From Rockdale News
A Journey Through Organ Donation: Part 1, Blame it on Facebook
I hit send and gulped. What would she think? My cousin, Denise, and I hadn’t spoken in over 35 years and I just offered her my kidney. I wondered if I should delete my post. Who was I to even try to help? I’m a 53 year old single mom with a dog named Dipstick. Never mind the fact that my cousin and I live 900 miles apart.
A private message from Denise appeared on the screen, “Thanks for contacting me. I would be so grateful if you phoned my transplant coordinator to learn more.”
Within days, we exchanged phone numbers and started catching up. A lot had happened since my trip to her house in ’78. Denise stayed in Massachusetts, married and raised three wonderful kids. I moved several times, married, had a son, and divorced. I’m still learning how to juggle parenting a teen, maintaining a home and working full time.
Denise’s mom, Georgette, was my godmother and my mom was hers. Our moms were close. We lived near each other and spent a lot of time together. When I was seven, we moved away. My godparents, Georgette and Ray, maintained a close relationship through letters. Over the next ten years, we spent several family vacations together. After high school, we kept in touch through our parents.
I remember hearing the news that my aunt was in kidney failure and had to begin dialysis. She had been diagnosed with PKD (Polycystic Kidney Disease). The incurable genetic disease usually doesn’t appear until adulthood. Dialysis was hard on Aunt Georgette. She was miserable and eventually didn’t travel at all. Fifteen years later, she passed away.
No one wanted anyone else to go through that. Before my mother passed away in 2011, she made us promise to take care of all of Georgette and Ray’s kids, especially Denise.
When my dad told me that Denise was in the early stages of PKD, I was shocked. I told myself that she would be okay. Shortly after that, I was reassured that the disease was moving slowly.
A few years ago, I started following Denise’s Facebook page. I really didn’t notice anything until she posted that her husband, Peter, started testing to see if he could donate to her. There wasn’t any news for quite a while. Then, Denise gave an update. The doctors had determined that although Peter was a match, he couldn’t donate. They determined that there might be a risk to his health if he donated. The process to be approved is much more complicated than most people know. By now, Denise’s health was getting worse and she would be facing renal failure within the year.
My brother, Dan, called and told me that he had looked into testing. Even if he was a match, he wouldn’t be able to take time off to donate. He had just started to work for a company that delivered home dialysis equipment. Not being in a position to help Denise was breaking his heart.
“Did you hear? Dan said, “Dad called to see if he could be tested.” My dad is one of the most active men I know. He’s 81, travels, has a girlfriend and can bench press his own weight. He was quite disappointed that they wouldn’t even consider him because of his age.
That’s when Dan asked me about my blood type. That’s the nudge that I needed.
So, I sent my message, “Denise, I’m type 0. What do you need?”
PKD Diagnosis
From Daily Herald, Chicago
Offer to donate kidney leads to PKD diagnosis
Courtesy of Amy Manelli
My name is Amy Manelli. I was born and raised in Northbrook and currently live on the North Side of Chicago with my husband and our two daughters, Quinn and Nicole.
I first learned about the PKD Foundation after attending the Chicago Walk for PKD with my family about 10 years ago. At the time, my father was dealing with the full impacts of polycystic kidney disease and I was just beginning to show the early signs.
In his late 20s, my father had been diagnosed with high blood pressure -- a typical first indication of PKD in an otherwise healthy, young individual. After years of declining kidney function, he went on to have complete kidney failure in 1997 at the age of 46.
Shortly after, I was tested to see if I would be a good match to donate a kidney for him and I discovered I had this genetic disease as well. Our family had not talked about the disease and so he had not paid much attention to it in his younger years.
However, after kidney failure and discovering one of his children had the disease, he decided it was time to become educated and find out what he could do to support the effort in finding a cure -- probably not in time for himself but hopefully for me and others.
My father was on dialysis for nine months. He later had two successful kidney transplants, the first in 1998 and the second in 2008. After his second transplant, he was feeling the best he had in many years. He always used to say that he never realized how bad he felt until he felt good again.
In late 2010, he was diagnosed with an aggressive form of cancer. After being on immunosuppressant drugs for 12 years, he passed after a short three-month battle with the disease.
Losing my dad was very difficult for me. At the time, I was also pregnant with my first child. Consequently, my perspective on life changed significantly. I decided to do all I could to support the PKD Foundation in finding a cure for polycystic kidney disease, not only for myself but for my children and for my sister, who had also been diagnosed.
Thankfully, my personal health has remained good. My kidney function has started to slightly decline recently as I move into my mid-thirties, but I still feel well and I am able to live an active lifestyle.
The Chicago Walk for PKD is not only a good opportunity for me to raise funds in support of the PKD Foundation, but it is a great chance to meet other families and friends impacted by this disease. It has been a wonderful experience to be able to share stories and memories. [Read more]
From Sea Coast Online, Portsmouth
Beth Jackson, and her daughter McKinna Porter, 14, of Dover work on painting a piece of pottery together during a party at Firefly Pottery in Portsmouth on Friday. The Make-A-Wish Foundation presented McKinna, who is battling a life-threatening polycystic kidney disease, with a trip to Disney World with her family. Photo by Rich Beauchesne/Seacoastonline
Fourteen-year-old McKinna Porter is as selfless an incoming high school freshman can get.
