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My name is Jeff , and I am a 43-year old dialysis patient. I have been on dialysis since October 2006, after watching my kidneys fail over the past 8 years or so from complications of diabetes. (I have been diabetic for about 20 years.) The kidney disease has been around longer than 8 years, but was just one more item in a list of ailments. Eventually the kidney disease got it’s way, and pushed through to the top of the list. This past October, after feeling foggy and disoriented for several months, I finally said “let’s go” to my nephrologist. I had no idea what a commitment dialysis would be! I am a big guy – 6′ 7″ and (at the time) about 330 pounds. Dialysis for me meant 3 times a week for 4 to 5 hours! That’s a part time job! I had heard early on about home dialysis, and started asking about it right away. By mid-November I was in the home hemo training program, and I now dialyze at home 4 days a week for 3 hours a day. Still a big comm itment, but easier on my schedule and in my home. My hemo training nurses, Angie and Theresa from DaVita Home Hemo, told me about you and your programs when I said I wanted to find some ways to constructively exercise. I have had ongoing problems with my feet, and have had several surgeries over the past few years to try and repair some birth defects in my feet that were now causing problems. (In short, I walk on the “outside” edges of my feet. My left foot had a bony spur at the front of the 5th metatarsal bone (the bone behind the little toe.) Since I walk on the outside edges of my feet, instead of the bottom of my feet, I was walking right on that bony spur, which caused a wound to form on the foot that didn’t want to heal. That has required 5 surgeries to correct, and now the left foot is in good shape. Unfortunately, this past summer, the right foot got involved. This time it was at the head of the 5th metatarsal, that bony bump about 2/3rds of the way back on the little toe side of your foot. A wound formed there in July that I have been dealing with since. In September it got infected, and I was hospitalized for nearly 2 weeks to clean it out and get me over the infection. This January it happened again, and I was very afraid I would lose the entire foot, since the infection had gotten into the bone. Thankfully I have a very skilled surgeon who did not overreact, and instead of amputating the foot (severe overreaction) or amputating the little toe and everything in back of it, he was able to go in and take about an inch and a half of the 5th metatarsal, from that bony bump forward. So I still have a foot, and it still has five toes! I tell you all of this so you can realize some of the challenges I face in starting a physical fitness program. I can’t use my feet/legs to any great extent at the moment (I am supposed to be in a wheelchair, something I use about 80% of the time.) Because of dialysis, I have to be careful about using my arms – especially right after dialys is! But I have been trying to do what I can at home – leg raises, modified crunches, etc. In the past 6 months I have lost about 60 pounds, primarily because of illness, but I’ll take the weight loss. I’m just not eager to lose it again the same way! In the past two years, medical bills and copays, along with other associated expenses related to my kidney disease and diabetes, have run me through my savings. I am still trying to work full time, mainly because I don’t want to be without health insurance, but also because I need to continue to contribute and do something. The times that I have been hospitalized or at home recuperating have made me stir-crazy. I really want to add a fitness program back in my life. I know that I won’t be able to do much lower body work at the moment, but am looking forward to the time when my right foot heals, and I am able to resume walking and using the elliptical machine. I could really use some help, both motivationally and also technically, in working out. That is where I hope your foundation – specifically your mother’s memorial foundation – can help me. In looking through your web site, however, I couldn’t find a way to apply for the fitness or educational grants. What do I need to do? Is there an application process, or is my request considered my application? What would the fitness grant cover? It appears that a trainer as well as either home equipment or health club dues would be covered, is that right? I have a roommate who acts as a personal care attendant for me. Especially after foot surgery, when I am not supposed to walk, he is most helpful in getting things or helping me to transfer or move around. Would the fitness grant cover a family membership to a health club, so that he could accompany me? I know I have a lot of questions, and I look forward to your reply. It is very exciting to know that other dialysis patients have gone on to compete as triatheletes, it certainly gives me hope that I can at least tone up this flabby body of mine! Thank you for your time and consideration, and I look forward to hearing from you soon. Take care, be well, and keep up the good work!

Clyde is our second fitness grant recipient.

FROM A MOTHERS PERSPECTIVE – Clyde’s Story

This is a story about my son Clyde. Clyde is 17 years old and attends Roosevelt High School in South Minneapolis, MN. Clyde will be graduating this year in June of 2005. Clyde was born at Abbott Hospital in Minneapolis, MN on July 13, 1987.

When Clyde was born the doctor gave him 24 hours to live, but God gave him life! Clyde had several things wrong with him. Clyde’s biggest problem was that he had a urinary track infection which caused damage to his kidneys and a blockage in his urethra. I remember being wheeled into a room where Clyde was laying after his birth and was told that he was very sick and was not going to live. I can’t remember my first impulse, I was numb. I was only 26 years old and was all alone when given this information. All I could feel was compassion for my son laying on that hospital bed with his eyes half open and his breathing very hard. I had never experienced losing a child after birth so all I could do was try to keep myself calm. I was taught as a child to always pray and though I was not acknowledging God fully during this time, God spared my son’s life through his doctors. All the doctors that shared a part of my son’s life were wonderful people and they did an excellent job by the help of the Lord.

Clyde’s first surgery was a vestocostomy, which was a hole in his navel so that he could urinate from the vesto. Also he was put on a respirator machine for a month before being released from the hospital. After six months with a vesto, he was strong enough to have the major surgery to remove the blockage in his urinary track. His surgery was a success, but there was still the urinary track infection which had already claimed one of Clyde’s kidneys before he was 1 years old.

