From The Hawkeye, Burlington, Iowa, by Rex Troute
My old self
I sat down at my desk at 7:30 a.m., Saturday, Aug. 20, and the telephone immediately rang. I assumed it was one of The Hawk Eye’s customers to suggest a story idea or to complain about something. It was neither.
It was a transplant coordinator at the University of Iowa Hospital and Clinics telling me they had a kidney for me.
After three years on the waiting list and two years of spending 12 hours a week on dialysis, my day had come.
My adrenaline shot up to 1,000 percent. I immediately called my mother and told her we were going to Iowa City.
But being shorthanded at the newspaper at the moment, I felt obligated to finish my Sunday business pages, which I did in record time.
My mother and I made it to Iowa City by 1 p.m., where they took a blood test to make sure the new kidney was a match. I went into surgery at 7 p.m. and was out of the operating room by midnight.
The day after was the worst as far as pain, as getting in and out of bed to walk, hurt the most. Of course, what made it even more difficult was I was hooked to an IV and a catheter.
But with each day, it got easier to get out of bed and the pain diminished.
I returned home Aug. 25 to convalesce. I am not supposed to drive or work for two months. We will see about that.
The reason I needed a kidney in the first place is I have polycystic kidney disease. It is hereditary, as my father had it and his brother, my uncle, had it. My father lived another 12 years after his operation, and my uncle still is going strong after receiving a kidney from his wife.
The disease slowly erodes the function of the kidneys to where they don’t clean the impurities from your blood well enough, which can make you feel poorly on a daily basis. It is the reason dialysis is required three times a week to get your blood cleaned.
I owe a big debt of gratitude to the nurses at the Southeast Renal Dialysis Center in West Burlington. I won’t name them here, but will thank them personally later.
And of course, I was well cared for in Iowa City by many doctors and nurses, some who were a bit more ornery than others.
And some day, I will thank the family of the woman who died in a traffic accident and the reason I have a new kidney. But I will let them mourn their loss and make that connection somewhere down the line.
I guess I needed my transplant before I could think about being an organ donor myself. Now that it has happened, I gladly will donate my organs when I pass from this earth. I can donate a liver, two lungs and a good heart to save or extend several people’s lives.
A good friend of our family received a double-lung transplant from UIHC, which extended his life.
I guess what I’m asking the faithful readers of The Hawk Eye is, consider being an organ donor. It saves lives. Think about it.
My new kidney is functioning very well, and I plan to make the most of my remaining years.
Unfortunately, I can’t write business stories for awhile, but I might write the occasional column from home.
As for my fellow workers, they’ve asked if I’m going to start feeling my feminine side due to my new kidney’s origin.
It is too early to tell, but watching a couple football games Thursday night instead of watching a movie like “Beaches” is a pretty good indication I’m still my old self. And now that I have a new kidney, I plan to keep it that way.
From the Herald Sun, Melbourne, Australia, by LUCIE VAN DEN BERG
KIDNEY disease is like a family curse for Kathryn Smith, striking seven members of her family.
But she doesn’t get despondent knowing that she lost the genetic lottery that gave her a one in two chance of inheriting the condition.
Instead, the 31 year old is determined to stay one step ahead of polycystic kidney disease, which affected her father, sister, three uncles and two cousins.
“Part of me thinks that this disease has gone through my whole family and it’s so unfair, but the other part knows that I am lucky to have people to go through it with me,” Miss Smith said.
“It can be scary knowing what the future holds, particularly looking at my cousin who is on dialysis and needs a kidney transplant, but I have taken steps to extend my lifespan.”
No meat, no salt, plenty of water and regular kidney checks seem to be stopping the tiny cysts from corrupting the organs and preventing them from filtering the blood effectively.
“It is known as the silent killer because symptoms typically don’t appear until
kidney function is almost completely lost, by which point it is too late,” Kidney Health Australia CEO Ms Mikaela Stafrace said.
This is why 90 per cent of the estimated 1.7 million Australians with all forms of kidney disease are unaware they have it, leaving them destined for dialysis or a transplants.
This Sunday Kathryn will take part in the The Kidney Health Research walk at the Botanic Gardens to raise money for the charity which wants to find better ways to detect, prevent and treat it.
www.2016researchwalk.gofundraise.com.au
Wearable Artificial Kidney
From KENS TV, San Antonio, Texas
4.5 million people across the nation have kidney disease. But Thursday, patients, families, and caregivers got together at the Texas Kidney Foundation's Kidney Patient Symposium to learn more about how they can battle the illness.
"I didn't feel like I was through with this world. I wanted to do more," said Marion Sweatmon, who is currently on dialysis.
That's how the 81-year-old felt when he was told he had kidney disease last October. "It hit me so hard that a lot of doctors wanted to give up on me but my doctor didn't," Sweatmon said.
His wife Carol, who was attending the symposium with her husband, said, "It's unimaginable now to think that there was a time when people were telling him to give up. In fact the doctors and the nurses are astounded."
Now on dialysis he's now living a near-normal life. That's just one of the many stories heard here at the Texas Kidney Foundation Kidney Patient Symposium.
Joanne Ebert is another dialysis patient KENS 5 spoke with. She was diagnosed with polycystic kidney disease 20 years ago. "It's still had its impact but it was not something I was totally not expecting," said Ebert. That's because it's hereditary. "If you have a living donor it goes a lot quicker but because this runs in my family and my daughter has it we can't pass to each other," Ebert said.
