Wednesday, December 24, 2008

And now the reason for the 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.

Friday, December 19, 2008

'Tis the season

Did you know....
Advent (from the Latin word adventus, meaning "coming") is a season of the Christian chruch, the period of expectant waiting and preparation for the celebration of the Nativity of Jesus; in other words, the period immediately before Christmas .

Advent books often neglect the fact that Advent does not begin on December 1, nor does Christmastide end with the excitement of December 25. (There are four Sundays in Advent before Christmas, it usually begins in late November, and the liturgical season doesn’t officially end until Epiphany on January 6).

The theme of readings and teachings during Advent is often to prepare for the second coming while commemorating the First Coming of Christ at Christmas. With the view of directing the thoughts of Christians to the first coming of Jesus Christ as Savior, and to his second coming as Judge, special lessons are prescribed for each of the four Sundays in Advent.

Remember the song: The Twelve Days of Christmas, it starts with Christmas Day and finishes with the eve of Epiphany on 5th January. The Twelve Days of Christmas dates back to English origins in the sixteenth century although the music is reputed to be French, some say German. The first publication date for The Twelve Days of Christmas (song) was 1780.

Each of The Twelve Days of Christmas has a religious significance and are symbolized following the lyrics of The Twelve Days of Christmas

1 True Love refers to God
2 Turtle Doves refers to the Old and New Testaments
3 French Hens refers to Faith, Hope and Charity, the Theological Virtues
4 Calling Birds refers to the Four Gospels and/or the Four Evangelists
5 Golden Rings refers to the first Five Books of the Old Testament, the "Pentateuch", which gives the history of man's fall from grace.
6 Geese A-laying refers to the six days of creation
7 Swans A-swimming refers to the seven gifts of the Holy Spirit: wisdom, knowledge, faith, healing, etc. ~ see 1st Corinthians 12
8 Maids A-milking refers to the eight beatitudes
9 Ladies Dancing refers to the nine Fruits of the Holy Spirit
10 Lords A-leaping refers to the ten commandments
11 Pipers Piping refers to the eleven faithful apostles
12 Drummers Drumming refers to the twelve points of doctrine in the Apostle's Creed

And the last verse of the song (try not to sing it)

On the twelfth day of Christmas, my true love sent to me
Twelve drummers drumming,
Eleven pipers piping,
Ten lords a-leaping,
Nine ladies dancing,
Eight maids a-milking,
Seven swans a-swimming,
Six geese a-laying,
Five golden rings,
Four calling birds,
Three French hens,
Two turtle doves,
And a partridge in a pear tree!

May you all have a Blessed Holiday Season -- Merry Christmas everyone


And don't forget to smile -- it's contagious

Tuesday, December 2, 2008

Pay Attention

One of the many lessons in life is to pay attention to what you are doing. I'm sure as a child you heard it from either a parent, teacher or someone older -- you need to pay attention to what you are doing -- you don't want to do that wrong -- it will come out wrong if you don't pay attention to what you are doing....

I guess I didn't pay attention enough as this morning when I got up things just didn't seem to go right at all. I got out of bed too fast so that was my first mistake, on my way to answer natures call I was a little off balance but managed. By the time I did my thing, I was fine. Sticking to your normal routine is important -- so I guess I should say pay attention to what I am doing. Like getting out of bed slowly -- dropping my legs, slowly.

I'm thinking to myself -- self this is not the way to start off the day so I found my pulse ox and put it on, don't know why I did that but I did. I then walked from the living room to the kitchen to make breakfast. My oxygen level dropped from 93 to 85 on that little trip. HMMM... Heart rate went up to 125... well all systems seem to be working ~ maybe not as they should be but they're working.

