Comfort and doctors' offices don't usually go hand in hand. In the waiting room you spend your time flipping through a fishing magazine from 1997 and straining to hear your name being called. You finally get into the room and somebody takes your vital signs, and you wait some more. When the doctor or nurse comes in, they are often in a hurry and asking you a lot of questions, using that medical language in which vomiting is known as 'aspiration', preventative care is 'prophylaxis', diarrhea is 'unformed movements', and when they ask a dose of a medication, do you say 10mg three times a day or 30mg? Because your last doctor wrote down 10mg PO TID on the prescription but the list from your pharmacy says thirty milligrams daily by mouth. Your doctor apologizes for running behind, they had a couple of emergency cases earlier and thanks you for waiting so patiently. It'll be a late night for them, once they finish clinic they are going back to the hospital to check on other patients and then they are getting ready for the grand rounds presentation they are giving tomorrow at 7:30am. You get the check up, medication refills, your flu shot, see you in three to four months. Six months. Maybe at your next annual physical.
Did you ask any questions?
Most people don't. The staff is friendly yet busy, and you don't want to waste their time with something that's sort of been bothering you but it isn't a big deal really. Your hands get really splotchy sometimes when it's cold but you forgot to bring in the picture you took when it happened, it can wait til next time. Maybe it's an embarrassing question and there's more than one person in the room. Maybe you've been having trouble with pooping, sex, unsightly rashes. But the doctor is busy so maybe you'll wait to see the specialist. It's intimidating to ask questions using words a doctor doesn't. We all try to make what our bodies do sound more polite. But the truth is, a fart is a fart whether you call it flatulence, passing gas, tooting or whatever.
So either the doctor isn't addressing your questions, or you aren't asking them. In the first case, let your doctor know that you need more information. If they don't give it to you, or they brush you off, find a new doctor. You deserve answers. If you are uncomfortable asking questions, don't be. Make yourself ask even if it's painful to do so. These are medical professionals you're asking, and when you work in a doctor's office, your daily life revolves around bodily fluids, bodily smells, bodily noises. Don't be embarrassed. If you are really very uncomfortable, there are some very informative, very medically graphic shows out there about people confronting similar issues. Embarrassing Bodies comes to mind. It's a British show so the informative websites are geared towards a UK audience, but if these people can talk about their problems on tv, you can talk about them with your doctor. Please ask questions. It might be nothing, or it might be a sign of something you need to get checked out. You might just get the answer you're looking for. But you'll never know if you don't ask.
Thursday, September 29, 2011
Saturday, August 27, 2011
Hurricane Irene
Hurricane Irene is headed to New York, and evacuations have begun. Here's some info for patients and family members:
Closed Hospitals: The following hospitals have been evacuated DO NOT GO
- Southside in Bay Shore Long Island
- Coney Island Hospital
- Staten Island University Hospital (North AND South campuses)
- NYU Medical Center
- VA Medical center in Manahattan
***If you need to check on the location/condition of a patient evacuated from Staten Island or Southside, please call: 855-473-6399
Emergency Shelters:
- Nassau County: Medical shelter is at Nassau Community College, taking patients who use ventilators and/or have other special needs.
- Suffolk County: Robert Frost Middle School in Babylon/Deer Park, Sachem East High School in Brookhaven/Farmingville, and Hampton Bays High School in Southampton are accepting patients with medical needs but NOT patients on ventilators
Wednesday, July 20, 2011
A Word About Electronic Cigarettes...
Sorry for the recent lack of posts, we're on a tight submission deadline and will be back on the blog next week. In the meantime: e-cigarettes. If you haven't seen them, you might have seen them advertised in a banner ad or in a magazine. They are little plastic devices that look like cigarettes (or sometimes they're styled to look like a pen), you use them like cigarettes, but they use cartridges that produces inhalable nicotine and even vapor that looks like smoke. Sounds good, right?
The problem with alternatives to cigarettes is nicotine itself. Nicotine is actually not easily absorbed by the body. In regular cigarettes, tar acts as a binding and delivery agent which allows nicotine to be absorbed in seconds. In stop smoking aids such as the patch, lozenges or gum, there is no added substance to help nicotine be absorbed, which means that it does less damage to the body but takes up to ten minutes to get the feeling you get from a cigarette in a few seconds. And e-cigarettes? Well, they use a substance called ethylene glycol, more commonly know as anti-freeze, to get the nicotine into your system quickly. Sometimes propylene glycol may be used- a compound also used as a dispersant in oil spills, as a de-icer on airplanes, the main ingredient in stick deoderants, and as an insecticide.
