Fire

This was written several years ago after my husband had been in an accident at work and ended up with an amputation of his left leg.

Fire
I don’t really have an inspiring speech tonight to give to you all.
I hope what I am going to tell you tonight will have a positive effect on you.
Maybe it will even get you thinking.
My topic tonight is fire.

Margaret Wise in Soulforge said: You choose voluntarily to go into the fire. The blaze might well destroy you. But if you survive, every blow of the hammer will serve to shape your being. Every drop of water wrung from you will temper and strengthen your soul.

I absolutely agree with what she says
My soul feels like is has been on fire for the last two weeks.
Two weeks ago my husband was injured in a work related accident. It has been a time of fire for us. I have watched as a perfectly healthy man has had to adapt to being handicapped all of a sudden. He has had to learn new skills and relearn how to do old skills. Just watching him get up to go to the bathroom was a painful experience.
I have had to learn new things too.
How to not help when it looks like help is needed but it is not wanted.
How to stand back and let him struggle.
I had to rethink my thinking.
Our lives are going to be different.
We have walked into fire, not by choice, but through life’s circumstances.
Every blow of this hammer has forged us into a stronger relationship.
We both know that we have to survive for each other.
We lean on each other for support in our personal times of fire.
Sometimes we even dance within the flames together.

Dialysis Advice- A Few Things I Have Learned

I had someone ask for advice on making it 19 years on hemodialysis. Here is some advice on dealing with a chronic illness:

No matter what make your dialysis appointments. You will feel better eventually and it will show your teams you are following medical recommendations. I have not missed one in 19 years. Missing dialysis will affect your chances of getting a transplant.  They will consider you non-compliant to your medical teams’ prescription for dialysis. You can talk to your medical team about changing times, days and hours. Explain your reasons, look at input and output, look at your blood work together with your team. Then make the decision that is best for YOU.

Extend your time if possible to get to those middle molecules of potassium and phosphorus. Remember kidneys work full time 24 hours. Most centers are doing quickie treatments of three to four hours three days a week. Look into doing nocturnal dialysis. It frees up your days and you do dialysis at night. If it is available in your area. Or look into PD if you can do it. Or maybe doing home dialysis

Your health team should be supporting you, especially your dialysis center team. Ask the dietitian for information on diet and lifestyle changes you can make to help with daily eating choices.  Talk to the social worker if you need something.  Talk to the doctors and nurses who are there to help you.  Most of all LISTEN to what they tell you.

Manage your eating in a well balanced way.Make one lifestyle change in the way you approach food every two weeks. Clean out cupboards of junk food, drop one starchy carb from your eating plan, make a weekly menu including fast food or eating out.

Lean into your online support groups for help.

Get checked out by all of your medical team. Every one of the doctors who are going to have to clear you for transplant and keep those records and appointments up to date.  Keep track of things in a small notebook or online.

Be knowledgeable. Know your medical history and prescriptions. Be able to discuss it with doctors.
Gain knowledge and be able to ask questions of the doctors they are involved with.

Keep a log of names of doctors, procedures, who did what and when, that way when you meet a new doctor you have records handy and can discuss names and dates knowledgeably. (wish I did this)

Join a support group.  Be careful. Find one you are comfortable with. Use it for support and information as you go through the medical things. Ask questions.  Know they are support, not medical doctor’s truth.

Search for information on the internet but only as you can take it. When is too much stop looking. Take a break from info overload.  Process what you know.

Do something fun for yourself everyday. A joke, a smile, a game, tea, chocolate, whatever makes you happy for a few minutes.

Know that people act weird around someone who has an illness. Sometimes friends are not around anymore because they do not know how to deal with it.

Do not allow the illness or its treatment to become all-consuming in your life. It is going to take up parts of your life and sometimes it feels like it has become everything, but know these things are not your life.

If you believe in prayer, pray every day. Use your beliefs to help you through tough times.  Meditate to calm your brain and body.

Let little stuff go. “In the end it is all small stuff anyway.” Little stuff can cause great grief; sometimes you have to let it go.

Being beyond tired is a place you may feel you are often, rest…take time to let your body heal.

Remember some days have to be taken one second, one minute, one hour, one day at a time.

Dialysis treatments # 2966 and 2967

A Dialysis Day in My Life

9:00 am Wake up and get shower and dressed.

