Wednesday, November 26, 2008

Remembering to be thankful

This morning started off with a ring -- the phone *;*. Easy enough. I'm on the PHA Help Line this week so I answer the phone in a special way -- not the typical Hello. It was an easy call, a doctors office called and said a family member of a patient wanted to make a donation to PHA and how should they go about it. I passed on the information.

Next, I looked out the window... another six inches of snow. Snow can be beautiful -- to look at... but when you have pulmonary hypertension, it's a different story. I wondered if I had to go out, who would clean my car off... who would shovel my walks and porch. This is now something I cannot do any more. Not only because of it being cold outside but because of the energy it would take to do those tasks. Luckily my son-in-law stopped and cleaned off my car.

Seems the things I once could do are now a major task. Having pulmonary hypertension is a major lifestyle change. Many people when they hear what you have think of "hypertension" which can be controlled with medication and a proper diet -- and your life may go back to what it once was. It is nothing to sneeze at but is easier to treat than having PH. Not so with having pulmonary hypertension; it is a disease that affects both your heart and lungs. It is a progressive disease, a life threatening disease with no known cure at this time. If it is detected early enough you may have a chance of having a somewhat normal life. Unfortunately, in most cases it is not detected early enough and that's when your lifestyle can change drastically. You can become a little sob (that's short of breath - thank you very much) with little exertion, you may have chest pains, edema, fainting spells; just to name a few of the symptoms.

November is Pulmonary Hypertension Awareness month and off and on I have tried to keep up with some of my other phriends who have written about their dealings with having pulmonary hypertension. Some have told their stories, some have been able to have reports on the evening news and many have been able to have newspaper articles placed in their local and not so local newspaper. Some have written technical blogs that explain this disease. All for the cause of awareness and for what I call this dastardly disease --> pulmonary hypertension. Again it is a progressive disease with no cure at this time but there are treatments and with the proper one, it can be doable. Your quality of life can be improved and your life expectancy can be extended.

This morning during ph "chat" I mentioned about the snow and one of my phriends from TX asked me to take a picture and post it. One is from my window right beside my computer looking out my back yard and my car and the other is from out my front door looking down the street. I'll have to have the kids come over and build a snowman -- I'll send it on when they do.

Tomorrow is Thanksgiving and I want to wish everyone a Happy Turkey Day -- I have so much to be grateful for I wouldn't have enough space here to list it all. Let us all be thankful for what we do have and enjoy this very special family day.

Merle ~ OHPA
And don't forget to smile -- it's contagious

Sunday, November 23, 2008

Clinical Trials --> Part 2

When doing a clinical trial or clinical research for pulmonary hypertension or most any disease, the patient cannot be too sick or actually too well but strong enough to endure the length of the process; procedure; or treatment that may be involved.

Choosing to participate in a clinical trial is an important personal decision (I guess the critters don’t have a personal choice or decision to make). A clinical trial (also called clinical research) is a research study in human volunteers to answer specific health questions. Some clinical trials involve more tests and doctor visits than the participant would normally have for an illness or condition and there could be risks involved; be sure to ask many, many questions.

  • There may be unpleasant, serious or even life-threatening side effects to treatment.
  • The treatment may not be effective for the participant.
  • The protocol may require more of their time and attention than would a non-protocol treatment, including trips to the study site, more treatments, hospital stays or complex dosage requirements.

Interventional trials determine whether experimental treatments or new ways of using known therapies are safe and effective under controlled environments. Observational trials address health issues in large groups of people or populations in natural settings.

As previously mentioned all clinical trials have guidelines about who can participate. Using inclusion/exclusion criteria is an important principle of medical research that helps to produce reliable results. The factors that allow someone to participate in a clinical trial are called "inclusion criteria" and those that disallow someone from participating are called "exclusion criteria". These criteria are based on such factors as age, gender, the type and stage of a disease, previous treatment history, and other medical conditions. Before joining a clinical trial, a participant must qualify for the study. It is important to note that inclusion and exclusion criteria are not used to reject people personally. Instead, the criteria are used to identify appropriate participants and keep them safe. The criteria help ensure that researchers will be able to answer the questions they plan to study.

The clinical trial team includes doctors and nurses as well as social works and other health care professionals. They check the health of the participant at the beginning of the trial, give specific instructions for participating in the trial, monitor the participant carefully during the trial, and stay in touch after the trial has been completed.