The thing is, e-cigarettes are not marketed as a harm-reduction agent or as a smoking cessation aid, and therefore they are not currently subject to FDA regulation. That means no one knows whether the long-term effects of breathing in anti-freeze are more or less dangerous than tobacco with its tar and added carcinogens. Despite several states (including New York) having introduced legislation to ban the sale of e-cigarettes to minors and adults alike, sales are increasing at a steady pace.
There are physicians' organizations that have endorsed the use of e-cigarettes, primarily because they do not produce the type of second hand smoke that has proven so dangerous. E-cigarettes and their nicotine containing cartridges have been banned in several countries (including Canada), and in Australia they are classed as poisons. Bottom line? Buyer beware.
The problem with alternatives to cigarettes is nicotine itself. Nicotine is actually not easily absorbed by the body. In regular cigarettes, tar acts as a binding and delivery agent which allows nicotine to be absorbed in seconds. In stop smoking aids such as the patch, lozenges or gum, there is no added substance to help nicotine be absorbed, which means that it does less damage to the body but takes up to ten minutes to get the feeling you get from a cigarette in a few seconds. And e-cigarettes? Well, they use a substance called ethylene glycol, more commonly know as anti-freeze, to get the nicotine into your system quickly. Sometimes propylene glycol may be used- a compound also used as a dispersant in oil spills, as a de-icer on airplanes, the main ingredient in stick deoderants, and as an insecticide.
The thing is, e-cigarettes are not marketed as a harm-reduction agent or as a smoking cessation aid, and therefore they are not currently subject to FDA regulation. That means no one knows whether the long-term effects of breathing in anti-freeze are more or less dangerous than tobacco with its tar and added carcinogens. Despite several states (including New York) having introduced legislation to ban the sale of e-cigarettes to minors and adults alike, sales are increasing at a steady pace.
There are physicians' organizations that have endorsed the use of e-cigarettes, primarily because they do not produce the type of second hand smoke that has proven so dangerous. E-cigarettes and their nicotine containing cartridges have been banned in several countries (including Canada), and in Australia they are classed as poisons. Bottom line? Buyer beware.
Wednesday, July 6, 2011
Smoking Cessation
Even today Tobacco use is the second cause of death globally [after high blood pressure] and is currently responsible for killing one in 10 adults world wide. Below are facts about smoking, which illustrate just how important it is for someone with any stage of disease to kick the habit.
Why is nicotine so addictive?
One Puff of smoke sends nicotine to your brain within 10 seconds.
Makes you feel more calm and alert.
You enjoy the feeling so you continue to smoke.
Just one puff... Long-term effectsThe chemical structure of your brain changes - it wants more nicotine to have the same effect.
You become addicted – you associate your daily routine with cravings to make sure you get a steady flow of nicotine.
The role of cigarettes becomes important in your life as the brain consistently looks for a nicotine fix.
How will my lungs benefit if I stop smoking?
There are many health benefits to stopping smoking and not just to your lungs.
Immediate benefitsLevels of toxic substances that are carried to your lungs in cigarette smoke will drop to those of a non-smoker within a few days, which means your lungs will be able to take in more oxygen, which will make it easier for you to breathe.
Benefits after a few weeksYour airways will become less inflamed, which means you will:
• Cough less.
• Produce less phlegm.
• You will gradually find it easier to exercise.
Long-term benefits• Long-term damage to your lungs will stop the moment you give up. Severely damaged lungs cannot return to normal, but by quitting before serious damage is done, you can prevent diseases such as COPD getting worse. If you remain cigarette-free you will:
• Reduce your risk of being severely breathless and disabled or dying from COPD.
• Reduce your chance of developing lung cancer. After 15–20 years, the risk of lung cancer is reduced by 90% compared with people who continue to smoke.
How can I tackle the habit?
No one pretends giving up smoking is easy, but if you have made up you mind to quit one can succeed. Set a ‘quit date’ after duiscussing with your health care provide. Use simple tricks to reduce your urge to smoke and help you quit. Look for triggers and plan to avoid them.
Find new ways of thinking and behaving.
