Tuesday, November 3, 2009
About Pulmonary Hypertension
When pulmonary hypertension occurs in the absence of a known cause, it is referred to as idiopathic pulmonary arterial hypertension (IPAH). This term should not be construed to mean that because it has a single name it is a single disease. There are likely many unknown causes of IPAH. IPAH is extremely rare, occurring in about two persons per million.
Secondary pulmonary hypertension means the cause is known. A common cause of secondary PH are the breathing disorders emphysema and bronchitis. Other less frequent causes are the inflammatory or collagen vascular diseases such as scleroderma, CREST syndrome or systemic lupus erythematosus (SLE), the list goes on.
Pulmonary hypertension occurs in individuals of all ages, races, and ethnic backgrounds although it is much more common in young adults and is approximately twice as common in women as in men.
Merle - OHPA
Monday, November 2, 2009
Blood Clot in Lung can cause Pulmonary Hypertension
Pulmonary embolism, a blockage of an artery in the lungs, strikes an estimated 600,000 Americans every year and causes approximately 60,000 deaths. It is, in fact, one of the leading causes of sudden death in this country.
Pulmonary hypertension, on the other hand, is a condition that can strain the heart, which must work harder to push blood through the lungs, but one that is often ignored because it causes few or no symptoms in many patients.
It has been thought that only a few of those who survive a pulmonary embolism go on to develop pulmonary hypertension -- one in 1,000 at most. But the incidence amount of those patients studied (223) was much higher says a report in an issue of the New England Journal of Medicine.
At six months, 1 percent of patients had pulmonary hypertension. That increased to 3.1 percent after one year and 3.8 percent after two years. Hypertension generally developse slowly after a pulmonary embolism. There is "a honeymoon period" of a few months, and then the incidence begins to increase.
The condition can be caused by lung disease, by failure of the left side of the heart or by a congenital heart disorder such as a faulty valve. In a small number of cases, usually involving young women, there is no apparent cause.
These often are difficult to diagnose and have treatments that are quite different. For example, if the cause is a bad heart valve, surgery is done to replace the valve. If the cause is lung disease, treatment is aimed at correcting the lung condition.
When the cause is a plmonary embolism, an effective treatment is endarterectomy, surgery to removed the clots that are blocking the artery. The technique was developed at the University of California, San Diego, and is now widely used.
Often, the only warning sign of pulmonary hypertension is shortness of breath. And how often is that ignored
Opha
Saturday, October 31, 2009
In my humble opinion an epiphany of sorts
Occasionally, after specific things have been rattling around in our heads for awhile, there may be a fortunate moment when at some connections are made. I got lucky, I hope.
As I was contemplating and yes, that's as far as it got, repairing a closet door, it occurred to me that a recent PH Specialist visit which resulted in an outcome similar to that experienced 14 times by a PH patient described elsewhere, may not have been the disaster that it first seemed. Although the physician's impression was incorrect, ("I am not sure you have PH"), I most certainly recognize that he is an exceptional doctor. He is widely recognized as being an expert in certain PH areas and was a very impressive individual. Besides, I am not qualified to evaluate his medical skills, and will not attempt to do so. My disagreement is with the scope of the evaluation. Pulmonary function test and the six-minute walks are standardized screening and even confirmation features of nearly every pulmonary hypertension assessment conducted in the United States and elsewhere. They formed the basis for his opinion.
While statistically sound, these instruments do not address the many different types of PH, resulting in all too common diagnostic delays, disease progression and needless suffering. Clinical indications which can be quantified exist but are not usually detected during standard evaluations, such as presenting problems which are intermittent in terms of symptom intensity, as in sporadic pulmonary hypertension. Chronic thrombeombolic PH, that's where the spinner stopped on my wheel, and does not necessarily respond to standard evaluation as would idiopathic PH, and so on... I cannot state unequivocally how many different type/classes of PH have been identified, but my last count was between 8 and 10, which is quite likely an underestimate.
A subjective issue about which I have received multiple comments from other PH patients involves the use of outward personal appearance as a yardstick for overall health status. At least initially. Many of the replies to "my, you look great today!" are quite humorous and very creative. And ironically, most folks, regardless of their illness, do not wish to show up at their doc for help only to hear about how wonderful they appear! PH in particular is insidious in its tendency to hide beneath a superficial facade of decent health.