Looked out the window and saw a dusting of snow (not again) but just a dusting ~ whew and of course it was chilly so I thought I'll make a nice cup of hot chocolate, that should get my juices running. Also thought a nice piece of cinnamon toast would go along great with the hot chocolate. Popped a slice of bread in the toaster, made the hot chocolate, put some butter on the toast when it reappeared from the depths of the toaster and it melted just right, went to my spice thingie and reached for the cinnamon. This is where the pay attention part comes in... I unscrewed the cap and started shaking, hmmm not dark brown like it should be and I'm thinking it was ginger so I kept on shaking. Then when I was done I thought, I'll just add the cinnamon and have a new creation.... Put the cap back on, looked at the container and it said "onion powder"... Oh YUK what did I do!!!! Well, I wasn't about to waste a piece of toast so I shook off as much powder as I could and then PAY ATTENTION came into place. I did get the cinnamon and gave it a good dousing on the toast, the butter was still at that put something on me stage, and I shook away. Didn't taste too bad -- didn't taste too good either *;* And right now I have this horrible onion taste in my mouth -- might have to make me some more cinnamon toast -- or not get too close to anyone today ~ wish me luck.

Merle ~ OHPA
And don't forget to SMILE ~ IT'S CONTAGIOUS

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

Saturday, October 25, 2008

Well, darn it all anyway

I know, don't fall over -- twice in the same day but this really deserves a note. Today was "Trick or Treat" day in my little community and darn it all anyway, I missed it. About 5:30 my door bell rang (kitchen door) and there was a hobo with a walking stick and a space man. Together I heard, Hi Grandma -- Trick or Treat....

Trick or Treat is from 4 to 6 pm so it's still daylight outside. You are to leave your outside light on if you want treaters, if not, they will walk on by. I was really looking forward to this special day. For 5 years I couldn't see all those ghost, goblins, witches, princesses -- all those special people who come and gather up treats. Being on the second floor just made it impossible to answer the door so the first floor would have been a happening thing AND I MISSED IT. Dang!!

I told the boys they are going to have to let me know when these special events happen -- I think I'm a kid at heart because it just gets my juices all stirred up with these special days and I usually get "dressed up" too. The boys were great, they shared their candy with me so I had a special treat too. Hope I didn't miss the parade.

Hugs ~ and smile, it's contagious

OHPA <-- that's my disguise *;*

Whoo Hoo

We had our October Mercer meeting -- it went very well. The Assistant Deputy Director on Area Agency on Aging started off with health programs that are available in Pennsylvania. We are very fortunate -- we have the PACE and PACE Net programs and my understanding is a lot of the other states are working on getting them. It's an insurance program, will help with that infamous donut hole and help with many other issues. We were told of a Caregiver program that is also available, they will actually pay a Caregiver to mix your meds, help with your hygiene (giving you bath, etc) and some other essential things you may need to have done. I guess the government, whether it be State of Federal, figures it's cheaper to pay a caregiver than to pay for a nurse to come to your home or pay for you being in a nursing home. Go figure and I must look into that one.

Sam speaks to the Mercer Group every year and has a wealth of information to pass on. Most every county has an office on Area Agency on Aging and they not only help those who are aging but those who are disabled. He also hosts a radio show every Friday and once a year, usually November for awareness month, Betty, the Support Group Leader and I, Co-Leader, along with a sponsor (we rotate those) get to be on the radio and talk about Pulmonary Hypertension.

Next on the agenda was our Congressman but due to a conflict with the political race, he was unable to attend. He did however send his D.C. Legislative Aide, Kelly, whom I have worked with and talked with for several years. Kelly has been able to attend the PHA Legislative Luncheon's in D.C. and has always been there for me when I have one of my many issues -- usually it's the Pulmonary Hypertension and Research Act and asking for co-sponsorship of that bill. Congressman English has always been gracious enough to co-sponsor the bill for us and he also has been there for me with some of my other issues.