• Remind yourself why you gave up smoking in the first place.
• Move away to another place where people aren’t smoking.
• Keep busy to distract your mind: daily exercise is a good ‘distraction’ to promote
continued abstinence, while counteracting weight gain.
• Drink plenty of water.
• Take deep breaths.
Beware: some triggers for smoking only reveal themselves after you try to live without cigarettes. Tricks that work for some people may not work for others, so quitting can involve trial and error. Keep going! Ask your doctor or nurse for help. Contact a telephone or internet helpline. The most important thing is to be determined and to persist.
If at first you don’t succeed, try again…Nicotine addiction is very powerful and so only 5–10% of ‘quit attempts’ are successful. Withdrawal symptoms, such as craving, irritability, inability to sleep, mood swings, hunger and headache, that occur when the brain is looking for a new fix of nicotine, are a common reason for relapsing and treatment can help this.
Here are some other helpful Quit Tips1.Do not smoke any number or any kind of cigarette . Smoking even a few cigarettes a day can hurt your health. If you try to smoke fewer cigarettes but do not stop completely, soon you will be smoking same amount again. Smoking ‘low tar, low nicotine’ cigarette usually does little good either. As nicotine is so addictive, if you switch to lower nicotine brands you will likely just puff harder, longer , and more often on each cigarette. The only safe choice is to quit completely.
2. Write down why you want to quit. Do you want to-· Feel in control of your life?
· Have better health?
· Set a good example for your children?
· Protect your family from breathing other people’s smoke?
Really wanting to quit smoking is very important to how much success you will have in quitting. I is well known that smokers usually quit after a life threatening illness like cancer, heart attack- the reason is that they suddenly become motivated after a health scare. Thus find a reason for quitting before you have no choice.
3.Know that it will take efforts to quit smoking. Nicotine is addictive! Half the battle is knowing that you need to quit for sure for tat will help you to deal with the symptoms of withdrawal. You must give yourself a month to get over these feelings. Take quitting one day at a time, one minute at a time –whatever you need to succeed.
4. Don’t feel bad if it takes you more than one attemptThere is no ‘cure’ for smoking::; it’s more like managing a chronic disease. Most people go through cycles of stopping and re-starting the habit, which reflects the strength of your addiction. It is not failure. The good news is that:
• Each time you try to give up you are more likely to succeed.
• Counselling increases your chances.
• Medication increases your chances.
• Combining counselling and medication is the most effective.
5.Half of All adult smokers have quit. You can, too, that is a good news . When others can do it you can succeed too.
6. Get Help if you need.If you need help with nicotine replacement products or other medications please discuss with your physician or dentist.
Treatment options: Nicotine replacement products such as gum or patches can help relieve withdrawal symptoms by delivering small, measured doses of nicotine into your body. Strong evidence shows that anti-smoking medications can double or even triple your chances of being able to quit. An alternative treatment which doctors recommend for heavy smokers are non-nicotine drugs, such as buproprion SR (Zyban) and varenicline tartrate (Chantix). They are also effective in relieving the cravings and withdrawal symptoms. The idea of taking a drug to kick a drug habit can make people nervous. Some fear unpleasant side effects, while others fear that one addiction will replace another. But smoking is so dangerous for your health that, if you weigh up the options, (i.e. taking medication or continuing to smoke), using drugs to help you give up smoking will almost always be safer.
Useful links
1. Smokefree Partnership www.smokefreepartnership.eu
2. Tobacco Free Initiative (TFI) www.who.int/tobacco/en
3. ENSP - European Network for Smoking Prevention www.ensp.org
4. www.cd.gov/tobacco/quit_smoking/how_to_quit
5. Globalink - The International Tobacco Control Network www.globalink.org
6. Global Smokefree Partnership www.globalsmokefree.com/gsp
7. Tackling the Smoking Epidemic www.theipcrg.org/smoking
8. The European Lung Foundation www.european-lung-foundation.org
Why is nicotine so addictive?
One Puff of smoke sends nicotine to your brain within 10 seconds.
Makes you feel more calm and alert.
You enjoy the feeling so you continue to smoke.
Just one puff... Long-term effectsThe chemical structure of your brain changes - it wants more nicotine to have the same effect.
You become addicted – you associate your daily routine with cravings to make sure you get a steady flow of nicotine.
