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Robin H: End-Stage Renal Disease (ESRD)/Transplant Recipient

The disease was hitting me fast and hard.

Prism for Robin by Sherrill Knaggs, ISN Artist I have been going through the pain of kidney failure for four years now. In this essay I will tell you my story of all I went through for this disease; all the surgeries I had to have, all the doctors I now have to keep up with, and all the pain I had to deal with. I hope by reading this you will come to understand what a person deals with when having to go through kidney failure.

It all started on October 30, 2000. I was sent into the lab for a routine blood test. After I had my blood drawn that day, all we were waiting for was the results. The next day, Halloween to be exact, the lab called. The nurse that had called me told me I was in renal failure. I was terrified. I had no idea what renal failure was, or what it was affecting. All I knew was I had to get to the emergency room (ER) and fast.

I quickly hung up with the nurse and called my mom. I told her what the nurse had said. She immediately called her supervisor so she could get off work to come pick me up. Within fifteen minutes my mother had come to take me to the ER. By this time, I was so weak I could barely walk down the stairs to get to the car. The disease was hitting me fast and hard.

When my mother and I had arrived at the ER, I had to sit and wait to be admitted. After waiting about twenty minutes I was seen by a doctor and was prepped for immediate perma-cath surgery. A perma-cath is a tube that the doctors put up into your jugular vein so dialysis can be done. As soon as I was out of surgery, immediate dialysis was being done on me. The first three days I was in the intensive care unit because my condition was so severe. The doctors told my mother that if I had gotten to the ER any later I would have been dead.

As time went by I started to get better. I spent a total of two weeks in the hospital, but it was not the last stay I would have. Having routine dialysis treatments and check ups I was starting to feel myself again. But in the back of my mind I knew I would never be the real me again. I knew there would be many things in my life I would have to watch out for. I would realize this as the next four years would go by.

There are three different ways to do dialysis. I have tried them all. The first I tried was hemodialysis. This is where you are hooked up to a machine and have to sit in a chair for four hours. While you sit in the chair the machine cleanses your blood. This happens by either a tube in the forearm or a tube up in the jugular vein in the neck. I tried this type of dialysis for a year. I have had eight perma-caths in my chest and a tube in my arm that had to be reopened six times because it would stop working.

The third way is called peritoneal dialysis. This type of dialysis is where a tube is put into the lower abdominal area behind the peritoneal wall. I tried this for only six months. I had to have the first tube taken out because I developed a hole in my abdominal wall. I had a second tube put in after the hole healed. I had to have this one taken out because it was not working for me anymore. I had to go back on hemodialysis. By this time I was about to give up on life itself.

I was so depressed and was thinking about suicide because I could not take the surgeries and the pain anymore. I had four people tested to be a match for a kidney transplant for me during all this time. My mom had even tested. She was not a match for me. The doctors told me that my mom could do it but it would be risking both our lives. So we decided to wait a little longer. April 2003 was the year my waiting had ended.

A friend of my mother was tested to be a match for me, and she matched. The day I found out I jumped for joy. It was my chance to live again. I felt like a weight had been lifted off my shoulders. I went to all my doctors to tell them I could not wait. I went to the dialysis unit to tell them I was not going to be coming back for a long time.

The day of the surgery was scary. They had me walk into the operating room. I was wide awake so I saw all the tools they were going to use. My nerves began to kick in more than I had ever felt them before. I hopped up onto the operating table and let the nurses take over. Soon I was fast asleep. All I remember is waking up to my mom saying I actually looked like a person, not a ghost.

It took awhile for me to recover but I was up and walking within three days of surgery. I was sore, but I was feeling so good. The medications they had me on were tremendous, so were the side effects. I was taking almost forty pills a day. I am not one for taking pills but I had to get used to it. There were so many patients in the hospital that the nurses really kept busy. My mom came and saw me everyday. She was my nurse. My mother was the one that took care of me better than the nurses did. I can understand the nurses being a little too busy, since it was a big hospital. Imagine taking Washoe Medical Center and multiplying it by five---it was that big.

I spent two very long weeks in the hospital. By the time I was released I was walking great and doing very well. I amazed everyone with my speedy recovery. Even though when I got home I was still on bed rest, at least I felt alive and not married to a dialysis machine.

It has been almost two years now since my kidney transplant. I am doing better than ever. I am down to fourteen pills a day. I am in college studying nursing, and living my life like I have wanted to live it. I feel that the only things that kept me alive and hanging in there through my tough times were my friends and my church. Going through all the surgeries, my depression, and hard time has made me a stronger person. I do get tired now and then, but it is because of my medication.

My goal in life is to be a nurse and a motivational speaker. I want people to benefit through my experiences and hard times. That way they can see that even though life throws you a curve ball you can always catch it and turn it around.

I hope you have enjoyed reading this story about what I have been through. Always remember to tell the ones that matter most in your life that you love them because you never know when that curve ball is going to be thrown. When it is, always know that you can overcome anything that is thrown your way.

To Contact the Author

Email: [email protected]
Story edited 10-08-04
Storyh posted 10-22-04 SLE

ISN Senior Artist: Sherrill Knaggs
Story Editor: Judith Devlin
Peritoneal Dialysis
Renal Failure

ISN Artist: Sherrill Knaggs (In Loving Memory)

Sherrill KnaggsSherrill Knaggs, ISN Artist, created the digital photo to illustrate the story on this page. Sherrill lived in New Zealand. Her story was featured in ISN's book, Voices of Scleroderma Volume 2.

ISN Story Editor: Judith Thompson Devlin

Photo of JudithJudith Thompson Devlin is the ISN Story Editor for this story. She is also lead editor of the ISN's wonderful Voices of Scleroderma book series!

Go to Robin M: Daughter with Linear Scleroderma En Coup De Sabre

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