Tips for New Kidney Patients

Last updated: Sep-6-2002

http://gil1.home.pipeline.com/esrd

I make my living from writing software for controlling machine tools, and began writing my current software after being on dialysis for 4 years.

Learning that you have a chronic disease is devastating, but if you know what to expect it is less scary.
Here are some tips and ideas that may help you adjust to this new experience.
Remember, it's crucial to take charge of your own healthcare and get the information and care you need.
The Internet is an excellent place for finding information. However, take any info from the Net with a grain of salt.
Try this website for searching:
http://www.google.com

Here are a few tips that can help you finding your way in this uncharted territory.

1. It's not the end of the world, it is not a death sentence, but it is a life sentence. While you have to change your lifestyle, you can still enjoy life, take care of yourself and your family.
2. Don't be scared by life expectancy statistic; it helps the government make forecasts but it doesn'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.
3. You have to be under the supervision of a Nephrologist. Kidney failure is unique and other doctors may not know all the details and the new advancements. Learn the name of your disease and how it progresses.
   Ask your Neph to spell for you the name of your disease, as well as any medical term that is linked to it, and write it down, in case you want a second opinion.
4. Learn everything you can about how the kidney functions, your disease, and what your options are.
   You should know that transplant is not a cure, just a kind of treatment.
5. Don't take any medication or receive any medical treatment without informing your nephrologist first.
   Tell all your doctors what kind of kidney disease you have.
   Beware of CT (CAT Scan) with dye. The dye may harm your kidneys.
6. No one can tell you exactly how long before you need a treatment. Some people live many years before they need dialysis. Some are diagnosed in the morning and need an emergency dialysis in the evening.
   Your neph can estimate the progress of your disease by comparing lab tests along a period of time.
7. Here are a few terms that you should make yourself familiar with:
• ESRD - End Stage Renal Disease. That's when your kidney function is no longer adequate.
• Creatinine - a protein produced by the muscles and released into the blood.
  Should be removed by the kidneys.
  Serum creatinine level and "creatinine clearance" are different ways of determining kidney function.
• Urea - protein waste that accumulates in the blood when the kidneys don't remove it.
  BUN stands for Blood Urea Nitrogen, used in blood tests.
• HCT, HGB - blood count measures the amount of hematocrit and hemoglobin.
  The first is the percentage of solids in the blood and the second is the amount of oxygen carrying substance in the red blood cells.
  With elevated Bun, blood count is going down and you may feel tired and exhausted.
• EPO - Erythropoietin (Epogen®), hormone given to increase blood count (other names are used as well).
• Phosphate binder - a pill to reduce your phosphorus in the blood.
8. Your nephrologist can measure your kidney function, that is, how less than normal they work.
   This is done by collecting urine for 24 hours.
   Most people don't feel anything wrong with kidney function down to 25-30%.
   When it is 12% or less a treatment is required.
9. A diet may help reduce the progress of your disease or at least makes you feel better.
   Ask your neph. Don't follow common health diets, or somebody else's diet.
   Don't cut on any food without your neph telling you to do so, but try to eat responsibly.
10. It is about time to examine your life style. Avoid all harmful habits like smoking, drinking, and eating junk food.
    Stay as physically active as you can. Try to maintain all of your previous activities, with family, friends, coworkers, work, and hobbies.
11. Over time you may need various medications to correct what the kidneys don't do.
    Learn the names of all of your medications - don't call them the Blue One or the like.
    Know the purpose, the proper dose, and possible side effects of every medication.
12. High blood pressure is one of the early signs of kidney failure and it is important to keep it in normal range.
    Your doctor may prescribe BP pills.
13. Your phosphorus may be too high and you may itch. There are phosphate binders (like Tums) that are taken with your meals.
14. When your kidney function is low Urea is accumulated in your blood.
    This may cause low blood count and bad taste (and odor) in your mouth. You may feel tired and weak and should receive EPO shots to increase you hemoglobin. You may also have to take iron pills.
15. Talk to the doctor. Ask questions. Be familiar with your numbers. What is your blood pressure? What are your lab results and what do they mean? Which ones are in your control (by diet and/or pills)?
    Tell your doctor whatever's on your mind.
    You are entitled to stupid questions, your doctor is not entitled to stupid answers.
    Knowledge and experience of your doctor are important, but if s/he doesn't listen to you, doesn't share information with you, is defensive when you ask questions, and has no patience for you, find another.
    Don't stick to your doc because "S/He already knows me"; a friendlier doc will know you sooner than you think.
    Trusting and feeling confident with your doctor is part of your well being.
16. Keep an eye on everything. You know yourself better than any doctor or nurse. If you are allergic or sensitive to anything, say it. Don't expect the medical staff to remember your history.
17. Get used to the metric system. Most hospitals use kilograms for weight and Celsius (C) degrees for temperature. Isn't it wonderful to state your weight as 90 kilograms instead of 200 lbs.?
18. Have a good scale at home; I recommend digital. Changes in your weight can tell you a lot about your kidney function, your dialysis, and your transplant.
19. Try hard to keep your health and life insurance - your chances of getting new ones are slim to none.
20. When you are about to start dialysis don't forget to call Social Security.
    In the US you are entitled to Medicare but the timing is tricky.
    A lot of info can be found at:
    http://www.medicare.gov
    Search for dialysis or kidney and read about coverage.
    Here is a summary:
    Medicare pays 80% of dialysis and 100% for tests and meds given during dialysis.
    Medicare doesn't pay for prescription drugs, except for 80% for transplant's anti-rejection drugs for 3 years.
    They pay hospitalization in full, including transplant.
    They also pay in full for home dialysis equipment and supplies.
    If you don't work you are entitled to a monthly disability check.
    You are entitled to dialysis at 12% kidney function.
    You can be on the transplant list even before you are on dialysis.
    
    Even if you don't have health insurance, many centers will dialyze you, probably the 80% is still good money.
    There are many programs for getting discounted or even free medications.
    Try these websites:
    http://www.Themedicineprogram.com
    http://www.rxmedaid.com/

To learn more about your treatment options read:
When dialysis is imminent

Good luck!