Life Not On The List

https://www.davita.com/education/kidney-disease/risk-factors/march-is-national-kidney-month

https://www.kidney.org/news/monthly/Focus_KidneyMonth

https://www.niddk.nih.gov/health-information/communication-programs/nkdep/get-involved/national-kidney-month

https://www.hopkinsmedicine.org/news/articles/march-is-national-kidney-month

A few links to gather information from on Kidney disease and dialysis. It is National Kidney Month.

If you adopt a dialysis center this month, bring in hats and gloves. Centers are cold. Bring a packet of goodies to share with patients. Bring donuts for staff. Bring in a large cake to share with staff and patients. Take time to talk to a few patients.

Send letters to your Washington political people telling them to keep paying for dialysis treatments through Medicare. Tell them not to mess with a lifesaving treatment for people across the nation. Also ask them to keep paying for transplant medication indefinitely. They only pay for three years of anti-rejection drugs after transplant now.

Help fund research into better ways to dialyze and research into artificial kidneys.

Wear green to signify your support. By a t-shirt from Cafepress.com that supports kidney donation. Look for the National Kidney Walk near you.

I thank you for your support. I dialyze to live, I do not live to dialyze. Now go do something fun and live a life worth living.

For those of who know a dialysis patient or are one yourself, has anyone told you there is a vital link between Fluids and your Heart? It is a vitally important topic. I thought I would share some information with you on this topic.

Today’s topic- Fluids.

Fluids are the bane of a dialysis patient’s life.  Too much fluid leads to overload.  Too little and you feel like you live in the desert all the time. This can cause shortness of breath and swelling of the ankles. I, personally, get swelling across the top of my belly when I am fluid overloaded.

Overload can create an increase in blood pressure.  Extra fluid will pool around the heart, so the heart will suffer ventricular hypertrophy- a stiff and thick heart that will not pump correctly.  This can cause your blood pressure to be too low or too high.  Too much fluid can also cause congestive heart failure. As much as I hate to scare you, Fluid Overload can lead to Death.

The Fluid Laments (Actual Things I Have Heard from Dialysis Patients.

“But I am thirsty all the time!

People drink in front of me all the time.

Why am I always heavy when I come into dialysis?

How do I drink only 32 ounces a day? That’s impossible!

I don’t care. I’ll drink when I want to and what I want to! It’s my life and my decision.

But when I go out, I have to have a drink!

Does beer count toward my fluid?”

The dialysis nurse tells patients all the time: “32 ounces a day, that’s it!  Keep your fluids in control. You can do it. I know it is not easy.”

Here are some tips to follow:

Ice, Ice, Baby!  Put it in a cup and let it melt. Drink the melt, chew on the ice.  Stay cool.

Sprays- there are sprays to buy that will help keep your mouth from getting dry.

Suck on hard candies, chew gum; lemon drops really make your mouth pucker and increase the feeling of fluid in your mouth.

Three small water bottles are your fluid allotment for the day.  Fill them, freeze them, use them to drink from them throughout your day.

Food has water in it also. Fruits are the worst for having fluids, especially watermelon.

 Soup is a fluid. Coffee is a fluid. Soft drink is fluid.  Juice is fluid

If it is a liquid and goes into a cup or a  bowl it has fluid.

Salt, otherwise known as Sodium, affects fluid retention.

Too much sodium and you will retain water.

Put the salt shaker away in a cupboard. Forget it’s there. 

Substitute other spices instead of dumping salt in things.

Buy salt free canned fruits and vegetables.   

Read labels.  This is the most important things about a Dialysis Life. 

Read the labels on everything!  Salt is added to everything these days.

You are in charge of your fluid intake.   YOU! ARE! IN! CHARGE!  Not your wife, grilfriend or mother, YOU!  Look in the mirror in each morning and ask yourself: “Who is in charge?  Answer: “I am in charge.”

So get out here.  Help your heart and watch your fluid intake.   

Remember: It’s Dialyze to Live, not live to Dialyze!  Get out there and do something fun!

Hello, I am a new patient just arriving at the dialysis center for my first in-center dialysis treatment. I’m nervous.  The only time I have been here is for a tour and it was overwhelming. I had dialysis in the hospital, but it sure looks different in here. What do I do first?  Where do I sit?  What happens next?  What should I have with me?  Does someone need to stay with me?   

All these questions bubbled through my brain when I walked into a dialysis center twenty years ago to have my first treatment.  Did I say twenty years ago?  Yes, I did. I have been on hemodialysis in-center for twenty years.  I know how it feels to walk into a dialysis center full of anxiety, not knowing what to expect.  Now you just relax.  I will walk you through a day in the life of a dialysis patient treatment in center. You have already signed the mountain of paperwork the social worker brought you.  They will give you copies of everything you signed.

Did you bring a warm blanket, some headphones and something you like to do?  Did you bring a snack (if your center allows food)? If someone is staying with you through the treatment, they will need to wait until you are on the machine before coming into the treatment area.  They will need to wear a paper smock while they sit with you.

Great.  You are now ready for the Great Adventure called In-Center Hemodialysis.   

