting. Two friends traveled to DC with me. We drove up a couple days early to hit Capitol Hill. Diane tried to arrange a meeting with newly elected Senator Kay Hagan but it did not happen. We were encouraged to attend her "Wednesday Morning Coffee for Constituents." Only one other couple showed up thus we probably had more time with the Senator than if we had had an appointment.
---October 2009 John and I attended the first "Through Tears Comes Laughter" a PH event in Charlotte, NC. It was variety type show with musical groups and comedians (one from Comedy Central and the other from the Last Comic Standing). We laughed so hard we both cried. Glenn Johnson did a fantastic job of organizing this event. If I am not mistaken he is planning this event again for 2010. Without a doubt if you live anywhere near Charlotte, NC area, this event is a must.
---Sometimes you have an exceptional speaker at the support group meeting that after it is over you wished it had been taped. This was the case of our October 09 meeting. I met Dr Daniel Bensimhon, a cardiologist from Greensboro, NC (previously at Duke with Dr Tapson) maybe 2 years ago. I knew that if he ever agreed to speak to our group it would have to be taped. How fortunate we were to have him present on Right Heart Catherization with Invasive Exercise Testing. His presentation was so much more. It had a bit of history mixed with some humor and a ton of information regarding echo-cardiograms, R & L heart caths and exercise testing explained in a fashion that simplified grasping difficult concepts. Yes he takes wedge pressures during the exercise phase. It was amazing. Thanks Dr Dan!
---In November, a PH information table was again set up at Wake Forest University Baptist Medical Center. You would think the Advances in Pulmonary Hypertension had wings as they flew off the table as fast as they were replenished. This is good!!
---John and I traveled to northwestern PA to visit my mom who is in poor health. Our return trip took us via DC and we attended the 09 November PH Congressional Luncheon. This was a first for John. By the second congressional visit John was right in the thick of the conversation. This was good as he now knows that we do actually work when going to DC. LOL
John is a great guy. He calls himself the group's goPHer. Without his help and support, we could not accomplish half of what we do. He is literally our physical strength. Thanks John. Love You!
---Last, I recently contracted another fatal condition--might even be more serious than PH. I have become a "Twlight" junkie just in the past 2 months. Read all the books twice. Saw the first movie a bunch of times (actually have the DVD and the soundtrack). So far have only seen the second movie, "New Moon" once. I never liked vampire movies watching them with my dad as a kid. This series is slated to be the best love story since Titanic. Is there any hope for recovery doctor? LOL
Merry Christmas and Healthy New Year to all.
---Good shock of all shocks, I was asked to serve on the PHA Board beginning in January 2009. This is a definite honor. Attended the first meeting in Orlando February 2009--truly a learning experience. There is so much behind the scene work that makes the PHA organization work like a fine-tune, oiled machine. The dedication and commitment of the physicians, staff, volunteers , patients, families and friends to find a PH Cure is beyond remarkable.
---Our group again participated in the spring Belk's Charity Day. This is an easy fundraiser with no cash out of pocket. Anyone who has a Belk's in their area can contact the store office to getout details. They hold a spring and a fall charity day.
---May 2009 we held our second 5K PH walk/run. Even with the rain we had 40 participants and raised $10,000 for PH research. The new PHA calendar arrived today. Diane is the one holding the sign, "I walked 5K for PH.
---Traveled to California to the 2010 Conference Hotel to help with logistics planning. The conference is going to be awesome. Again there is so much work that goes into pulling off a quality event of this magnitude. You will just love it. Even John is planning to attend conference this time. I think Disneyland was more a pulling force than PH. LOL He is still a kid at heart.
---Diane Ramirez again arranged congressional visits in NC expanding outside of our group's representatives. Diane contacted other support group leaders in NC, schedule congressional visits and arrange for patients/family to attend their district visit. During the summer visits were made to Rep Heath Shuler, Rep Sue Myrick, and Rep Patrick McHenry with another Representative co-sponsoring the Tom Lantos Research and Education Act without even having a visit. To my knowledge NC has the most co-sponsors. Go Tarheels!
---Diane had her PH story published in FOCUS, a patient information magazine distributed to hundreds of physicians offices in the area.
---September 2009 we held our 4th NC Cure PH Golf Tournament. The golf pro suggested that we schedule 4-5 tournaments a year. It doesn't matter if we hold the tournament or not, just schedule it as they want guaranteed rain for the course. 72 golfers played as the rain fell all day long. Three of our four tournaments had rain. Is there a black cloud hanging overhead?