10:00am Get snacks ready for dialysis treatment time. 2 cheese sticks, 2 rye crackers, cut up apple, baby carrots or grapes. Put ice pack into bag, place snacks into bag.

Make sure everything is ready to go.  Into the bag: Headphones, warm pack, extra tape just in case, Ambien pills, Kindle, and Iphone. My bag of chair stuff is in the car: sheet for chair, blanket, pillow and neck pillow, foam pad for chair, and an extra change of clothes. I look like I am running away from home withall of this stuff.

11-12:30 Do what needs to be done at home, email and Facebook time.

12:30pm Leave house for lunch before dialysis

12:45-1:35pm Carls jr lunch- Charbroiled chicken sandwich, fries and a Diet Dr. Pepper. This is my usual lunch. It does not upset my tummy during my dialysis.

1:45 Arrive at dialysis clinic. Bathroom call, get weight,temperature, BP and set up in my chair for dialysis.

Dialysis machine. All computerized now. Notice the name WEED, for this particular treatment.  They use four letter words to name the machine for each treatment.

2:00pm-8pm- 2 -16 gauge needles into my arm and the blood is running through the machine. 6 hours treatment time. I get Benadryl and anti nausea meds while on the machine. Iron usually on Wednesday. Epogen is given as needed according to blood work.  

Blood work is done once a week, as well as a big results oriented blood work once a month. I receive a lab work report card once a month and anytime I ask anyone for results.

While on dialysis: I sleep for an hour or two. I watch TV. I play on my Kindle or read a book. Sometimes I get antsy from sitting there for so long. I usually last the entire six hours. There are some treatments when I am done, just done early. Staff will take me off when I ask.

8:00pm I am off the machine and holding my needles sites so they stop bleeding, usually a ten minute wait. Then I am off to home between 8:15 and 8:30pm, barring no catastrophes- bleeding or low BP.

8:30-9:00pm Home and dinner for a very hungry person. I amusually hungry when I get off of dialysis and need to eat asap.

9:00-12:00 pm- Home usually on my computer reading email, playing Facebook games, watching Netflix with hubby.

12:00am Bedtime.

This is MWF of every week.

I get ready to go to dialysis.

I go to dialysis.

I am at dialysis.

I come home from dialysis.

I recover from dialysis.

2965 Dialysis treatments

Counting it up to 3000.  I think on January 24th it will be 3000 treatments.  Time for another little party.  The cupcakes were a smash hit at dilaysis this afternoon.  Little treats to brighten everyone’s day.   A few “Nineteen years!” exclamations were heard.  Next year a big party to celebrate 20 years!

I am going to put  a new number up after every treatment until 3000!  I plan to have the staff Conga line with me through the center.  I will have It’s my 3000 treatment sign when I walk into the center.

 

Favorite Internet Sites

I am on Facebook at: https://www.facebook.com/ksotoemail

My blog: www.Lifenotonthelist.com

www.ihatedialysis.com a site for all phases of kidney and dialysis patients. Forums and Facebook page available. This site quickly became my second family and a major part of my support system. There have been ten reunions in Las Vegas of people from this site.

http://www.danoah.com This site has hilarity from one end to the other. A daily round up of memes. He asks questions and people answer them. This page posts new things regularly.

www.RSNhope.org A site for kidney patients. Mostly transplant related topics. Lori Hartwell does a  podcast. Lori Hartwell is the owner of the site. She hosts a Renal Prom for teenagers who have ESRD all stages every year. It is a beautiful event. She fundraises for the event and asks for donation of dresses. There is also a yearly essay contest.

https://alison.com A free university of courses to take online . Most of it is taught through powerpoint presentation format. There are lectures and quizzes throughout the coursework. A good place to keep the brain drain from happening.

www.ancestry.com The place to research your ancestry. DNA kits are available. I have taken part of my Dad’s family back to the beginning of time.

https://www.rattle.com A poetry place. You can submit in contests and get a daily poem sent to your email.

www.amazon.com Glorious shopping on the web.

www.gocomics.com Collections of the best comics on the web.

http://www.fowllanguagecomics.com A comic about parenting. Hilarious.

http://www.ostomy.org/Home.html   The main page for the ostomy association.   Forums are available. There is a search for local ostomy groups is available. I have had a urostomy for 40+ years.

http://www.wwe.com World Wrestling Entertainment   I love watching wrestling. I find it amusing. This site will take you to information on wrestling matches and wrestlers.   My favorite wrestler? Randy Orton.

www.netflix.com   Movies and TV shows galore. Netflix and chill.

