By Cheryl Kaye Tardif
What is Pulmonary Hypertension?
Pulmonary hypertension is a rare, serious and incurable lung disorder that affects how blood flows from the lungs to the heart. It is categorized in two ways: primary, meaning there is no obvious cause; and secondary, in which a cause is known, such as bronchitis or emphysema. Primary pulmonary hypertension (PPH), also referred to as pulmonary arterial hypertension (PAH) and more recently, idiopathic pulmonary arterial hypertension (IPAH), causes increased blood pressure in the pulmonary artery, a blood vessel that carries oxygen-poor blood from the right ventricle of the heart to the lungs.
Increased blood pressure can have serious results. The muscles within the walls of the arteries may tighten, causing the arteries to constrict. The walls of the pulmonary arteries may thicken. Scar tissue may form, causing the arteries to become increasingly narrow. Tiny blood clots may form within the smaller arteries, causing blockages. In more serious cases, when the right ventricle no longer functions properly, progressive heart failure occurs, leading most often to death.
Symptoms:
Symptoms of PPH frequently occur over a period of time, making the condition difficult to diagnose. Although most of the symptoms relate to breathing issues, such as shortness of breath and hyperventilation, other symptoms may include:
• Extreme fatigue
• Dizziness or fainting
• Weakness of the body
• Racing pulse
• Chest pain
• Swelling of legs and hands
• Coughing up blood
• Bluish discoloration of lips and skin (cyanosis)
Diagnosing PPH:
PPH is regularly misdiagnosed in routine medical examinations since its symptoms can be confused with other more common conditions. These conditions must be ruled out first, along with secondary pulmonary hypertension disorders. Unfortunately this means that PPH is usually diagnosed after the appearance of many of the symptoms, and by that time the disorder is likely to have progressed to a more serious stage.
Tests to diagnose PPH include:
• X-ray of the chest
• Electrocardiogram
• Echocardiogram
• Cardiac catheterization
• Blood tests
• MRI
• Pulmonary function tests
• Connective tissue serology
• Perfusion lung scans
In most cases, the cause of primary pulmonary hypertension is unknown, yet could be attributed to genetic or familial predisposition, immune system disease or drug/chemical exposure. A number of drugs, such as cocaine, amphetamines and the diet drug Fen Phen (taken off the market in September 1997) have been linked to causing PPH.
Treatment:
PPH requires proper medical diagnosis, treatment and follow-up. Most treatment regimes require drugs that help lower blood pressure, or affect the blood, blood vessels, lungs and/or heart. In recent studies, Viagra (Sildenafil) has been found to improve the condition of PPH. It is awaiting approval for use as a treatment for PPH.
Other drug therapies may include:
• Anticoagulants
• Calcium channel blockers
• Diuretics
• Endothelin receptor antagonists
• Prostacyclin analogues
Since every patient responds differently to drug combinations, amounts and types of drugs must be carefully monitored and often changed. For patients who do not respond to drug therapy, the other alternatives are heart-lung or lung transplantation. However, transplantation can lead to complications that could result in death.
Statistics:
The Montefiore Medical Center states that the first recorded case of primary pulmonary hypertension occurred in 1891. Each year in the United States, an estimated 500 to 1,000 new cases are diagnosed, most of them women between the ages of 20 and 40. However, both genders and any age can develop PPH. According to the American Lung Association, there were 3,065 deaths attributed to PPH in 2000. It can also be a genetic disorder―familial primary pulmonary hypertension―passed on by a parent. If a parent is known to have PPH, genetic counseling is recommended. According to Ronald J Oudiz, MD, “IPAH is responsible for approximately 125-150 deaths per year”.
Life expectancy:
Before 1990, the diagnosis of PPH was virtually a death sentence, with little hope of prolonging life. Since then, with the advances in new treatments and drug therapies, patients with PPH may have an increased life expectancy. Untreated, the survival rate is about 68% at one year, 48% at three years, and 34 % at five years, according to the University of North Carolina at Chapel Hill Pulmonary & Critical Care Medicine. With treatment, life expectancy can increase on average 3-5 years.