The role of cigarettes becomes important in your life as the brain consistently looks for a nicotine fix.
How will my lungs benefit if I stop smoking?
There are many health benefits to stopping smoking and not just to your lungs.
Immediate benefitsLevels of toxic substances that are carried to your lungs in cigarette smoke will drop to those of a non-smoker within a few days, which means your lungs will be able to take in more oxygen, which will make it easier for you to breathe.
Benefits after a few weeksYour airways will become less inflamed, which means you will:
• Cough less.
• Produce less phlegm.
• You will gradually find it easier to exercise.
Long-term benefits• Long-term damage to your lungs will stop the moment you give up. Severely damaged lungs cannot return to normal, but by quitting before serious damage is done, you can prevent diseases such as COPD getting worse. If you remain cigarette-free you will:
• Reduce your risk of being severely breathless and disabled or dying from COPD.
• Reduce your chance of developing lung cancer. After 15–20 years, the risk of lung cancer is reduced by 90% compared with people who continue to smoke.
How can I tackle the habit?
No one pretends giving up smoking is easy, but if you have made up you mind to quit one can succeed. Set a ‘quit date’ after duiscussing with your health care provide. Use simple tricks to reduce your urge to smoke and help you quit. Look for triggers and plan to avoid them.
Find new ways of thinking and behaving.
• Remind yourself why you gave up smoking in the first place.
• Move away to another place where people aren’t smoking.
• Keep busy to distract your mind: daily exercise is a good ‘distraction’ to promote
continued abstinence, while counteracting weight gain.
• Drink plenty of water.
• Take deep breaths.
Beware: some triggers for smoking only reveal themselves after you try to live without cigarettes. Tricks that work for some people may not work for others, so quitting can involve trial and error. Keep going! Ask your doctor or nurse for help. Contact a telephone or internet helpline. The most important thing is to be determined and to persist.
If at first you don’t succeed, try again…Nicotine addiction is very powerful and so only 5–10% of ‘quit attempts’ are successful. Withdrawal symptoms, such as craving, irritability, inability to sleep, mood swings, hunger and headache, that occur when the brain is looking for a new fix of nicotine, are a common reason for relapsing and treatment can help this.
Here are some other helpful Quit Tips1.Do not smoke any number or any kind of cigarette . Smoking even a few cigarettes a day can hurt your health. If you try to smoke fewer cigarettes but do not stop completely, soon you will be smoking same amount again. Smoking ‘low tar, low nicotine’ cigarette usually does little good either. As nicotine is so addictive, if you switch to lower nicotine brands you will likely just puff harder, longer , and more often on each cigarette. The only safe choice is to quit completely.
2. Write down why you want to quit. Do you want to-· Feel in control of your life?
· Have better health?
· Set a good example for your children?
· Protect your family from breathing other people’s smoke?
Really wanting to quit smoking is very important to how much success you will have in quitting. I is well known that smokers usually quit after a life threatening illness like cancer, heart attack- the reason is that they suddenly become motivated after a health scare. Thus find a reason for quitting before you have no choice.
3.Know that it will take efforts to quit smoking. Nicotine is addictive! Half the battle is knowing that you need to quit for sure for tat will help you to deal with the symptoms of withdrawal. You must give yourself a month to get over these feelings. Take quitting one day at a time, one minute at a time –whatever you need to succeed.
4. Don’t feel bad if it takes you more than one attemptThere is no ‘cure’ for smoking::; it’s more like managing a chronic disease. Most people go through cycles of stopping and re-starting the habit, which reflects the strength of your addiction. It is not failure. The good news is that:
• Each time you try to give up you are more likely to succeed.
• Counselling increases your chances.
• Medication increases your chances.
• Combining counselling and medication is the most effective.
5.Half of All adult smokers have quit. You can, too, that is a good news . When others can do it you can succeed too.
6. Get Help if you need.If you need help with nicotine replacement products or other medications please discuss with your physician or dentist.
Treatment options: Nicotine replacement products such as gum or patches can help relieve withdrawal symptoms by delivering small, measured doses of nicotine into your body. Strong evidence shows that anti-smoking medications can double or even triple your chances of being able to quit. An alternative treatment which doctors recommend for heavy smokers are non-nicotine drugs, such as buproprion SR (Zyban) and varenicline tartrate (Chantix). They are also effective in relieving the cravings and withdrawal symptoms. The idea of taking a drug to kick a drug habit can make people nervous. Some fear unpleasant side effects, while others fear that one addiction will replace another. But smoking is so dangerous for your health that, if you weigh up the options, (i.e. taking medication or continuing to smoke), using drugs to help you give up smoking will almost always be safer.