---October 09 was the second Board Meeting. Two friends traveled to DC with me. We drove up a couple days early to hit Capitol Hill. Diane tried to arrange a meeting with newly elected Senator Kay Hagan but it did not happen. We were encouraged to attend her "Wednesday Morning Coffee for Constituents." Only one other couple showed up thus we probably had more time with the Senator than if we had had an appointment.
---October 2009 John and I attended the first "Through Tears Comes Laughter" a PH event in Charlotte, NC. It was variety type show with musical groups and comedians (one from Comedy Central and the other from the Last Comic Standing). We laughed so hard we both cried. Glenn Johnson did a fantastic job of organizing this event. If I am not mistaken he is planning this event again for 2010. Without a doubt if you live anywhere near Charlotte, NC area, this event is a must.
---Sometimes you have an exceptional speaker at the support group meeting that after it is over you wished it had been taped. This was the case of our October 09 meeting. I met Dr Daniel Bensimhon, a cardiologist from Greensboro, NC (previously at Duke with Dr Tapson) maybe 2 years ago. I knew that if he ever agreed to speak to our group it would have to be taped. How fortunate we were to have him present on Right Heart Catherization with Invasive Exercise Testing. His presentation was so much more. It had a bit of history mixed with some humor and a ton of information regarding echo-cardiograms, R & L heart caths and exercise testing explained in a fashion that simplified grasping difficult concepts. Yes he takes wedge pressures during the exercise phase. It was amazing. Thanks Dr Dan!
---In November, a PH information table was again set up at Wake Forest University Baptist Medical Center. You would think the Advances in Pulmonary Hypertension had wings as they flew off the table as fast as they were replenished. This is good!!
---John and I traveled to northwestern PA to visit my mom who is in poor health. Our return trip took us via DC and we attended the 09 November PH Congressional Luncheon. This was a first for John. By the second congressional visit John was right in the thick of the conversation. This was good as he now knows that we do actually work when going to DC. LOL
John is a great guy. He calls himself the group's goPHer. Without his help and support, we could not accomplish half of what we do. He is literally our physical strength. Thanks John. Love You!
---Last, I recently contracted another fatal condition--might even be more serious than PH. I have become a "Twlight" junkie just in the past 2 months. Read all the books twice. Saw the first movie a bunch of times (actually have the DVD and the soundtrack). So far have only seen the second movie, "New Moon" once. I never liked vampire movies watching them with my dad as a kid. This series is slated to be the best love story since Titanic. Is there any hope for recovery doctor? LOL
Merry Christmas and Healthy New Year to all.
Monday, November 24, 2008
PH Congressional Luncheon
If I don't write soon all that happened with the PH Congressional Luncheon will be gone. Six of us-Diane, Tonya, Medeta, Sheree, Meg and myself traveled in Meg's van to DC. There were frequent stops as it seemed no one was on the same eating schedule of bathroom break. What a trip up and back.
We were able to accomplish the goals set out for the trip. Besides attending the luncheon we wanted to personally thank Senator Elizabeth Dole for her help to the PH community. She had agreed to introduce the Tom Lantos PH Research and Education Act into the Senate. She was out in the Capitol when we arrived at the office ;but her general counsel, Dean Hingson assured us he would pass the message on to her.
We did meet up with Senator Richard Burr for a photo op on the steps of the Capitol Building. This almost did not happen as the location was changed with out notifying part of the group--namely the PH patients from NC. It was a very cold day and Senator Burr was out there in a suit jacket. We all had the shivers. He was about to leave before we arrived when someone remembered that the 5th graders from Madison, NC had made cards for him. While he collected we arrived in the nick of time for the picture. I do believe there were ice crystals on the Senator's hand when he shook my hand. LOL
We were able to accomplish the goals set out for the trip. Besides attending the luncheon we wanted to personally thank Senator Elizabeth Dole for her help to the PH community. She had agreed to introduce the Tom Lantos PH Research and Education Act into the Senate. She was out in the Capitol when we arrived at the office ;but her general counsel, Dean Hingson assured us he would pass the message on to her.
We did meet up with Senator Richard Burr for a photo op on the steps of the Capitol Building. This almost did not happen as the location was changed with out notifying part of the group--namely the PH patients from NC. It was a very cold day and Senator Burr was out there in a suit jacket. We all had the shivers. He was about to leave before we arrived when someone remembered that the 5th graders from Madison, NC had made cards for him. While he collected we arrived in the nick of time for the picture. I do believe there were ice crystals on the Senator's hand when he shook my hand. LOL
Tuesday, November 18, 2008
National PAH Blog Day
November is Pulmonary Hypertension Awareness Month. Hopefully with all the work done by so many PH patients, family and friends, many more will become aware and knowledgable of this disease. Saving one life or having just one person diagnosed and treated in a timely fashion will make all our efforts worth while.
