It is just a link

[YLGuy]

So, my son's Pop Warner football team has been wearing pink in honor of breast cancer awareness.  On the teams website the team mother has set up a link to a breast cancer awareness website.  I am talking with her tonight and tell her I think it is great that she has put up a link to the Breast Cancer Awareness website.  I mention to her that we should have a link to the Donate Life website.  She looks at me funny and then rolls her eyes and says that the team has 4 families affected by breast cancer.  I feel like telling her, really? Your right, It's just me.  Who gives a *&%$ if I die. 

[jeannea]

Wow. How sensitive of her. 

(You know, it's really hard to type sarcasm.)

[CebuShan]

I know what you mean. I have friends that sell things like Tupperware, Pampered Chef, etc. They are always doing stuff for ______ (fill in the cancer du jour) Cancer Awareness but when I have asked about doing something for Kidney Disease Awareness they look at me like, "But that's not life threatening, is it?" Makes me so mad sometimes!

[willowtreewren]

Doesn't this just make you want to scream....or shake someone? 

Not life threatening? ARGH!

Aleta

[Iwannabean]

Cancer awareness is the "in" thing right now.  It's up to us to start some positive things in our community.  I went on local access Television last week to bring awareness to people.  I spoke about how I am in need of a kidney, and when my son died, he was an organ donor and there is a man living with his heart, and a girl living with his liver.  Our mission is not as popular as say the "March of Dimes: or the "American Heart Association" or Muscular Dystrophy.  If we want change we have to do it ourselves.  I would like to quote the late John F. Kennedy "Change is the law of life. And those who look only to the past or present are certain to miss the future" I will now get off my soap box and leave it up to my comrades.

Iwannabean 

[gothiclovemonkey]

what a... BEEP#$%^^&$###@$BEEP. that is so wrong
can u do it urself?

[mcclane]

I am glad someone brought this topic up.

I've noticed that 'cancer' is the 'in' disease nowadays, or has been for a while.  I'm not belittling cancer, as it is not fun, but why should one disease receive top priority while others suffer ?

I blame this 'prioritizing' of diseases on the media.  On tv, all i hear is 'cancer reserach' or 'donate to cancer'.  While all the activities are with merit, what about people living with kidney disease ?  In  early september here, there is an annual kidney march, where for 2 days they march from the mountains to the city to raise awareness on kidney disease.  No mention at all on the media about this, but they did give top billing to breast cancer marathons.

[Subeat]

It's all about PR.  The reason you are hearing so much about breast cancer?  Because years ago there was a push to get the information out there.  Organizations get high profile celebrities to talk up the cause, they launch full blown campaigns to get the word out on a national level.  And all of this takes money. 

We can all do things to inform on a smaller scale though.  Your friends or acquaintances don't know anything about kidney disease?  Inform them.  I can't blame them for not being educated when I didn't know much about it myself until circumstances forced me to.  If someone asks me a question, or has a misunderstanding about CKD or dialysis and I don't take the time to teach them...whose fault is that?

[YLGuy]

Here is the thing.  It was her reaction that really floored me.  She is a nurse and knows what I am going through.  I have volunteered for this team for 8 years.  I have donated hundred's of hours and hundreds of dollars to this team over the years.  I was just asking her to put up a link to Donate Life.
Yes, I agree. It is our responsibility to get the word out there.  That is why I asked for the link.  I let people know that I have ESRD and how long the wait in southern California is for type O blood. 8-10 years last I checked.
I think (hope) that she will do it.  Like I said, it was her reaction to my request that bothered me.

[MooseMom]

YLGuy, this woman obviously has no experience with ESRD, otherwise her reaction might have been different. 

What I think is odd is that there is not more media attention to CKD, given that there is such an upswing in rates of hypertension and diabetes.

