World Kidney Day

[KT0930]

I wanted to share the email that I sent to everyone in my contact list today (both personal and work) in honor of WKD. Below that is a response I got from one of my co-workers 

Sorry I didn't include IHD in the links, but this is my safe place...don't want to share it with people I might have ranted about!

In addition to wearing your purple boas, what are you doing today?
~~~~~

Good morning!
 
I am writing to you today, March 13, 2008, because it is World Kidney Day. I want to make everyone I can aware of kidney disease and what their kidneys do for them.
 
As some of you are aware, I have been dealing with kidney disease for almost my entire life. During the best of times, while I have had a functioning transplant, I have been able to mostly forget that I have this disease. During the worst of times, I have been nauseous, irritable, fatigued, physically weak, and mentally confused. Dialysis and transplant are available as treatment options, but they are imperfect. Neither one is a cure; there is no cure for kidney disease. Dialysis only replaces 10-15% of normal kidney function, and a transplant does not last forever.
 
The two main causes of End-Stage Renal Disease (the point at which your kidney function has deteriorated to the point that you need either dialysis or a transplant) are diabetes and high blood pressure. If you have a family history of either one of these, please take care of yourself in order to protect your kidney. If you have either of them yourself, have your doctor do regular screenings for signs of kidney disease. I recently learned that this is not a part of a regular annual physical for most adults, even though 26 million people in the United States have chronic kidney disease, and most don't know it, since it has no symptoms until the late stages. Talk to your doctor about what you can do to postpone the deterioration of your kidneys if your blood tests show you are in the early stages of it.
 
Did you know that your kidneys do more than remove extra fluid and waste from your body? They also help maintain your blood pressure and bone health. They do this by helping to keep all the fluids, electrolytes and minerals in your body in perfect balance. Your kidneys are each only about the size of your fist, but they filter 200 liters of blood everyday.
 
If you would like more facts about kidneys, dialysis, or kidney disease, here are some good websites to visit:
 
            http://www.kidney.org/kidneyDisease/ (National Kidney Foundation)
            www.kidneyga.org  (National Kidney Foundation of Georgia)
            www.rsnhope.org  (Renal Support Network)
            www.aakp.org  (American Association of Kidney Patients)
 
Thanks for reading, and Happy World Kidney Day!

~~~~~

Thank you for sharing the information with us.  My father passed from renal failure.  He passed the day that you received your transplant.  I was happy when I heard the good new that everything had gone well for you and at the same time I was crying because my father has died.  I will certainly talk to my Dr. about the getting regular screening for any signs of kidney disease since my father was a diabetic dialysis patient for years.  He never liked those things they had to put in his arms, eventually in his neck and last in his stomach, and both of my parents had high blood pressure. I admire you so much, your character and strength and your smiles. Your testimony has encouraged me. Thank you!!

[Sluff]

Very nice KT and what an uplifting response by your co worker.

[devon]

I don't make it a practice, but I copied and sent this to several people I work with in the hope of sharing some notice about WKD.  It was so well written, I couldn't pass up the opportunity.  Thanks!

Sorry, I didn't know WKD was coming up. If I had, I would have sent gifts or made a turkey or something.   

Instead I will light a candle for all those who aren't here for WKD 2008.   

-Devon

[KR Cincy]

