My Journey Through Kidney Failure and Transplantation
Living with Renal Failure
Being diagnosed with end stage renal disease changed life as I knew it. I was no longer a young teenager gushing over boys, having sleepovers and learning how to drive. Instead, I was clinging to life with every ounce of my being.
A diagnosis of chronic illness is a tough road to travel for anyone, let alone a kid who'd rarely caught a cold. I had to leave school for the homebound educational program and most of my so-called friends disappeared.
Through it all, I refused to let ESRD define who I am because I knew I was strong enough to overcome this challenge. Having renal failure has made me a better person by teaching me to appreciate what I have and never take life for granted.
I was born with calcium deposits around both of my kidneys. I don't blame the doctors for telling my parents it would never affect my health or become a future problem. In 1980, medicine wasn't what it is today and no one really understood the complexity of my situation.
Despite regular check-ups throughout my life, 5 months after turning 15, my kidneys stopped working. Upon being admitted into the hospital, we were told my left kidney had 21 stones and my right had 28. My doctors did everything they could to revive them but it was too late. I spent 2 very long weeks in the hospital before being released. But I wasn't free, I had to return to the hospital 3 days per week.
Since my kidney failure came on so suddenly, there was little time to react. At such a tender young age, it's not easy to process what's happening to your body. l was forced to adapt and ultimately accept my fate.
April is National Donate Life Month
Registering to be an organ donor is one of the greatest gifts you can leave behind. Sign your organ donor card, driver's license and letting your family know of your wishes. You have the power to make a difference in the lives of so many people. An average of 18 people die each die without the organ they desperately need.
As you read this, a mother is preparing herself for the death of her child who needs a new heart. A teenager is having his first dialysis treatment and wondering if his life will ever be normal again. A man wonders if this is the last time he will play with his grandchildren while his wife cries at the thought of life without him.
Over 112,000 (that's one hundred twelve thousand!) men, women and children are awaiting a lifesaving organ. A new person joins them every 10 minutes.
In America, only 30% of people know the steps to becoming an organ donor even though 90% claim to support organ and tissue donation.
If you are interested in knowing more, please visit these Hubs:
What Does a Kidney Do?
Kidneys are about the size of your fist and shaped like a bean. The are located in your back with on each side of your spine.
Kidneys are your body's filters. They clean your blood of impurities and make urine to remove unwanted waste from your body. They are essential in regulating your blood pressure.
So, that's what a kidney does!
For more information about kidneys and what they do visit the National Kidney Foundation.
From 1996 to 1997
A catheter (port) was inserted into my aorta (the largest artery in the body) with two small tubes exiting on the right side of my upper chest. This port became my lifeline for the next 3 months. The tubes worked simultaneously with one tube removing blood from my body where it was cleansed inside a dialysis machine. The 2nd tube returned the newly clean blood back to my body.
It was very important to keep the tubes very clean to reduce the chance of infection. The exit site was always covered with a tight clear tape called tegaderm and the ends of the tubes were capped.
Dialysis was a fairly simple but annoying process for me. My treatments were scheduled 3 days per week for 4 hours at a time. I dreaded Tuesday, Thursday and Saturday. It was very draining on my body, I would sleep for about 24 hours after a treatment.
If my memory serves me correctly, there were only about 8 machines and chairs but they were always filled with kids going through the exact same thing. Spending as much time as I did in the unit, I got to know everyone as the schedules are usually set with the same people.
In the year I spent there, I saw a kids begin new lives with brand new kidneys. The darker side also existed, I watched as children, including babies lost their battle with the disease. 17 years later, it still haunts me.
On a positive note:
I was lucky to receive my treatments at Tampa General Hospital as a pediatric patient. Dr. Campos was the most amazing and understanding doctor I could have ever wished for. The dialysis nurses from 1996 to 1997 were also great people. I honestly don't think I could do their job.
My vascular access (catheter) site was protected from harmful bacteria. Tegaderm was ideal because I was able to monitor my exit wound and make sure I stayed infection free. Tegaderm is breathable and waterproof dressing.
