Tips for advanced patients

Last updated: Mar-12-2003

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Who is an Advanced Patient?

If you read this, you are. Many patients don't care about themselves and rely on the medical staff.
Patients that look for info are different from others and they make themselves advanced.

Learn, Learn, Learn

Learn everything you can about your disease, your treatment, other options for treatment.
Know your medications - their names, dosage, what they do, and their side effects.
What food is good or bad for you, and in what quantities? (Hint: everything that is healthy is not good for you).

Write a Diary

Write everything related to your health: appointments, medications, unusual events, etc.
Write symptoms you have at home and inform the nurse or doctor on your next visit or treatment.
Write when you start and terminate medications, so that side effect can be traced back.

Life Expectancy

Don't be scared by life expectancy statistics; they help the government making forecasts but they don't bear even the slightest information about the life span of each one of us.
If you don't have other health problems, you may die of old age, so plan for a long life.

Medications

Look at the prescriptions your doc gives you; if you can't decipher his/her hieroglyphs don't expect your pharmacist to do it. Remember that same medication may have more than one name.
Check carefully when you pickup your meds, unless you don't mind taking laxatives instead of sleeping pills...
If you pay for your medications, always shop around. Ask your doc whether you can use the generic drug instead of the more expensive brand name. The difference in price may amaze you.
Remember that new drugs may not work for you or you may be sensitive to them. Many pills today cost a few Dollars each, so always buy a small supply when you begin a new drug.

America is going Metric

That's the name of a book I saw in 1976. America is still going, but hospitals (and science) have already got there.
The greatest advantage of the metric system is the simple relations between different units of measurement.

There are a few units that you have to learn and get used to.

Temperature is expressed in degrees Celsius.
Remember that 36° (96.8° F) to 37° (98.6° F) is normal. 37.8° C = 100° F, 40° C = 104° F.

Weight is measured in kilograms (kg). One kilogram is 1000 grams or 2.2 Lbs.
To convert kg to pound quickly, multiply kg by 2 and add 10%.
For example: 90 kg, times 2 is 180, plus 10% is 198 Lbs. Doesn't 90 kg sound sexier?

Volume is measured in Liters. One Liter is a little over one quart.
But the nicest thing is that one Liter of water weighs one kg, so your fluid intake has the same value in either unit.
One thousandth of a liter is mL (milliliter) or cc (cubic centimeter).

Unit conversion

There are different units for your labs in different countries.
The SI (international standard) is used in many countries (Canada, Australia, Europe) but not in the US.
In most cases mg/dL is used in the US while mmol/L is used in the SI.

To convert SI units to US units:

Creatinine: divide by 88
Urea: multiply by 2.8 (for BUN)
Calcium: multiply by 4
Phosphorus: multiply by 3.1
Sodium, Potassium: same value
Hemoglobin: divide by 10, but in some places multiply by 1.6
To access the full conversion table go to: LabQuest

Depression

It is quite common for patients with chronic disease to suffer from depression.
Tell your doctor, depression is harmful if not treated properly.

Insomnia

Expect sleeping disorders, this is not unusual. Tell your doctor and get sleeping pills. RLS (Restless Leg Syndrome) occurs with 30% of dialysis patients (as the name implies you feel an immense urge to move your legs every few seconds). There are pills for that, like Klonopin.
For more info check:
http://www.rls.org/

Smoking, Drinking, Drugs

It is not my intention to tell you how to live your life. Just remember, everything that gets into your body stays there longer, sometimes much longer, than it would when the kidneys remove all toxins and wastes. A little wine or beer will not do you any harm, just don’t overdo it.
Note that if you smoke or do drugs you may not be eligible for transplant. Most centers require you to be clean for a couple of years.

For Dialysis Patients 

1. Buy your own thermometer instead of using the one in the dialysis unit.
2. Buy a digital scale to be in control of your weight.
3. Once in a while a blood test (like lipid profile) requires fasting. If you are on a late shift this is very inconvenient. Instead of fasting the entire day, ask your neph to give you the lab order and go to your regular clinic first thing in the morning.
4. Have a supply of gauze and tape in your home and car.
   Learn what kind of tape is best tolerated by your skin.
5. Before the monthly blood test, write down everything you eat between the last dialysis and the blood test. Also write the phosphate binder that you take with every meal.
   This may help the dietitian to analyze and advise you about your diet.
6. Try to be nice and understanding to the staff. Then they're more likely to treat you the same way. Earn their respect by being knowledgeable and involved.
7. Ask questions.
   What is your blood pressure?
   What are your lab values and what do they mean?
   What is the dose of medications given to you during the treatment?
   Ask your doctor to tell you any change in your treatment or medications.
8. Keep an eye on everything. It's your life. You should care for yourself more than any doctor or nurse.
9. Never miss a treatment. Nothing in the world is more important.