I Showed You Mine, Now Show Me Yours

Bear and I are going to be married on April 6th. It will be a simple ceremony in our back yard under the magnificent palo verde tree (which I hope recovers from the recent freeze to be magnificent again very, very soon). We each have two daughters and one has a fiancé.  Add Bear’s best friend and you have our wedding party. Reverend Doctor Mitzi Lynton of Creative Living Fellowship will be officiating.  Simple, sweet, and to the point.

I don’t see how that will change anything for us since we’ve been together – and loving it – for years.  Well, there will be a thin white gold band under my engagement ring. Oh, and I’ll add Garwood as a hyphenate to Gail Rae. Wait, Bear will wear a wedding band, as yet unchosen, too.  But that’s it.  Or is it?

I’m starting to wonder what my chronic kidney disease – newly diagnosed as stage 3A or the beginning part of stage 3 – means to our life together. Bear is already wonderful about sharing meals with me when we go out and being sure to order only what I can eat.  He even picks up my exercise habit every so often and accepts that I get tired for no reason (hah!) sometimes. But I suspect there’s more.

According to The Journal of the American Society of Nephrology (JASN), a new study reveals your lifetime risk of developing kidney failure:

Approximately 1 in 40 men and 1 in 60 women of middle age will develop kidney failure if they live into their 90s.

People with reduced kidney function face an even higher risk.

Kidney failure is on the rise and currently afflicts 2 million people worldwide.

You can read the EurekAlert! notice about this article for yourself at: http://www.eurekalert.org/pub_releases/2012-08/ason-wyl081012.php

I’m a person with reduced kidney function.  So I face a higher than 1 in 60 women risk for kidney failure.  Not on your life!!!  Or maybe I should say my life.

I’m perfectly capable of keeping that heightened risk at bay and I intend to.  I have so much to look forward to. Obviously, we won’t be starting a family(That would be one for Ripley’s Believe It Or Not).  But there are daughters, lots of daughters, and they may choose to someday. 

Abby is starting her new job today.  I wouldn’t have missed that for the world.  How many better and better positions is she going to find in her career?  Kelly and Sean will have their own wedding next year and I’ll be there.  I want to see more of Nima… New York isn’t that far away. And Lara, how will she choose to have her life develop?

So, you ask, “How will you do that, Gail?”  I’ll educate myself about chronic kidney disease even more, that’s how. 

These are the groups I follow on twitter that have information to help me (and you):

Am Soc Nephrology‏@ASNKidney  –  ASN: Leading the Fight Against Kidney Disease.

American Kidney Fund‏@KidneyFund  –  The American Kidney Fund fights kidney disease through direct financial support to patients in need, health education and prevention efforts.

DaVita@DaVita  –  Giving life to dialysis patients. Creating #kidneyaware communities. Cultivating leadership with #DaVitaU. Living our core value of fun.

Joel Topf‏@kidney_boy  – Salt whisperer, nephrologist, runner, blogger and editor of @kidometer. Interests: teaching, medicine, electrolytes, CKD, and all things Apple#FOAMed advocate

Kidney Foundation‏@ChattanoogaKF  –  To provide help and information to those affected by kidney disease.

Kidney Foundation@kidneycanada  –  The Kidney Foundation of Canada is the national volunteer organization committed to reducing the burden of kidney disease.

Kidney Research UK‏@Kidney_Research  –  Right now, over 3 million lives in the UK are affected by chronic kidney disease. Please support Kidney Research UK.

KidneyDiet®‏@KidneyDietApp  –  An App to help you watch the 3Ps. Phosphorus. Potassium. Protein. CKD, ESRD, dialysis – whatever your situation, now make better diet choices w/ KidneyDiet®.

KidneyMI‏@KidneyMI  –  The mission of the National Kidney Foundation of Michigan is to prevent kidney disease and improve the quality of life for those living with it.

Libre, LLC‏@LibreClothing  –  A clothing company for chemotherapy, dialysis, & other infusion patients; making everyone’s day a little more Libre!

Mostly Medical Links‏@MostlyMedLinks  –  Interesting medical news and links via @JoshuaSchwimmer, a nephrologist.

