By Larry Blustein, Managing Editor, South Florida Sun Times
In my 30 plus years as a newspaper columnist, I have done so many feel good stories about survivors – and in that time – have never thought about what would happen if one of these stories and causes would affect my family. How would I approach writing about something that is closer to home than ever before?
On June 12, 2004, I was handed the answer to that question when I was told that my kidneys were declining and that some day, I would have to look toward a time-consuming three-day-a-week dialysis that would actually be the only link between life and death. Eventually, I would need a kidney transplant to survive.
For eight years, I changed my diet and my philosophies about life. I realized that there would come a time where my 80-plus hours and four jobs a week would take a backseat to something I had no control over. That time is fast approaching, and shedding all the tears in the world will not stop what lies ahead for my family, friends and for myself.
Just like most who are told this life-altering news, I began to research and see what I could do to make this Polycystic Kidney Disease (PKD) slow down. From nutrition to exercise, the only chance that I would have against this disease that fully engulfs your kidneys until you simply have no filtering system left for your blood, was to lower salt, potassium and proteins – and watch my creatinine levels. Never before have I read so many labels – in the small chance that anything I could do would be a positive.
Every so often, I will drop by with information in this BLOG that is first-hand and something that will give all of you an understanding that you are NOT going through this alone. I also encourage feedback. I want you to send me e-mails and share experiences. You will all be just as helpful to me as well.
NUTRITION
No matter what anyone tells you, diet is everything. When you are told to cut back on sodium and potassium, it is not a mere suggestion. It is designed to prolong your native kidney, holding off dialysis and giving you time train your body for a new organ.
Just a like when you diet throughout your life and want it to be successful, developing a lifestyle is a must when it comes to battling kidney disease. While staying away from such good things such as tomatoes, bananas, oranges and other high in potassium foods is always tough, there are no options.
As someone who has cooked all of my life, I am now in control of my diet more than ever before. Just be proactive when it comes to what you put in your body. You don’t have to be a trained chef to be healthy. All you have to do is read recipes that the National Kidney Foundation or your nephrologist has, and follow to the letter. I will even share some pretty good tasting recipes that I have come up with as well.
The days of alcohol and other things that may have been part of our lives, will take a backseat now that we are all in this together and looking for a better and more productive life. Remember, we are all in the same situation, and moral support and knowledge always steps to the front.
In the coming weeks, I will also tackle such important topics as “Busting the Top 5 Myths about Kidney Disease (or kidney transplant)”, “Top Tips for Living with Kidney Disease”, “What you need to know if you’re waiting for a kidney and how to live a healthier lifestyle” as well as being “On the Waiting List? Don’t Give Up”.
Have some feeback on anything from today’s BLOG? Drop Larry Blustein a note at LBlustein@aol.com.
Staying Healthy 
Very inspirational. And I just complain about having to stay away from carbs that put weight on me. This is a very inspirational story. (My husband’s mother died from kidney disease many years ago) It’s good to know that there are ways to keep you going. Good for you, for helping others!
Thanks for blogging and sharing!
We are ourselves on a journey to increase donors and awareness! You can see our efforts to create a film documenting many donors across the nation! Maybe you can help increase support and publicity for the cause. Kidney disease compromises and kills. It’s manageable but the goal is transplant. Our film will bring kidney disease onto table talks and up by diabetes and cardiovascular disease. Silent killers don’t need silent sufferers or silent heroes. I bet you could really help us knock this out the park! It’s worth a read and there has been media coverage locally and nationally and internationally. I wonder if your the missing link to full journalistic power!
http://www.indiegogo.com/projects/social-media-stole-my-kidney
Email me. I’m a nephrologist in AZ. We are trying to make history and save lives!
Thank you so much for sharing your story. I read this exactly when I needed to. Thank You.
Paige. We are all here. We are all survivors an fighters and that’s what will get us all through this. Communication and education.
Best of luck to you and your family Larry! My husband went through End Stage Renal Disease due to Type 1 Diabetes. He began dialysis in 2000 and was placed on the transplant list at UCLA Westwood. In addition to cooking/eating sugar free (he was on an insulin pump so he had better control than injections), we cooked with no salt, sugar, very little protein and tried to avoid foods with potassium.
In 2002 he was given the Gift of Life and received a Pancreas and Kidney through UCLA. We are ever so grateful to the donor’s family who made the ultimate decision!
