Humans of Kidneyville

Name: Kyra Mizer-Lark
Cause of Kidney Failure: Pyelonephritis, which ultimately ended in End Stage Renal Disease
Number of years with kidney failure: 22 years
Transplant: Yes. I have had two transplants. They were both from cadaver donors. I received the first one on January 18^th, 1995. It rejected a year later. The second one was on December 27^th, 1999, and it rejected September 2012. I am currently on dialysis.
Advice for people without kidney failure: The advice that I have for people living without kidney disease is to take care of themselves by living as healthy as possible and to get regular checkups concerning their blood pressure, which is one of the leading causes of kidney disease, especially for African Americans.
Advice for someone who has been newly diagnosed with kidney failure: My advice for people who have been newly diagnosed with kidney disease is that, they should educate themselves about the different options for treatment including peritoneal dialysis, hemo dialysis, and home hemodialysis. I urge them to consult with a dietician for the best diet for them and to exercise as frequently as possible as that would help keep them as healthy as possible and weight the options of them getting on the transplant list.
Would you say there’s Hope after diagnosis? Yes. It is important to know that kidney disease is not a death sentence, and it is possible to live a long healthy life on dialysis. There is extreme hope after diagnosis. So do kidney disease, don’t let kidney disease do you.
What’s the most difficult aspect of living with kidney disease? The most difficult aspect of living with kidney disease is some of the side effects from the disease and dialysis. Both can wear a person down sometimes, as well as the time spent doing dialysis.
How important is having a support system? Having a support system is a very important part of being a kidney disease patient. We all need someone during these trying times of our lives. Overall, we are all warriors, fighting the GOOD fight and champions doing our best to cross the finish line.

Name: Maurine Krentz
Cause of Kidney Failure: Undetermined
Age when kidneys failed/diagnosed: 47
Number of years with kidney failure: 15 years
Transplant? Yes
Advice for people without kidney failure: Health Maintenance
Advice for someone who has been newly diagnosed with kidney failure: Research and Learn
Would you say there’s Hope after diagnosis? Yes
What’s the most difficult aspect of living with kidney disease? Living with a suppressed immune system, and having to be germ-free.
How important is having a support system? Extremely important

Name: Leslie Taylor-Simo
Age when kidneys failed/diagnosed: 11
Cause of Kidney Failure:ANCA Positive Vasculitis  I am still pissed off my pediatrician did not give me a blood test. I had to go through six months of chemo and when my ANCA flipped to negative, I was thirteen.
Number of years with kidney failure: 26. I did peritoneal dialysis for a year and a half.
Transplant: Yes. I had my first transplant, through a living donor; my mom, at age 13. Due to a chronic rejection, I went back on hemodialysis on March 7^th 2000. My second transplant received was through a deceased donor kidney on August 1^st, 2000. It was an antigen mismatch, and it rejected immediately. I underwent plasma pheresis and hemodialysis for a month, and the kidney worked for 3 years. I went back to hemodialysis in November, 2003. I received a third transplant on July 21^st 2005, through another deceased donor. That lasted 4 days short of ten years. It rejected because I became allergic to Myfortic. I am currently on dialysis for the fourth time. I do the home hemodialysis, and have been listed again for a fourth kidney.
Advice for people without kidney failure: Kidney disease is a silent disease; do not dismiss it. Become an organ donor.
Advice for someone who has been newly diagnosed with kidney failure: Keep a positive attitude, and always take care of yourself.
Would you say there’s Hope after diagnosis? There’s always hope. Always. Mental health is as important as physical health.
What’s the most difficult aspect of living with kidney disease? The most difficult aspect is difficulty in travel and medical costs.
How important is having a support system? Support systems are for sure important. Every now and then, I feel defective, but my friends, family, and husband don’t treat me like I have kidney disease…unless I need to talk. Most are empathetic, or at least, sympathetic.