NKF of Hawaii‏@KidneyHI  –  National Kidney Foundation of Hawaii

NKF Upstate NY‏@NKF_UPNY   –  The National Kidney Foundation Serving Upstate and Western New York

NurseGroups  – The social career resource for nurses. Tweeting daily nursing and health news. #TeamNurses

NYTimes Health‏@nytimeshealth  –  Health news from the Science desk of The New York Times

Renal Info‏@renalinfo  –  Baxter is a diversified company that develops & manufactures products that save and sustain the lives of people with kidney disease and other medical conditions

RenalFellowNetwork‏@RenalFellowNtwk  –  A website written for renal fellows, by renal fellows.

RenalSupportNetwork‏@RSNhope  –  Renal Support Network is a nonprofit, patient-focused, patient-run organization that provides non-medical services to those affected by chronic kidney disease.

RNCentral.com‏ @RNCentral  –  Nursing education, news, and healthy living tips

NKF_Advocacy‏@NKF_Advocacy  –  Join the National Kidney Foundation’s advocacy movement for people affected by chronic kidney disease, organ and tissue transplant and donation!

RWJF PublicHealth‏@RWJF_PubHealth  –  RWJF’s public health program area. We want to make staying healthy less costly and improve quality of life for all Americans. http://www.NewPublicHealth.org

The Kidney Group‏@thekidneygroup  –  Consistently voted Top Nephrology Practice in So Florida, we bring you kidney and related health news with commentary by our board certified nephrologists.

World Kidney Day‏@worldkidneyday  –  World Kidney Day’s objective is to raise awareness globally of the importance of Kidney Health and to increase screening for chronic kidney disease

You’re probably thinking, “Oh, so many different National Kidney Foundation addresses,” but each one has different, interesting, and (most importantly) helpful information pretty much on a daily basis.  Did I miss any?  Which do you follow that I haven’t listed here?

I’m making this journey and I’m going to enjoy it.  More information about ways to prolong it will certainly help.  I showed you mine.  Now show me yours.

Until next week,

Keep living your life!

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2 CommentsLeave a comment

  1. Congrats on your wedding. Wishing you both all the best. Your post brought to my mind once again of the burden of living with kidney disease. Those who are blessed with having a kidney disease that is still in the early stages and that they have some control over have my envy. I found out when I was diagnosed a few years ago that I have a genetic kidney disease. I try not to think about the implications for my daughters and now for my granddaughter. My life would not have been enhanced if I had known that my mother had passed her kidney disease on to me. Her kidney disease was of “unknown cause”. I do not want my children to find out whether or not they have this mutant gene. In this case I do not believe that knowledge is power. But I do try to tell them how important it is to eat right, get exercise, manage stress and inform their doctors of their risk. Then I try not to nag and my heart aches. But every day that I can greet the day not yet at Stage 5 and feel pretty good I am thankful. I try to do my part to slow the disease down.

    Great list, here’s what I had, not on your list:
    Kidney Health ‏ @kidneypaincures
    Kidney disease and kidney stones remedies and treatments
    Arbor Research ‏ @ArborResHealth
    Research to improve care for patients with kidney disease and organ failure, including the DOPPS study.
    UFNephrology ‏ @UFNephrology
    University of Florida Nephrology. Committed to quality patient care, cutting edge research, and the prevention of kidney disease. #UF #Medicine #Renal
    Medscape Kidney ‏ @MedscapeKidney
    Medscape Nephrology provides you with breaking medical news; reference on drugs, diseases, and procedures; and free CME.
    Nephrology Now ‏ @nephrologynow
    Keeping up to date with Nephrology
    NKF – New England ‏ @NKFNewEngland
    Kidney disease prevention. Improving the lives of people with kidney disease. Increasing availability of organs for transplant. We are all about ALL of that.
    Michelle Hogan, Ed. ‏ @NephrologyTimes
    Nephrology Times: Practical News, Trends, and Analysis for Kidney Specialists
    NN&I ‏ @Nephronline
    Renal news and resources for the kidney care community.
    AAKP ‏ @KidneyPatients
    AAKP is dedicated to improving the quality of life for kidney patients through education, advocacy and fostering patient communities.

    • While I have not researched all the organizations Suzanne has listed, it might be worth your time to investigate each. Just remember how easy it is for fraudulent organizations to make themselves look legitimate and that if something sounds too good to be true, IT IS! Thank you for your good wishes, Suzanne, and for taking the time to list possible sources for kidney patients. My plan is to research each and then add those that I’m comfortable with to the blog roll… after the wedding!


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