Kelly spoke to us about HR 6568 and how when presented to the House it passed without question. She also talked to us about HR 6331 -- the Medicare/Medicaid bill -- this one, although a different number, comes up every year and is amended as needed. She explained how important it is for us to call, write or email our politicians -- everything is logged in and read and passed on to the Representative. Those politicians do listen to us. So now we need to call our Senators and get them to co-sponsor HR 6568 -- it still isn't too late to call their D.C. office and their number is usually listed in the "blue" pages of your phone book.

That was on Thursday -- Friday morning my local State Representative had his annual "Expo" for his constituents. His area covers a few counties so has has 2 or 3 of these. Here again, a wealth of information. Tables for health spas, visiting nurses, State and Federal Insurance programs, educational programs/scholarships, 911, AARP, State Game Lands. A full spectrum of almost anything you could think of. Accredo had a table so Betty and I shared half of it and we set up with brochures and ran several CD's for and about PH. I didn't even get a chance to visit all the tables but I did come home with tablets, pens, pencils, nail files and even a mini flashlight; of course many brochures on all the whatevers that were there that I did get to visit. I would guesstimate about 50 vendors were there. I did make a point of stopping at the County Public Assistance table.

Now for the whoo hoo part. I saw many folks I haven't seen in years and this one man came to our table and said his doctor told him he has "some" pulmonary hypertension so he asked what it was. We of course told him. I mentioned that he looked familiar and asked his name, well whoo hoo, we have a mutual friend and we haven't seen each other in proably 15 years. Small world. He mentioned how he is becoming more and more sob. I gave him my phone number and told him to give me a call -- darn he just missed the SGM by one day. I then thought, why didn't you get his number... dah, another PH moment. I went out and looked for him -- now mind you, there were a few hundred people there by that time. I couldn't find him BUT he came back with some more questions, I got his number, also told him about the Symposium that CCF is having in November for Awareness Month and he is hoping he can go. He also goes to the Clinic for another health issue. He called me at home in the afternoon and I have mailed him info about PH -- his computer is down. It really makes you feel good when you know you have been able to help some understand the seriousness of this dastardly disease.

Well, I could write more of some of the happenings at the Expo but I'll save those for another time. Seems I write a novel when I want to keep it just short and sweet. Oh well, you'll have this.

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

Sunday, October 19, 2008

Happy Days -- those days that make you feel good

You know how some days are just better than others... well, that's been happening ~ not a lot but a little more often than usual. Had the Walk & Roll in September to raise awareness and funds for research et al for Pulmonary Hypertension -- it went well, didn't have as many as last year but with the price of gas (which now has gone down quite a bit) some were unable to attend. Gorgeous day and last year it was sooo cold. We had our salt-free wiener's, did our 6MW (for the cause) -- some games were played and lots of chatting -- a feast to beat all.

A couple of weeks after that was my regular check up -- told my doctor that I was doing pretty good -- well 'til I got there ;o).... they lowered my 02 for my 6MW and I had trouble finishing the course they way I like to.... I made it but it did a number on me. It was a little worse than the last one (and what would one expect without the normal level of 02), my echo was about the same, blood work showed I was still alive... He asked how I had been doing and with the change of seasons it's always difficult for me so I said: "doin ok on the whole but once in a while I feel crappy" -- he came back with "well, it seems to be a consistent crappy"... Guess that means I'm doin pretty good, not too bad either *;*. After this question and that answer, we were done and I asked when I needed to come back -- he said 6 months -- 6 months... I've graduated to 6 months whoo hoo.... I could hardly believe my ears. When I started all this with PH, I was going to The Clinic every 2 weeks for close to a year then I made it to once a month, then after a few of those I finally made it to every 3 months and last year I graduated to every 4 months!!! I've been on Flolan for 6 years and will be starting my seventh year the first part of January. This is a feat, a hoop-la situation -- don't really know what that means but it sure sounds good. I don't have to go back to The Clinic for 6 months la la la la la... I'll just be going to Cleveland for Support Group Meetings -- what a treat.

