You are here: Home Managing Your ... Summary
Information about all aspects of finances affected by a serious health condition. Includes income sources such as work, investments, and private and government disability programs, and expenses such as medical bills, and how to deal with financial problems.
Information about all aspects of health care from choosing a doctor and treatment, staying safe in a hospital, to end of life care. Includes how to obtain, choose and maximize health insurance policies.
Answers to your practical questions such as how to travel safely despite your health condition, how to avoid getting infected by a pet, and what to say or not say to an insurance company.

Summary

INFORMATION ABOUT EACH OF THESE SUBJECTS IS CONTAINED IN THE OTHER SECTIONS OF THIS DOCUMENT

Ideally, you should have both a primary care doctor for your overall health and a specialist experienced in treating your health condition.

While there is no right or wrong way to obtain health care, common sense says you will do better if you go for the best quality you can, choose your primary care doctor and specialists with care.

  • Preferably choose doctors who are Board Certified in their specialty who have a significant amount of recent experience treating your situation. 
  • Consider the hospital with which a doctor and specialists are associated when making a choice.
  • Time with doctors is short. Learn how to maximize your time with them.
  • If the doctor allows, record important conversations.
  • If possible, bring a person (a "patient advocate")  with you to important meetings with doctors.

Do what is necessary to get a second opinion when you want one. If you get major news (even if it's good news), consider getting a second opinion.

Consider bringing a mental health professional on board to help with the emotional responses to changes in your health. 

Decide how much you want to participate in your health care. Studies indicate that patients who take an active and informed role in their health care treatment decisions get better treatment outcomes. If you want to have control over your own destiny, be pro-active: 

  • Learn about your health condition, including the relevant medical jargon and the markers to watch for. (It's not rocket science.)
  • Decide what kind of relationship you want to have with your doctors.
  • Keep track of your medical condition.
  • Understand that you have the right to take, or not take, any drug or undergo any treatment.

When it comes to deciding whether to take a particular drug or treatment, be an educated consumer. It's up to you to decide whether: 

  • To take drugs or undergo treatments, and, if so, where to obtain them.
  • To use complementary medicines and/or therapies.
  • To get cutting edge treatment by joining a clinical trial and/or undergoing experimental treatments.

Adopt a wellness lifestyle. If it helps to make the change, think of it as part of your ongoing treatment. 

If you have more than one health condition ("Multiple Health Conditions"), thinking and acting like an educated consumer becomes even more important.

In case of an emergency, know what to do and what your rights are. If you do not have health insurance or cannot afford medical care, there are steps you can take  to get appropriate medical care.

If you are likely to need long term care and do not have Long Term Care Insurance, consider planning ahead to qualify for Medicaid. (If you are not likely to need long term care because of your current health condition, the condition may not prevent you from purchasing Long Term Care Insurance).

If you have a short life expectancy, keep in mind that It is your choice how to live your last days - not the doctors' and not your family members. Executing legal documents known as "Advance Healthcare Directives" will help assure your wishes will be honored even if you become unable to speak for yourself. They are free, and easy to complete. 

Get The Best Quality Care You Can

In order to get quality care, you first have to learn about your health condition. Between specific non-profit disease organizations and the internet, that's no longer difficult to do.

While health insurance provides access to the health care system, you can get what you need even if you are uninsured.

An educated patient can obtain quality care and also save money. 

How To Choose And Maximize Time With Your Doctor Or Other Health Care Provider

The doctor who specializes in your disease and the doctor who takes care of your general health (your "primary care doctor") are the most important members of your team when it comes to your health. A mental health professional such as a psychologist or social worker can be helpful. A mental health professional can be essential if you become stuck in an emotional down.

Choosing the correct doctor and other health care providers is an important first step. Ideally, look for a doctor that fits your needs - not some general idea of criteria for choosing a doctor.

Once a doctor is on board, your relationship is also important to the quality of your care.  If the relationship turns out not to work for you, or the doctor isn't as good as you thought, you can (and should) change doctors.

Even though your time with your doctor may be short, you can get a good bang for your buck if you prepare for the visit. Once you are with the doctor, let him or her know that you have items you want to discuss. It helps to record the conversation. It is also helpful to take a family member or friend. 

Your doctor can be a big help if you have a problem with your health insurance company.

If needed, there is probably transportation available to get you to and from your doctor and treatments.

NOTE: Do not expect your doctor to bring up end-of-life issues. If you have questions (such as whether your doctor is willing to go along with your thoughts), or you want to discuss issues, don't hesitate to bring them up.