To be fair, though, it seems like everytime I turn around, I see or hear a story in the media about how so and so got a new kidney/heart/liver.  Transplantation stories abound, but dialysis is like some dirty little secret.  I guess it is so depressing that people don't like to think about it.  People like to hear survival stories, about cures, about battles that have a happy victory at the end, and no one ever "wins" on dialysis.  Dialysis doesn't ever go away, and ESRD doesn't ever go into remission.

While this woman's reaction is indeed bothersome, it does illustrate the fact that more education is needed, so adding a link to the team's website about donating life is obviously necessary!  Her reaction proves this!  So, get her to add a link!  And when it is added, tell us about it so that we can go and see it.

[monrein]

And, and and....cancer affects kidneys too....and then people can't even get on the list for 5 years....Marc, I've everything crossed that she'll see the light and post the link.

 

[paris]

This is timely for me.   I went to the store today and commented to the cashier that she had a lovely, positive attitude.  She said we should all be glad for each day and people spend too much time being mad.  I agreed and added that I had a kidney transplant last year, and am grateful for every day I have.  "Well, you have a good day"  -- end of conversation.   IF I had said, "I just passed the 5 year anniversary of being cancer free" there would have been tears, congratulations -- but for kidney failure--nothing!     My sister in law died of breast cancer 4 years ago after 3 years of treatments, etc.   I saw first hand how the family treated her and what they did for her.  I loved Lisa and don't begrudge her one thing.  And I know she suffered.  She was also fortunate to be wealthy and went for treatments all over the US and tried everything to beat it.   Most of us don't have that luxury.  Yes, I am ranting!  After the transplant, when they heard that they couldn't send flowers---they were off the hook!! They didn't have to do a darn thing.  Not that I want their help, but acknowledgement of this monumental evert in our family would have been nice. Especially for my husband.    Why doesn't this disease count?  Why don't transplants count?  I don't understand.   Ok, I guess this thread pushed my buttons a little!!!!   

YLGuy, I hope she "gets" it one day.  And I hope her family never experiences kidney failure.     I'll stop now!   Sorry for the rant. 

[MooseMom]

Paris, 

I am really, really shocked at your family's lack of acknowledgement of the miracle you received.  I can't think of many things more medically dramatic than having a transplant!  How utterly bizarre.

[YLGuy]

Well, I noticed that the website had been updated and still no link.  I emailed the head coach of the team and told him about the conversation.  I told him that I was not angry.  I told him I was extremely disappointed.  I asked how the lives of the women of the Jaguar families lives were so much more important than mine that they deserved a link? I'll keep you guys posted.

[MooseMom]

Well, March is National Kidney Month, but since there is no football in March, do you think there would be many people visiting the team's site around then?  If so, maybe you could suggest that during the month of March, there should be a link to the NKF's website.

[cariad]

This is just beyond outrageous. I am not sure where you all are finding these people - no one has ever suggested to me that kidney failure was no big deal. Probably because it would be the last thing they would ever be capable of saying...? Marc, no one's problems should ever be minimized like that. She should be ashamed.

I know firsthand how people treat cancer patients. (***should probably warn all right now that I have a pitch black sense of humor that I'm rather proud of - keeps me out the straight jacket***)

After my chemo and radiation, I lost all of my hair, and I've written about how marvelously I was treated over that. I used to call that phenomenon my 'fake cancer' and would tell everyone Fake cancer is just the greatest thing, I highly recommend it. When Gwyn and I would be in public and he crossed me over any silly little thing, I would say as loudly as possible How dare you treat me this way. Can't you see that I have cancer?! Yes it was in very poor taste, but I think I've earned a bit of fun from all of these medical procedures.

[MooseMom]

LOL @ cariad, you naughty thing!

I took cyclosporine for 5 years, and if I'd be feeling tired and patetic, I'd moan at my husband, "I'm feeling immunosuppressed today, so could you do the washing up, please?"   Ya gotta laugh if at all possible.

