No Warning: A Hepatitis C Scare

Nichole Jefferson has always been her own healthcare advocate because of her asthma. But when she was diagnosed with kidney failure in October 2003 at 31 years old, her life changed drastically. 

The diagnosis was unexpected and devastating but Nichole jumped into action, learning as much as she could about her treatment options. She chose peritoneal dialysis due to a needle phobia. While that treatment was being coordinated, she was temporarily put on hemodialysis.

Soon after starting her treatment Nichole received yet another piece of unsettling news: her blood work showed the possibility of the Hepatitis C virus. She did not know what this meant, how she could have gotten it, or how it would affect her life and dialysis treatment moving forward. Luckily, after retesting her blood, doctors were able to confirm that she did not have Hepatitis C.

Recently, Nichole heard about the CDC alert of an increased number of reports of newly acquired Hepatitis C virus (HCV) infection among patients on hemodialysis. She remembered her own scare – how she learned about Hepatitis C by asking questions, doing her own research, and advocating for herself during treatment. Although she didn’t have Hepatitis C, she learned a valuable lesson about the importance of adhering to infection control practices to reduce the risk of infection – both for healthcare professionals and patients alike.

Nichole will be sharing her story live on our Facebook page along with our medical expert Dr. David Roth, a nephrologist and Professor of Medicine at the University of Miami Miller School of Medicine. Dr. Roth is also the Clinical Chief and UNOS Medical Director of Kidney Transplantation at the Miami Transplant Institute.

Join us on Thursday, June 23rd at 1 pm EST for a live discussion about the risks and symptoms of Hepatitis C

About Nichole:
Nichole Jefferson is originally from Dallas, Texas, and currently resides in West Des Moines, Iowa. She moved to Iowa in 2011 after accepting a new position with her current employer. While in Iowa, she has been involved with the local and national chapters of the National Kidney Foundation.

Dialysis and Hepatitis C: Are You at Risk?

Are you at risk for Hepatitis C? Hear live from Dr. David Roth, nephrologist and professor of medicine at the University of Miami Miller School of Medicine, and patient Nichole Jefferson who will discuss the risks and symptoms of Hepatitis C. All you have to do is tune in to our Facebook page at 1 pm EST on Thursday, June 23rd! 

Kidney Donation Inspires a Former DJ to Become a Nurse

By Chris Melz

When I found out that my good friend from junior high school, Will, was in need of a kidney donor, I did not hesitate to step up. I knew that Will had been suffering from diabetes and I had watched him go in and out of the hospital a few times. In August 2008, on the day he started dialysis, I called Stony Brook hospital and inquired about being a living donor.  My education on the end stage renal failure and transplants was very limited at the time; however, I did know that I wanted to help my friend.

Pre-surgery consisted of many months of various tests to make sure that I was a match. While it took a few months, the medical professionals want to make sure that I could live a healthy life with one remaining kidney. I appreciated how thorough the process was, since this was not a small feat. Once I was cleared, I felt even more confident that I made the right decision.

The transplant surgery was performed
8 months after my initial inquiry on April 21, 2009. The transplant went smoothly, and both Will and I came out of it in good health. What had surprised me most, was not how I felt physically after the surgery, but how I felt mentally. I had been a radio personality /Hip-Hop DJ for 15 years prior to the surgery and I enjoyed every minute of it. I continued to do it even after the surgery.  However, the experience of the surgery opened my eyes to how short and long life is at the same time. Being able to give a part of myself to someone else was an incredible feeling, and I wanted to do more. While I was in the hospital I was able to see the important roles that nurses play in the lives of their patients. So in the fall of 2012, I made the decision to change career paths and enroll in nursing school. I knew that this would give me the opportunity to connect with people who are suffering from renal disease and allow me to share my story with others. I enrolled in Suffolk Community College to take the necessary prerequisite courses needed in order to qualify for their nursing program. After 1.5 years of prerequisites, I began their 2-year nursing program. I will graduate the program on May 15th of this year.

I’ve had so many opportunities to reach people that may be considering living donation through the National Kidney Foundation. Once I reached out to let them know that I wanted to share my story, they were so responsive. For about 5 years now I have been working closely with them, speaking at various NKF workshops sharing my story as a past donor and kidney advocate. When NKF asked me to write about my journey and share it with the team at UAE, I did not hesitate. Although I can’t participate in this weekend’s UAE Healthy Kidney 10K Race, I thought it was important to help the runners understand where their donations go. The funds raised through events like these help patients like Will, and donors like myself, live healthier, longer lives. I encourage those who are considering living donation to consider their work life and personal life as there are many things that may need to be put on hold. All that aside, in the end it is a wonderful feeling to be able to help another human being in this way.