Follow-Up Treatments:
As with any disease, a diagnosis of pulmonary hypertension requires counseling for all involved―the patient and family. Having all the facts and knowing what treatment options are available and what lifestyle changes to make are vital to the continued health of the patient. For more information, please visit the National Heart Lung and Blood Institute or any of the other resources for heart and lung care.
Cheryl Kaye Tardif has worked in the past as a journalist and book editor. Currently, she is the author of three novels: The River, Divine Intervention and the bestselling novel Whale Song, a novel that includes a character with PPH. Cheryl spent over a month researching PPH and this article is the result of her findings. Besides PPH, Whale Song deals with many controversial and emotional issues, including the assisted death of a loved one.
For more information on Cheryl and Whale Song, please visit http://www.whalesongbook.com.
Saturday, August 4, 2007
Friday, August 3, 2007
Early Onset Alzheimers: A Family In Crisis
By Carol D. O’Dell
At first, Irene* kept forgetting her cat Waldo’s name. She didn’t think too much about it, chalked it up to menopause. Then she forgot how to get home from the grocery store and drove around for nearly three hours before a policeman stopped her—for driving too slow. She didn’t mention the incident to either of her two daughters until something about the police ride home and the tow truck accidentally slipped out in conversation.
Irene visited her family physician who referred her to a neurologist. She was diagnosed with early onset Alzheimer’s disease at the age of 52. Her family was devastated. At first, neither she nor her two daughters talked about it. She was given Aricept, a common Alzheimer’s drug and took her daily dose even though she said she felt dizzy and complained of nausea. She seemed more clear-headed and her daughters welcomed the slight improvement. They made plans to change their mother’s living arrangements since neither of them lived nearby. They worried about her cooking meals or attempting household chores. Both daughters agreed to care for mom six months out of the year.
Divorced, Irene then began taking turns living with her two daughters—one on the east coast, the other the west. Adjusting to not being the woman of the house wasn’t easy. Depression loomed. Each daughter found an adult day care for when mom stayed with them—to give her something to do during the day. Her daughters continued to work and share the responsibility of “mom.” They felt their mom was too young to enter a full-time care facility, and they wanted to make the most of time they had—taking vacations, and finishing scrapbooks and just being together every chance they could. They got “the button” as Irene called it, in case she fell or needed immediate care. They learned all they could about home care for Alzheimer’s.
Home Treatment in Early Stages from OurAlzheimer’s.com at www.healthcentral.com
Telling the Patient. Often doctors will not tell patients that they have Alzheimer's. This is a family decision. If a patient expresses a need to know the truth, it should be disclosed. Both the caregiver and the patient can then begin to address issues that can be controlled, such as access to support groups and drug research.
Mood and Emotional Behavior. Patients display abrupt mood swings and many become aggressive and angry. Some of this erratic behavior is caused by chemical changes in the brain. But it may also be due to the experience of losing knowledge and understanding of one's surroundings, causing fear and frustration that patients can no longer express verbally.
The following recommendations for caregivers may help soothe patients and avoid agitation:
• Keep environmental distractions and noise at a minimum if possible. (Even normal noises, such as people talking outside a room, may seem threatening and trigger agitation or aggression.)
• Speak clearly. Most experts recommend speaking slowly to a patient with Alzheimer's disease, but some caregivers report that patients respond better to clear, quickly spoken, short sentences that they can more easily remember.
• Use a combination of facial expression, voice tones, and words for communicating emotions. (One study suggested that patients may have difficulty in recognizing the meaning of facial expressions, particularly those signaling sadness, surprise, and disgust.)
• Limit choices (such as clothing selection).
• Offer diversions, such as a snack or car ride, if the patient starts shouting or exhibiting other disruptive behavior.
• Simply touching and talking may also help.
• Maintain as natural an attitude as possible. Patients with Alzheimer's disease can be highly sensitive to the caregiver's underlying emotions and react negatively to patronization or signals of anger and frustration.
• Showing movies or videos of family members and events from the patient's past may be comforting.
Irene enjoyed adult day-care for a time but as she began to wander, her daughters had to hire home health care. It was difficult to find a good match. Irene grew combative. Each daughter worried not only mom’s quality of care, but of the rising cost as well. Irene did not have long term health care insurance.
Irene is now 62 and in a memory loss unit. Her dementia is advancing quickly.