[paris]

I also went through chemo to kill B cells and hopefully the new ones wouldn't have the antibody memory. Didn't change PRA one bit.  But, to the extended family, it wasn't the same chemo as Lisa had.   It is the exact chemo used for lymphoma, but it just doesn't count.   We just stopped telling them what was going on. We just made general statements. They all live several states away, so they didn't see the day to day progress.  They aren't insensitive, just not educated on this particular disease.

YLGuy, I do hope someone listens to you.  How simple it is to just add the link?   Keep fighting, Marc. You are an amazing example of how to live with this disease.  Love your attitude.   

Our niece was diagnosed with type 1 diabetes last year @ age 5.  Unfortunately, I know so much that I can't help but worry about her future and what she will face.  And kidney failure may be something she faces.   

Sorry --- started to write this an hour ago and my husband came into the room.  I asked him  what he thought of the amount of awareness that goes to breast cancer vs. other diseases.  (his sister died of it and the other sister was diagnosed 2 years later.)  He thinks it is all political.  I never understand that answer.  I just wish someone could explain why kidney disease isn't as important.  Of course, you do know that once you get a transplant, you are cured!  Hallelujah and praise the Lord!                I guess this is my day to complain and I have been taking it out on my kitchen!       It smells wonderfully fresh and clean!      Watch out refrigerator!!!   You're next!!!! 

[Brightsky69]

Thank you YL -

I always say to friends that kidney/dialysis/transplant should get a marking team like breast cancer has.    Cancer is serious and I don't have an issue with all that is done to raise awareness. I saw that cancer awareness has their own perfume now! Good grief.  Cancer awareness is all over the place. Friends on my FB page post nothing but pink cancer ribbons. I never see any of my friends post green ribbons. I on the other hand post kidney awareness stuff all the time. Never get a reply or a "like."
My latest post was:
 Don't think of organ donations as giving up part of yourself to keep a total stranger alive. It's really a total stranger giving up almost all of themselves to keep part of you alive. ~Author Unknown

I found that most people who know of my transplants will say -  Do you mind if I ask you a question about your kidney/transplant etc.
I always say "Of course not.....I love to spread the word about kidney disease and donation."       

[MooseMom]

@ paris...Please come to my house and vent your rage on my floors; they're filthy, and I have a stonking cold and refuse to swiffer.

I don't know why CKD doesn't get the attention of cancer, but maybe we could take some cues from them and raise awareness, using some of their tactics.

[YLGuy]

My son had his last regular season Pop Warner football game tonight.  Being the Business Manager/Player Administrator I am supposed to wear the same team shirt and sweatshirt that the rest of the staff wears.  I purposely did not.  Instead I wore one of my Donate Life T-shirts.  When it got cold I wore my "Dying for a kidney" sweatshirt.  It did not go over well with the team mom.

[willowtreewren]

Good for you, YL! I hope it made her a bit uncomfortable.

Kidney disease is just invisible to most folks. That's what I always say about it. When I tell people that Carl got a transplant, they always say, "Oh, I didn't know anything was wrong with him!" Invisible. 

 

Aleta

[okarol]

This is an interesting take on breast cancer awareness having top visibility http://www.zimbio.com/Breast+Cancer+Awareness/articles/-PvIUM78KeN/anyone+else+upset+breast+cancer+only+publicized

[aharris2]

My son had his last regular season Pop Warner football game tonight.  Being the Business Manager/Player Administrator I am supposed to wear the same team shirt and sweatshirt that the rest of the staff wears.  I purposely did not.  Instead I wore one of my Donate Life T-shirts.  When it got cold I wore my "Dying for a kidney" sweatshirt.  It did not go over well with the team mom.

 

[CebuShan]

Good for you, YL! Kidney disease is invisible to most people. I was one of those. I had no clue how many other body functions are dependant on the kidneys besides just urination. I wish now that I had been better informed. We need to keep trying even though we get the "look". You all know the one: "It's just the kidneys. So, you don't pee, they can clean that out. It's not like you had anything cut off."