Drugs And Treatments

When your doctor suggests a new drug or treatment, there are a series of questions to ask to help you decide whether to exercise your right to accept or reject the drug or treatment.

There are also specific questions to ask before surgery.

While the web is an excellent place to find medical information, if you need help finding the needle in the haystack you want, learn how to find the medical information on the web -- or who to hire to do it for you. There are also services that will research your condition and available treatments and provide you with a comprehensive report.

If you're not comfortable with the news, or a doctor's recommendation, you may want to seek a second opinion. Second opinions are generally paid for by insurance.

If you can't find an approved drug to satisfy your needs, perhaps you can obtain a drug that is being tested or not yet approved by the FDA.

Once you've agreed to a course of action, take your medications appropriately, using assistance if necessary to keep you on track.

Think of your pharmacist as a member of your medical team and choose one that works for you.

Saving money on your drugs is not the only factor to consider in choosing where to purchase your drugs.

If you want to consider taking an herbal or other treatment that is not considered part of Western medicine, think of those remedies as complementary, rather than alternative.

Choose over-the-counter drugs and complementary medicines with the same care as prescription drugs. They are not risk free. In fact, some can be harmful.

Second Opinions

A second opinion is the request for an expert to provide an opinion about a diagnosis, treatment or other medical suggestion when you already have an expert opinion.

A second opinion can come from an expert with the same expertise or an expert with a different expertise.

Thanks to modern communication, an expert to give a second opinion doesn't have to be local.

If you feel as if you want a second opinion, ask for one. Long term survivors suggest getting a second opinion whenever anything major happens - even if the news is unexpectedly good. Long term survivors even suggest getting a second opinion when the doctor's advice doesn't feel right.

Insurance generally covers second and even third opinions. If you're uninsured, you may be able to get one for free or for a low cost.

NOTE: Fear of offending a doctor is the number one reason most people don't seek a second opinion. Competent doctors recognize that medicine involves instinct and opinion as well as scientific fact and that doctors can reasonably disagree based on the same set of facts. Also, another doctor may notice a fact that the first doctor missed. Good doctors will not feel offended or threatened by a patient seeking a second opinion - especially when the patient has a serious health condition.

To Learn More

More Information

Second Opinion 101

Pain, Fatigue And Other Side Effects

Now that it is the 21st century, pain, fatigue and other side effects do not have to drag you down.

Pain can be harmful. It can be reduced or even eliminated through the use of medication and other techniques.

Places In Which To Receive Care

As with other aspects of your health care, you are in control of where that care is given.

You can receive immediate care from the following: your Doctor (in the office and sometimes even in your home), Retail Centers, Urgent-Care Clinics, Company Clinics or Emergency Rooms.

More extensive care is provided in hospitals.

  • Before you need one, decide which of the hospitals that you have access to is best for you.
  • It is advisable to plan now for the possibility of going into a hospital, including what to take, and how to best access an emergency room. While we can't convert a stay to a day in a spa, we do provide advice on maximizing your hospital stay, including staying safe from infection or medical error.
  • Don't leave the hospital without preplanning. Even if you have insurance, check the bill when you get out since such a horrendous percentage of them are wrong -- and not usually in your favor.

Ongoing care is also available at home [a wide array of help is available, including hospice (end-of-life) care if it comes to that], an assisted living facility or a nursing home. You may even find that a retirement community fills your needs. It is advisable to think through each alternative and research quality before making a choice.

Medical Research

These days it is easy to do medical research no matter where you live.

The primary source of medical information is your doctor. There are many additional sources, including the internet. 

When looking at medical information, always consider how reliable the source is. A great deal of "information" is anectodal instead of studied, and can be biased when presented by a person or entity with a conflict-of-interest.

To Learn More

How To Cope While Waiting For Test Results

It can be difficult to wait for a test result or a diagnosis. It's natural to worry. Still, there are things you can do to make the wait easier.

The techniques can involve all aspects of your life. They start with learning when and how you will get the test results (and following up if you don't get them on time), to watching for signs of depressin or out of control anxiety.

To Learn More

More Information

How To Cope With Waiting

Treatment: Before, During & After

Before treatment: Be an informed consumer. Explore the different treatments that may work for you, and the pros and cons of each. If you are uninsured and don't have health insurance, there are ways to get medical care. If you're going to enter a hospital, learn how to maximize your time there and stay safe.

