I'm telling my story

[rookiegirl]

Well, I finally got the nerve to go public and tell my story thanks to a friend at work.  I've been on CAPD for 9 months and finally made the transplant list on May 2008.  Unfortunately, I don't have a potential living donor.  I've always been too ashame to ask others because I don't want to inconvenient them with my problem.  My decision to go public is not just to find a potential donor, but to educate and make everyone aware of my disease and the treatment options.  So many people around my area are not aware of PD?  Even the local Dr's office I go to (ie. GYN, FP).  When I start to explain PD, they automatically assume I'm doing hemo.  They always look amaze when I start to explain my treatment process.

My friend at work is related to an editor of our local newspaper. She briefly explained to her my situation and was excited to meet me.  I spoke to the newspaper editor this morning and we scheduled a time this Thursday to sit down for an interview.

My goal is make everyone aware of what each patient and their caregiver has to go thru on a daily basis.  Bring awareness to the public about ESRD. Make the world open their mind, body, and soul to consider the gift of life.

Please pray for me because this was a hard decision just because I'm a very private individual and don't want anyone to feel sorry or sad for me.  I do what I do because I want to LIVE!

Thanks for letting me share,
RG

[monrein]

Count me as one of your backers Rookiegirl.  I'm behind you all the way as it's important for people to actually know someone who goes through all that we do.  Let us know how it plays out.

[paris]

We are all here to support you.  It is a hard to let the world know, but you will make a difference by educating more people to PD.  Keep us posted.   

[del]

Good for you rookiegirl!!!  It's amazing how many people know nothing about ESRD or dialysis.  People are often amazed when hubby says he doesn't pee!! (he doesn't go around broadcasting this but he does tell some people).  More of the public (medical people included need to be educated about renal failure.  Go for it!!

[pelagia]

You will always find support here!   

[okarol]

Good for you rookiegirl! You never know who may hear your story and receive the encouragement it will offer.

[napala turki]

Hi Rookiegirl,

Be strong, may God Bless You.... and all of us...

[lola]

Way to go RG

[rose1999]

You are very brave, it isn't easy to go to the press, I did it to raise awareness and try to get a local unit for my Dad, it hasn't come to that yet but it has got the lives of dialysis patients more recognition.  We remain hopeful of a local unit one day.

You are right, people don't know much about dialysis, kidney disease etc and have been amazed when I tell them all that Dad has to go through. 

I'm sending you positive thoughts and good wishes xx

[donnia]

Right here supporting you girl.  Way to go on informing the public. 

[LightLizard]

you go rookiegirl! good for you! here's an article i wrote some time ago to educate friends and family about the condition and the procedures involved. i've gotten fairly good feedback and response from it, so maybe you can use some of it? feel free...

Dialysis - The Last Resort

Many have heard of dialysis, but unless you know someone that depends on it to stay alive or you are fortunate enough to be one that doesn’t have to rely on it, you probably don’t know what it is and what is involved. Here is a basic primer of dialysis.
Dialysis is a treatment that is given to those who have, for whatever reason, lost their kidney function. The kidneys process water, salt and filter toxins in the body, (blood) sending the excess to the bladder to be disposed of. If your kidneys don’t work properly, or at all, you are in danger of being inundated with toxins that will eventually kill you.

I was ignorant of the dialysis procedure before my kidneys failed. I, like many, had heard of it, but I never paid much attention to the little bits of information that are available to the ‘un-initiated’. When my kidneys began to show signs of failure I was admitted to the renal ward of a local hospital. There, I saw many patients who were bed-ridden and suffering from numerous ailments due to the ravages of time and simple ‘wear-and-tear,’
which all of us are prone to in this life.

Many of these patients were in their seventies and eighties and would have to be wheeled - in their beds - to the dialysis unit three days per week for what is called ‘hemo-dialysis.’
This caused me considerable discomfort and dread, at the time, for I had been told by my doctors that I would very likely need to be on dialysis before very long and I assumed that they were saying, in essence, that I was going to be as debilitated and helpless as my poor fellow-patients seemed to be. I didn’t take into consideration the fact that I was much younger and did not suffer from the plethora of complications that my more elderly companions suffered from. Heart disease, diabetes, arthritis, dementia. No, my issue was a simpler one.