Porter, a Dover resident, has dealt with a life-threatening kidney disease for her entire life, losing her father to the same disease when she was just six months old.
To combat the genetic polycystic kidney disease, Porter has to drink at least a dozen liters of water each day, while avoiding salty foods — and even that won’t keep the cysts on her kidneys from growing to the size of a football when she’s in her 30s or 40s, her family says.
After all she has been through, Porter was given the opportunity to have a wish granted by the New Hampshire Make-A-Wish Foundation.
“At first she wanted to go on a shopping spree so she could buy her siblings gifts,” said Dave Tarbox, a longtime Make-A-Wish volunteer, along with his wife Maria. “McKinna ended up deciding on a trip to Disney World, so that her whole family could enjoy it.”
After meeting Porter, you soon realize that nothing makes her happier than having her family near her and a good book within arm’s reach.
“I have more than 1,000 books on my Kindle,” Porter said. “But I want to get to 3,000.”
Porter was busy Friday afternoon at Firefly Pottery in Portsmouth, painting a ceramic cupcake along with her sisters, mother and soon-to-be step father.
“We’ve had a really tough year,” Porter said, adding that she lost both of her grandparents this year. “I wanted to do something where the whole family would have fun.”
That’s why she decided on a trip to "The Happiest Place on Earth," taking her blended family of eight with her to experience all the rides and magic.
“I’m most excited for Universal Studios,” Porter said. “My little sister has been talking my ear off about how she’s going to meet Elsa and Mickey Mouse.”
Denise McDonough, owner of Firefly Pottery, hosted the Make-A-Wish party for Porter’s family, with each of them painting different ceramics to be fired in the kiln before taking them home.
“I love this atmosphere,” McDonough said. “If you put out good stuff, you get good stuff back.”
The group of eight leaves Saturday, Aug. 15 and returns the following Friday. [Read more]
Waiting for Kidneys
From WTTV, CBS Affiliate, Indianapolis, Indiana
Close to a thousand people are on the waiting list for a kidney, and that’s just in the state of Indiana.
One patient is Bob Bales, a 59-year-old retired machinist from central Indiana. He was diagnosed with PKD, or polycystic kidney disease in 1999. In 2003, his younger brother, Don, donated his kidney, but now that organ is failing. Bob is in desperate need of another kidney, if he’s to survive.
Dialysis, which is the process of filtering blood, keeps Bob alive today, but the process is time consuming and is literally wearing him out.
He travels to Shelbyville three times a week for the procedure and says he’s exhausted from the process. A heart problem has forced him to wear a pacemaker and now he has numbing in his feet. Time is running out for this father and grandfather.
Dr. Alvin Wee is a kidney specialist who treats Bob Bales and works both with St. Vincent Hospital and the Cleveland Clinic. He claims potential donors are frightened away from even inquiring about the procedure, because of old wives tales, like shortened life spans.
“There are multiple studies in the past and recently, which have shown that giving one kidney doesn’t make your life shorter than people who don’t donate their kidney. It’s a myth, an absolute myth,” says Dr. Wee.
Bob’s brother, Don, says donating his kidney hasn’t presented any problem to him at all. In fact he claims his life would not have been complete, if he hadn’t donated one of his kidneys to his brother. Don gets a yearly physical and monitors his health. He’s not had any health problems from his donation.
Bob Bales is one of 600,000 patients with polycystic kidney disease in this country. It’s an inherited condition where cysts literally take over a kidney. Patients have to closely monitor their blood pressure and take pain medication, but there are no cures. The only options for many patients are dialysis, which is expensive and kidney donation.
Kidney donors must meet certain criteria. They cannot have diabetes, cancer, kidney disease or hypertension. They must be nicotine free for 8 weeks prior to the operation. Donors don’t have to perfectly match a recipient’s profile.
For more information on kidney donation called the local St. Vincent Transplant Team at 317-338-2694.
PKD Fundraising
Julie Crick, of Hornchurch, has been inviting 30 fans of the beautiful game to predict weekly results in aid of the Royal London Hospital, where she underwent a kidney transplant 13 years ago.
Each bet costs £2 with 35 per cent of the money raised donated to the hospital and the rest to the lucky winner.
She said: “We used to make bets just as a family but as more people wanted to get involved, the bigger it got.
“It can be a lot of hard work organising it but, it’s good because instead of just asking people for money, they actually get a chance of winning some!”
The mum-of-two underwent the transplant after she was diagnosed with polycystic kidney disease and started fundraising for charities in 2012 to mark the 10th anniversary of the procedure.
Her father died at the age of 55 from the condition as well as her uncle at 42.
Three of Julie’s sisters also have the disease as does one of her children.
The Royal London Hospital will be spending some of the money donated on further research into improving survival rates of those with kidney disease.
Julie has raised more than £10,000 for different kidney research charities over 10 years.
Dr Kieran McCafferty, nephrology consultant at Barts Health NHS Trust, said: “We’re fortunate to have world-leading research teams and facilities right here at The Royal London Hospital, meaning that funds raised by people such as Julie really is helping to change the lives of sufferers.”
Julie has so far raised about £1,000 which will go towards new clinical equipment.
She said: “It is so important that we fund this vital research to better understand the many causes of chronic kidney disease, diagnose people earlier to offer help and ultimately find a cure.
“I am incredibly grateful for the brilliant care of the hospital and the wonderful life that my transplant has given me.
From The Spokesman Review, Spokane, WA
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