Useful links
1. Smokefree Partnership www.smokefreepartnership.eu
2. Tobacco Free Initiative (TFI) www.who.int/tobacco/en
3. ENSP - European Network for Smoking Prevention www.ensp.org
4. www.cd.gov/tobacco/quit_smoking/how_to_quit
5. Globalink - The International Tobacco Control Network www.globalink.org
6. Global Smokefree Partnership www.globalsmokefree.com/gsp
7. Tackling the Smoking Epidemic www.theipcrg.org/smoking
8. The European Lung Foundation www.european-lung-foundation.org
Monday, June 27, 2011
Marriage and Health Care Rights
With marriage currently in the headlines in New York, and as a follow-up on our previous caregivers post, it's a good time to take a look at spouses and health care. Legally, there are differences between marriage, civil unions, health care proxies, next-of-kin, power of attorney, etc. There are differences between state and federal laws, and laws vary from state to state. Since we're New Yorkers, and most of our patients are too, we'll focus on New York in-state rights for married couples.
- You can make emergency medical decisions for your spouse if they are unable to make their own decisions. Talk to your husband or wife about what they would want if they had an accident, their breathing suddenly got worse, or they're in the hospital and the doctor recommends they be intubated. Knowing how your spouse feels will help you make a decision if necessary.
- You can visit your spouse and your non-biological children in the hospital or nursing home. If your husband or wife, step-children, adopted children etc end up in the hospital, you will be able to visit them during time designated for family members.
- You have access to your spouse's employer-sponsored health insurance. Married couples can take out insurance from the husband's employer, the wife's employer, or both. Talk to your human resources department about what are often called "special life events" which include adding a new spouse or a new baby to your health insurance.
- You have the right to live with your spouse in a nursing home. There are well-reported cases of elderly unmarried couples being separated, even when they have power of attorney for each other's health care needs and are named in each others' wills. Married couples should not face this problem.
- You have the right to make funeral arrangements for your spouse. If you lose your husband or wife you are legally authorised to make funerary and final resting place decisions for them.
It should be noted that for gay couples married under the recently passed New York State legislation, these rights may not extend beyond state borders. If, for example, a spouse is hospitalized while on an out-of-state vacation, their husband/wife's right to make health care decisions may not be recognized. Since marriage recognition is a current issue, the list of states and countries where rights are granted is changing. Also note that federal statutes, such as the Family Medical Leave Act, does not afford coverage to gay couples even in states where gay marriage is recognized, because gay marriage is not recognized at the federal level.
- You can make emergency medical decisions for your spouse if they are unable to make their own decisions. Talk to your husband or wife about what they would want if they had an accident, their breathing suddenly got worse, or they're in the hospital and the doctor recommends they be intubated. Knowing how your spouse feels will help you make a decision if necessary.
- You can visit your spouse and your non-biological children in the hospital or nursing home. If your husband or wife, step-children, adopted children etc end up in the hospital, you will be able to visit them during time designated for family members.
- You have access to your spouse's employer-sponsored health insurance. Married couples can take out insurance from the husband's employer, the wife's employer, or both. Talk to your human resources department about what are often called "special life events" which include adding a new spouse or a new baby to your health insurance.
- You have the right to live with your spouse in a nursing home. There are well-reported cases of elderly unmarried couples being separated, even when they have power of attorney for each other's health care needs and are named in each others' wills. Married couples should not face this problem.
- You have the right to make funeral arrangements for your spouse. If you lose your husband or wife you are legally authorised to make funerary and final resting place decisions for them.
It should be noted that for gay couples married under the recently passed New York State legislation, these rights may not extend beyond state borders. If, for example, a spouse is hospitalized while on an out-of-state vacation, their husband/wife's right to make health care decisions may not be recognized. Since marriage recognition is a current issue, the list of states and countries where rights are granted is changing. Also note that federal statutes, such as the Family Medical Leave Act, does not afford coverage to gay couples even in states where gay marriage is recognized, because gay marriage is not recognized at the federal level.