Diagnostically, right heart catherization is the gold standard, as we all know. Yet even it can be fickle. Today's advanced diagnostic imaging is imperfect. Indispensable of course, but imperfect nonetheless. During my all too common sleepless PH nights, I have reviewed volumes of nationally respected research generated by quality physicians at well-respected institutions, and there is a trend developing toward a more comprehensive clinical assessment. Including not only quantifiable information, the scope is expanding to include what are considered subjective measures, such a quality of life, extent of patient support system and daily functioning, ability to accomplish goals, as well as sleep quality and pain management.
After all, if we could all participate in a six-minute walk and the other function tests once a week for a year, if PH existed, it would be hunted down eventually. The alternative is more inclusive evaluation, drawing from the leading work in multiple areas relative to PH as a class of diseases. In my particular case, employing additional heart catherizations as a diagnostic instrument has been avoided for three years due to "risky" primary and secondary diseases. Consequently, the aforementioned recent, expectation-laden journey to a well-respected teaching hospital, famous for it's experts, resulted in what was perceived by some (and oh, yes I was a member at first) as basically the end of the story. This rendering, these thoughts, helped me to resolve any doubts and get on with the daily struggle to deal effectively with PH.
Don't get me wrong; while I chewed this dilemma every which way and back again, I wasn't having one of those rare 'good days', as I did during the PH assessment. I recall thinking during a pulmonary function test; I know I'm going to hit a home run on this thing, because expiration is not my major challenge. But during a 24/7 02, and too much TV day, when fatigue steam rolls me, I would have fumbled getting any inspiration worth reporting. I would have fallen asleep and missed the game. Excepting emergencies, timing an evaluation for a highly symptomatic day appears to be a poor approach; at least for me.
Which brings me back to that finely considered repair for my closet door, when the realization that the presence of other, perhaps more credible evidence was laying out on my coffee table. I raced, hobbled, banged my 02 bag against myself, but did reach my objective. The haste was necessary lest I forget why I went looking in the first place (oh the PH moments!). My prey was the fall 2009 Issue of the Pulmonary Hypertension Association Newsletter, "Pathlight". Slightly off-task but worth mentioning. I read elsewhere in a PHA publication: "When you can't breathe, nothing else matters." Absolutely no way I can conceive to improve on that sentiment.
Two articles I had read seemed not only to be relative to my recent experience, but to the slow but certain transition to a system of PH diagnostic techniques which reaches beyond intrinsically institutional factors. The first, from "Phenomenal Lives", written by a PH patient who was frustrated by multiple misdiagnoses, vividly described the process of delay after delay before diagnosis and treatment were attained. In this case, 14 years transpired before a diagnosis was attained. Her spirit undiminished, this incredibly resilient PH patient is now a stout advocate for PH education, awareness and research. The second article, the one that pulled me in like a hungry rainbow trout, was under "Meet the Doctor", and composed by PHA Medical Education Program Associate Christa Donald and Kaitlyn Benneville, Former PHA Web Services Intern. It features Dr. Stephen Mathai of Johns Hopkins Hospital, and after reading about his approach and objectives and hopes, the establishment of a more comprehensive PH diagnostic evaluation system seems like just a matter of time. Time, however, is and will remain unconcerned and unhelpful for most PH patients. Only continued research and determination will unlock the keys to both diagnosing and treating this terrible disease. "Dr. Mathai and his colleagues are attempting to improve the outcome for these patients. He is also interested in developing new tools to measure progress beyond the six-minute walk and lung function tests. Dr. Mathai believes scientific measures should also reflect a patients quality of life, looking at such areas as depression and anxiety levels, sleep quality and the like".
Whatever the cause, I am very grateful my thoughts collided where they did this evening. While my closet door remains neglected, I have a small measure of peace of mind that might convey more strength on a rough day, or two consecutive hours of restorative sleep. Hope is both a very fragile burden and a headstrong, immovable force for change. It is where the inherent discrepancies meet that I believe true progress occurs. And it seems to be happening, thanks to the members of organizations like the Pulmonary Hypertension Association, American Heart and Lung Associations, Dr. Mathai, countless researchers, and all the undeniably tough, determined PH patients who do not give up, and our physicians who never settle, never stop learning.
So, that likely over-describes my little epiphany, It was a blessing to finally gain more perspective, as PH can consume so much thought and energy. However, I could not drag myself off to some uncomfortable sleeping position and likely visions of the miserable closet door until I provided heartfelt gratitude for those PH patient fighters. An unsung hero. I met Merle Reeseman through the PHA Help Line and we have been friends ever since. And what a Blessing, indeed. She inspires many and asks for absolutely nothing in return. Her encouragement allows me to consider hope as something other than deferred despair. Also, I would be remiss not to acknowledge my Critical Care/Pulmonary Medicine doc, who has been effectively treating my PH for about six years. He also helped to save my life during a massive pulmonary embolism in 2006. Humble and dedicated to his patients, this outstanding physician has established such an impressive record that folks come from all over the U.S. to study under him. My PCP is a compassionate young woman who is not intimidated by dealing with tough quality of life issues and pain management. I consider myself both blessed and very lucky to be involved with these physicians.