Don't forget to smile - it's contagious

Saturday, November 22, 2008

Clinical Trials - Part I

A few days ago the buzz was that an oral medication that was “in trial” for treatment of pulmonary hypertension, failed – not true, actually it hit a bump in the road. There is a lot that goes into a having a trial or a study; the so called research. There are rules and regulations, procedures to be followed and I will try to list a few.

Trials or research programs have certain guidelines that are followed – the participant or patient must be sick enough to be in the program but strong enough to be able to endure the process.

The FDA requires that people be told:

  • That the study involves research of an unproven drug, biologic (such as a vaccine, blood product, or gene therapy) or device
  • The purpose of the research
  • How long the participant will be expected to participate in the study
  • What will happen in the study and which parts of the study are experimental
  • Possible risks or discomforts to the participant
  • Possible benefits to the participant
  • Other procedures or treatments that might be advantageous to the participant instead of the treatment being studied
  • That the FDA may look at study records, but the records will be kept confidential
  • Whether any compensation and medical treatments, if any, are available if the participant is injured, what those treatments are, where they can be found, and who will pay for the treatment
  • The person to contact with questions about the study, participants' rights, or if the participant gets hurt
  • That participation is voluntary and that he or she can quit the study at any time without penalty or loss of benefits to which the participant is otherwise entitled.
  • And of course, the infamous “consent form”

Clinical trials are conducted in phases. The trials at each phase have a different purpose and help scientists answer different questions:

  • In Phase I trials, researchers test a new drug or treatment in a small group of people (20-80) for the first time to evaluate its safety, determine a safe dosage range, and identify side effects.
  • In Phase II trials, the study drug or treatment is given to a larger group of people (100-300) to see if it is effective and to further evaluate its safety.
  • In Phase III trials, the study drug or treatment is given to large groups of people (1,000-3,000) to confirm its effectiveness, monitor side effects, compare it to commonly used treatments, and collect information that will allow the drug or treatment to be used safely.
  • In Phase IV trials, post marketing studies delineate additional information including the drug's risks, benefits, and optimal use.

Trials can be as short as 3 months or may last a few years.

More to follow within the next few days.

Merle - OHPA
Smile -- it's contagious

Tuesday, November 18, 2008

Hypertension - Pulmonary Hypertension

Like apples and oranges -- many similarities but so very different. It is important to know the difference and maintain proper treatment.

Blood pressure is the force in the arteries when the heart beats (systolic pressure) and when the heart is at rest (diastolic pressure). It's measured in millimeters of mercury (mm Hg). High blood pressure (or hypertension) is defined in an adult as a blood pressure greater than or equal to 140 mm Hg systolic pressure or greater than or equal to 90 mm Hg diastolic pressure.

High blood pressure directly increases the risk of coronary heart disease (which leads to heart attack) and stroke, especially when it's present with other risk factors.

And then we have: the Pulmonary Veins return oxygenated blood from the lungs to the left atrium of the heart. After blood enters the left side of the heart it is pumped to the rest of the body. There are four pulmonary veins that return blood to the left atrium.

Primary or unexplained pulmonary hypertension (PPH) is a rare lung disorder in which the blood pressure in the pulmonary artery rises far above normal levels for no apparent reason. The pulmonary artery is a blood vessel carrying oxygen-poor blood from the right ventricle (one of the heart's pumping chambers) to the lungs. In the lungs, the blood picks up oxygen, then flows to the heart's left side, where the left ventricle pumps it to the rest of the body through the aorta.

Hypertension is a medical term for abnormally high blood pressure. Normal average (also called "mean") pulmonary artery pressure is about 14 mm Hg at rest. In patients with PPH, the average blood pressure in the pulmonary artery is greater than 25 mm Hg at rest and greater than 30 mm Hg during exercise. This abnormally high pressure (pulmonary hypertension) is linked with changes in the small blood vessels in the lungs. These changes increase resistance to blood flowing through the vessels. This increased resistance puts a strain on the right ventricle, which now must work harder than usual to move enough blood through the lungs.

Symptoms of PH include:

  • The first symptom is often fatigue or tiredness. Many patients think that they're simply "out of shape."
  • Difficulty in breathing, dizziness and even fainting spells can occur.
  • Swelling in the ankles or legs, bluish discoloration of the lips and skin, and chest pain more often occur later in the disease.