Name: Amie Rooze
Age when kidneys failed/diagnosed: 31. I was diagnosed November 20^th, 2014 with Stage 3 Chronic Kidney Disease. I am currently at Stage 4.
Cause of Kidney Failure: Morbid Obesity. Another contributing factor is that when I was growing inside my mother, one of my kidneys developed in an incorrect spot…in my pelvis. Doctors aren’t sure when exactly my kidneys started to fail, but I have somewhat of an idea. When I was 21, I received my CDL class A. I was living in Henderson, KY at the time, but doing a job orientation in Tulsa, OK. During my DOT physical, the doctor notice I had protein in my urine and decided to get me tested to see what was causing it. I ended up being misdiagnosed with a horseshoe kidney. A horseshoe kidney is when both kidneys fuse together. The doctor said the fusion was the cause of them spilling protein. Hence, for ten years, whenever I had to give urine sample, and the doctors noticed protein, I would tell them that I had a horseshoe kidney, and that would be it.
Transplant: As of right now, I haven’t had a transplant. I am working on losing weight, so I can get on the list.
Advice for people without kidney failure: Protect your kidneys as much as possible. Stay away from medicines like Advil, Aleve, Ibuprofen, Motrin, etc. These medicines are called NSAIDS and will damage your kidneys. Once you’ve damaged them, there’s no undoing it. Make sure you get regular checkups and your yearly labs are done. Stay healthy. Had I known that being overweight would have caused my kidneys to fail, I would have dropped the weight.

Advice for someone who has been newly diagnosed with kidney failure: You are going to have good days and bad days. It’s okay to cry. It’s okay to get mad, and think ‘why me’. Know that there’s a reason WHY you got kidney disease and it’s because we are warriors. We are strong, and we can overcome this. Be your own advocate. Take a kidney smart class. Find a nephrologist who will be there for you and listen to them. Its ok to ask questions, and it’s okay to be tired and not wash those dishes in the sink because you don’t have the energy.
Would you say there’s Hope after diagnosis? There is hope after diagnosis. How you control YOUR kidney disease is up to YOU.
What’s the most difficult aspect of living with kidney disease? The hardest part of living with kidney disease is the diet. I miss eating my favorite foods like greasy cheeseburgers and loaded French fries…but it’s my diet that got me here.
How important is having a support system? You definitely need to surround yourself with some great friends; and I am not talking about a pint of Ben and Jerrys. Join support groups. There’s some on Facebook. Reach out to those who are also battling kidney disease. You are definitely going to need some strong friends to wipe away your tears, listen to you vent, and maybe even have that friend donate their spare kidney. If you ever need a friend, I am here. Just shoot me a message, and I’ll be that friend.

Name: Jessica Frysz
Age when kidneys failed/diagnosed: 11 months old.
Cause of Kidney Failure:Atypical Hemolytic Uremic Syndrome
Transplant: Currently not transplanted, awaiting transplant.
Advice for people without kidney failure: My advice for people without kidney failure but who know there is a history of it in their family is to get tested for it early. If no history exists, cherish your kidneys; keep them working as long as possible.
Advice for someone who has been newly diagnosed with kidney failure: For newly diagnosed patients, don’t be afraid to ask questions; don’t be afraid to ask questions about your health. Advocate for yourself when it comes to your health and be as self-sufficient as you can. Dialysis does not mean you have a death sentence; you can do what you want to do, as long as you have the determination to do so.
Would you say there’s Hope after diagnosis? There is hope after diagnosis. I am living proof of that. I have been doing this for 27 years and my birthday just past. Prayer, I will admit has allowed me to stay here on earth. I have had some days where I didn’t believe I would see life without dialysis, because I have seen so many patients get their kidneys before me.
What’s the most difficult aspect of living with kidney disease? The most difficult aspect about living with kidney disease for so long is that it causes scheduling restrictions, which causes problems with trying to find work. Dating can be difficult too, because guys don’t understand the intensity of the situation and often times can’t handle it.
How important is having a support system? To have a good support system while going through kidney disease is vital. Without a good support system, this disease can overwhelm your life and take over. Support such as a fellow patient can help, but family is important most of all. You can choose your friends, and friends come and go, but family will be there no matter what.