Following my appointment with the PH specialist, I was admittedly quite discouraged. And a good month of learning and introspection and conversations were required before my tiny epiphany occurred. Perhaps now I'll address the home repair issues, but I anticipate continuing to try to improve my understanding of PH whenever and wherever possible. Finally, (yep, I'm nearly finished!), I would like to reach out to the previously described, constantly misdiagnosed PH patient, who indicated in her article that she often wondered and struggled with the idea that God had given her PH and all its' many demons, and it was seemingly too much to bear. May I just suggest, without imposing my personal beliefs, that perhaps God was not responsible for the PH, but for the strength and determination which have enabled her to obtain a proper diagnosis and deal with the debilitating disease.
And the battle continues....
Rod ~ PH Patient
Tuesday, June 2, 2009
Symbols of Patriots


The use of the eastern diamondback rattlesnake as a symbol of the American colonies can be traced back to the publications of Benjamin Franklin. In 1751, he made the first reference to the rattlesnake in a satirical commentary published in his Pennsylvania Gazette. It had been the policy of Britain to send convicted criminals to America, and Franklin suggested that they thank the British by sending rattlesnakes to England
In 1754, during the French and Indian War, Franklin published his famous woodcut of a snake cut into eight sections. It represented the colonies, with New England joined together as the head and South Carolina as the tail, following their order along the coast. Under the snake was the message "join or die". This was the first political cartoon published in an American newspaper.
As the American Revolution grew closer, the snake began to see more use as a symbol of the colonies. In 1774, Paul Revere added it to the title of his paper, The Massachusetts Spy, as a snake joined to fight a British dragon. In December 1775, Benjamin Franklin published an essay in the Pennsylvania Journal under the pseudonym American Guesser in which he suggested that the rattlesnake was a good symbol for the American spirit:
I recollected that her eye excelled in brightness, that of any other animal, and that she has no eye-lids—She may therefore be esteemed an emblem of vigilance.—She never begins an attack, nor, when once engaged, ever surrenders: She is therefore an emblem of magnanimity and true courage.—As if anxious to prevent all pretensions of quarreling with her, the weapons with which nature has furnished her, she conceals in the roof of her mouth, so that, to those who are unacquainted with her, she appears to be a most defenseless animal; and even when those weapons are shewn and extended for her defense, they appear weak and contemptible; but their wounds however small, are decisive and fatal:—Conscious of this, she never wounds till she has generously given notice, even to her enemy, and cautioned him against the danger of treading on her.—Was I wrong, Sir, in thinking this a strong picture of the temper and conduct of America? B.F.
Found this interesting. Howz come we don't write like this anymore...
Smile -- it's contagious
Saturday, May 23, 2009
Life - Liberty - Freedom
You've heard of high blood pressure (hypertension), a common condition that affects the way your blood flows through the arteries in your body from the left side of your heart. A less common type of high blood pressure, called pulmonary hypertension, affects only the arteries in the lungs and the right side of your heart.
Pulmonary hypertension begins when tiny arteries in your lungs, called pulmonary arteries and capillaries, become narrowed, blocked or destroyed. This makes it harder for blood to flow through your lungs, which raises pressure within the pulmonary arteries. As the pressure builds, your heart's lower right chamber (right ventricle) must work harder to pump blood through your lungs, eventually causing your heart muscle to weaken and sometimes fail completely.
As many of you know I volunteer for the PHA Help Line -- yesterday I received a call from a soldier and I thought of the above.
He wants to decorate his 1999 Malibu in memory of his wife who died 4 years ago after struggling for 5 years with PAH. He called to ask for permission to use the PHA logo along with the website, the flame of hope and the purple ribbon would go from tip to stern. He also wants to put PATHLIGHT on the side overlapping the doors. It would be a PHA logo in motion.
He told me how he put on over 300K miles on this car -- his wife's car -- driving her to and from appointments first to Duke when they lived in NC, then when they moved to KY to the Univ of KY. We talked of treatments the care involved and the grief that can follow.
Since her death he has continued to donate $100 per month to PHA in her memory. He is now stationed in Afghanistan and as we spoke I could hear the roar of the jets as they flew overhead. When he returns from Afghanistan this December, he will start decorating the Malibu and raise awareness about pulmonary arterial hypertension.