Her medication has been changed. She’s now taking Nameda.
Irene’s west coast daughter decided to move to the east coast to oversee her mother’s care. She is now divorced and lives with her sister. She has two children, ages 5 and 9. She no longer takes the grandchildren to see their grandmother, hoping they’ll remember the good times. Irene is angry and belligerent some days, and others, she seems to have adjusted. The two daughters are grateful they have each other—for shared responsibility and emotional support.
Common Alzheimer’s Medications:
The first four drugs belong to a group of drugs called Cholinesterase Inhibitors. They delay the break down of acetylcholine in the brain. Acetylcholine helps communication between the nerve cells and is important for memory.
Aricept, Exelon and Razadyne are most effective in the early stages of Alzheimer’s disease. This group of prescription drugs has been shown to have some modest effect in slowing the degeneration of cognitive symptoms. The drugs can also reduce the behavioral problems that are exhibited in people with Alzheimer’s. When the drugs work well they can significantly improve people’s quality of life. Benefits, if they occur, should happen within a few weeks.
Namenda (memantine)
Nameda is a N-methylD-aspartate (MNDA) antagonist It acts on another neurotransmitter (transmitter of nerve messages) called glutamate. The drug shields the brain from glutamate which contributes to the death of brain cells in people with Alzheimer’s disease.
Effective in moderate to severe forms of Alzheimer’s disease, improving the day to day life of the person with Alzheimer’s disease, and by implication the life of the care givers. Improvements should be seen within a few weeks.
Alzheimer’s Medication information is from www.aboutAlzheimer’s.com
It’s been ten years since Irene’s original diagnosis of early onset Alzheimer’s disease. Irene doesn’t recognize her daughters anymore, but they check on her every day either by phone call or visit. She’s losing her ability to speak, which is sometimes just gibberish. She’s still mobile and is often restless and agitated. She walks aimlessly in the halls, common Alzheimer’s occurrence. Both sisters attend a caregiver’s support group to cope with their guilt, stress, and sorrow. They worry. Is early onset Alzheimer’s genetic? We’ll discuss this issue in a follow-up article.
Sidebar:
WARNING SIGNS OF ALZHEIMER'S
Memory loss
Difficulty performing familiar tasks
Problems with language
Disorientation to time and place
Poor or decreased judgment
Problems with abstract thinking
Misplacing things
Changes in mood or behavior
Changes in personality
Loss of initiative
*Irene is a fictitious name, but this story is based on a real family’s struggle with Alzheimer’s.
At first, Irene* kept forgetting her cat Waldo’s name. She didn’t think too much about it, chalked it up to menopause. Then she forgot how to get home from the grocery store and drove around for nearly three hours before a policeman stopped her—for driving too slow. She didn’t mention the incident to either of her two daughters until something about the police ride home and the tow truck accidentally slipped out in conversation.
Irene visited her family physician who referred her to a neurologist. She was diagnosed with early onset Alzheimer’s disease at the age of 52. Her family was devastated. At first, neither she nor her two daughters talked about it. She was given Aricept, a common Alzheimer’s drug and took her daily dose even though she said she felt dizzy and complained of nausea. She seemed more clear-headed and her daughters welcomed the slight improvement. They made plans to change their mother’s living arrangements since neither of them lived nearby. They worried about her cooking meals or attempting household chores. Both daughters agreed to care for mom six months out of the year.
Divorced, Irene then began taking turns living with her two daughters—one on the east coast, the other the west. Adjusting to not being the woman of the house wasn’t easy. Depression loomed. Each daughter found an adult day care for when mom stayed with them—to give her something to do during the day. Her daughters continued to work and share the responsibility of “mom.” They felt their mom was too young to enter a full-time care facility, and they wanted to make the most of time they had—taking vacations, and finishing scrapbooks and just being together every chance they could. They got “the button” as Irene called it, in case she fell or needed immediate care. They learned all they could about home care for Alzheimer’s.
Home Treatment in Early Stages from OurAlzheimer’s.com at www.healthcentral.com
Telling the Patient. Often doctors will not tell patients that they have Alzheimer's. This is a family decision. If a patient expresses a need to know the truth, it should be disclosed. Both the caregiver and the patient can then begin to address issues that can be controlled, such as access to support groups and drug research.