On October 10th, we had our Pittsburgh PH Support Group meeting, which was held at AGH and they put on a PH Jeopardy game -- lots of fun for that one. I announced about HR 6568 passing in the house (at the August meeting we signed letters to be sent to our Federal Reps) and that now we have to contact our Senators and ask them to co-sponsor the bill. We had about 60 attend that meeting. We really did have a good time, another Happy Day.

That weekend Tom's oldest brother died -- a not so happy day. Although it was nice to see family again, it is not always so under these circumstances. The death of a loved one is always difficult and very emotional. Somehow though, those memories bring back joy as well as tears. "Andy" was 85, he was Tom's big brother and taught him a lot and was there for him while growing up. The stories I heard -- some would make you blush, others would make you fall on the floor laughing. Andy had a bout with cancer a number of years ago and had it beat, or so they thought. His death was unexpected and he did not suffer -- and that is very important. His wife died 3 years ago and they will once again be together, they were an exceptionally close couple. We went down for the viewing and the funeral -- I called my 02 company and they went out of their way to accommodate me and my needs for that overnight trip. You know how we PHers live a "just in case" life now. We need this, just in case, we might need that, just in case -- the list goes on. It was nice seeing everyone again and it seems the comment was, we only see ALL of us when someone dies. They are thinking of having a summer family reunion as they did many years ago.

The day of the funeral I didn't feel too chipper, my ear was bothering me but I didn't say anything. I waited until I got home, called my PCP in the morning and they had an opening in the afternoon. I went to the docs office (a wow kinda situation that I won't mention here), saw the doc, I have an ear infection, scratchy throat, so he wrote a script for a Z pack and I was good to go. I came home and semi collapsed. I was beat and for once I was glad Tom didn't come over. He had some catching up to do.

Yesterday was Nolan's birthday -- my tradition is to call the kids on their birthday and sing that wonderful song to them... my voice is terrible but they politely listen and say Thank You Granma when I'm done. I use to have a pretty good singing voice -- that was pre PH.... now I'm lucky that I can almost hit those high notes ;o). Tom came over and we both took naps in our respective recliners. Another Happy Day.

This morning Kevin called (Nolan's Dad) and said they were going to have cake and ice cream and thought they would come to my place to save me from going out in the cold, especially when I was on cold meds. Sounded good to me ONLY my dining room table was still stacked up with 'stuff' from the Pittsburgh meeting, the trip to Altoona -- I'm a pilot... I pile it here and I pile it there -- but usually on the dining room table. A good excuse to clear it off, which I did. The family came -- we all sang happy birthday and Nolan just beamed... he was sooo excited -- it was his special day and another Happy Day for me. Oh, and they all got together and moved my table -- extremely heavy -- put my hand made braided rug under it (something my Mother made) and moved it back. Only been sitting there rolled up for a few months... Hey, I'm getting there... tomorrow is another exciting day -- blog to follow, maybe *;*

This Thursday is the Mercer Area PH meeting -- Congressman's aide will be coming -- he called and had to cancel due to another commitment in Erie. I know his legislative aide and I am excited about meeting her, we've corresponded often over the past few years about different PH political issues. Friday is a "health fair" of sorts put on by our local State Rep and that's right in town here, so again, I'm good to go, we're setting up a PH table. So glad I have that Z pack.

Well, Jen, I hope this covers the blogger catchup, fingers are getting sore I typed too much but I am way behind in doing this and I need to get back on track.