My Graft is Placed
A few months later, my doctors decided it was time to implant a graft into my arm. A graft is a synthetic tube placed under the skin, usually in the arm. The graft forms an artificial vein in which dialysis needles are placed. At that time, most grafts were placed between your wrist and elbow. Many people were left with horrible looking scars and lumps.
Being in my vanity stage, I begged my doctor to place mine in my upper arm, this way it could be covered and not easily seen. I guess I was convincing enough because my implantation surgery was scheduled soon after.
It takes a little bit of time for your arm to heal enough to begin using the newly placed graft. In my case, it took a couple of weeks.
I was not prepared for the size of the needles placed into my arm. I am not sure of the exact gauge used for me but most needles were a gauge 16. If you've ever donated blood, you know how large these needles are!
At first, as you can probably imagine, it was quite painful and brought several tears to my eyes. As scar tissue built up, the pain eased. It wasn't pleasant but it was tolerable.
After treatment is completed, pressure must be held over the site. Once, my armed looked like it was finished bleeding, it wasn't. Since blood pumps at a fast rate of speed, my blood shot across the room like a squirt gun. Luckily, no one was on the other side!
You also have to keep an eye on the area. If it starts to bleed while away from the unit, pressure must be applied quickly to stop the bleeding. If necessary, seek medical treatment to avoid losing too much blood.
Every March is National Kidney Month
Take Charge of Your Health!
Be sure to make regular appointments with your doctor to access your body's needs. Keeping your body healthy will lower your risks of developing kidney disease, high blood pressure and diabetes.
Kidneys work a full-time 24/7 job to clean toxins from your body. They Take care of them and they will do their best to continue taking care of you!
What is a Kidney Transplant
People who need a kidney transplant have suffered through kidney failure, which may be a result of diabetes, high blood pressure or many other diseases. If left untreated, kidney failure is fatal.
Most people are born with two health kidneys but you can survive with only one. Because of this, many people have opted to become living kidney donors to help save the life of a family member or friend. Some kidney donors have even helped strangers.
In the U.S., there are more than 83,000 people waiting for a kidney transplant. The average amount of time that someone waits for a kidney transplant is five years.
Register to be an Organ Donor
- organdonor.gov | State Organ and Tissue Donor Registries
Find your state and sign up to be an organ donor.
A Transplant Story
Soon after dialysis was started, my doctors began speaking about kidney transplantation. Neither one of my parents hesitated to be tested as potential donors. The process for being a living donor is very thorough, read more about it here: Save a Life by Being a Living Organ Donor
My Dad was chosen because his kidney was stronger and he was a non-smoker. As much as my Mom wanted to donate, she smoked cigarettes and was overweight.
Over the course of several months, My Dad and I were both evaluated numerous times and given psychological exams to ensure we were ready. My Dad was very healthy and hated seeing his only daughter suffer on a daily basis. He was more than ready.
The surgery date was set for April 4, 1997. At first I was very excited and couldn't wait to be off of the dialysis machine. As the day drew closer..and closer, my excitement turned into fear.
In the days leading up to April 4th, my dialysis treatments became hard for me to handle. I was being given Valium before and during treatments to keep me calm. At that point, It wasn't much of a help, I was very agitated and restless.
When surgery day arrived, I felt strangely calm. Almost too calm. I had been admitted into the hospital the night before so my blood pressure could be observed and so I could receive medications. I had a great night spent with my Mom and Dad and even started feeling excited again.
I wasn't as relaxed in the hour leading to surgery. My Dad was taken in to surgery first, so his kidney could be removed. Once, transport arrived to take me to the prepping room, the panic set in. I couldn't stop crying and I remember telling my mom I'd changed my mind and didn't want to have a transplant. Of course that was my fear talking and my Mom knew it. Her response was, "It's too late to change your mind, your Dad is already in surgery." Surprisingly, those simple words eased my fears.. or it may have been the medication I was given through my IV.
Transplanted kidneys are placed in the lower front abdomen. My Dad's donated kidney was placed on the right side. Medications must be taken on a daily basis to maintain a transplant. In the beginning I was taking 28 pills every single day. Most of the medicines were to combat side effects of anti-rejections drugs. One bad pill in particular had some very bad effects such as, weight gain, mood swings and "moon face." I tried to not let them get me down but it did take a toll on my self esteem.
