Sharing Experiences is the Best Way to Fight Kidney Disease

By Larry Blustein, Managing Editor, South Florida Sun Times

When I decided to write my guest blog post each month, it was with the idea of bringing all of us who are dealing with kidney disease together.

I wanted those who are battling the disease as well as those close to the situation to share the little things that may indeed be a huge help to all of us. With a schedule that demands 80 hours of my week, I am often reminded what I am living with each day as my body, which I use to dictate how I feel, is suddenly telling me when enough is enough.

In just three days after the initial blog post appeared here on the National Kidney Foundation website, the e-mails and letters to the column were so overwhelming, it made me think a little bit about what this space should be used for.

While I still will bring up various topics that dispel myths when it comes to organ donation and kidney disease, I thought that in our second column, I would share a few things from those who took the time to write and call:

• For those who have PKD (Polycystic Kidney Disease), slowing down the growth of the cysts is always a topic people ask about. While I have personally spent hours and hours researching what feeds cysts, the one thing that actually does not promote the growth is water. The importance of drinking water over any other beverage is truly a plus in battling the disease.

• The inspiration that Gayle Tarkington sent me was watching her husband go 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), they 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.

• Madeleine Theron was diagnosed with end stage renal failure in January of 2004. She has been on dialysis 3 times a week since 2006. Her husband had himself tested as a donor and they found him to be compatible. They were scheduled for surgery last week.

• Jehane O’Neal suffered with kidney disease her entire life. She had an infection when she was about two years old that completely destroyed one kidney and damaged the other. She was also blessed with a sister who was a match and gave her a kidney. That was in July of 2012. For the first time in her life, she can do things without being tired. It is a great gift and she tells everyone about donating organs.

• It’s about the youngsters as well. Audra talks about her 8 year old son who is three months post-transplant. He had been on dialysis for a month and is doing incredibly well! Audra also spoke about the “angel” here on earth that gave her son his new life, 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.

Like I have said all along, nephrologists and those who have dedicated their lives to caring for patients who have kidney disease, are limited to reading and treating. They simply do not have an idea what all of us are living with. Nothing takes the place from hearing directly from those who have to live this every day.

Moving forward, this is what my guest blog posts will be all about. Sharing actual experiences with those who are battling kidney disease. Your input is valuable to everyone, so feedback is essential if we are going to branch this potentially vast network out.

Contact Larry Blustein here with your feedback or drop him an e-mail at LBlustein@aol.com.

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