In addition to wearing your purple boas, what are you doing today?
~~~~~

I know I should do something constructive, but sometimes I tire of talking about it and I'm guessing my family and friends tire of hearing about it. It'd be nice if there was some self-exam we could encourage, but there's not. I'll have to think on it and figure out what to do to honor the day.

[rose1999]

I've worn my boa and told everyone I've met - think I may have bored a few but SO many people didn't know what dialysis entails, how common kidney diesease is etc.  How about next year we plan something for this day?.  Some of us  could try to get on local radio on in local papers and spread the word.

[Slywalker]

KT - how cool to do that.  I may consider doing something like this next year.  I'll probably look for your post and cut and paste - you have the facts so articulate I doubt I could do that good a job.

Today, World Kidney Day, is the six month anniversary of my new kidney and my husbands birthday.   All in all a GREAT day for me.

Sandyb

[KT0930]

Sly, you have great reasons to celebrate!

Hope everyone's having a great day!

[okarol]

Great letter KT - and the response is really nice.
I am emailing all my contacts too. I hope you don't mind if I copy some of your letter. I am adding "Kidney disease affects many people, and they are waiting and hoping to get a kidney transplant. Please take a moment today to be sure you've designated your desire to donate organs by registering with your state agency at http://donatelife.net/CommitToDonation/ or marking your drivers license. If you want to learn more about how to become a living donor, please go to http://www.livingdonorsonline.org"

[paddbear0000]

Man, I wish I could get up the nerve to tell people I have kidney failure! I would so send your e-mail out too. You did an awesome thing KT!

[Sunny]

That is an awesome thing you've done. You have brought awareness to people.
I am too afraid of people not liking my point of view on the subject to do anything about it yet. Everybody I know want's to sweep it under the rug and pretend it doesn't affect me,
or them. Hats off to you. Maybe next year I will have the nerve ...

[Bajanne]

That was such a great idea!  I am so sorry that my computer time is so limited these days.  I would have liked to send out an email like that today.

[kidney4traci]

That was awesome!  Very well written... I cut and pasted and added a bit too to personalize it.  I also thanked those that have offered to donate a kidney to me and to remind others to check the donate your organs box on their id cards.  I have never sent anything out like that before, but you never know who might here it and act, as your co-worker did.  Thanks for the inspiration and ease of spreading the message!!!

[Romona]

 

[Bill Peckham]

great letter KT

I've been posting about WKD on my blog here is a link to all nine of my WKD posts http://www.billpeckham.com/from_the_sharp_end_of_the/world_kidney_day/index.html

Actually it's eight of my posts and one by Meinuk. My eight include 3 World Kidney Day videos, a WKD contest blog and some articles you may not have seen

[okarol]

great letter KT

I've been posting about WKD on my blog here is a link to all nine of my WKD posts http://www.billpeckham.com/from_the_sharp_end_of_the/world_kidney_day/index.html

Actually it's eight of my posts and one by Meinuk. My eight include 3 World Kidney Day videos, a WKD contest blog and some articles you may not have seen

Thanks Bill. I just saw the youtube video The Amazing Kidnerellis! - World Kidney Day - pretty cute!

[KT0930]

Thanks everyone! Just an update on what my letter started:

The co-worker who responded sent a copy to her sisters and also offered to join any Kidney Walk team I want to do. The one here is usually in October.

My mother and my son's scout leader both forwarded it to everyone in their contact list.

One of the other scout leaders is also very active in the PTA, and offered to have something put in next year's March newletter, plus offered maybe I could go to the school sometime and talk to the kids about kidney disease.

Plus the ones here who said that they sent it out, as well.

I know how hard this stuff is to live with, and if one person catches the signs early enough to avoid dialysis, I've done what I wanted! Happy WKD!

[stauffenberg]

The thought is nice, but the facts are in dispute.  There is considerable theory now in the medical community that the high blood pressure which is associated with kidney disease is in fact not the cause but the effect of declining kidney function.  The kidneys release hormones which control blood pressure via the renin-angiotensin system, and as they deteriorate, their capacity to release these hormones fails, thus elevating blood pressure.  So controlling blood pressure to save the kidneys may be like letting the mercury drain out of the thermometer to lower the temperature.

Also, for many years now it has been observed that there is a distinct and sharp peak in new cases of diabetic renal failure 17.5 years after the onset of diabetes.  This occurs in around 35% of the diabetic population, but interestingly, in the other 65% of patients, renal disease almost never appears if the patient has survived 20 years or more post-onset without developing kidney failure.  This result is inconsistent with the theory that blood sugar is causing the deterioration, since if it were, renal function would fail at all stages of the disease, and the number of new cases would continue to increase over time, as the total amount of high blood sugar damage accumulated.  The leading hypothesis now is that renal failure in diabetics is due to a genetic susceptibility to renal failure which is inherited in association with diabetes in 35% of the diabetic population, for whom little can be done by way of prevention.

[Sluff]

The thought is nice, but the facts are in dispute.  There is considerable theory now in the medical community that the high blood pressure which is associated with kidney disease is in fact not the cause but the effect of declining kidney function.  The kidneys release hormones which control blood pressure via the renin-angiotensin system, and as they deteriorate, their capacity to release these hormones fails, thus elevating blood pressure.  So controlling blood pressure to save the kidneys may be like letting the mercury drain out of the thermometer to lower the temperature.

That does make sense.

[Slywalker]

Stauffenberg - my doctors told me that my high blood pressure was probably caused by my kidneys (mine are very small, they think they stopped growing when I was in my teens).  I'd been on blood pressure pills since 1982.  Kidney failure did not happen until the 90's.  My ERSD was hereditary in my case and no real label or cause found.  But I do believe there is still some science out there that uncontrolled high blood pressure does damage the kidney.

[cherpep]

KT0930, I was very touched by your letter.  I did the copy & paste thing and sent it out to my contacts too, I hope you don't mind.  It also gave me the opportunity to give my friends & family an update on my progress.  I have received such a positive response from people saying that it helped them gain an understanding.  My mom even told me that it made her proud that I'm her daughter, and she never stops being impressed by my strength and the strength of my fellow patients. 

Thanks, for posting that.  In that small gesture, you touched hundreds of people. 

Cheryl

[Sunny]

Stauff,
If what you say about the relationship between kidney disease and HBP is true, then why is it my kidney transplant doctors at Stanford agreed to allow my nine-year-older-than-me
sister to become my donor "if" she was able to control her HBP? (Which she did with HBP medicine).
At the time, I just didn't feel right about taking her kidney due to the HBP and I held out. Thankfully, my kidney function stablized and I wasn't forced on the issue.
However, I suppose it may become an issue again at some point in the future.

[KT0930]

Stauffenberg,
I realize there is new research and facts are being disputed everyday in every aspect of medicine, not just kidney disease. My idea in sending this letter out was to make people aware of kidney failure and how difficult it is to live with, and how the progression can be slowed down if caught early enough. It would not make sense, however, for me to say that kidney disease leads to high blood pressure (which all of us know it can, and does in many cases) if all the websites I'm pointing people to state that high blood pressure can lead to kidney disease. If someone is interested enough, and feels that they are at risk, then they can do more research online and learn all they can on their own. I simply got them started thinking about it.

Cherepep,
Of course it's ok to send it out! Anything to raise awareness. I'm glad it gave you a vehicle to inform others of how you're doing, as well. If you are hoping for a transplant, perhaps it will inspire someone to offer a kidney! 

[kitkatz]

I am wearing my purple boa to a Toastmasters speech contest today. I am the Toastmaster for this contest and I get to warm up the audience. Hehehe. Guess who is going to explain the boa?   

[rose1999]

GO Kitkatz 

[KT0930]

Yay Kit! Let us know how it goes!