One of the great difficulties in treating Pulmonary Hypertension is that the diagnosis is often delayed due to the slowly progressive and insidious onset of the symptoms. AHA


Don't forget to smile -- it's contagious

Saturday, November 15, 2008

Pulmonary Hypertension --> Awareness

Specialty Definition: Lung

The lung is an organ belonging to the respiratory system and interfacing to the circulatory system of air-breathing vertebrates. Its function is to exchange oxygen from air with carbon dioxide from blood. The process in which this happens is called "external respiration" or breathing. Medical terms related to the lung often start in pulmo- from the Latin word pulmones for lungs.

Lung - Noun

1. Either of two saclike respiratory organs in the chest of vertebrates; serves to remove carbon dioxide and provide oxygen to the blood.

Pulmonary hypertension is classified into five different types:

· Pulmonary Arterial Hypertension (PAH) -- This form affects the blood vessels in the lungs that carry blood from the heart into the lungs where it picks up oxygen. This category is subdivided into two types:

    • Primary pulmonary hypertension (PPH), which can occur for no discernable reason or - in about 10 percent of cases -> is inherited. It is very rare. It most often occurs in young adults and is more than twice as common in women as men
    • PAH related to exposure to toxins including diet drugs such as fenphen; street drugs including cocaine and methamphetamine; HIV; collagen vascular diseases including scleroderma, lupus and rheumatoid arthritis; chronic liver disease; and congenital heart diseases. Considered more common but is still rare.

· Pulmonary Venous Hypertension (PVH) -- This form is caused by diseases of the left side of the heart, such as heart failure or mitral valve disease. This can increase pulmonary artery blood pressure but usually doesn't become severe PAH.

· Respiratory System -- Pulmonary hypertension can be associated with diseases of the respiratory system including interstitial lung disease, emphysema, asthmatic bronchitis, sleep apnea and chronic exposure to high altitude.

· Chronic Blood Clots -- Blood clots in the lung blood vessels

· Blood Vessel Disorders -- Pulmonary hypertension due to disorders directly affecting the blood vessels in the lungs such as parasites, or inflammation of the blood vessels.

There is so much information out there I am amazed I don't have my degree in PH yet *;*

Merle - OHPA

Hey Judi -- Happy Care Taker Day

Remember to always SMILE -- it's contagious

Friday, November 14, 2008

Not laughing in stitches but the other kind

Some have mentioned it's a BTDT situation or had similar adventures ~ this having pulmonary hypertension can and usually does change your life style but again remember it's a doable disease. Treatments are out there and some of us are on combination treatments, some on a single medication and when our doctors see what our pressures are -- they go from there to see what best suits our individual needs. We are each unique in our needs and treatments and it's so very important to let our doctors know how we are doing and what we are feeling.

A note to my PH doctor after the adventure below. I have a very good relationship with my PH doctor and nurses. They have been through a lot with me and are always there to answer my questions and give me support when needed. The Cleveland Clinic ROCKS....

"I was going to try to tough it out but I can't and Tom doesn't want to go to Cleveland for a 15 minute non appointment. I called my PCP and he will take out the stitches next Wednesday. It will be the DR and not a nurse. The one end is digging into my skin and is really starting a blister, the other piece is almost covered with skin and he might have to slice and dice to get those stitches out. Your thoughts???

I am tired of all the pain. The bottoms of my feet hurt, my ankles really hurt and ache all the time, my legs ache more than they every use to and I am taking Tylenol more often than I ever did. But, hey, I can breathe!!!" I guess I was having a bad day; that was two years ago ~ I am much better now.

Seems when you have a set back, "things" tend to get in the way and you might want to moan and groan some. Go right ahead, moan and groan, it's good for the soul *;*

Melre ~ OHPA

Thursday, November 13, 2008

A PH Adventure -- one of many

What you are about to read is something I wrote in July of '06 -- one of my many adventures with having PH and another epistle... Pulmonary Hypertension is a rare life threatening and progressive disease. At this time there is no cure but there are several treatments that can help you maintain a good quality of life. It's doable, scary at times but doable. With the proper attitude and lots of gratitude we will do fine.

Just in case you were wondering where I've been, the short of it is in the hospital for the better part of two weeks and then a home care nurse for two weeks at home. If you want a long read ~~ it's below. Volume III Chapters 18 through -- just joking....