It began over fifty years previous to my present condition; when I was two years old, back in 1951, I developed pernicious anaemia. I was given a complete blood transfusion in order to save my life. In 1951 there was no knowledge of hepatitis C in Canada, and so, there was no screening of donated blood for that virus. Some of the blood I was given during that period was tainted with the hep C virus. It sat silently in my system for over fifty years, slowly destroying my kidneys as I lived my life, happily unaware, playing music for a living, making children, practicing and teaching Tai Chi, and generally living life to the fullest. But, like all things in life; change happens.

There are, basically, two kinds of dialysis. ‘Hemo-dialysis’ and ‘Peritoneal Dialysis.’ (‘P/D’)
Hemo-dialysis is usually done in the hospital or in neighbourhood clinics by trained, professional nurses. But, there are some who perform hemo-dialysis in their homes by themselves, or with a partner. This requires training and consistent attention.
All dialysis patients begin dialysis with hemo-dialysis.

Hemo-dialysis is a process that entails removing the blood from the body gradually, about one cup at a time, cleansing the blood through a filter, and returning the blood to the patient. This is done through the marvellous invention known as a ‘dialysis machine,’ which is connected to the patient through a catheter, (tube) that is inserted in the neck and shoulder area and sits over the heart, or, through a more permanent access known as a ‘fistula.’ A fistula is a surgically created vein that is formed by a surgeon when he joins a vein to an artery, usually in the arm, and it slowly grows into a vein large enough to accommodate the insertion of the needles that transfer the blood from the body to the machine and from the machine to the body. Hemo-dialysis is performed three times per week and takes about four hours each time it is administered.

The other method of dialysis is called ‘Peritoneal’ dialysis. It can be done in hospital, but it is an easier and more ‘user friendly’ system that allows a patient to perform it on a daily basis in their own home. There are certain health requirements that make it possible for a person to use peritoneal dialysis. One must have a moderately intact stomach lining, with minimal scarring which allows the free flow of fluids. This type of dialysis needs to be repeated on a daily basis because it does not remove the blood from the body, as in hemo-dialysis, but instead, it cleans the blood through the stomach lining, which acts as a filter for the treatment.

There are two methods of peritoneal dialysis. One is ‘manual’ – more or less. That is, there is no need of machinery or advanced technology to perform the treatment. First, one must have a soft, plastic tube surgically inserted (permanently) in the stomach.
Then, one must connect the external portion of the tube to a bag of liquid known as ‘dialisate’ or ‘dialysis fluid.’ This fluid is manufactured by a reputable, licensed medical establishment and consists of water and dextrose. The principle is very simple, really. It is the same principle that causes the liquid to be drawn from strawberries when one covers them in sugar. The dextrose acts as a sugar and draws the excess water from the blood, along with much of the toxins that the body ingests on a daily basis. One connects the belly tube to the dialysis bag. Then, the stomach is drained of fluid into an empty bag, after which, the full bag (pre-heated for comfort, of course!) is drained into the stomach. There it sits for about four hours and then the process is repeated. This type of dialysis is performed four times per day, seven days per week.

The last type of dialysis is also peritoneal dialysis, but it is done with a machine that acts as a kind of ‘pump,’ and looks something like a large VCR or a computer printer. On the top is a ‘bed’ on which a five litre bag of dialisate is placed, where it is heated to a comfortable temperature by a mechanism designed for that, in the machine.
Three other bags are also connected to the machine. Another five litre bag, and two three litre bags. Once the patient is connected to the machine, the process continues for a ten hour period. During those ten hours the stomach (peritoneal cavity) is filled and emptied six times, in total. The drained, toxin-filled fluid is pumped by the machine into a drain or a ‘jerry’ can and is emptied in the toilet after the procedure. This method is performed at night while the patient sleeps, which is a convenience for it leaves one’s day free for whatever activity one may be occupied with. Keep in mind that at the end of the treatment there is one and a half litres of fluid that remains in the stomach and absorbs some toxins throughout the day.