Like Sweatmon, dialysis is keeping her alive.
"If you are on dialysis it's a good thing. It can provide things that the kidney can no longer provide. It can remove fluids. It can control potassium. It can control the sodium the salt or the swelling," said Dr. Karina Vasquez, a nephrologist from the San Antonio Kidney Disease Center.
Many at the symposium came to see a wearable artificial kidney. With this groundbreaking device patients will be able to eat foods they wouldn't normally be able to eat, continue to work and play as they normally would, and live longer, fuller lives. Which is exactly what Ebert says kidney patients need to do. She said, "It's not the end of your life it's what you make of it."
PKD Fundraising
From Biggin Hill News, United Kingdom, by Kevin Black
A Caterham man is taking on a gruelling challenge in a crusade to raise more than £4,500 for charity in memory of his son, Ezra Kensit Sims.
Paul Sims will embark on the cycle ride of a lifetime on September 11, as he rides from John O’Groats to Land’s End, to raise valuable funds for the Polycystic Kidney Disease Charity (PKD).
The gruelling challenge, which will see over 1,200 miles covered and 45,000ft climbed – double the height of Mount Everest, follows the tragic passing of Paul’s baby son late last year.
The painful, personal journey for Paul and his partner, Bonnie, started during pregnancy when baby Ezra was diagnosed with having infantile polycystic kidney disease. A condition faced by Paul and many members of his beloved family – the majority of whom are fortunately currently asymptomatic, is typically not apparent until adulthood and can be well managed subject to the severity of the condition.
What happened to baby Ezra is rare. The disease was identified in utero, at the couple’s five month scan and was sadly already at a very aggressive stage. Ezra’s tiny lungs and kidneys were fatally impaired. A week later at just 21 weeks Bonnie was induced and gave birth to their beautiful angel, who they embraced throughout an emotional blessing.
Now, in memory of his son, 42 year old Paul is preparing to cycle the length of the country to raise essential funds for the charity which has provided him and his family with so much support, PKD.
The charity, established in December 2000 by patients, professionals and members of families affected by polycystic kidney disease, works to raise awareness of the condition and improve the quality of life of those suffering. The condition is the world’s most common inherited kidney disease, in which fluid-filled cysts, develop, multiply and grow in both kidneys. Over half of those affected will have kidney failure by the age of 60.
Speaking on the impending challenge, Paul said: “I’ve lived with polycystic kidney disease from a young age, having seen numerous members of my family affected before being diagnosed with the condition myself in 2001.
“Nothing, however, prepares you for the loss of a child. It is the first time the condition has affected our family this early in life and it turned our worlds upside down. The support we received from staff at St. Georges & East Surrey Hospitals and the Polycystic Kidney Disease Charity has been invaluable; it’s important to me to show my appreciation and to support the organisation’s work in any way that I can.” [Read more]
PKD Disease
People with chronic kidney disease (CKD)
People with end-stage renal disease (ESRD), especially on those who are on dialysis. The risk of developing these cysts increases as the period on dialysis lengthens.
The formation of multiple cysts is also seen in conditions that cause hypokalemia, certain metabolic conditions, and toxic injury to the kidney
Acquired cystic kidney disease does not usually present with any symptoms unless complications set in.
Inherited vs non-inherited cystic kidney disease
Unlike the large cyst-filled kidneys found in people with inherited polycystic kidney disease (PKD), the kidneys in acquired cystic kidney disease are normal in size or smaller, and there is no genetic cause for the cysts. Rather, they are due to the damage that has occurred to the renal tissue. Patients with genetic PKD have a family history of similar disease, unlike those with the acquired type.
There is also no cyst formation in other parts of the body, whereas liver and pancreatic cysts are common in the inherited condition. Cysts herald the slow progression to CKD in the genetically caused PKD. On the other hand, cysts occur several years after the onset of CKD in the acquired type.
Pathogenesis of acquired cystic disease of the kidneys
The incidence of cystic kidneys varies from between 7-22% in people who suffer from chronic kidney disease but are not on dialysis, to almost 90% in those who have been on dialysis for 8 years or more. The cause of cyst formation is as yet not understood, but has to do with the kidney disease itself.
CKD results in the accumulation of several metabolic waste products in the blood. Many of these, but not all, are removed from the blood by dialysis. It is thought that one of the waste products which is not filtered by dialysis accumulates in the body, and is responsible for cystic formation in the renal tissue. This is supported by the finding that cystic changes often regress in the damaged kidneys after a successful kidney transplant (the diseased kidneys are not routinely removed during a transplant).
Complications
Infection of a cystComplications related to cystic kidney disease include:
Bleeding into a cyst with resulting pain and hematuria
10-20% of developing kidney tumors
A slightly higher chance of cancerous kidney tumors
Diagnosis and treatment
Diagnosis of cystic kidney disease is on the basis of symptoms such as back pain, fever and bloody urine in a patient who is on long-term dialysis. It may be confirmed using imaging tests such as ultrasound, CT scanning or MRI scanning to visualize the kidneys. Treatment largely deals with symptoms, such as draining large cysts which are causing pain, antibiotics to control infection, and tumor removal. Regular screening at intervals of three years is sometimes advised for all patients with CKD, especially if they develop tumors.
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