Well, I'm back. What a month!!! Went for a regular check-up the middle of May on a Monday, they of course asked me how I was feeling and I said I felt like I was coming down with a cold. Big mistake -- well, maybe not -- they took my temp and I had a fever!!! So my DR said I get to stay at the luxurious, comfortable, well equipped hospital at the Cleveland Clinic. He didn't want to take the chance that my line was infected. I was admitted to the hospital right then and there. You might know, it's one of the only times I didn't bring a book with me. The testing started right away, about midnight they finished up for the day. Pokes, probes and x-rays. They do their regular middle of the night testing as well -- you know, take your BP, weigh you, take your temp (mine was still too high) and if you're really lucky they'll draw some blood!! Their mornings start about 6 a.m. give or take 15 minutes and again you have the routine: BP, weight, temp and maybe a blood draw. I had to have a special blood draw for a culture test -- just a couple of extra tubes and they were special color coded tubes. I was in style--color coded--who could ask for more. With a blood culture test you have to wait 3 days, with regular blood tests you can get the results within and hour, two at the most. The x-ray results showed that I didn't have pneumonia; at that point I wasn't sure if that was good news or bad news. If I had pneumonia they could cure it; if it wasn't, what did I have that made me feel so crappy (that's becoming one of my favorite words-but it says it all). I was put on two different types of IV antibiotics. I guess they felt if one doesn't work, they other will -- just joking there. I did learn that not all antibiotics will kill those little critters that are in your blood stream and that's why you need two. Well, naturally, being me, I had a reaction to one of them -- the one that was killing those little critters. I broke out in humongous hives all over my bod; well I don't think I had any on my nose but the rest of me was covered and sooooo itchy. Bring on the Benadryl!!! They gave me a shot of that and from then on I had a shot of Benadryl first then the antibiotics. And guess what, the Benadryl makes it difficult for me to breathe but it beat having those hives. I adjusted....

Each day the culture showed no signs of little critters so I was happy for that. That would mean that my line wasn't contaminated. They not only drew blood from each arm but also directly from my Hickman--the line that goes into my heart with the medicine and that's the one they were concerned about. Thursday came and still no little critters showed up. I was beginning to feel better, my temperature was normal (I have something normal?). The DR came in and said that I might be able to go home, they would rather keep me one more day -- just in case -- but if the next regular blood draw came back o.k., I could go home ~~ with the understanding that if something showed up in the culture, I would have to come back to the luxurious resort hospital at CCF in Cleveland, OH. I was sent home.

Home at last. I was sent home with a pill form of an antibiotic. I was tired, I was beyond tired, I was exhausted. You never get any rest in a hospital. Once my head hit that pillow that was all she wrote until the next morning. Home sweet home, it sure beat that luxurious resort I just came from.... I figured I'm just gonna hang out for the day. Didn't even get out of my jammies. Mid afternoon I got the call I was so hoping I wouldn't get. The nurse called and said something showed up in the culture. Bummer! I was told I could go to my local hospital and get another blood culture draw through them. That way I could stay home for the weekend and if nothing showed up at all, I would already be at home. Did I mention that my DR said he was going to change Murphy's Law to Merlie's Law. You know, if something is going to wrong, it will. Well, I had some complications with that blood draw but I'm not going to get into that one. Needless to say, it was not a pleasant experience.

Monday morning I got the call I didn't want to get and was told to get over to Cleveland like right now. Tom came over after golfing and what a surprise I had for him; I really don't know what I would do without him. He is such a support and comfort for me and all I give him is heartache and grief and that long ride to Cleveland. He was not a happy camper but off we went. At least this time I had a change of underwear and I brought a couple of books. I figured I would be there at least 3 or 4 days. They don't waste any time when you get there. They barely give you a chance to get into their wonderful wardrobe before they start in. You know they give you a wonderful outfit to wear at this luxurious resort hospital; it has tie strings and snaps and a special pocket for your portable heart monitor. I was in style, the outfit was sheek. Who could ask for more than that.

Tuesday early morning came and they put an IV in my arm for my Flolan (the med that usually goes into my heart through the Hickman), I can't be without it and then they took me to radiology to remove my Hickman. I was given a pain killer (ya, right--by the way, unless it is absolutely necessary people with Pulmonary Hypertension should not be put out and under with any anesthetic) and started to slice and dice as my skin had of course become attached to the line where it entered my chest. It really didn't hurt but I could feel what was going on. The line was placed in a "hazardous" bag and off it went to the lab and off I went back to my resort quarters, my suite.

