My Kidney Story

By Kevin Longino, Interim CEO, National Kidney Foundation

Kevin Longino pic My name is Kevin Longino and I am a kidney transplant recipient, long-time kidney care advocate and the new interim CEO for the National Kidney Foundation (NKF). As someone who has a long history with kidney disease, I am excited to take on this new challenge. Kidney disease has been a part of my life in some way for as long as I can remember. My maternal grandfather died of kidney failure in 1953. He was only 41 years old. My mother has been living with kidney disease most of her adult life. And when I was 39 years old, I was diagnosed with Focal Segmental Glomerular Sclerosis.

My nephrologist immediately told me I had to reduce stress and begin to follow a healthy diet specifically tailored for people living with chronic kidney disease. At first I was in denial, but I soon realized these changes were necessary if I wanted to keep my kidneys functioning for as long as possible. I decided to leave my corporate career in the computer industry and I adopted an overall healthier lifestyle. And I’m so glad I did. As a result, I was able to postpone the need for dialysis for almost four years. While I was on peritoneal dialysis, I was fortunate to receive a kidney transplant from a deceased donor. That was in 2004 and my latest labs show that my transplanted kidney is still doing well.

I strongly believe that we must raise awareness about kidney disease. Through my personal experience, I know first-hand how early detection and preventative actions can actually slow or prevent the progression of kidney disease. This is why I became actively involved with NKF. I served on the National Board of Directors Executive Committee for three years before my current role as interim CEO.

One of our major priorities is advocating for kidney care, urging legislators to elevate kidney disease to the congressional forefront. It is imperative that we increase research funding, improve treatment for patients and protect living donors. I have met many times with my Congressman, Jim Himes (D-CT), to discuss the impact of chronic kidney disease. This has led to Congressman Himes joining the Kidney Caucus, which educates Members of Congress and the public about the problem kidney disease poses for our society, and co-sponsoring several bills important to the kidney community.

As a kidney transplant recipient, the gift of life from an unknown donor is a daily reminder of the importance of increasing the donor pool and decreasing the number of people on dialysis. You can help us in our efforts. Sign up today to receive advocacy updates and learn how you can take action to stop kidney disease and get involved with legislation relating to transplantation and organ donation. Together, we can make a difference in the lives of kidney patients across the country!

About nkf _advocacy

The National Kidney Foundation's advocacy movement is for all people affected by CKD, transplant candidates and recipients, living and potential donors, donor families and caregivers. We empower, educate and encourage you to get involved on issues relating to CKD, donation and transplantation.
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11 Responses to My Kidney Story

  1. Bill Hahn says:

    Thanks for sharing Kevin. So many people don’t realize the importance of a good health and fitness program, proper diet as well as yearly doctor’s visits and they role they can play in the quality of life for someone with CKD. I received a K/P transplant on New Years Day of 2009. That day started me on my mission of CKD advocacy. I have sense founded the Cocoa Beach Kidney walk with my friend and mentor Rich Salick. I made this donor tribute music video in 2010. My friends Rich and Phil Salick are part of the celebration of life as we tool down the beach at our walk site. If I can be of any help please let me know. https://www.youtube.com/watch?v=Ot_7bjo1PDE

  2. Very interesting story. My son lost his kidney function, not to disease, but to a 92% 3rd & 4th degree burn. After 7 months on CRRT, we feel sure that he will require dialysis permanently, until he is strong enough for a transplant. http://Www.amiracleforadam.com

  3. phyllis a bauer says:

    I think I have kidney disease, but dr. wont discuss it . my gfr is 48 andcreatine is 104. he just says, wait til it gets worse, but I want to try and keep it from progressing. I am 88. is this normal for my age?

    • Hi Phyllis, I have shared your comment with our NKF Cares Patient Information Help Line. Someone will be in contact with you shortly to discuss.

      Erin Kahle
      Director, Constituent Services
      National Kidney Foundation

  4. Cindy Hefty says:

    My son was diagnosed with FSGS at the age of 12. He lost kidney function just before his 21st birthday.I gave him a kidney which lasted 2 years. The FSGS caused it to fail. After 8 years on dialysis,he received a deceased donor kidney. It too only lasted 2 years.Now on dialysis again for 2 1/2 years and at the age of 35,he and his fiance (a saint) are on the paired donation list at U of CO medical center. Thank you for sharing YOUR story and for taking on this very necessary job!!!

  5. Theirdre says:

    I am a kidney recipient. I will live with kidney disease since i was in my 20s. I am now 44 years old raising my nieces. Since I have been giving a second chance, I have since then went back to school getting double degrees one in Healthcare Reimbursment and my second one in Medical Assistant. I would like contribute to helping others learn and understand chronic kidney disease. God has been my salvation through 2 kidney transplants and I want to educate advocate for those that dealing with chronic kidney disease. I am proud of you Kevin Longino,CEO. Keep up the good work.

  6. I appreciate your advocacy, but urge you not to focus on transplantation as the be-all end-all of treatments for kidney disease. While it is certainly a desirable treatment modality, it has its downsides, as my husband found out – he had two kidney transplants – one lasted six weeks and the other a year – but the cyclosporine caused lymphomas on both transplanted kidneys. It also caused total deafness in one ear, and he got toxoplasmosis, resulting in a.blind spot on one eye. We weren’t told at the time that cyclosporine causes lymphoma in 30 percent of patients. We also found out that transplants that last one year are considered successful – so when hospitals give you their success rate, keep that in mind. My husband has been on dialysis for 29 years. He has had the same fistula that entire time. He completed his Ph.D., teaches college full time and coaches the fencing team at the YMCA – all while on dialysis. My point is, dialysis doesn’t have to be something you suffer through while awaiting a transplant.

  7. Toni Martin says:

    Thank you for sharing your story. I have a very difficult story to tell. Who shall I direct it towards? I am trying to advocate for kidney disease and treatments but it has been very hard to facilitate this request. Thank you.

  8. William Evans says:

    I have been plagued by all the symptoms of “RLRV” which for many years I thought was solely due to spinal and neuropathy issues, until recently reviewing my many MRI’s and CT scans which clearly indicate a “Retro-Aortic Left Renal Vein” completely compressed between the Aorta and vertebrate. I can find no doctor in my area aware this condition exists, the implications of symptoms or the willingness to even read anything on the subject. Why is this such an unknown among the medical community and who do I go to from here? I’m in the “Tri-State” area of N.W. Florida, GA and AL. Tallahassee, Panama City or Dothan Al. are the closest areas but very primitive.Any recommendations?

    • Hi William, thank you for your message. I have shared your concerns with our NKF Cares Patient Information Specialists who will be in touch. You can always contact them toll-free at 1.855.NKF.CARES (1.855.653.2273) or email nkfcares@kidney.org.

      Erin
      NKF

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