Saturday, November 7, 2015

PH Awareness Month

Well WOO HOO. I went to my State Representative Tedd Nesbit's office where he presented me with the proclamation that November is PULMONARY HYPERTENSION AWARENERSS MONTH in the Commonwealth of Pennsylvania. My brother is doing it for the Commonwealth of Massachusetts and a member of the Cleveland Area SG is doing it for the State of Ohio.

Wednesday, June 26, 2013

PHA On-Demand

Last night it was my honor and privilege to represent the Pulmonary Hypertension Association at one of their PHA Medical Education events. An On-Demand Program.

Dr. Omar Minai from the Cleveland Clinic (Cleveland, Ohio) was the guest speaker and his presentation was titled: “Suspecting Pulmonary Hypertension in the Dyspneic Patient: Who, When, and How.” It was an excellent presentation, actually one of best I’ve ever heard.

And it’s a shame, but I understood it. Now this isn’t a doctor to patient group presentation, it is a doctor to doctors and nurses and clinicians in general. The presentation is a CME course/class offered by PHA for clinicians; especially designed for pulmonologists, cardiologists, rheumatologists, internists, and primary care physicians, as well as nurses, physician assistants, and other allied health professionals who help care for patients with pulmonary arterial hypertension (PAH).

On-Demand program is something the Pulmonary Hypertension Association provides and is designed to improve competence, performance and patient care practices by instructing clinicians in the highest quality of care for patients with PAH. And it is FREE.

I was asked to represent the Pulmonary Hypertension Association and tell all those wonderful things you wanted to know (and maybe afraid to ask  ) and give a very mini presentation on what the Association provides (as in the paragraph above) not only provided to clinicians but also phor patients and caregivers and the PAH community in general. You try doing that in 5 to 7 minutes. I had 12 slides which did cover it all but again I was to do an ad lib version. Now, I’m not sure you realize this but there are over 10K pages on the PHA web site – you try to explain it all in those 5 to 7 minutes 

I touched on their research,, public awareness and services – how they connect with colleagues – upcoming symposium for clinicians and of course the PHA 11th International conference and scientific sessions (in Indianapolis, IN next year). Also advances in PAH. How to ask phor and request medical education programs such as the On-Demand; the preceptorship program; the PHA Online University; last but not least the PHA Patient and Caregiver Services. Phor that one, I brought along my copy of the Survivors Guide, an Envelope of Hope post card, a copy of Pathlight and some miscellaneous brochures I have. I really went into the Patient to Patient Support Line, the email Mentor program, how PHA offers chats for patients, caregivers, and specific “age” group chatroom. How they will mail out a packet of info to newly diagnosed pholks. And most importantly how they offer education for patients and caregivers with conferences, On the Road seminars, conference calls, the list goes on. Being a Support Line Volunteer and also an email Mentor, I told a couple of stories on what patients and caregivers may ask, share or vent.

Wouldn’t you know I did NOT mention the upcoming Walk & Roll that the Cleveland Area PH Support Group is having on July 13th. I could kick myself phor that one, after all, this meeting was held in Akron and the walk is at the Akron State Park.  And I wanted to mention and ask them to call their respective Congressperson to co-sponsor the new PH bill HR 2073   Well, slap me back side of the head.

Now this part is interesting. Tom (the husband I’m not allowed to live with) usually takes me everywhere I need to go and I thought phor this event I would ask a friend to go along with me, (give him a break) and you know to be my co-pilot and make sure I went in the right direction. I asked one of the ladies from church to ride along. She said she found the session to be very informative and although she didn’t understand it all, she got the jist of it. On the drive home we talked about PAH and I did the ad lib version of how it works (or how our lungs and heart don’t) and she said “I think my brother-in-law may have this he’s always short of breath and has trouble doing things” I gave her a couple of the brochures I always have with me and it sent goose bumps up and down my spine. God certainly does work in mysterious ways.

Remember to smile -- it's contagious

Saturday, March 23, 2013

I'm a YO YO .... again

Well, here I go once again. Up or down... that would be how I feel. You know when you have a chronic illness you have good days and not so good days. Therefore, I consider myself a yo yo of sorts. I'm up one day and down another. At least the up days, those good days, still out number the not so good days. I refuse to have a bad day. It's just not in my spirit.

I am so glad I finally figured out how to blog once again. Been a while. Since I had my operation I haven't been on as often as I would like. First cause was - I couldn't type (not that I really can right now) and then I spent so much time learning how to walk, how to feed myself and yes how to type once again; and the other things that go along with having a "normal" life. Who me, normal. As we say in the PH (pulmonary hypertension) community, we now live a new normal.