Halloween Costume

This was my Halloween costume this year. I am known as Aloha Mama.  It is my WWE wrestling name I made up. I won the dialysis costume contest in 2015 with Aloha Mama Wrestling Outfit.

My husband even joined in with the craziness in 2015.

19 Years on Dialysis and Counting

Me and Supertech at dialysis

As of today it has been 19 years on hemodialysis.  Yes, 19 years.  I am having a quiet day today without dialysis.  I am going to get cupcakes or a cake to take to dialysis tomorrow to celebrate with people there.   It has been one thing after another to get to 19 years.  My biggest lesson learned:  Most of the time you have to take life one second, one minute, one hour, one day at a time.

Celebrate with me!!! 
As of today it is 19 years on hemodialysis.
That is 19 years straight, no breaks from it.
Dialysis three days a week for 19 years.
That is three treatments, 52 weeks a year.
156 treatments a year.
19 years times 156= 2964 dialysis treatments.
2 16 gauge needles every treatment =5928 needles

Several hospital stays.
Several surgeries and redos for graft and fistula
Major abdominal surgery for an intestinal perforation

Had two near death experiences.

It has not been easy.
I am astounded I am still here.

We started calling this particular tech Supertech.  She is sweet and puts up with our shenanigans.  Her name is Jennifer.   I designed and wrote a Supertech card for her.

Supertech (My apologies to the Superman Redo)

Fresenius, ‘Creating a future worth living. For dialysis patients. Worldwide. Every Day.’ Presents The Adventures of SuperTech. Faster than a beeping dialysis machine! More powerful than a 16 gauge needle! Able to leap towards a beeping dialysis machine in a single bound!   (Look across the clinic! It’s a nurse! It’s a doctor! It’s SuperTech!) Yes, it’s SuperTech…a trained visitor from another place, who came to the Clinic with powers and abilities far beyond those of normal techs! Supertech … who can change the course of treatment, put painless needles in with gloved hands, and who disguised as Jennifer, a mild-mannered dialysis technician for a great dialysis corporation, fights a never ending battle for health, no infections and a good dialysis treatment! And now, on Tuesday, Thursday and Sunday, more exciting episodes of The Adventures of SuperTech!

Favorite Science Fiction Authors

Some of my favorite Science Fiction authors:

Mercedes Lackey- my all time favorite author.  She wrote Fairy Godmother -a popular book. There is an entire series in which she puts a spin on the characters in fairy tales..  She write things from space science fiction to fantasy fiction. Her Heralds of Valdemar series is really worth a read or two.  The Elemental Masters series has strong female characters that use magic in London in the 1800s to early 1900s.  She has written much, much more.  I have three shelves of her books.  The newest books are The Hunter series. I like her books because she puts strong female characters in interesting roles.

www.mercedeslackey.com

Anne McCaffrey/Todd McCaffrey – Dragons Of Pern series.  A fantasy series that involves the settlement of a planet that runs into difficulties and has to come up with a way to change or save its way of life.  Strong female characters in this series, also. This author has passed on, however her son Todd has carried on the Pern novels.  She has also written several other series of books.  The first book I read by this author was The Rowan. This blossomed into an entire series about a family with special brain powers.  I think I have read every book she has written by now.

Terry Goodkind- Sword of Truth series.  This series is one of my all time favorites.  My sister gave me The Sword of Truth Book 1.  I put it away for a year and did not touch it.  I found the book while looking for something to read.  When I finished it I went to the bookstore for books #2 and #3.  I read every book in the series and then anxiously waited for the next in the series to come out. There are 16 books in this series and I hope more to come.  I love the main characters Richard and Kahlan.  They are put through all kinds of hell and damnation in the series.  If you like a good adventure ….

www.terrygoodkind.com

I am currently reading Mercedes Lackey’s A Scandal in Battersea.  I have the two Dragon Prophecy books to read next.  I am off to read my books.

 

 

Transplant Waiting List Information

In order to qualify for a kidney transplant you must qualify for the kidney transplant list put together through your transplant hospital and UNOS. Just because you are on dialysis in a center doe snot mean you are on the list for a transplant.  Contact your nephrologist for the beginning stages towards a transplant.

For additional reading on the kidney transplant list
The Kidney Transplant Waitlist – What You Need to Know
https://www.kidney.org/atoz/content/transplant-waitlist