Patient Advisory Program

Shad Ireland
Georgia USA

Shad Ireland was born with healthy kidneys in May, 1972. Almost exactly eleven years later, in May, 1983, he and his mother got the news that those kidneys were now diseased and he would have to be on dialysis while awaiting a kidney transplant. Shad eventually underwent two transplant operations. The first kidney transplant, at age 18, lasted for three years. The second transplant was unsuccessful.

Facing a life of illness and having been told he would probably only live until he was 25, Shad decided to cram as much living on the edge into his life as he could. To him, that meant partying and having a good time even as he endured regular dialysis. He had no real goals beyond making sure what happened in the next 24 hours was based on having fun.

Then one day in 1993, weighing just 75 pounds and recovering very slowly from the rejection of his first transplanted kidney, Shad was resting and watching television. Flipping between channels, he saw a race he’d not seen before – a triathlon. He was captivated by the strength and determination the contestants in this difficult race exhibited and told his mother he would some day compete in that race.

The road to meeting that goal wasn’t straight or easy, but in 2004, Shad finished his first triathlon – the world famous Ironman – in Lake Placid, New York. He was the first dialysis patient to ever do so. By beating the astronomical odds against him through sheer guts and perseverance, he became a swimming, biking and running symbol of courage and hope in the face of a killer disease.

Steve Varsos
Wisconsin USA

I lost a kidney to cancer at age two. I was diagnosed with Type II diabetes and Stage 2 Chronic Kidney Disease (CKD) in 1995. Three years ago, I became insulin dependent and was placed on an insulin pump. In December of 2010 my kidney disease had progressed to Stage 3.

I met Shad Ireland in 2007 after listening to him give a motivational speech in Madison, WI. It was sponsored by the University of Wisconsin Hospitals Transplant Clinic. I was there as support for my sister who had just had a liver transplant. I was hoping it would motivate her, but it had a more profound effect on me. Shad’s story was absolutely incredible! I told Shad after the speech that, ”I wanted to be like him and do an Ironman triathlon”. He said, “Great! I’ll help you make that dream come true”. He did just that! In September of 2008 I competed in Ironman Wisconsin. I still compete in triathlons and half marathons today as a member the Shad Ireland Foundations – Team Ireland. I was an overweight couch potato, in fair shape, when I met Shad. I’m now healthier, happier and more active than ever.

I want to give back to the renal community because I was one of the many who thought my diagnoses of Diabetes and CKD was the end of the line. I wasted a lot of years letting those diseases control my life instead of controlling them! I’ve spoken to a lot of people who are shocked that someone with diabetes, CKD, on dialysis or a transplant patient can actually be physically active. It’s time to break that myth! You don’t have to do triathlons or marathons, but you need to be physically active. I want to help Shad spread the word and motivate others to take that first step towards a healthier, happier life!

Harvey Wells
Texas USA

Harvey Wells, now 59, first learned he had reduced kidney function when he was 18-years-old following a physical examination when attempting to enroll in the US Navy. However, his kidneys never presented a problem for him until the age of 42, when he was also suffering from very high blood pressure. Through improving his diet, Harvey was able to avoid kidney failure for some time, but eventually, in January 1998, needed to begin dialysis treatments to survive. By June of the same year, he received a kidney transplant from his wife that would last eight years before eventually failing. He began traditional dialysis at a treatment center three times a week lasting four and half hours each session.

These treatments often left Harvey feeling fatigued. He recalls, “I would get home and only be able to sit in a chair for a while, and that was about it.” He was forced to stop working and found traveling very difficult, as he needed to make appointments at centers where he was visiting and work with their already close-to-full schedules. The overall transition was difficult. “It can be depressing to suddenly be tethered to a machine for something your body once did on its own,” he says.

Thankfully, a relative, who is a nurse, told him about a different option: a portable dialysis machine, called the NxStage System One, which would not only enable him to do his treatments at home but also on a more frequent basis that acted more like a healthy functioning kidney. In the spring of 2007, he began training at a local dialysis center with his wife to learn how to use the 13-inch machine. Initially he was apprehensive about dialyzing on his own at home, in particular sticking himself with needles, but says he learned quickly and has become confident in his own treatments and care.

Now, dialysis at home has “become second nature, like brushing my teeth or combing my hair,” says Harvey. Since he is dialyzing more frequently, he has more energy and feels better. His blood pressure is now at a healthy level, and he no longer needs blood pressure medication. Doing dialysis on his own schedule allowed Harvey to return to work and spend more time doing things he enjoys, in particular traveling and spending time with his family.

Since 2008, he has traveled over 60,000 miles, mostly with his two grandsons – now ages 13 and 15, to 38 states visiting over 150 dialysis centers. Something he says he “never would have dreamed of” without the flexibility of the NxStage System. Living with a chronic illness is tough enough, my goal is to continue to live a full and as active of life in spite of my disease.