You ask what is pulmonary hypertension: "High blood pressure in the lungs is called pulmonary hypertension (PH) or pulmonary arterial hypertension (PAH). Once considered rapidly fatal, this rare disease is still very serious but treatable. Yet even with nine therapies available, many patients receive proper diagnosis and treatment too late. Symptoms often lead to misdiagnosis of pulmonary hypertension as sleep apnea, COPD, asthma or obesity. Many patients will see 3 or more different physicians over a 3-year period before they are properly diagnosed with PAH. The average time between PH symptom onset and diagnosis is 2.8 years Almost ¾ of patients have advanced PH (Class II or IV) by the time they are diagnosed. The diagnosis time has not changed in over 20 years." partially borrowed from the Pulmonary Hypertension Association

I have this - this life threatening disease, others also have this disease, approximatey 30,000 in the USofA and about 150,000 world-wide. Not a very common disease at all considering, and I call it the Dastardly Disease(see Novemer 2010); I wrote a poem about it. Says it like it is. While I was in the hospital (suppose to be there 5 days and ended up being almost 3 months)one of the nurses copied my poem, enlarged it and taped it to the wall. I made every doctor, nurse, techie, cleaning staff READ IT. It brought tears to some and the docs said it really does say it like it is.

I think you can tell by my writing here why I titled this YO YO!. Not only does my mind go up and down, so do my innards :D The hope was with the open heart surgery I would be cured of the Dastardly Disease - didn't happen but I am on half the medicatin I was on, my heart is getting stronger and stronger. I am able to now exercise every day (week day, I take the weekends off) and I can now walk without looking like a toddler with a "load" in their diaper. Took a while (almost 2 years) but I'm getting there.

Yet, wouldn't you know, something is still going on. I have great doctors and they listen and follow thru. i.e. last week I had a 24 hour Holter Monitor and a chest x-ray. Don't have the results of the Holter yet but the x-ray showed no signs of pneumonia. Not wheezing or anything like that, just something isn't right in the bod. So I'm upsy, downsy, like a yo, yo.

I'll try to write more often, now that I figured how to do this; well, I think I have .... AND



Sunday, December 2, 2012

The Advent Season

The time before Christmas, at many churches, is Advent, a season of preparation for Christmas. We prepare for it by celebrating the birth of Jesus. In Advent we are reminded of how much we also need a Savior, and we look forward to the second coming even as we prepare to celebrate his first coming at Christmas. Let us keep in mind the first in Bethlehem and the second yet to come.

Advent can be a solution to the age-old problem of secular Christmas vs. spiritual Christmas. We need to recognize that Christmas is a time to celebrate the birth of Jesus. Unfortunately, we spend most of our time preparing, not for a celebration of the birth of Jesus, but for fulfilling the demands of the season. We have to buy presents for many people and make sure they are all wrapped and delivered. We have parties to attend and parties to host. We have relatives who come to visit or we are the relatives who go elsewhere to visit.

Are we focusing on the real reason for the season – the birth of Jesus? Are the traditions of Advent helping us to focus more on the Lord, to get in touch with our need for Him, to replenish our hope, and to celebrate Christmas with greater meaning and depth? Or are we facing heavy competition from retailers, relatives and friends. How do we save Christmas from being consumed by consumerism? Not to say giving gifts is wrong but our priorities and overspending, going into debt to give what we can’t afford and giving something they really don’t’ want or need. Instead, we need to put the needs of others above our own our actions need to speak so much louder than our words. Materialism has hijacked Christmas and we need to get our priorities straight. Spend less but give more from your heart. Maybe we should change it to, we need presence not always presents.

The lighting of the Advent candles is a way of preparing for the second coming of Jesus and focuses on Christ's threefold coming: past, present, and future. First, we remember the Lord's humble first coming in Bethlehem two thousand years ago. Second, we give thanks for His present and continual coming to us through His Word. Finally, we look forward with hope and longing to His second coming in glory on Judgment Day.

The first candle symbolizes the hope and anticipation of His coming and is purple or dark blue in color. The second candle we are to ask for forgiveness showing repentance, knowing Christ is the way, again purple or dark blue. The third candle is for joy and rejoicing with anticipation of His coming and is usually pink or rose in color. The fourth candle is a reminder that Christ will bring peace both in our hearts and to the world; this candle is also purple or dark blue. The center candle which is larger and is white is lit Christmas Eve and on Christmas Day and represents Christ himself who is born to save us from our sins. It is a celebration of the fulfillment of prophecy as represented in Jesus’ birth and hope in the fulfillment when Christ comes again. This one will continue to be lit during the 12 days of Christmas or until January 6th or the first Sunday thereafter. Some churches may use a different order for their Advent celebration or sermons but it will be close to this order. Possibly Hope, Peace, Joy, Love and the Christ candle.

May you all have a very Blessed Christmas and remember the reason for the season.


Smile – it’s one of the best gifts you can give someone.

Monday, April 16, 2012

Words to live by -- or make you think

I’m a thinker. Sometimes I may think too much and I’m sure other times I don’t think enough, either or here are some thoughts that may get you to thinking as well.

Having a chronic illness is not a pleasant thing. Some of us are “hit” harder than others. Some of us dwell too much on the negative and that it’s a life threatening disease; you must remember with proper treatment pulmonary hypertension is a doable disease. Being or thinking negative thoughts can possibly make things worse for us. Being anxious is not a good thing when you are sick; so shake it off and always take a step up.

A few years ago, this was sent to me. I don’t know who wrote it but it is an inspiration. One of those priceless moments.

One day a farmer's donkey fell down into a large well. The animal cried piteously for hours as the farmer looked down into the well and tried to figure out what to do.

