By Gary Bodenheimer, kidney patient and Kidney Advocacy Committee member
I am writing hoping that this will help people understand a little more about chronic kidney disease and I’m thinking of the spirit of the holiday season. This is the time of the year when we give gifts to family, friends and love ones. I am thinking of the THE BIG ASK: THE BIG GIVE that we all, as kidney patients, hope for every day. Today, I am asking for a different kind of giving spirit, the giving of your time as an advocate for those who either have chronic kidney disease (CKD), or the 30 million people who don’t know they have Kidney Disease.
My “Big Ask” now is for each person who reads this to consider stepping up to the plate in this Christmas season. Become an advocate for these patients by writing your Senators and your Representative asking them to support the Living Donor Protection Bill (H.R. 1270) which will save living donors from losing their jobs while recovering and prevent insurance discrimination. I also ask you to ask them to support the early detection and treatment bill (H.R. 3867). This bill will help doctors detect kidney disease earlier, when something can be done to slow the progression of the disease and improve the lives of patients like me.
As background, I would like to share some of my personal story about how I learned about kidney disease and how it has affected my life. I hope that as I go through these trials of kidney disease it will help other kidney patients and their families better understand what to expect and the issues that we face. I am thankful and grateful that I have a chance to share this.
I was under the care of an oncologist who had just ordered chemo treatments again, which meant six hours of being hooked up to the IV. I can fall asleep through the treatment, then take a medicine so I don’t get sick from the chemo. I had also started another antibiotic that had to be taken every Monday and Friday, and a steroid daily. Then, I received a call from my doctor’s nurse who said my doctor needs to follow up to repeat the test to see if my indicators for cancer were going up or down.
Months later, I was preparing to leave on a cruise. I hadn’t been feeling very well so I made an appointment with my primary care doctor. He ordered blood labs for me. The doctor walked in the examination room and I immediately knew something wasn’t right. He wasn’t his normal jolly go lucky self. He looked me in the eyes, “I think you are having some kidney issues. I want to send you to a specialist, a Nephrologist, to verify what I’m seeing.”
Two days later, on the day Cathy and I are leaving for Florida to go on our much-anticipated cruise, I had another appointment. My nephrologist had ordered blood labs and a urinalysis. He walks into the examination room, then it goes from bad to worse. He says you are in Stage 4 of kidney disease. Your creatinine is 7.9 and your GFR is 18. There is also high amount of protein in your urine. You are in danger of renal failure and need dialysis. As I sat dumbfounded thinking “ok – so give me the magic pill that is going to cure this and I will be on my way. Our cruise is waiting for us.” He said instead there is no cure for kidney disease. However, there are things we can do to prolong the need for dialysis. He said he thinks he can prolong for as long as 5 years before needing dialysis.
It was some time later when I received a call from a lady at the National Kidney Foundation. It was the call that changed my life forever. She told me that they were starting a new advocacy program and my name came up in conversation as someone that might be interested in getting involved in helping advocate for people with CKD. I asked what I would have to do if I said yes? She said it involved talking to our elected officials to advocate for policies that would benefit kidney patients. I would meet with people and groups to tell my story about my kidney disease. This sounded like something right up my alley. I, of course, said “yes” and have not regretted a minute of it.
I hope that those of you reading my story will understand a little more about kidney disease now. Particularly, the need for early detection of kidney disease. If it is found early, as happened with me, then there is something that can be done to slow it down. We also need the Living Donor Protection Act to help protect living donors. There are over 100,000 people waiting for a kidney transplant right now. On average 12 people die every day off the waiting list hoping for a donor to step up to bat. We need to do more to help people like you make the decision to become a living donor today.
This holiday season, tell your legislators that you are in favor of them becoming co-sponsors for both of these bills. Then tell your family, friends, love ones and co-workers about your story of how you came to learn about kidney disease and the need for living organ donors. Finally, wish them all a very Happy Holiday and New Year! This is your big gift to all those you know and those you don’t. Please also consider calling NKF Cares at 855-653-2273 to become a volunteer.
My thoughts and prayers for all kidney patients and their families.