Life Not On The List

Today is World Kidney Day. Yes, a day to recognize all your kidney do for you.

Did you know that your kidneys work hard in your body. They help regulate phosphorous, potassium, calcium and sodium, as well as other nutrients your body uses. As a kidney patient on dialysis I can attest to the power of the kidney in the human body. I have to follow a rigid diet to regulate these things now that my kidneys are not working. The kidneys also push toxins, waste, and fluid out of your body. Without the kidneys functioning, dialysis becomes the only choice. Say thanks to your two working kidneys sometime today.

Here is a link to the National Kidney Foundation for news on kidney related issues: https://www.kidney.org

I know the pressures that Kidney Disease can bring you,
I also know the costs.
Many outside of our community can’t understand, 
Not because they don’t want to,
But maybe it’s a price they don’t have the currency to pay.
What I mean to say is that it’s one thing, financially;
And that is a HUGE cost alone.
But, it’s another cost when you talk about Relationships.
All of the strained relationships from friends and family.
They may not understand the time, energy and finance.
It’s a whole different currency, because we are now SICK.
I don’t like that word, but is there another, better word.
Whatever relationship you can build on, that’s important.

I hope you cherish every relationship,
They are each important, 
But nothing is more important than your spiritual life,
Whatever that looks like for you.

Do you feel like you’ve lost a piece of yourself,
I think on this journey it’s so long and difficult,
That it would be easy and natural to lose a part of yourself.
But hang in there, in time, we will bring ourselves back.

It’s hard enough on our bodies, doing dialysis and than Transplant.
Than you have the restrictive diets and times and means and abilities.
Even though I’m going on 13 years post kidney transplant,
Dialysis and Transplant took so much out of me.
I had No money, No Energy, No Time and now No Friends.
I think that’s why these boards are so important,
It can’t replace many friendships, but it can Foster them.

We get our strength from each other, 
I know if I’m having a bad day, others will encourage me,
And when you have a bad day, I try to encourage you.
This is a process and I believe in it.
I know that we will monster on and get stronger,
Nothing in life is easy, and this burden is ours to carry on together.

So, even as we cover the Costs of this disease,
I want you to hang in there,
And if you feel like giving up, DON’T.
Hang in there a while longer,
Together, we will pull through, the hard times and the good times alike.

Know that we are Stronger Together.
And We are Not Alone.

http://www.kidneyfund.org/kidney-today/women-and-kidney-disease.html?utm_campaign=education&utm_medium=social&utm_source=facebook190308&fbclid=IwAR0forBcOtyUXFe0arAJ3DsZZZt_m9u8TeNuWO26OMy5TtPHXtcA8FEDvSs

I was messing around last night with paper and pencil and had an idea for a map. So I looked up the inside of a kidney, pulled the basic forms and turned it into an RPG map. The first map is my colored map. The second map is a freebie. A black and white map you can color for yourself! The maps are my own creation, whether correct or not I had fun doing it. I call it Kidney Island.

I am going to bring a copy of both maps to my nephrologist appointment and give them to my doctor. They will be a gift for National Kidney Month.

This is a picture of a Very Bad Kidney. I probably have two guys of these lurking in my own body. My friend’s daughter drew this picture. Her name is Jenna. She was on dialysis for much of her teen age and early adult years. She has had two kidney transplants. She a hero in my books. Her mother Karol is a hero, too, She searched the internet for a kidney for Jenna for years. She even advertised on the back of her car. Due to her mom’s efforts, this last year Jenna was in a paired transplant program with a living donor. Life has slowly gotten back to normal for her this year. You can go to ihatedialysis.com into the forums to find their story. Thanks Jenna for letting me share your pic during National Kidney Month.

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!