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


Saturday, September 6, 2008

A Slap Stick kinda day

Ya know when you have one of those days like you think you can do something a little extra. Well, yesterday was one of those days. I got up, felt pretty good and thought to myself -- self you need to do something today.
As some of you may remember I moved from the second floor down to the first (New Year's Eve) and I don't care if you move 500 miles, 1500 miles or from the second floor down to the first -- a move is a move and it's very time consuming and physically exhausting especially for those of us with this dastardly disease. Boxes have to be packed, boxes have to be moved, boxes have to be unpacked. I did have the advantage of being in close proximity from my move - from - to my move to and I guess my "helpers" figured... it's all right there is no rush... WELL, let me tell you, I want my "STUFF" down here.
I was lucky in a way, when some came over they would bring a box or two down and I would unpack and put the what evers away. That worked really well... when they brought a whole bunch of boxes down like at the initial move, I became a little overwhelmed and it took me longer. Noticed I was under a lot of stress then...
Anyway back to what I'm about to tell you. Yesterday morning I thought I want "that area" over on the other side of my bed to be a little sitting area -- it's a big room BUT that meant I needed to move my rug at the end of my bed to beside it. WELL, that rug is also under my clothes racks -- my 2 makeshift closets -- those tubular kind of racks that you put together -- they are on wheels so I figure, just roll them over and go for it.
Needless to say I should have taken the clothes off first, but I didn't, I wanted to do it the easy way so there I am trying to roll the end of the rack off the carpet, not be on the carpet while doing that and pull the carpet at the same time and not tip the clothes over. It didn't work out too well.... Darn 02 line kept getting in the way so I would scoot that over with my foot while bending to pull on the rug while trying to balance the clothes rack. It was a comedy of errors -- even got me to giggling. At one point I had one corner of the rack off the rug, had the corner of the rug and pulling it gently to get the other end and lost my balance -- luckily the bed was right there and I sat down... OK... let's look this situation over -- I have one clothes rack clear and free of the rug -- I have half of the rug clear and free of the second rack but right now I am balancing that rack and trying to get back on my feet. Ahhh, mission accomplished -- now let's gently start moving the rack a little -- oops the top part came apart and I am holding the weight of the clothes and trying to balance the other end... oops again, the other support fell off and down go all the clothes.... ok, so now it's easy to move the clothes rack.. have to pick up the clothes from the floor, throw them on the bed and move the tham ding where I want it. Oops again, the rest of it fell apart. I had to sit down and just laugh and nobody was there to appreciate what I was going through. All I could think of was those reruns of slap stick humor.
I put the clothes rack back together... move it out of the way... rolled up the rug and put it on the other side of the bed... WELL GUESS WHAT -- it's too big!!!! I was about ready to spit (what I say I want to do when I'm upset) when I decided I'll just roll up the end -- a little two seater is going there and will cover that part of it -- that is as soon as it comes down here -- been waiting 9 months now... see some of the frustration I've been going through :o(
In my head, this will work. I'll have the two seater sofa there, the wing back chair over there and I can sit and knit, read a book or watch TV -- this is the first time I've had a TV in my bedroom. I'm good to go. And if the kids come for a visit -- I'll open up that two seater and they will have a bed. My little sitting area looked perfect in my mind... can hardly wait for that stuff to come down here and it better fit the way it does in my mind...
Oh, then GUESS WHAT... forgot that my daughter had asked if I would watch the kids while she and Kevin went out for the evening. That usually means a sleep over and I thought -- got that space all ready for them... I have a couple of those roll-up put under your sleepingbag roll ups :o)
and put them in my sitting area -- got some extra blankets. The boys slept on the floor and Annette slept with me.
When they came for the kids earlier this morning Elizabeth (my daughter) said: "we'll get that sofa out of here today--she got it for their family room -- i's been sitting in my dining room since forever -- and that means when that is gone I can bring down my hutch and my fancy china... Whoo Hoo... I'm on a roll..
Thanks for listening and hugs to all.

Saturday, August 9, 2008


A phriend posted a blog about an acquaintance asking her how she felt about dying and not too long after that a close friend also asked her how she was really feeling, implying about death and dying. She answered with a spiritual response and her true feelings as being one of God’s helpers. I truly believe she is a gift from God and as such, she has given strength to many.

I was first thinking what a dilemma she was in. Trying to answer someone she didn’t know well about death and dying and also with one of her better friends. My understanding of this disease, Pulmonary Hypertension, is that without treatment you have 2 to 5 years… With treatment no one knows how long you may live. I have met people who have been on treatment for 20 years and I have met some who were born with this disease and are still going strong and they are in their 30’s.