Flolan is a very potent drug and every time the pump went off to shoot the med into my body I could feel the pain. I was totally surprised with that one. I always joked how the pump sounded like a camera shutter but I never felt the medicine going into me. This was a new experience. And guess what -- Merlie's Law fell into place. The Flolan blew my vein so they put it in the left arm. The pain in that arm was excruciating and again it blew the vein; I asked them to put it back in my right arm, although it was painful at least I could tolerate it in that arm. My arms were turning red beyond my elbows so something else had to be done. This all happened through out the day -- I mean it didn't all happen within 5 minutes or so.

The "Orange Team" was called in and all I could think of was the Terrorist Alerts. When it reaches "orange", you better take things a little more seriously. I think the next step up in the medical field is "Code Blue" and I've been there, done that and I don't want to go there again. I was told they were going to put in a "Central Port" in my groin area and that line would run up to my heart and the Flolan could be attached and things would be fine. Ya, right!!! They gave me a pain killer and started to slice and dice (that's becoming too familiar to me) my nurse gave me two of her fingers to hold (she was just great) and I told her I might break them. I said OOOWWWW!!!! and they said can you feel that?? Well, dah!!! They gave me more pain killer. I said OOOOWWWW again and they said can you feel that??? I mean give me a break. More pain killer then they sliced and diced again (there were 3 of them and they took turns) and told me I had a strange anatomy. Say WHAT!!!??? I felt like asking if anyone needed salt and pepper. From where I could see it looked like they were cutting up a steak!! The line would kink and wouldn't go in.

They decided to go into my chest but they had to stop the bleeding from my leg. I could feel pressure but I couldn't feel pain by that time and just try to picture 3 grown men pushing as hard as they can on your upper leg. The bleeding finally stopped and they started to slice and dice on my chest -- now remember that I had the Hickman removed from there. They decided to cut on the right side as they figured that the new Hickman would be put in on the left side... I mentioned that I thought the DR that removed the Hickman said it might go back in on the right side; they said it usually goes in on the opposite side of the previous Hickman. More pain killer and they started in to slice and dice. They asked if I had any pain and I said no but I could feel them moving around. Again they said my anatomy was strange (Merlie's Law?) and they were having difficulty. I then told them they were at my throat. Wrong turn at the crossroad... They tried again and I started to scream MY EAR, MY EAR!! They stopped and pulled back on the line and tried again. That one really hurt and I thought for sure I broke my nurse’s fingers, she said she was fine. Through out this procedure my nurse stayed right with me except for a few times when she had to get more pain killer (Merlie's Law) and a couple of other things for the DR's. Finally they thought they had it in place. I can't remember if it was 4 or 5 hours that they were messing with my body. An x-ray was ordered and they finished up at 3 a.m. At 4:30 a.m. the techie came to my room for the x-ray, I was so glad I didn't have to go to them and he even took the picture while I stayed in bed; he said it would be ready in an hour or so. The Flolan couldn't be put into the new line until it was checked out. At 8 a.m. my DR called x-ray and got the results, the line was in the proper place and I could be hooked up to my Flolan. The pain in my arm finally stopped but I got a new one -- my leg. Because of the pressure they used to stop the bleeding in my leg they bruised it badly. I had a major blood clot (not the kind that can kill you) and I couldn't walk. I had a pressure bandage put on and I was told to stay in bed -- not to walk it off as I was hoping I could do.

Wednesday I was in such pain that I don't remember much of it. The Tylenol that they gave me barely helped. I couldn't read, I didn't want to watch TV but I had it on to try to take my mind off the pain. I didn't want to eat and I had IV's going in here and there. As long as I didn't move I could handle the pain. I was told I might be able to go home on Thursday if my blood culture came back negative. I put my mind in gear and said that I would walk on Thursday.

Thursday morning they came for me with a gurney and brought me to the operating room -- had to have a new Hickman put into place. More pain killer -- was it becoming my friend?? No way and I wished it worked for my leg and not just the area they were working on... more slice and dice -- and then the new Hickman was in place. They also put a PICC line in my arm. I was told that when I went home I would have to have an IV antibiotic every day for two weeks and a nurse would come to my home to hook me up. Tom called me every hour to see if I would be coming home. They were trying to find a nursing home care that would be local to me. They finally found out that Sharon Regional has a nursing home care program and they would be able to come to my home to administer the "Vanco". Shortly after supper I was discharged. I had to have the nurse or the transporter lift my leg in and out of the wheelchair and then help me lift my leg so I could get into the car... The nurse gave my some Extra Strength Tylenol just before I left; she knew the ride home (2 1/2 hours) would be painful sitting upright that long. It took the edge off. By the time I got home I was exhausted and Tom had to help me lift my leg out of the car and then he said maybe I should have stayed another day or two. Wrong!!! No matter how much pain I was in, being at home was so much better than being in the hospital. It took me about 20 minutes to get up the stairs (all 14 of them). I was tired, I was in pain and I just wanted to put my legs up and off the floor and lean back. Tom made sure I had some Tylenol handy, got me my favorite drink made sure I was comfy in my recliner and then he had to leave. It was bedtime and I just slept in the recliner that night.