The technician will come get you when it is your turn for treatment.  They will show you where your chair is for this treatment.   Put your things on your chair.   The first day the technician will walk you through the next steps.  In the future you will do it.

1. Walk over to the scale and find out how much you weigh.  It is usually done in kilograms, so do not be worried when it looks different than pounds.  Sometimes there is paper and pencils to use to write the weight down or keep it in your memory until you can tell your technician.  Today the technician wrote it down for you.   You both walk back to your chair.
2. The technician will place a blood pressure cuff on your non-fistula/graft arm and take a blood pressure with you standing beside the chair.  This gives them a baseline reading.  They will also ask how you feel and if there have been any changes. 
3. Take a little time before you sit down to make your chair comfortable.  Put your snack bag on the chair table opposite your fistula arm. If you brought a sheet to cover the chair, put it on the chair. Make sure your things are easily accessible with one arm.  Plug your headphones into the plug on the TV/ channel changer; Or ask where it goes. Shake your blanket out so it is ready to cover you.
4. Take a seat in the chair that will be yours for the next three to six hours, depending on your treatment time.  A nurse will come over and do an evaluation with you because this is the first time you have been here.   Usually the technician in your area will be there to hear your answers, that way they get to know you, too; and find out  if you are new to dialysis, or if you are an experienced old hand at dialysis.  They will ask you if you have a chest catheter or a fistula/graft already being used.
5. Most new patients have a chest catheter, so we will start with that assumption. Another blood pressure called a sitting blood pressure will be taken.  A nurse place you on the machine through the chest catheter.  This process does not hurt.  The only time it may hurt is when stitches are pulled on gently, or when she is cleaning your catheter site.  After you are undergoing treatment another blood pressure will be taken.  Dialysis should not hurt, so if it does tell someone.
6. A word about blood pressure being taken. The dialysis center is required to take a blood pressure once every thirty minutes while you are undergoing treatment.  They cannot change that.  However, if your BP is acting high or low they will decrease the time between measurements. You can help make this decision with your nurse and technician.  Blood pressure is one way they can tell how you are doing throughout dialysis treatment. Do not take the cuff off because it is uncomfortable. The dialysis machine automatically takes the BP and if the cuff is not on your arm they will alarm.
7. You have seen how this works in the hospital.  One line in pulls blood out of your body and sends it into the filter called a kidney. Do you see the long filter looking gadget attached to the machine?  That is called a kidney and it will do some of the work your kidneys are not doing today.  Not to worry, no more than a couple of tablespoons of blood are out of your body at any time during dialysis.  The other line they attach will return the cleaned blood to your system.
8. If you have a fistula or graft ready to go, the only difference will be they will use needles in on the access in your arm. Clean your access arm after you get your weight. This will help prevent infections.  The needles may hurt going into your skin, but there is lidocaine available to help. Also, you can buy or get a lotion prescribed to put on thirty minutes before you come in to dialysis that helps deaden the feeling in the area where the needles go.  The two needles are attached to long thin hoses: one is for venous blood, the other is for arterial blood.  Your blood makes the trip to the filter and back to you in a one-way trip.
9. Enjoy your treatment time.  Watch TV. Do the fun things you brought.  Have your snack.
10. Very important:  If you start to feel funny or different, let your tech or nurse know immediately.  Since this is your first treatment at the center, they will be watching you carefully anyway.  You need to tell them if you feel weak, get a giant headache, or muscles start to cramp.  Dialysis is making some serious changes during treatment to your body.  You can have some serious complications. 
11. Today your dialysis treatment went well, and you are ready to go home.  First the nurse will come to take you off of the machine.  She will disconnect both tubes carefully.  She will check to be sure the bandage she placed over the catheter site is all right.  She will tape it all down properly.
12. A sitting blood pressure will be taken while you are still sitting in the chair. The another will be taken after you stand up.  You will be asked how you feel.  If you start to feel dizzy, sit down immediately and report how you feel.
13. A trip back to the scale for your weight after dialysis.  You will notice you have lost a few kilos in fluid. Give your new weight to your nurse or technician.
14. Clean up your chair area of all your things. Unplug your headphones.  Unplug any devices you had plugged in.  Remember your cords and personal things.  Have good manners and throw your personal trash out.  Try not to leave a mess for the technicians to clean up around or on your chair.
15. It is time to leave.  Have a good day off dialysis and we will see you for your next treatment on your MWF or TTHS schedule. 

So, in review, you came into the center, found your chair, took your weight, had a nurse or technician put you onto a dialysis machine for your prescribed hours of treatment.  The most exciting time was when you were put on the machine and then when you were taken off it. Fairly boring for the rest of it as you slept, watched TV, ate your snack, or did things you brought with you.  You probably feel tired.  Go home, eat something, and get some rest.

Remember you dialyze to LIVE, not live to dialyze!  Do something fun between now and your next dialysis treatment.  We will see you back at the dialysis center according to your schedule, either MWF or TTHS.

 Watch your fluid intake…. but that is another topic.

Maybe managing the kidney disease is better for older patients than going straight to dialysis.