In March 2011, I was fortunate to receive my second kidney transplant after 5½ years on dialysis. I believe that my transplant was the result of being more proactive about my treatment and care. Learning about and understanding your disease and therapy are important tools to manage your health care.

I enjoy raising awareness of kidney failure and speaking with other ESRD patients about their experiences and helping them understand their options and choices. Home dialysis gave me a new, positive outlook on his long-term health. My life on NxStage and ensuing transplant has completely changed my life.

I view my life with renal failure to be a journey and each experience a place along the road of life. Inspiring others and helping to educate and make them aware of their options and choices helps to motivate me. The opportunity to help change people’s lives, particularly as dramatic as my life has changed, doesn’t happen every day and I believe that’s the opportunity I’ve been given and I don’t want to waste it.

I understand the depths that those living with renal failure along with their family and friends experience and it’s my goal to reach out and help as many of them as I can. When I graduated from high school, I dreamed of changing the world, I’ve learned that happens one life at a time. Living each day one day at a time and helping and encouraging others to do the same. The last several years traveling around the country and talking to others that live with the same disease has been one of the most rewarding experience of my life.

Working with the Shad Ireland’s Patient Advisory Panel will be another opportunity along my journey.

Lisa Bongiovanni
Michigan USA

Hello, Thank you for giving me the opportunity to help other patients. I’m now 28 years old, and am a single mom of a 5 year old little girl. I have been a dialysis patient for nearly 4 years now.

I have had many ups and downs as a dialysis patient. I have been had a few hernia surgeries that have allowed me to experience in-center hemo dialysis, as well as Peritoneal Dialysis. While on PD dialysis have completed my Bachelor’s Degree, nearly finished a book to help other patients with kidney failure, went to Sicily, took a three week road trip across the United States, and just came back from Germany! And now I am engaged to get married June 2012!

I know nothing is impossible with kidney failure! I love talking to people and encouraging them. There are many days that I struggle with this. I keep hoping and trying to focus on getting a kidney transplant and finally get my life back, and more children. So, I have been there. I know what it is like to wait on the kidney that seems to never get here but is in God’s timing, despite being so discouraged of having many antibodies.

Through my experience of ups and downs as well as knowledge I can offer experience advice, and encouragement, and especially answer many questions on travel, and the different modalities there are. I really believe the most important thing as a patient is to know your choices, and to feel like you are in control of your health.

John Gemmer
Indiana USA

I was looking at your notice posted on Facebook concerning The Shad Ireland Foundation. I was particularly interested in your opportunity, because I would like to help fellow kidney patients in some manner. Your Foundation seems like a perfect solution to my desire to make a difference in the lives of people. I received a transplant December 28, 2010, and ever since, I decided I would like to help in some way, if I could. Working with you to develop opportunities for renal patients would be a great way to accomplish my goal of helping people with ESRD.

I don’t know if you remember me, but I met you in Goshen, Indiana at the opening of a new dialysis clinic for FMC. We had a chance to talk briefly and you gave me some suggestions to improve my dialysis effectiveness. My nephrologist Dr. Henry Wu, allowed me to increase my treatment time and I think it was an improvement. I went from 4 hours to 4 ½ hours. Anyway, it was a small change but better than nothing.

I was diagnosed with chronic kidney disease in June 2007 and began dialysis treatment December 2008. I was stage 4 and almost 5 at the time of my diagnosis. I asked to be considered for a transplant and in February of 2009 I had completed all the medical testing and was accepted into the program at IU Medical Center, Indianapolis, Indiana. A year later I applied and was accepted into the University of Chicago’s transplant program and was dually listed with them and IU.

I was always compliant with my treatments and I did whatever I was told to help myself stay healthy as possible through proper diet, exercise and treatment in the clinic. I had considered home hemo-dialysis but I decided against it after reviewing the particulars of the program. It was just not for me.

My last treatment was on December 27, 2010 because the following day I received a cadaver kidney from a 46 year-old male. I have been doing fine since the transplant and I am thankful for the opportunity to again resume a relatively normal life. Naturally, I am taking the anti-immune medications but I am tolerating everything pretty well.

I am 63 years old and a retired daily newspaper publisher. I graduated from Indiana University in 1975 with a degree in accounting. Also, I am a Navy veteran, who served from 1968 to 1972. I was married for 31 years but I divorced about the same time I was diagnosed with CKD. I have one grown child and four grandchildren.

I would encourage everyone to take a look at the website. Use the tools and resources that the Shad Ireland Foundation provides for patients free of charge. Shad has inspired my life. I would like to do the same through my struggles and accomplishments. It would feel great to know that I made a difference, and that I helped others to understand that they to can live a wonderful healthy life with kidney failure.

I just recently graduated from nursing school and will be an RN as soon as I take the boards. I am training for a half marathon in October and I play golf, ride bicycles and I have a harley that I love to ride. For me, once I accepted that kidney disease was a part of my life, I was able to move past the “poor me” stage and start living life again.