Monday, June 20, 2011
Caregivers & Loved Ones
For many people living with lung disease, things aren't as easy as they used to be. It's not just dealing with medications and treatments, but everyday activities can leave you short of breath and exhausted. Often times, friends and family step in to help out. These people, who provide unpaid assistance to a person with chronic or disabling illness, are called caregivers.
Thanks to an aging population and the structure of the American health care system, the need for caregivers is greater than ever and rising quickly. So who fills the caregiver role, and what challenges do they face? The average caregiver is 49 years old, related to the patient (generally a spouse or child), and more likely to be female (although men are moving into caregiver roles more asnd more). It is common to find a family member providing care for more than five years, and most spend between 20 and 40 hours a week doing so. A majority will spend their own money to look after a loved one, with approximately 10% of the caregiver's income going to the needs of the patient.
More than 80% of people taking care of a loved one have no education on how to do so- and report feeling unprepared for the tasks they find themselves asked to perform. Besides access to information, caregivers most report needing emotional and physical stress management, support services, and time to themselves.
The best thing that a caregiver can do for the patient is to take care of themselves. A majority of caregivers find that they do not have time to attend to their own health needs, and are generally less healthy and have higher rates of depression that in the previous year. In fact, rates of depression among caregivers can be higher than among care recipients. As the health of a caregiver improves, they may find that the person they are taking care of feels better as well.
So, Caregivers: the best way to take care of a loved one is to take care of yourself first. Make time for your own needs so that you and your loved one can be happier and healthier.
Read more:
Caregivers Article from American Family Physician
Thanks to an aging population and the structure of the American health care system, the need for caregivers is greater than ever and rising quickly. So who fills the caregiver role, and what challenges do they face? The average caregiver is 49 years old, related to the patient (generally a spouse or child), and more likely to be female (although men are moving into caregiver roles more asnd more). It is common to find a family member providing care for more than five years, and most spend between 20 and 40 hours a week doing so. A majority will spend their own money to look after a loved one, with approximately 10% of the caregiver's income going to the needs of the patient.
More than 80% of people taking care of a loved one have no education on how to do so- and report feeling unprepared for the tasks they find themselves asked to perform. Besides access to information, caregivers most report needing emotional and physical stress management, support services, and time to themselves.
The best thing that a caregiver can do for the patient is to take care of themselves. A majority of caregivers find that they do not have time to attend to their own health needs, and are generally less healthy and have higher rates of depression that in the previous year. In fact, rates of depression among caregivers can be higher than among care recipients. As the health of a caregiver improves, they may find that the person they are taking care of feels better as well.
So, Caregivers: the best way to take care of a loved one is to take care of yourself first. Make time for your own needs so that you and your loved one can be happier and healthier.
Read more:
Caregivers Article from American Family Physician
Tuesday, June 7, 2011
Participating in a Research Study
As a follow-up to our last post, I thought I'd address the subject of clinical trials. If you're thinking about participating, or want to know more, read on. (Warning: this post gets kind of long!)
Participating in a clinical trial raises a lot of questions for many people. The main question often asked is: will this help me? The truth is that while the data gathered is very important to people studying the disease and is likely to help people with this disease in the future, the research may or may not help you personally. Research is not the same as treatment or proven diagnostic tests. Weighing the pros and cons of participating in a study often depends on the study itself. Your doctor can explain to you all the details of the particular study, and the following list of questions can be helpful:
· What does the study involve? (Research can mean a collection of DNA, filling out a questionnaire, taking a new medication, performing diagnostic tests, etc. It can often be two or more things combined, such as taking test before and after a new medication.)
· How long does it last? (A one-time blood test may take only a few minutes, while a medication or device trial can last several years. Many trials involve a follow-up period, where the researchers will check in with you every so often.)
· What are the alternatives? (Many hospitals participate in research so that they can give their patients the most options available. Make sure you know what your options are. Even if you have tried every alternative out there, or there are no alternatives available, you have the option not to participate.)
· Are there risks? (Knowing the risks can help you decide between research and alternatives you may be considering)
· Can I change my mind? (Ask your doctor if it will be safe to leave the study if you decide that it is not the right thing for you)
· What are the costs? (Ask who is paying the bills, or if you are liable for any charges. Some studies may charge for the tests they run, sometimes you will have a co-pay, and some studies will compensate you for your time or expenses. You should also find out who will pay the bills should any injury or ill-effects result from your participation in the study. While financial questions are important, they should not be the only reason you choose to participate.)