Friday morning came too soon. About mid morning the doorbell rang. OH NO, BUCKWHEAT! Luckily the FedEx driver knows that I don't move too fast anyway. He had all the meds from The Cleveland Clinic. Shortly after that the nurse called and said she would be there around 12 noon. She opened the box of goodies and arranged them in an order that was convenient for the procedure. The medicine was placed in the refrigerator and the rest of the goodies were left in the box. I now have my own IV pole, bet you’re jealous about that one... The same nurse would come during the week and different nurses would come over the weekend and this of course all started over the Memorial Day weekend so all plans for any cookouts involving me or Tom were cancelled. The only time I got out of my recliner was to go to the bathroom or go to bed and for that one I had to rig a little step up and get into bed backwards. I still couldn't lift my leg on its own and it was too hard for me to lift it if the other leg was already in the bed -- hurt too much to bend over -- so I just slept with my head where my feet should be and my feet where my head should be. Hey, whatever works. If I had to get up -- which was a chore -- and after a few steps I could do a little better. By the second Saturday I was home my leg finally started feeling a little better. But of course, I overdid it that day and paid for it for the rest of the day and on Sunday. I couldn't sit upright so I have been going through computer withdrawal as well. I so wanted to send on all the jokes that I received but I just couldn't sit at my desk for any length of time. Today after almost five weeks of all this I am able to sit for a little bit of time. My leg is still sore and I still have trouble lifting it properly but I am able to sit for a little while. Although I could take sponge baths I look like a rat in a storm sewer. Still can't bend over too well and anything that hits the floor stays there until Tom or Elizabeth (our daughter) come over, they have been getting most of my meals for me.

I want to thank those who called or even wrote wondering what happened to me and to those who were away themselves and to those who I don't write to all the time, this is my latest adventure. I finished up with the antibiotics yesterday and the nurse removed the PICC line from my arm. I am on the road to recovery and I hope it won't take me too long to get caught up with all those wonderful jokes, and inspirational messages that kept me going. I did respond to a few folks but it was with using only one finger and that took too long.

Merle ~ OHPA


Tuesday, November 11, 2008

A Very Special Day

Although many are posting for awareness about Pulmonary Hypertension, I'm going to change course for today. Today is a very special day ~ it's Veterans Day and I was brought up to honor and respect our Vets. To always say thank you to them for a job well done, to show appreciation for the sacrifice they have made while serving their county, our country, my country -- this great land and nation known as these United States of America.

Many have sacrificed their lives for this nation and other nations, many are still serving to protect our rights and freedoms as many have in years gone by.
For the most part, war veterans are treated with great respect but lately remembering America’s warriors is often an afterthought for many Americans.

November 11, or what has come to be known as Veterans Day, was originally set as a U.S. legal holiday to honor Armistice Day - the end of World War I, which officially took place on November 11, 1918. In legislature that was passed in 1938, November 11 was "dedicated to the cause of world peace and to be hereafter celebrated and known as 'Armistice Day.' As such, this new legal holiday honored World War I veterans.

In 1954, after having been through both World War II and the Korean War, the 83rd U.S. Congress, at the urging of the veterans service organizations, amended the Act of1938 by striking out the word "Armistice" and inserting the word "Veterans." With the approval of this legislation on June 1, 1954, November 11 became a day to honor American veterans of all wars.

I have chosen the Flame of Hope logo (in afghan form) for the Pulmonary Hypertension Association as a reminder that without these warriors to protect and serve on our behalf there would be no hope or freedom of any sort for this great nation.

A lot has happened to this country and the world in general over the past few years and these brave men and women need to know how much we appreciate them. We need to come together as one nation and support them in anyway we can.

Thank you my warriors for freedom; for the privilege to be able to write this and the hope of what will be a tomorrow.