Clyde had over 100 surgeries before the age of twelve. At the age of 12 he went on dialysis for about six months and later on that year he had a kidney transplant. After four years the kidney failed and Clyde has been on dialysis ever since. Clyde does not like to be on dialysis, but has accepted the fact that he is different.

Clyde is funny, he loves sports, and he loves the Lord. He loves his family, and his family loves him. We are a close knit family and we just take a day at a time depending on Jesus. We have had some frightening moments, like the kidney transplant surgery, and when it failed, but we’ve learned to put all trust in God. In God we trust, so Clyde is not alone. When he feels pain, we feel pain. When he hurts, we hurt. We draw our strength from one another. We always laugh and try to keep joy on the inside of our being. We love each others company as a family. When Clyde gets sick and has to go to the hospital, we all go with him and stay all night and day if we have to. We are with him and God is with us.

David is our first fitness grant recipient.

FROM A MOTHERS PERSPECTIVE – David’s Story

David is 15 years old and attends Chaska High School. He lives with his Mom Dad and sister Paige. I would like to give you a very brief history of David’s illness. When David was 22 months old, we noticed that his
body was very swollen. We took him to the hospital and after some tests, it was determined that he had a kidney disease.

The diagnosis was focal segmental glomerular sclerosis (FSGS). FSGS is a disease where the immune system attacks his kidneys. There is no cure and little is known about how it is contracted. FSGS also has a significant recurrence rate in a transplanted kidney. David was put on many different meds to try to suppress his immune system and slow the progression of the disease. The doctors tried everything they could. He even went through chemotherapy twice.

The drugs did slow down the progression, but he was a suffered severe side effect from them. He was on high doses of prednisone for many years. This caused him to gain weight. He was always 30 to even 50 pounds over weight. He struggled with everyday activities, but still tried to be normal. He tried to play sports, but would get very tired. David’s life at this time was very crazy. He was in and out of the hospital almost on a monthly basis. His blood pressure would soar, because his body was fluid overloaded. It was getting harder and harder for him to live a normal life. He would become so swollen that he could not walk. After nine years of this, things finally came to a head.

One night he could not breathe, he was put in the intensive care unit and placed on a respirator. The next day was his first dialysis treatment. After three days of dialysis, he lost 50 pounds of fluid. What we thought was fat, was all fluid. His body now looked like a bag of bones. He began three times a week dialysis treatments and slowly began to gain strength. It was a rough start, but eventually he got used to the fluid and diet restrictions. After 6 months, he had a kidney transplant from his father. The kidney worked at first, but then the FSGS recurred and it stopped after 24 hours. It never did start working and David had to go back on dialysis.

That was four years ago. Throughout all this, David has stayed in school and kept his spirits up. It is a continuous struggle, but is learning that he still can accomplish anything he wants, it just may be a little harder than for most.

An update from David

When I first started training with Jamie,I did not have much strength. It was very hard and sometimes I would get dizzy and weak. Each week I started to get stronger. I feel more comfortable with lifting weights.
I still don’t like lunges! It has been a struggle for me to keep my energy up. Since I go to dialysis three days a week and school the rest of the time,I am finding it hard to keep up my energy. I know that it is going to take me longer than most and I am ok with that. I love to flex my new muscles and am working on a six pack! I think once school is done and I can work out in the morning that it will be a lot easier for me. When I first started, my goal was to play basketball for Chaska high school. I thought that was my goal,but as I got into the training,I realized that wasn’t really my goal. My new goal is to first get stronger so I can try all different kinds of sports and activities. Since I have never really been able to play any sports growing up, really want to be able to feel comfortable playing and participating with my friends. My Mom says that she has seen me become more confident since I began this,and to her that is the most important benefit.

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Kathy received a one year gym membership to the YMCA from the foundation.

In 1998 I was diagnosed with Lupus. I had my first child in 1999. Then became pregnant in 2000, In 2001 started having a Lupus flare in my kidneys which made my doctor take my son out early, he weighed 1lb. 11oz. when he was born. I was put on chemotherapy for six months. The chemotherapy worked only 6 months then I was put on dialysis for another 6 months. After the six months of dialysis I received a kidney from my mother which was transplanted in 2002. The kidney lasted from 2002 -2006. It started to fail in 2006 and that is when I began dialysis again. It has been a little over a year that I have been on dialysis, this time. Now I look forward to a new kidney. I have many things I would like to do with my life. Hopefully, this grant will help me accomplish my goals. Thank you!!

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Siobhana received a one year gym membership from the foundation.

I have had kidney failure since 1998. I have done in center hemo-dialysis, peritoneal dialysis, received a transplant and now do home-hemo-dialysis. After I received my transplant they had to take it back out about a year later because it gave me a fairly rare form of cancer. Due to the type of cancer I have to make sure my immune system is high all the time, or it could recur …so having a fitness grant to help boost my overall health would be great. I am married and have 2 children my son is 15 and my daughter is 12. They all help a great deal doing the in home dialysis. They are fully trained and capable of doing all the aspects of the dialysis technician (putting in needles, setting up the machine, monitoring, ect)

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Shaketa received a stationary bike from the foundation.

My name is Shaketa Young and I started dialysis when I was 16 years old, it is hard doing this because even when I have free time I don’t do any thing. I got a transplant in 2005 but it failed so I had to go back on dialysis. I think that this will be helping me out because it would be here for me to use.