· Who will be in charge of my care? Can I still see my own doctor? (Coordinating your care is important, especially if you see more than one doctor. You also want to clear your participation in research with all the doctors involved in your care, and make sure they understand any changes being made in your current treatment.)
· What will happen to my information? (While research is subject to strict guidelines and regulations concerning privacy, you should feel comfortable in the way that your information is used and maintained.)
· Will I be able to see my information? (If you take a test as part of a study you may be interested in the results. Some studies can tell you your results right away, and others may not. If you knowing the results of the test may affect the outcome of the study, you may not be able to get your results until the study is over, if at all.)
· Can I see the results of the study? (Some studies will publish their results, others will only use the study for further research.)
· Can I continue the medication after the trial is over? (If the trial involves medication, you may or may not be able to get that medication after the study closes.)
· Who should I call if I have questions? (There are often several people involved in the research that are available for questions or concerns about your particular study, including a doctor, nurse, coordinator, and regulatory agency. Get names and phone numbers of who to call.)
· Are there any special concerns for this study? (These can be things like not taking your medication or not eating before a test, being available by phone for a weekly check-up call, arranging for a monthly blood test to be taken while on vacation, maintaining or eliminating certain foods from your diet, etc.)
Once you know all the details, you can make the decision that is right for you and your family. Remember that there are many different types of research, and all research is subject to many regulations and protocols that are designed to keep you safe and your information private. Whether the research is sponsored by a foundation, a government grant, or a pharmaceutical company, they are all subject to these regulations.
If you do decide to participate in a research trial, you will be asked to sign a consent form. These forms often list in detail exactly what the study involves, and who to contact should you have any questions, so you should always keep a copy for your records- even after the study is over. Should you decide to participate, you are helping doctors to improve the quality of care that they are able to provide, and you may be providing patients that are in your shoes in the future with better ways to be healthy.
Research and New Treatment Options
When you live with lung problems, it often seems like you have very limited options on how to make your life better. While there are no cures, there are new treatment options and research trials being worked on every day, in New York. It takes a lot of time for doctors and scientists to find out exactly why certain things happen in our bodies, and once they make that discovery, it takes time and money to find out how to affect the disease process. Even when they find a molecule that might work, they have to make sure it is safe to put in the human body. If it is safe, and without too many side effects, how will they then get it into the human body? If you put a medication in a pill, the pill goes first in the mouth, then through the digestive track, into the bloodstream, and eventually, the parts that can get absorbed, will make it to the lungs. Will that be effective? Will taking a pill have more effect on the stomach than the lungs? Each of these steps are subject to strict regulations by the FDA and other agencies, and each step takes time and money.
None of this should be discouraging. There are so many dedicated professionals working on these problems- devoting their life to making other people's lives better. At a conference for an upcoming scleroderma-pulmonary hypertension trial yesterday, one of the physicians making a presentation made this statement: We are just beginning to understand the mechanisms behind this disease. We are years away from working on a cure. We are working on this new drug because we think it will relieve people's symptoms and make their lives better.
None of this should be discouraging. There are so many dedicated professionals working on these problems- devoting their life to making other people's lives better. At a conference for an upcoming scleroderma-pulmonary hypertension trial yesterday, one of the physicians making a presentation made this statement: We are just beginning to understand the mechanisms behind this disease. We are years away from working on a cure. We are working on this new drug because we think it will relieve people's symptoms and make their lives better.
Thursday, June 2, 2011
We're now on Twitter!
Follow @ironlungsblog on Twitter to get breaking news, interesting information and all things healthy.
Wednesday, May 25, 2011
Welcome to the blog!
As you can see above, we are creating a new space for information regarding pulmonary hypertension, interstitial lung disease, pulmonary fibrosis, sarcoidosis and other chronic pulmonary ailments. Based at the border of Queens and Nassau county at the edge of New York City, we run patient support groups, conduct ground-breaking research from basic science through clinical trials, and take a real world approach to improving quality of life after diagnosis. Our staff includes MDs, nurse practitioners, and scribes (me!)- all of whom have experience with pulmonary disease and treatment.
If you have questions, or topics you'd like us to focus on, by all means let us know.
If you have questions, or topics you'd like us to focus on, by all means let us know.
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