Name: Jennifer Gloede
Age when kidneys failed/diagnosis: 35. I learned that my lab results had showed that my kidneys were spilling protein, and their function had decreased.
Cause of Kidney Failure: Type 1 Diabetes
Number of years with kidney failure: I have been living with kidney disease for approximately 8 years.
Transplant: No. In August of 2015, I was listed for a kidney and pancreas transplant.
Advice for people without kidney failure: My advice for people without kidney failure is to live healthy. If you are diabetic, take care of it. Take advantage of having energy and spend it on family and friends.
Advice for someone who has been newly diagnosed with kidney failure: I would tell someone just diagnosed with kidney failure the exact same advice. Live as healthy as you can, Make sure to follow the advice of your doctor, and spend your energy and time with family and friends. Housework can wait.
Would you say there’s Hope after diagnosis? I have a lot of hope. There is no other choice. I go on for my kids and husband and other family. Being a part of some Facebook support groups has also helped because I get to meet others in the same situation as I am, and I see their hopes come true, and watch them thrive after transplant.
What’s the most difficult aspect of living with kidney disease? The most difficult aspect of this disease for me is having such little energy, and not being able to be as involved with my kids and husband. I don’t even have the energy to walk my dog or go to the mall anymore. It’s a chore just to get up, shower, and put my makeup on.
How important is having a support system? Having a support system is imperative. I can’t do what I used to be able to do, and having people support me not only includes them helping me do those things, they give me encouragement and remind me that I have 4 kids that need me to fight. You could follow Jennifer’s journey at https://m.facebook.com/gloedekidneyjourney/

Name: Cheryl McQueen-Milliner
Age when kidneys failed/diagnosis: 42 years old,
Cause of Kidney Failure: High Blood Pressure
Number of years with kidney failure: 11 years
Transplant: I was on dialysis for 5 years and received a kidney transplant that lasted 41/2 years. Unfortunately, the transplant failed, and I have been back on dialysis since July 2015. I do it at home with a nurse 5 days a week, for 21/2 hours.
Advice for people without kidney failure: Keep your blood pressure and diabetes under control, since those are the leading factors that cause End Stage Renal Disease.
Advice for someone who has been newly diagnosed with kidney failure: It is not the end of the world. You can live a long productive life with kidney disease if you follow your doctor’s orders and dialysis regime.
Would you say there’s Hope after diagnosis? YES, there is hope after dialysis. I met my husband in dialysis, but he passed recentlyL. I travel to visit family and friends to keep me going. As long as there is Life, there is hope.
What’s the most difficult aspect of living with kidney disease? The most difficult aspect of dialysis is the fluid restrictions, the long periods of sitting, the effects of low blood pressure, and the exhaustion.
How important is having a support system? It is extremely important to have a support system to listen to you vent, to bring food (I can’t cook), check on you, pray with you, and laugh with you.

Name: Tyreena Phillips
Age when kidneys failed/diagnosis: 21 years of age
Cause of Kidney Failure: End Stage Renal Disease, Focal Glomerularitis
Number of years with kidney failure: 12 years
Transplant: Yes. On September 18^th 2014
Advice for people without kidney failure: Never give up. Keep the faith.
Advice for someone who has been newly diagnosed with kidney failure: It is nothing to be ashamed of; you are never alone.
What is Hope to you? Hope to me means you are not alone and your time is coming.

Name: Rosa Ochoa
Age when kidneys failed/diagnosis: 41 years old
Cause of Kidney Failure: Lupus
Number of years with kidney failure: I have been on dialysis for 41/2 years.
Transplant: Not yet. I am still waiting for my angel to come my way.
Advice for people without kidney failure: I advise people without kidney failure to listen to their body, get regular checkups and eat healthy.
Advice for someone who has been newly diagnosed with kidney failure: Get regular checkups with their cardiologist. I had a heart attack at 46 years old, four months ago now, and I have high blood pressure, as well as a leak in my heart. I have to take a lot of medicines. Make sure to care for and manage your heart problems.
Would you say there’s Hope after diagnosis? Yes there is hope after diagnosis. I am on the transplant wait list.
What’s the most difficult aspect of living with kidney disease? The most difficult aspect of living with kidney failure is being tired all the time and not spending enough time with my two beautiful daughters that need me the most right now. One of them is nine, and the other is 13. We used to do a lot of sports and activities together, but not anymore. I miss that the most.How important is having a support system? It is very important to have a support system. I have a very good one with my family. I do dialysis at home with the help of my husband. We went for training for three weeks, and now I stick in my own needles. I feel so much better now doing it from home. I do it every day except for Fridays.
Last thoughts: Thank you very much for giving me this opportunity, I hope my story will help somebody.