Finally, he decided that the animal was way too old, and the well was useless and just needed to be covered up anyway; it just wasn't worth it to retrieve the old donkey.

He invited all his neighbors to come over and help him. They each grabbed a shovel and began to shovel dirt into the well. At first, the donkey realized what was happening and loudly cried.
Then, to everyone's amazement he got very quiet.

A few shovel loads later, the farmer finally looked down the well. He was astonished at what he saw. With each shovel of dirt that hit his back, the donkey was doing something amazing. He would shake it off and take a step up on the dirt.

As the farmer's neighbors continued to shovel dirt on top of the animal.... he would shake it off and take a step up. Pretty soon, everyone was amazed as the donkey stepped up over the edge of the well and happily trotted off!

Life is going to shovel dirt on you, all kinds of dirt. The trick to getting out of the well is to shake it off and take a step up each time.

Each of our troubles is a steppingstone. We can get out of the deepest wells just by not stopping and never giving up!

Shake it off and always take a step up.

And don't forget to smile -- it is contagious.

Saturday, April 14, 2012


As a child my Aunt bought me (from a yard sale) the book and records of Cinderella and one of my favorite songs from it was: A Dream is a Wish Your Heat Makes

A dream is a wish your heart makes
when you're fast asleep.
In dreams you will lose your heartaches,
whatever you wish for you keep.

Have faith in your dreams and someday,
your rainbow will come smiling through.
No matter how your heart is grieving,
if you keep on believing
the dream that you wish will come true.

I think of that now when I have this chronic disease, the dastardly disease pulmonary hypertension. My dream of course, would not to have it at all. Then, well I’m not sure it’s a dream, but I would like to get up from a chair and not have to worry about carrying my pouch – sometimes I wear it around my wasit but then if I do, it’s difficult to sit with it on so it’s just easier for me to carry it – some days it feels like it weighs 20 lbs when in fact it’s only about 4+ lbs. The pouch contains the pump and I “stash” a few other things in it as well, pen, paper etc.

I have an IV infusion medication. A tube goes into my chest and then follows the vein right into my heart. I am attached to this 24/7/365. I mix my medicine every other day and attach it to the pump that is attached to the IV line. “Have faith in your dreams and someday….” Someday maybe I will have another medication that won’t be attached to me. An oral medication would be great. Or maybe with all the research going on they will find a cure. Whoo Hoo on that one.

I think about the dreams that others mention. A trip to a favorite place, an extended vacation. Doing great at their job, finding romance :o}. There are all sorts of dreams. I think about the words to "The Impossible Dream"
To dream ... the impossible dream ...
To fight ... the unbeatable foe ...
To bear ... with unbearable sorrow ...
To run ... where the brave dare not go ...
To right ... the unrightable wrong ...
To love ... pure and chaste from afar ...
To try ... when your arms are too weary ...
To reach ... the unreachable star ...

And I think of Susan Boyle with her amazing voice that brings tears to my eyes and chills up my spine. She had a dream… and she gives me hope. She is an amazing inspiration to me and the words to "her" song; like I said, chills. One of the best inspirational videos ever - Susan Boyle – Britain’s Got Talent 2009

Remember to smile, it’s contagious.

Friday, April 13, 2012

Did you know…..

Friday the 13th. Variously believed to be a lucky or an unlucky day. Every year has at least one Friday the 13th, but never more than three. In numerology, the number twelve is considered the number of completeness, as reflected in the twelve months of the year, twelve hours of the clock, twelve gods of Olympus, twelve tribes of Israel, twelve Apostles of Jesus, the 12 successors of Muhammad in Shia Islam, etc., whereas the number thirteen was considered irregular, transgressing this completeness.

Friday has been considered an unlucky day at least since the 14th century's The Canterbury Tales, and many other professions have regarded Friday as an unlucky day to undertake journeys, begin new projects or deploy releases in production. Black Friday has been associated with stock market crashes and other disasters since the 1800s. And other traditions have the unlucky days as Tuesday the 13th or Friday the 17th. So depending upon which side of the ocean you are from, depends on which is a lucky or unlucky day.

So there you have it. It’s either lucky or unlucky. I prefer the lucky part myself. A lot of gratitude can change that attitude and today I was asked to list 10 things I couldn’t live without. With what I have been through, that just “ain’t gonna happen”.

I believe in being positive or having a positive attitude, I believe in being grateful for what I do have as simple as that may sound. I joke with phriends that I used to be rich and famous, now I’m poor an infamous. Having a life threatening dastardly disease just takes the “wind” away from you sometimes. So if we think positive and do “what the doctor orders” we should be on the right track to an almost “normal” as we can make it, life. Having a disability or an overwhelming disease can be life changing and life altering. Our routine is now compromised; although many have been known to get back into their grove; been able to go back to work; to live with their family. I have not been that lucky; but I’m doing and that’s what is important.

I have always considered 13 as a lucky number for me, just one of those things when I hear unlucky or a negative thought, I do my best to change it or turn it around. Sometimes it works, sometimes it doesn’t.

Remember to smile – it’s contagious
Try it, you’ll like it :o}