As I grew older and had a better understanding of what I'd actually gone through, I embraced my (physical) scars. I like to refer to them as battle wounds. I'm reminded everyday...just how far I've come. They are a part of who I am and without them, I wouldn't be here today.
This decal is a great way to show support and promote awareness. It can be applied to any smooth clean surface. It can withstand extreme temperatures and exposure to the elements without fading, cracking, or peeling.
Complications During Surgery
I'll never forget waking up from surgery, I felt as though an elephant was sitting on top of my body. The pain was unbearable. I couldn't speak as there were tubes in my nose and down my throat. I didn't know it at the time but I was in the Intensive care unit (ICU).
My new kidney was finally working beautifully, it was making urine and filtering my blood, which was something I hadn't experienced in a long time.
Unfortunately, it wasn't as easy as it should have been. In addition to being transplanted, I was cut open 2 more times within 32 hours. I'm glad I don't remember any of it because I never woke up during those hours.
From what I've been told, the kidney started working as soon as it was transplanted, I was sewn up and sent to recovery. That's when the problems started, the kidney suddenly stopped working. Back to surgery I went! My doctors changed the position of my kidney and it began doing it's job.
The 3rd time my kidney stopped making urine. I was taken back into surgery because the ureter (tube from the bladder to the kidney) was kinked and needed to be corrected.
All of the surgeries caused stress on my kidney and took a toll on its life span. I was sat down and explained I would probably only have 5 years with this kidney.
I'm a fighter and much stronger than my doctors thought, I was blessed with my Dad's donated kidney for 9 long years.
A Family Affair
The tale of a mutating gene
To this day, I have yet to receive a true reason as to why my kidneys failed. It's been theorized, my Mom and Dad each carry a gene which is normally only present in one. When two parents have the gene, it mutates over time. I'm the baby of my family of 3. I'm happy my parents didn't have a 4th child because they would have been dealt a worse hand than I was.
My oldest brother has never had any issues with his kidneys and hopefully he stays healthy.
My middle brother, Shawn, began getting kidney stones at age 16. No one could have predicted he'd also suffer through renal failure. In 2001, he too, received a transplanted kidney from a cadaver donor. Thankfully, he is still in excellent health and leads a normal life today.
On the basis of this theory being correct, my brothers and I were all tested. I very happy to say, we don't carry the mutating gene.
Preparing for the Loss of a Transplanted Organ
In 2004, I started noticing a difference in my health, I was going downhill. It had been 7 years into my transplant and I'd learned to read my body and know when something wasn't right.
I was scheduled for a biopsy of my kidney. I'd had one before and knew what to expect and how to take care of myself. The large collecting needle is plunged into the skin over the kidney. This needle took a small piece of my kidney so it could be analyzed. It's an outpatient procedure and I was fully awake the whole time with a local anesthetic injected.
The biopsy was to determine if I was experiencing chronic or acute rejection. Chronic rejection meant (slow) permanent loss of my kidney while acute would be a "fixable" problem. I was told I'd have to wait for the results. Waiting is not my strongest point but I already knew the answer to the test. It was the confirmation of what I already knew that kept me on edge.
The phone call confirmed my fears. I was slowly losing the function of my kidney. For me, chronic rejection was slow and I'm thankful for that. It gave me time to prepare and once again accept my fate.
My kidney was lost on January 29, 2006 but my spirits remained high as my story started all over again. I was re-transplanted on May 11, 2006. This time, my mother was able to donate. My kidney is working beautifully to this day.
It's always nice to have good book to curl up and read, especially when you are feeling under the weather.
In this book there are many discussions of organ donation focus on the shortages of organs and the needs of recipients. This book provides a unique and compelling perspective. Bramstedt (consultant, California Transplant Donor Network), a medical ethicist, and Down, a writer and recipient of a kidney from a stranger, have written an engaging book that highlights the lives of living donors who have given organs to people whom they do not know.