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.  I have her permission to share her picture on my blog.

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 working at great dialysis corporation, fights a never ending battle for health, no infections and good dialysis treatments! 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 does not mean you are on the list for a transplant.  Contact your nephrologist for the beginning stages of working 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

Transplant Evaluation- Why life not on the list

Did you all know that transplant is not an automatic thing that comes with dialysis? Just because you begin dialysis does not mean you are listed onto a transplant list. You must contact your nephrologist for a referral to the transplant hospital in your areas, and then complete testing to see if you are healthy enough to undergo a transplant. Blood work is also done. In addition you must keep up with the yearly transplant work-ups the team wants completed.

I started a transplant evaluation with Kaiser, May 7, 2015.

The last appointment at UCLA Was September 8, 2016.

Kaiser Work up
Referral from nephrologist to Kaiser transplant team.
Transplant Clinic class to be attended.
surgical clearance
cardiac clearance- both Kaiser and UCLA
urology clearance
Pulmonary clearance- both Kaiser and UCLA
dental clearance.
infectious disease doctors clearance
blood work- 18 vials of blood
chest X-ray
tb test
pap smear
mammogram
colonoscopy
Endoscopy
heart test
stress test
abdominal scan
electro-cardiogram
Sleep Study

angiogram
Doppler scan
Pulmonary Lung Function Test
INH and B6 for nine months-TB treatment
Kaiser transplant committee met about my case.
Paperwork sent to UCLA.

UCLA Work Up
UCLA transplant clinic class
Transplant team appointments at UCLA
Loopogram on the urostomy
Genetic blood testing
pulmonary hypertension had to be looked at with another angiogram- heart and pulmonary

Pulmonary clearance with UCLA 3 appointments

Cardiac clearance- 1 appointment

CPAP for three to six months.
Attend class for CPAP machine at Kaiser
echocardiogram again on the heart
Fluid only dialysis treatment to remove fluid each week.
Ventilation/perfusion scan for possible blood clots
Heart bubble test echocardiogram
A repeat high resolution CT-scan of the chest.
Test to see if fistula is causing PH.
CT-scan at UCLA
Lung Scan

Meeting with Transplant Doctors at UCLA
Results:
Transplant case is closed at UCLA.
No transplant for me due to my low BP.

This is the second transplant center that has said no to me or given me all sorts of excuses or things they want me to do before transplant.  All of the doctors I saw at UCLA were all for me getting a transplant until my ugly low BP-blood pressure raised its ugly head.

Kitkatz- Creator Lifenotonthelist.com

They say writing is opening a vein and letting the words run out.  Well I here I am.  Another person who may or may not have a story to tell. We shall discover that story together.

Let me be a good author and introduce the main character to this story, me.  I go by the nickname Kitkatz on the web in most places.  I am 54 years old, surprised to have made it to this age.  I am a parent and grand parent.  I am a retired special education teacher. (Yes, I have stories to share.)  I like to write poetry (Yes, I will share some of those, too.)  I love to read science fiction.  I enjoy adventure and science fiction movies.  (I will share my favorites.)

Now to the crux of this blog.   I am a dialysis patient.  I have been one for nineteen years.  No kidney transplant, no chance of getting one.  I am a permanent dialysis patient, permanent.  This means I was evaluated by a transplant team and turn down to be listed. Three days a week I go to a dialysis clinic for six hours to have my blood cleaned and returned to me.

I have discovered I have opinions on things related to my life.  So this blog is my space to share old ideas and discover new ones.

I hate the word list.  It is a four letter word.