During treatment:  Learn what side effects are reasonable and which ones should trigger an immediate call to your doctor or other health care provider. If you go through a rough patch, keep the goal in mind. There are generally medical and other steps to take to lessen any difficult side effects.  Watch for depression. Learn how to cope with anxiety and panic attacks. Practice wellness: eat as well as you can, exercise, get rest and generally do what you need to in order to take care of yourself. If you need an adjustment at work, ask for what's referred to as an "accommodation." (You may even be legally entitled to one).

After treatment:  The return to normalcy after treatment takes time. Relief may be mixed with depression. You will likely still need assistance from family and friends. It is advisable to get a Follow-Up plan which includes future symptoms to watch for. Set up a Medical Care plan with your doctor. Start focusing on wellness.

Expect a period of adjustment at work, whether you continued to work during treatment or took a break. Re-entries require adjustment. If you decide to change jobs, you can despite your health history.

If your financial and legal affairs are not in order, this is a good time to bring them into order. Documents in "To Learn More" show you how.

This is also a good time to re-examine what you want to do with your life. For instance, do you want to change your work/personal life balance? Your job? Your career? (You can still make those changes despite your diagnosis).

Think Of The Foods You Eat, Exercise, Proper Rest And Stress Reduction As Part Of Your Treatment

A wellness lifestyle:

  • Helps your body function at its best. 
  • Helps make you feel in control rather than simply relying on treatments and medication.
  • Helps prevent additional diseases.

If you smoke - quit.

If you are obese - lose weight.

Dental Services, Eyeglasses And Hearing Aids

Oral care post-diagnosis is important to avoid unnecessary infections. On the other hand, oral problems can be caused by a health condition, treatments and/or drugs. You may also need eyeglasses and/or hearing aids.

If you have health coverage, check to see what is covered.

You may be able to purchase dental insurance despite your health condition.

For uninsured products and services, there is help available.

Multiple Health Conditions (Comorbidity)

If you have more than one health condition (known as "comorbidity"), it is important to be treated as a whole person rather than by each disease specialist in a vacuum. 

See the document in "To Learn More" for more information.

To Learn More

End Of Life

It may be painful to think about, but it is inevitable that at some point we all die. Modern medicine may prolong life, but has not yet been able to overcome death. However, just as you have control over how you live, you also have the ability to control the end stage.

As a practical matter, it is your choice how to spend your last days.

Now is the time to decide what you would want to happen, at least to the extent of what you want to happen if you become unable to speak for yourself. A health condition tends to narrow our focus to what could happen due to the disease. In the meantime, any of us could get hit by the preverbial bus.

The way to keep control is by executing documents known as Advance Directives. The most important one is a Healthcare Power of Attorney which appoints a person to speak for you if you are unable to - and to enforce your wishes. A Living Will puts your wishes in writing to back up the Proxy if necesary.  A DNR is a document which asks that you not be brought back if your heart stops beating or your lungs stop working.

General Stuff That Really Helps

It may be difficult to do, but it's important to keep records of changes in your health condition on a day-to-day basis. Particularly record when you start taking new drugs or treatments, their effect, pain levels, and about the way your health condition affects your work. If you're not up to it, ask a friend or family member to keep track for you. (Survivorship A to Z provides a Symptoms Diary to help you keep track. The click of a button changes it into an easy-to-read graph for your doctor or other medical professional).

Do what you can to minimize medical error. Even if you can get the medical provider to fix the error at no cost, you will still be saddled with the physical and emotional result.

Look at your medical records at least once a year. Medical records are key to your health care and for other purposes. For example, the records will be examined if you apply a for private or governmental disability income.

If you like keeping money in your pocket instead of putting it in a stranger's, learn the techniques for saving money while getting medical care.

When you obtain health information: 

  • Always consider the source. Original ("primary") sources are the best. 
  • The worst case scenarios that you are likely to read about on the internet or in case studies, or hear about from other people with your condition, probably do not apply to you. 
  • Always check what you learn with your doctor. 

Wear medical i.d. if a common drug could be unusually harmful to you .Always carry in your purse or wallet a short description of your health condition and a list of the drugs you are taking in case you're in that accident for which mothers warn you to wear clean underwear. (Survivorship A to Z provides a List of Medications to help you keep your list to date.)

 

Last, but certainly not least, if you smoke: quit. Quit lines for each state are listed at SmokeFree.gov offsite link. You can also call the American Cancer Society's Quitline at: 800.227.2345