I’m not sure if you know but I am on the PHA Help Line and I receive many calls from newly diagnosed pholks who are outright scared because they have been told they are going to die. This is a scary disease and they have every right to be scared. I try to reassure them, that without treatment they may die within 2 to 5 years; but with treatment, who knows – and also we could walk out the door and be hit by a bus. We are all going to die, that is part of life. Two guaranteed things in life – taxes and death.

Yes, I believe we should get our “soul rights” in order but I am a firm believer that I have Pulmonary Hypertension and Pulmonary Hypertension does not have me.

Too many people do not understand this disease, too many people fall victim to this disease but it is treatable with the right doctors and we have to remember that. There is no cure but it is doable.

Over 2 years ago I became the Support Group Leader for the Cleveland Area PH Group and as part of my agenda for one of my first meetings I included: The late comedian Jack Benny was once honored with a distinguished humanitarian award. “I don’t really deserve this award,” Benny said in his acceptance speech, “but then I have arthritis, and I don’t deserve that either. Thank you very much.”

At another meeting I quoted: Lynn Redgrave speaking for Bristol-Myers-Squibb who said: I want to die from eating too much chocolate or from exhaustion dancing the tango. I want to die of laughter on my 87th birthday. But I refuse; I refuse to die from breast cancer. I want to die from something else. And that’s exactly how I feel about Pulmonary Hypertension.

So it’s not a question of whether we really deserve the things we get, like PH among others. The important question is this: how do we handle them? If we have grace, we can endure, and enjoy the unexpected ups and downs of life. Do I grumble about my health or am I grateful that I am alive. Should I cry because roses have thorns or should I rejoice because thorns have roses? Attitude and a good sense of humor will get you a long way with this disease but sometimes you may need a terrible crying towel. Some days you need to cry, to vent, and to let it all out.

Hugs to you all,


Monday, July 21, 2008

I want my old life back

I just watched the PHA 2008 Conference Video. There was a newbie there who said "I want my old life back." Those words hit me like a ton of bricks. It's so very true, unless you grew up with PH, the adjustments you have to make are not fun and usually not too nice. The tears you shed when you do that stinkin thinkin. The woulda, shoulda, coulda life we use to live and the life we live now. I saw small children with the Flolan pack -- that just isn't right, no child should have to endure that. But look at them, look at how they get about. It's just awesome. I have heard that some children out grow Flolan and are able to go onto another less invasive treatment. Woulda, coulda.... I'm on Flolan.
I would like to be able to pick up my grandkids -- well the smallest one anyway -- he sometimes climbs up on my lap but he's getting to be a big boy now so that won't last much longer. Actually, I would like to be able to pick up a gallon of milk, but I can't, it's too heavy ~ I would like to dance, sing, all the things I could do before. I would still like to be able to do them. But I can't, as she can't do what she had been use to doing and she is learning to adjust as we all have. Now coping may be another story, that is not as easy. You know one of those easier said than done situations. With a lump in her throat this newbie said she is learning about this disease. I call it the dastardly disease and I have learned how devastating it is -- she will. And I don't want to imply how bad it is but it is bad and for some worse than for others. With the proper treatment, PH, PAH, IPAH is doable. You can live with it, you can survive. I am reminded of those who have had it all their lives -- they are survivors too; they had to learn to adjust and cope.
I am fortunate that I now have many phriends, those who also have this dastardly disease. Those who have learned how to adjust and how to cope. The caring that goes on in the ph community is unbelievable and awesome at the same time and it seems we are all at different levels of adjusting and coping.
And I loved those "I'm a little SOB" shirts. That kinda says it all.
The closing for the video stated: "Dedicated to the memory of those who have gone before, to the spirit of those who fight back today and to those yet to come." Don't ever forget those words. There is always hope.
Hugs to you all.