From Sunday Star-Times, New Zealand, by TIM NEWMAN
I had known for quite some time this day was going to come.
Polycystic Kidney Disease is a genetic disorder which runs in my family – my grandmother had it, my mother had it, my sister has it, and I have it.
Generally its about a 50/50 split - with my kids all of them could have it, or none of them could have it – it's a roll of the dice.
I first found out about 25 years ago.
At the time I was fit as hell (even) surfing overseas. When I had a medical the doctors picked up a bit of high blood pressure.
That was the giveaway, one of the traits of this thing. It increases your blood pressure because your kidneys are working harder.
For the past 10 years the doctors have been keeping an eye on things, knowing that it was going to kick in at some stage.
Five years ago I started losing kidney function, but it was a gradual decline - about one percentage point per month.
Because it's such a gradual decline you don't feel like you're going downhill too much, everything seems normal.
As your kidney function gets lower though, small things start popping up and you know your kidneys aren't working that well.
When I was down to 15 per cent, I'd notice days when I was really tired, feeling crook in the night, and just not being able drink as many beers as I used to.
Once you get down to 10 per cent, that's when the doctors start thinking about hooking you up to dialysis or finding a kidney donor.
I had two or three people come forward to donate, but they put you through a pretty stringent medical and in the end they got declined.
My 25-year-old daughter also put her name forward, but the doctors were worried she might turn out to be a carrier of the same gene in the future.
Well Damian, who's been like a member of the family for a long time, found out about the situation.
I'd known Damian for years, we played pool and darts together down at the Mt Manaia Club in Whangarei Heads, and his kids and my kids had been running around together since they were young.
He put his hand up to do it, instead of my daughter – which was bloody awesome of him.
By the end of the process I'd got down to five per cent kidney function. I'd have days off when I was really tired and had to sleep, but doctors were amazed I was still working and functioning reasonably well.
I was only a couple of weeks away from going on dialysis, so I was getting myself up mentally and physically for it, but I was quite lucky that Damian came through at the right time.
A space came up and we just put our hands up and said, lets get it done right now.
It was a pretty euphoric feeling.
It's a bit of a roller coaster journey - you go through that process with them as well.
Coming out of it was pretty horrendous though, with 10 days of pretty serious hospital care ... there was all sorts of cords and bloody things going into me.
With the operation the new kidney was placed below the originals, almost in my stomach cavity, while the old kidneys are left to wither away.
I didn't feel well for at least two weeks, and was going in for check-ups with the doctors in Auckland every day.
Ten weeks later and I'm still going into hospital for blood tests twice a week, but it's becoming less often as time goes on.
My levels are all really good and the doctors are happy, but it looks like I won't be able to go surfing again for another four or five months.
Damian Jackson had never considered donating an organ, before he found out about Richard's condition.
On Wednesday 23 May 2018, I was wheeled to the operating room at Auckland Hospital, where the final stage of a six-month journey was about to begin.
I was there in the hope I could give my good friend Richard a second chance to live.
Richard's kidneys were on their last legs, with only six per cent of their functionality left.
He had been deteriorating for a while.
Usually witty and sarcastic, over the months he seemed to grow more and more tired.
As the process went on, I began to realise just how sick he was, and what a battle he had been fighting in the privacy of his own home.
Only near the end of the journey did I learn about the constant nausea and vomiting, low energy levels, and just how difficult normal day-to-day things had become.
Richard had inherited Polycystic Kidney Disease, a condition that leads to progressive cyst development and eventually kidney failure.
I knew he needed a new kidney, and I knew I had to help him however I could.
Read more...
Angela Robertson, 50, sat nervously, hands pressed against her thighs, as she waited at a banquet table Friday evening for a woman giving her a gift that could change her life.
When she turned around, she saw Jeri Gill, the 53-year-old mother of four, who saw Robertson's plea for help on Facebook seven months ago and offered to give her the kidney she needs to resolve a rare genetic disorder.
"I was wondering if this day was coming," Gill said, as she hugged Robertson for the first time, both women tearing up.