Merle ~ OHPA
And smile, it's contagious

Wednesday, November 5, 2008

Pulmonary Hypertension ~ Symptoms

Often misunderstood; the severity of Pulmonary Hypertension is not recognized by many who associate PH with common high blood pressure instead of a distinct and grave illness.

may include: Shortness of breath with minimal exertion, chest pain, unusual fatigue, a dry cough, edema, heart palpitations, fainting and dizzy spells. This disease, described as "progressive and fatal", causes blood vessels in the lungs to thicken, restricting blood flow therefore making the right side of the heart overwork and lead to heart failure. It can be a silent killer.

Since the damaged heart is unable to perform its pumping function in an effective manner, it will lead to a disturbance in the pulmonary circulation process, which eventually leads to develop unusually high pressure in the pulmonary veins. Since the pressure in the pulmonary veins rises, it bounces back to the pulmonary arteries and will cause some or all of the above mentioned symptoms.

Pulmonary hypertension is a very serious condition, one that should be assessed and treated as early as possible, and the doctor should be continuously checking back to make sure that the proper therapy is being used and working properly.

New York Heart Association Classification
I. PH patients in this category have no symptoms during ordinary physical activity, their hearts function normally.

II. Although these patients are comfortable at rest, ordinary physical activity is somewhat limited by undue breathlessness, chest pain, fatigue, or near fainting.
III. These PH patients usually have no symptoms at rest, but their physical activity is greatly limited by breathlessness, chest pain, fatigue, or near fainting while doing routine things.

IV. These PH patients are often breathless and tired even while resting and can't do any physical activity without symptoms. They show signs of right-heart failure. Under the WHO system anyone who is prone to fainting goes into this class.

Monday, November 3, 2008

PH Awareness

You've probably 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. It is a sneaky disease -- hard to diagnose and often misdiagnosed.

For several years now, November has been designated as Pulmonary Hypertension Awareness Month and that's where this PH community comes in. By making others aware of this dastardly disease. We need to contact our local newspapers, submit an article or write a letter to the editor. Something, just about anything will do to help the cause. Shout it from the roof tops -- well maybe you don't have to go to that extreme but I think you get the picture.

When you leave your home, do you have those PH brochures handy to pass out -- when someone asks how you are doing do you tell them about Pulmonary Hypertension. If they say "oh you are looking well" -- I come back with "I guess the medicine is working." Let them know it isn't something you get over -- it is something you have to live with.

Pulmonary hypertension is a serious illness that is classified as progressive and can be fatal. Although it isn't curable at this time, treatments are available for pulmonary hypertension that can help lessen symptoms and improve our quality of life. It's a doable disease and there is hope.

Hugs to you all -- and smile, it's contagious.


Saturday, November 1, 2008

November is here

This picture reminds me of over the river and through the bridge to Grandmother's house we go... well, that special day is coming up real soon. Before you know it we'll be having Turkey and all the fixings -- mashed potatoes - enough for an army, sweet potatoes, brown gravy, corn (maybe even some on the cob), stuffing -- if you're from these parts it's called filling -- go figure... oyster stuffing (yuk on that one), peas, carrots, other veggies and let's not forget the green bean casserole. Cranberry relish, multiple salads, home made rolls, pumpkin pie, apple pie, mincemeat pie, probably at least two of each and I'm sure I forgot some of those fixins.
It's been a while since I was the turkey cooker, now Tom is in charge, I must admit I do get to chop up the onion and celery for the stuffing the night before the feast and I get to bring the green bean casserole -- what's a holiday meal without green bean casserole -- the kids set the table, clear it off when we're done and load up the dishwasher. I get to sit in the other room with my feet up.
As a child I was the official cranberry relish maker... my Mother would clamp the meat grinder to the counter and I would very carefully now.. place those cranberries and orange rind in the grinder and crank away. It was a very important job and I was so proud I was old enough to do it. As I grew older, it was still my job and I still enjoy making that relish - brings back fond memories of family gatherings -- something we aren't able to have as often now a days. Oh, we have our family but not the extended family members like great Aunts and great Uncles and the Grandparents. We are the Grandparents now but our brothers and sisters live too far away to join our feast.
I want to try to write a little more often and maybe if I don't write my usual novel, I could so I'm going to stop now. Guess I'll be writing fleeting thoughts.

Hugs to all and smile, it's contagious,
Merle - OHPA