He also mentioned how he has educated the medical staff there about this disease to the point that one of the nurses who was going for an additional degree did her paper on PAH... He is such an advocate for all of us in the PH Community. He made me proud I had the opportunity to speak with him.
Let us truly appreciate, especially this weekend ~ Memorial Day Weekend, how our soldiers go above and beyond the call of duty not only to protect us but also to be such advocates for our cause.
Let's remember to pray for those in uniform. In memory of those who have died so that we may live the life to which we are accustomed to living and in honor of those who still defend those rights and our liberties -- both who have paved the way for our freedom.
Every day should be a day of rememberance to those in uniform -- A Memorial Day of sorts but more.
Merle - Now is a time to SMILE -- to show our thanks -- and remember it's contagious
Thursday, May 14, 2009
HAPPY MOTHER'S DAY

What is a Mother -- a Mom, a Mommy, a Mum or to some it is Mother...
She's the one who kisses that boo boo and makes it feel better, the one who listens to what you have to say -- and sometimes does not agree with what it is you are saying but still listen. The one who gives out hugs and expects to get many more back.
Mom's are among the ones who help you learn lessons of life -- like baking cookies, some can even teach you how to sew -- some can not *;* ~ how to cook a meal, wash clothes, many of the "daily tasks" that seem so behind the scenes but are there. Many Moms do this but again, many can not. They teach responsibility.
Lessons on how to get along with others and how to make friends -- how to settle an argument. There are volumns to be learned and in return Moms learn from their children as well. They can teach you how to play sports -- how to dance... their circle of knowledge is vast; their teaching ability seems unlimited.
They learn and share their compassion, to feel anxious when their children arrive home later than expected; to feel grief when a child is lost to a greater being or dispair when a child is lost to an unknown disaster of life such as drugs or alcohol ~ when that road of life goes astray.
Mom's, Mother's, Mommies show love, caring, compassion and responsibility -- it does not always show from the viewpoint of a child but trust me when I say they do love their children no matter what.
A Mom
Tuesday, May 5, 2009
The Ceiling -- Part Three

The disrepair was about to begin, or repair or whatever it should be called... Tom had taken down all the old tiles and the next day he and Byran came over to help put up those runners and put the new ones in. Things were moving along smoothly and that should have been a hint as to what was about to happen. They figured about a 2 hour job at the most and I would have a new ceiling... another hint.
Bryan -- who recently became engaged to our daughter Tammy -- wanted things to be right. His heart is in the right place... that corner where the plumbing was repaired for the upstairs was just below the level of the tile. He said if we pull up that pipe with an old wire coat hanger, it should work -- another hint of doom and disaster. The plumbing hung down about an inch below the tile. I said you could cut an area out, it wouldn't really show....I was thinking of an easy way. It was decided to pull up that plumbing and do it right. Now the chore was finding an old wire coat hanger and that believe it or not was a chore. We finally found one in an upstairs closet. Pliers, screws, the operation was now underway. Slowly the plumbing was brought up to where it should be BUT WAIT... one little side tract of the plumbing was still too low. So a trip to the hardware store was in order. A bracket or brace was needed over here, might have to cut an inch up on this pipe there, then connect it back up again....
They returned from the hardware store, cut a little here, connected a piece there and viola it looked great and should be perfect... So Tom goes upstairs and runs the water in the tub. Bryan and I are downstairs with our fingers crossed and a little drip is spotted. So back to the hardware store to buy something for the "joints", not sure what was wrong. I think it might have been a larger plier to tighten up a connection but I'm not sure. A slop of this here, wipe at little there, tighten this here make sure that's ok there. Tom goes upstairs again and runs the water -- NO LEAK. Whoo Hoo. Then all of a sudden we hear this CRACK, Bryan and I look at each other -- no leak... then all of a sudden there is water running down the side of the wall and he yells to Tom to shut the water off.
Well wouldn't you know, the Y connection between the commode and the tub, the sewer line, snapped. OH NO BUCKWHEAT. So back to the hardware store, need pipe for the size of the sewer line with the proper things to make a conneciton. Some of this, some of that -- good thing they bought that special glue and those pliers.... Finally they finished, Tom goes up stairs once again to run the water -- NO LEAKS... DA DAH Time now to cut that last piece of tile to fit into that corner...
So what should have been a 2 hour job turned into a 2 day job but it sure does look beautiful.... Now for the kitchen wall...
Smile -- it's contagious and it sure helps when doing something like a cieling :o)