Very good advice ! I found out I had Glomerulonephritis ( a virus that attacked both kidneys ) in 1997. By 2000, I had reached the point where I needed dialysis, I prepared to get on the “waiting list”, that process took over a year and a half…finally on the list it took me 3 mos. and I had a donor ! It was a 23 yr old killed in a motorcycle accident. A mother had to make that choice to donate her only sons organs. I am forever grateful. Having a transplant was the best decision I ever made. Unfortunately, the Gov’t will only help with the immunosuppressant drugs for 3 yrs, I did not have insurance and after struggling each month, one pill I needed was 800.00 a mos.! I rejected after 7 years…7 wonderful years. I have currently been back on dialysis for 4 years…There is currently a law trying to get passed in Congress that would cover the costs of immunosuppressant drugs for the entire life of the patient ! We need to get the word out there…contact your local representatives and ask them to support this law. What a difference this would make to so many., The advice about diet is so important…I still struggle after all these years, phosphorus is the biggest problem…my weakness is soda, coke to be exact, you are allowed clear soda, sprite, 7-up, but the dark sodas are the worst, stay away from added sugars and salt, and educating yourself is the greatest thing you can do…Research your disease. If you do have to begin dialysis, it can be very scary, but ask questions, make friends, you will become a little family, and they understand what you are going through. Limiting your fluid intake can be very difficult, I tend to chew a lot of ice cubes, it helps control the thirst. Too much fluid will build up and cause Congestive Heart Failure and a trip to the hospital. There will come a time when you no longer produce urine at all, and it will be harder to control the fluid intake. Well, I could go on and on…..I encourage you to Take Charge of your Health now ! I have become a Patient Ambassador for my dialysis center and keep the patients positive and informed…It has been very rewarding. Best wishes to everyone !
Hallo Larry! Same as you, I was diagnosed with end stage renal failure in January of 2004. Been on dialysis 3 times a week since 2006. My name is on the donor list since I was diagnosed, but no luck. Apparently I’ve got a difficult blood type – o neg. My husband had himself tested as a donor and they found him to be compatible. We are going for our surgery on the 17th of April. After 9 years of waiting a normal life is winking again. God Bless! Will follow all your articles and good luck.
Madeleine
Madeline. When you have 9 years under your belt, this is great news to hear. You are educated and disciplined and that is a great thing. Like me, you have done your share of research and are ready for this next hurdle. WE ARE ALL PRAYING. Keep us all updated on your success story!!!!!!
Please look at the recent news cast on Fox 10 today that covers what we are doing to raise donor awareness!
[video src="http://vidcache.newsoverwireless.com/ksaz/pmd-2/KSAZ-5623631.mp4" /]
Huge LINK for all to see and hear. Organ Donorship needs to be spread. Fear is replaced by education, betterisbest2011!
I have suffered with kidney disease my entire life. I had an infection when I was about two years old and destroyed completely one kidney and damaged the other. I don’t think I ever had more than a 50% percent functioning kidney. I was blessed with a doctor who told me that I needed a transplant, now. I was also blessed with a sister who was a match and gave me her kidney. That was in July of 2012. For the first time in my life I can do things without being tired. It is a great gift and I tell people I know about donating organs. Thank God for my sister.
Jehane. Great story and I am in awe of what you have overcome. Yes, God Bless your sister and family for being their. FAMILY AND SUPORT ARE EVERYTHING!
Thank you to all who responded. It’s all about supporting and helping each other. Ideas, comments, suggestions and experiences is what this is truly about.
The main thing I have always talked about – since being diagnosed, is the lack of national and international press. I am going to get “kidney disease” out there for everyone to see and understand. My main objective is SHOUT about this disease so everyone will fully understand and take the time to educate themselves.
I know so many people who are “clueless” when it comes to understanding what we are all going through, so instead of shouting and getting frustrated with their myths and tales about the disease and kidney function – in general – I now send informative LINKS.
If you see an article, anything educational or factual that someone will learn by reading, send it out. I recently sent some people 23 LINKS on various questions. It will help keep us all sane. After all, we all have much bigger fish to bake without salt in life!
God Bless you all and please keep us all up to date on what ‘s going on in your lives. Remember, we are all in this together – FOR LIFE!!!!!!!
I agree that kidney disease exposure is lacking. I believe social media is the medium to capture the needed momentum!!! Lets talk!
Thanks all for sharing! I have an 8 year old son who is post transplant 78 days today!!! He had been on dialysis for a month and is doing incredibly well! He admits that he has never felt this well his entire life! I agree that spreading the word for donation is key, we are so fortunate to have found our angel here on earth that gave our son his new life! She is an amazing woman who is a wife and mother to two children. She has a physical job, and went back to work half days at 4 weeks post op! She was back full time at 6 weeks and is currently training for a marathon this summer! She feels great and has had not one issue!
That’s awesome Andra! I’m so very happy! 8 yo SHOULD feel great! I have a 10 yo god child with a history of kidney failure and now kidney disease that I look at and want a solid future for.
Please share this campaign and watch it unfold to help spread the word of donation and salvation. It’s one of the most amazing things another person can do to help another.
Thanks to your son’s donor!
http://www.indiegogo.com/projects/social-media-stole-my-kidney-two
Jean
Larry my dear u have helped educating me more. I have kidney disease and knew little about the diet. Surely even doctors sometimes will treat u without giving u porper advise on how to live your life. I have been helped seriously and will keep in touch in case i learn something new. Thanks and may God heal u bro.
Brenda – Zambia
The claim is that saturated fats promote heart disease, right.
It’s a great alternative to butter on whole grain breads and wonderful for stirfry. However, this is slowly changing especially when the benefits of this natural oil is more widely seen in a lot of individuals using it.