Mood and Emotional Behavior. Patients display abrupt mood swings and many become aggressive and angry. Some of this erratic behavior is caused by chemical changes in the brain. But it may also be due to the experience of losing knowledge and understanding of one's surroundings, causing fear and frustration that patients can no longer express verbally.
The following recommendations for caregivers may help soothe patients and avoid agitation:
• Keep environmental distractions and noise at a minimum if possible. (Even normal noises, such as people talking outside a room, may seem threatening and trigger agitation or aggression.)
• Speak clearly. Most experts recommend speaking slowly to a patient with Alzheimer's disease, but some caregivers report that patients respond better to clear, quickly spoken, short sentences that they can more easily remember.
• Use a combination of facial expression, voice tones, and words for communicating emotions. (One study suggested that patients may have difficulty in recognizing the meaning of facial expressions, particularly those signaling sadness, surprise, and disgust.)
• Limit choices (such as clothing selection).
• Offer diversions, such as a snack or car ride, if the patient starts shouting or exhibiting other disruptive behavior.
• Simply touching and talking may also help.
• Maintain as natural an attitude as possible. Patients with Alzheimer's disease can be highly sensitive to the caregiver's underlying emotions and react negatively to patronization or signals of anger and frustration.
• Showing movies or videos of family members and events from the patient's past may be comforting.
Irene enjoyed adult day-care for a time but as she began to wander, her daughters had to hire home health care. It was difficult to find a good match. Irene grew combative. Each daughter worried not only mom’s quality of care, but of the rising cost as well. Irene did not have long term health care insurance.
Irene is now 62 and in a memory loss unit. Her dementia is advancing quickly.
Her medication has been changed. She’s now taking Nameda.
Irene’s west coast daughter decided to move to the east coast to oversee her mother’s care. She is now divorced and lives with her sister. She has two children, ages 5 and 9. She no longer takes the grandchildren to see their grandmother, hoping they’ll remember the good times. Irene is angry and belligerent some days, and others, she seems to have adjusted. The two daughters are grateful they have each other—for shared responsibility and emotional support.
Common Alzheimer’s Medications:
The first four drugs belong to a group of drugs called Cholinesterase Inhibitors. They delay the break down of acetylcholine in the brain. Acetylcholine helps communication between the nerve cells and is important for memory.
Aricept, Exelon and Razadyne are most effective in the early stages of Alzheimer’s disease. This group of prescription drugs has been shown to have some modest effect in slowing the degeneration of cognitive symptoms. The drugs can also reduce the behavioral problems that are exhibited in people with Alzheimer’s. When the drugs work well they can significantly improve people’s quality of life. Benefits, if they occur, should happen within a few weeks.
Namenda (memantine)
Nameda is a N-methylD-aspartate (MNDA) antagonist It acts on another neurotransmitter (transmitter of nerve messages) called glutamate. The drug shields the brain from glutamate which contributes to the death of brain cells in people with Alzheimer’s disease.
Effective in moderate to severe forms of Alzheimer’s disease, improving the day to day life of the person with Alzheimer’s disease, and by implication the life of the care givers. Improvements should be seen within a few weeks.
Alzheimer’s Medication information is from www.aboutAlzheimer’s.com
It’s been ten years since Irene’s original diagnosis of early onset Alzheimer’s disease. Irene doesn’t recognize her daughters anymore, but they check on her every day either by phone call or visit. She’s losing her ability to speak, which is sometimes just gibberish. She’s still mobile and is often restless and agitated. She walks aimlessly in the halls, common Alzheimer’s occurrence. Both sisters attend a caregiver’s support group to cope with their guilt, stress, and sorrow. They worry. Is early onset Alzheimer’s genetic? We’ll discuss this issue in a follow-up article.
Sidebar:
WARNING SIGNS OF ALZHEIMER'S
Memory loss
Difficulty performing familiar tasks
Problems with language
Disorientation to time and place
Poor or decreased judgment
Problems with abstract thinking
Misplacing things
Changes in mood or behavior
Changes in personality
Loss of initiative
*Irene is a fictitious name, but this story is based on a real family’s struggle with Alzheimer’s.
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