The Piedmont Pulmonary Hypertension Support Group has been extremely busy since the PH Conference in June 2008. Here is a list of what I can remember in no special order. These things could not have happened without the total dedication and hard work of Diane, our support group's Advocacy Chair.
If we can do it so can you. Having Diane as the Advocacy Chair made all this possible. She kept up with who she spoke with, when they could meet, calling members, sending out thank you notes plus a lot more. There is so much work that still needs to be done. Share the work load. The support group leader can not possibly do everything--we also have PH and get tired. Just knowing we are helping is a true joy but we have fun, laugh hystirically, and shed tears of joy all at the same time. November may be the official Awareness Month but those of us with PH need to work on getting the word out all year long. Offer your services to your Support Group Leader. Maybe you have a special talent the leader is not aware of. Maybe you are a bit shy--just speak up. Don't wait to be asked. We all get very tired and do rest when it is needed. It makes the work a bit easier if we all pitch in.
Cindy
Piedmont PH Support Group Leader
North Carolina
Questions: cpickles50@gmail.com
The Piedmont Pulmonary Hypertension Support Group has been extremely busy since the PH Conference in June 2008. Here is a list of what I can remember in no special order. These things could not have happened without the total dedication and hard work of Diane, our support group's Advocacy Chair.
- Visited Torre Jessup, District Deputy for Representative Mel Watts
- Visited Representative Howard Cobble
- Visited Representative Virginia Foxx
- Visited Rose Auman, District Deputy for David Price
- Visited Representative Brad Miller
- Visited Senator Elizabeth Dole who agreed to introduce the Tom Lantos Research and Education Act into the Senate. Those of us with PH were saddened when Senator Dole did not get re-elected. We will continue this mission with Senator-Elect Kay Hagan.
- Gave an advocacy presentation to a neighboring support group
- Attended a PAH presentation/dinner in Charlotte, NC
- Held the third NC Cure PH Golf Tournament raising approximately $12,500 for PH research
- Distributed PH information during Belk's Charity Day November 15, 2008
- Cindy attended Lewisville, NC Town Council Meeting November 13, 2008. Gave a three minute PH presentation to the council. Proclamation granted for November being PH Awareness Month in Lewisville. (Just a note--our current governor does not do proclamations thus the request on the local level)
- Arranged and set up PH information table in the lobby of Wake Forest University Baptist Medical Center during the week of November 17-21, 2008
- Diane has Interview November 18, 2008 for featured article in local newspaper--That is today!!
- Interview scheduled with Fox 8 News November 19, 2008
- Plan to attend PH lecture presented by Dr F. Torres from SW University of Texas November 19, 2008 (this is immediately following the TV interview at the Medical Center--perfect timing!)
- Will be attending The Pulmonary Hypertension Congressional Luncheon Thursday November 20, 2008.
- Plan to attend the PH Christmas lunch presentation in Ranole, VA December 2008. Dr Victor Tapson from Duke University is the speaker
If we can do it so can you. Having Diane as the Advocacy Chair made all this possible. She kept up with who she spoke with, when they could meet, calling members, sending out thank you notes plus a lot more. There is so much work that still needs to be done. Share the work load. The support group leader can not possibly do everything--we also have PH and get tired. Just knowing we are helping is a true joy but we have fun, laugh hystirically, and shed tears of joy all at the same time. November may be the official Awareness Month but those of us with PH need to work on getting the word out all year long. Offer your services to your Support Group Leader. Maybe you have a special talent the leader is not aware of. Maybe you are a bit shy--just speak up. Don't wait to be asked. We all get very tired and do rest when it is needed. It makes the work a bit easier if we all pitch in.
Cindy
Piedmont PH Support Group Leader
North Carolina
Questions: cpickles50@gmail.com
Monday, November 17, 2008
Anniversary
Today is an important day in my life. November 17, 2008 John and I have been married 36 years. We grew up in the "hippie era". LOL. Where did all the time go? With a blink of an eye, it was gone. I never thought about getting old as I really did not plan for it to happen. We would live happily ever after. Then on December 29, 2002 everything changed. That was the day I became acutely ill and learned after a 2 1/2 year roller coaster ride that I had pulmonary arterial hypertension. Now every day is a true gift to be shared with family and friends.
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