About Chris:

Christopher Helmut Melz lives in Huntington Station, NY, and stays
busy running his own print shop, specializing in T-Shirt screen printing, embroidery and other basic print needs.

 

 

Running For My Brother

By Sarah Culmo

Growing up, my father constantly suffered pain due to Polycystic Kidney Disease (PKD). As he got older, his condition worsened and his belly began to protrude because his kidneys were so full of cysts and pushed against his other organs. He was consistently in need of dialysis treatments, and it was very difficult to see the pain he was suffering.  

When I was about 12, I got a chilling phone call that my father was rushed to the hospital because his kidneys had failed. They say that annually, eight people per 1 million have kidney failure as a result of PKD, and unfortunately, my father was one of those 8. Very luckily, my dad’s brother was a perfect match and he so generously decided to donate one of his kidneys to my father. When my father’s kidneys were removed, they weighed close to 30 pounds due to the cysts. Ever since, my father has been able to do things he hadn’t been able to do in the past because of the pain. He is now very active and is able to enjoy activities again such as hiking and swimming, but most importantly, he is pain-free.  

I have two older siblings, a sister and a brother who were both diagnosed with PKD because of my father’s genetics. I, on the other hand, am the only child who is not affected by it. My sister’s condition is not too severe, but my brother is already showing signs that could unfortunately lead down the same path as my father’s condition. If he is hit in the wrong spot near his kidneys, he is in severe amounts of pain and has blood in his urine due to the cysts on his kidneys. My brother and I are very close and I can honestly say he’s one of my best friends. It kills me to think of him ever having to suffer what my father had suffered. However, we have been able to test that I am the most compatible to my brother if in the future he is in need of a transplant which means the absolute world to me. Seeing what my uncle did for my father was so incredible, and it’s safe to say that I would do the same for my brother in a heart beat. 

I have never participated in UAE Healthy Kidney 10K Race before, but once I saw it, there was no way I would turn down such a great opportunity to run for an amazing cause. I’m looking forward to running this race for my father, but also for my brother. Staying healthy is so important, especially for a donor, so I want to run to be sure that I’m donating the healthiest kidney I can to my brother if he is in need of it one day!

Thank you for taking the time to read my story. I’m looking forward to a fun race!

About Sarah:

I am currently registered to run in the UAE Healthy Kidney 10K coming up on May 14. I started running a little over a year ago and I was barely able to run a 5K without stopping. I began to fall in love with running and competed in my first half marathon last month by running in the NYC Half on March 20 and LOVED it! 

 

Why I Chose Living Donation

By Beth Bernstein

On August 26, 2015, my old friend from high school, Aron, posted a note on Facebook announcing that after 30 years with a successful kidney transplant, the kidney failed and he was heading to the hospital to go back on dialysis. I saw the post several hours later when it became stuck at the top of my newsfeed. I knew that Aron had a kidney transplant from a deceased donor when he was 17, but it had lasted so long—a testament to how well he’d taken care of it—that it hadn’t occurred to me that he would need another.

I’ve always had the donor sticker/imprint on my driver’s license but hadn’t considered being a living organ donor. I spent the next half hour researching it and, within that short time, I knew everything I needed to know about the testing procedures, the surgery, and recovery time. I knew that I would be able to live a normal, healthy life with one kidney. That transplant recipients have an increased chance of success with a living donor organ, that the kidney lasts longer, and that the effects are more immediate. Intuitively, I also knew that I would be a match for Aron. I called Aron’s mom, and with Aron still in the hospital fighting to recover from kidney failure, I began the application process.

Once the initial application was approved, I was assigned to a transplant team at UCLA, who called me with the good news each time I passed a test, and supported me each step of the way. Near the end of the process, RAND, my employer, helped make the short-term disability paperwork process easy. I received the final greenlight from UCLA on December 14^th. After talking with Aron, a videographer, about his work schedule, it seemed clear that scheduling the surgeries for the end of the year was the most beneficial to us both. The UCLA Transplant Team was instrumental in accommodating us and helping to make it happen.