Dialysis is not a ‘cure’ for kidney failure. It is a treatment that is designed to keep one alive and hopefully, will be discontinued should the patient be the recipient of a kidney transplant. Dialysis is a poor substitute for kidney function. It only offers about ten percent of normal kidney function.

I hope, sincerely, that you are never in a position that demands that you experience it for yourself.

Love

~LL~

[LightLizard]

i realise that for the 'veterans'- this information is decidedly basic and fundamental, but keep in mind how little the general public actually knows about it...
 

[annabanana]

Rookiegirl, what you're doing is brave and fantastic!

[rookiegirl]

Lightlizard - thank you for sharing your article you wrote.  I really like the analogy you use about the strawberries & sugar.  I will definitely have to use this example to explain to others, maybe this time they will get it.

To everyone else - thank you for the encouraging words.

Tomorrow is the big day and I've been brushing up on my facts.  Just like a school girl studying for a big exam.  That is what I'm feeling right now.  I just don't want to give wrong information.  Especially when it comes to statistics.  But hopefully, like any good reporters or editors they will do their own research to confirm.

Thanks everyone for your support!

[LightLizard]

you go get 'em, rookiegirl. i'm honored to have you speak for me, and all of us.
 

[Romona]

The way to raise awareness is to tell your story. Before I was diagnosed I would skim over "another trasplant story" "kidney disease story". When I found out I was late stage 4, pre-paring for stage 5 I read everything I could find. It helps to read about people that are just like us.

  Don't be afraid! We will all be thinking of you!

[rookiegirl]

Well I did it  I did my interview.  I came prepared with printed materials from the internet explaining what is ESRD, alternative treatment options and living donors.  She was thankful and amazed with the information I provided.

I was a little nervous, but the publisher made me feel at ease.  We sat down as she took notes and asked questions about myself, family, ESRD, dialysis, friends, work, church.  Then she gave me the chance to explain my day to day routine on PD.  She asked questions on why I chose PD vs. Hemo. 

When she asked me about my friends, I had to mention "ihatedialysis.com" forum.  Hope you guys don't mind.  I had to give this site some prop because I learned so much from all of you.  Okarol - especially you and what you did for your daughter Jenna.  This really inspired me.  By the way, she loved the forum's name.

She wanted to also take my picture to go along with the article.  At first I asked do I have too?  I'm unsure about seeing my picture all over town.  Then I thought to myself, if I really want to reach out to others, it would help them connect to me if they can put a face to the story.  So I agreed.

The article will be published on 8/01/08.  When it comes out, I will share with you all.

Thanks for giving me the support to do what I did today.  This was a huge step for me. - RG

[monrein]

Sounds like it went really well RG and I have absolutely no doubt whatever that you were a terrific spokesperson for ESRD and all of us as well.  Thanks for doing this, it's so important and we all have a part to play in raising awareness.
 

[okarol]

  I am so proud of you rookiegirl!

[rose1999]

  Well done, you are awesome.  Looking forward to seeing the article.   

[KICKSTART]

  I hope it makes more people realize exactly what dialysis is all about !

[Bajanne]

  so proud of you, especially since you said that you are a private person.  But the public needs to know and understand.   That was a great step.  Thanks for mentioning us.  I saw this thread late and was about to tell you to make sure that you give a shout out to IHD.  Then I found out you had already done so.  Great move.  Looking forward to seeing the article.
YOU DONE GOOD!!! 

[pelagia]

I think people can relate and empathize more easily when they have some connection with the person telling the story.  You are helping many others in your community by sharing your experiences.

[KT0930]

I'm awfully late coming into this (saw it referred to in another thread), but had to say way to go, RookieGirl!!! 

It's after Aug 1 now, how'd the article turn out, can you share?

[rookiegirl]

I spoke to Saundra (Editor), there were some changes made with the magazine.  Therefore, the article will not be in August but in September's issue.  I'll keep you all posted and share once it comes out in September.