On December 29^th—exactly four months after the process began—Aron and I, along with our loved ones, met at UCLA Medical Center and were quickly ushered into pre-op. Our rooms were side by side. We had a chance to talk and hug and take pictures, and then the nurse gave me something to relax. Even before the anesthesia, I was out! The next thing I remember is waking up in my hospital room post-op and receiving the good news: The surgeries had been a huge success! My kidney began working immediately in Aron, and all of his levels had returned to normal.

I am so grateful that I am blessed with good health and that I was able to help Aron improve his quality of life. I get excited when I see or hear him making plans for the future, and the future is looking very bright indeed. I would encourage anyone who is thinking about donating to just go for it! There are many resources available to guide and support you all along the way.

What You Can Do To Prevent the Spread of Infection at Your Dialysis Center

The Centers for Disease Control and Prevention (CDC) recently posted a health advisory for dialysis facilities. The CDC has received an increased number of reports of newly acquired hepatitis C virus (HCV) infection among patients on hemodialysis. They urge dialysis facilities to assess and improve their infection control practices.

A Lesson in Self Acceptance

By Krista Ciminera (Originally posted on www.teamlasercats.com)

Awhile ago I (Krista) watched the women’s field at a local cyclocross race, straddling a friend’s cyclocross bike so I could bike from spot to spot along the winding course. At one straight away, in which the women zipped by with speed, an older man who was spectating beside me turned to me, gave me a quick once over and asked, “Hey, how come you’re not in this race?” His big smile pressed down the corners of his eyes with grandfatherly glee and I responded, “Oh, I don’t want to race,” a half-truth that I let hesitantly slip out. I cringed for the ensuing, well-worn conversation that I knew was about to take place.

Generic Medications and Your Kidney Transplant

Dr. Matthew Cooper

By Matthew Cooper, MD, Director of Kidney and Pancreas Transplantation at Medstar Georgetown Transplant Institute.

If you have received a transplant, you’ve probably had this discussion with your transplant team, “How will you pay for your immunosuppressive medications?”

It’s an even more important question now as a new study, funded by the National Kidney Foundation, found that many insurance plans in the healthcare exchange marketplace are pushing the cost of immunosuppressive medications to patients. This means many patients may pay the out-of-pocket maximum for their medications, up to $6,200 in 2015, and $6,850 in 2016.

Happy (Kidney-Friendly) Thanksgiving

By Heather Shenk

Many holiday celebrations focus on a meal, but none more so than Thanksgiving. For those whose health conditions require them to closely monitor their diet, the holiday can be stressful. This sentiment is especially true for dialysis patients. Although some patients may want to use Thanksgiving as an excuse to take a break from their diet, the reality is that any time certain foods are eaten in large enough quantities (holiday or not), they could be jeopardizing his or her health.

There are ways to alter a Thanksgiving feast so that those on dialysis can partake in the festivities. Whether you are a dialysis patient or have a dialysis patient attending your holiday meal, you might find the information below can help make the day more enjoyable for all.

Why Shared Decision Making Matters for Dialysis Patients

By Caroline Wilkie

Caroline Wilkie

If you are on dialysis, or have been on dialysis, you have benefited from the National Kidney Foundation’s Kidney Disease Outcomes Quality Initiative (KDOQI) guidelines. These are basically a series of best practices for diagnosing and managing kidney disease at all stages.

Now NKF has released an update to KDOQI’s guidelines for hemodialysis. This update is important to patients because it increases emphasis on shared patient-physician decision making when it comes to our dialysis care. Shared decision making is the collaborative process that allows us to work with our healthcare providers to make dialysis care decisions together. It takes into account not only the best scientific evidence available, but our values and preferences as well.

The Connection Between EPO and Our Kidneys

You may have heard the term EPO in the news related to athletes and drug use to enhance performance. ErythroPOietin (EPO), a hormone produced by the kidneys, helps us to make red blood cells. If we don’t have enough red blood cells, then we don’t get enough oxygen delivered to important areas such as the heart, lungs, and muscle. Because of EPO’s role in making red blood cells to increase oxygen carrying capacity in the body, some athletes use EPO injections to improve physical performance. But aside from being disgraced for cheating, such athletes put themselves at great risk for health problems. There are ways to train the body to better utilize the red blood cells’ oxygen carrying capacity, such as training at higher altitudes. This type of training must be done with expert guidance.