Despite the intimate procedure the two women will undergo, the pair only have spoken via Facebook Messenger. They worried that meeting too soon could have raised their expectations had it not worked out, and they wanted to greet each with their families on hand.
"I just thank you. I just thank you so much for doing it for me," Robertson told Gill as they sat next to each other at the dinner table.
"It's my pleasure. I've told you that all along. It is my pleasure," she responded.
The pair said they wanted to share their story in case it motivates someone else to donate a kidney to someone in need.
Robertson has a rare genetic condition called polycystic kidney disease that causes cysts to grow on her kidneys, stopping them from functioning normally. It's a disease that runs in her family, and it has already killed her father and brother.
Robertson has been dealing with the condition since she was 17 years old, and she had one of her kidneys removed in September. The remaining one weighs more than 15 pounds, making her feel sore and pregnant.
For the past seven years, Robertson, who lives in Independence, has undergone dialysis three times a week while she waited on a list to receive a kidney from a deceased donor.
On New Years Day, she reached out with a hope and a prayer to her followers:
"Friends and family, please share this on your Facebook (page). Maybe, God willing, I will find some special person to donate me a kidney," Robertson wrote on a post with her photo and blood type.
Gill, who lives in Springfield, was interested in donating a kidney after a viral video she watched online several months earlier. In that video, a woman and her husband weep as she presents him with a customized baseball card that says she is his match and can be his donor.
"It was very emotional. And that's where the seed was planted," Gill said. "Because I think before that, I wasn't even sure you could donate a kidney."
A Washington man donated his kidney to his wife just a few months before they celebrate their 30th wedding anniversary. What is polycystic kidney disease or PKD?
Husband Donates Kidney To Wife
In October, Steve and Lesley Kennedy will be celebrating their 30th wedding anniversary. Before reaching that milestone, however, the couple endured the complications of Lesley’s PKD.
For a long time, Lesley had been suffering from the disease that causes fluid-filled cysts to grow in her kidneys. Eventually, her condition grew severe enough for her to require dialysis and doctors informed her that she already needed a kidney transplant.
Although a co-worker and her sister offered to donate a kidney to her, neither of them was a match. Fortunately, when Steve decided to donate his kidney to his wife of nearly three decades, tests proved that they were indeed a match.
On July 19, the couple underwent the successful kidney transplant, and both are doing well so far thanks to the care of doctors, nurses, their son, and Lesley’s sister.
“My donated kidney appears to be doing pretty well in its new home inside Lesley,” Steve shared in a Facebook post where he also promoted organ donation.
”Also consider organ donation. It is truly an amazing gift to be able to donate. Especially to your spouse.”
What Is Polycystic Kidney Disease?
As mentioned, polycystic kidney disease is a condition in which numerous fluid-filled cysts to grow in the kidneys. If the cysts get too large or if too many cysts grow, the cysts can eventually replace much of the kidney and eventually lead to damage, reduced kidney function, and even kidney failure. When this happens, the patient may require a kidney transplant.
According to the National Kidney Foundation, PKD is a genetic condition that can be passed from parents to children. In the United States, about 600,000 people have PKD, and occurs in all races and equally in men and women.
Some of the signs that an individual may have PKD are blood in the urine, increased abdomen size, high blood pressure, fluttering or pounding chest, frequent bladder or kidney infections, and back or side pain. It is often diagnosed using an ultrasound, but in some cases, an MRI and CT scan may be helpful in detecting smaller cysts.
So far, PKD has no known cure, but recent research suggests that drinking plain water and avoiding caffeinated beverages may slow the growth of cysts. Other means to slow the growth of cysts are blood pressure control, prompt treatment of kidney and bladder infections, and living a healthy lifestyle, which includes weight control and reduction of salt intake.
When we spotted a unique advertisement on Facebook for someone looking for a kidney, well, it made us wonder. The message on the back of a car reads: “To ditch dialysis and resume dancing: Kidney donor needed, B+ 617-799-9741.”
So we called the number to learn the story and we found out, it’s all about hope for a better life
Catherine Boger is a songwriter and works at the Berklee College of Music. She’s written a song about her need for a kidney transplant and being stuck on a transplant waiting list. “I have polycystic kidney disease. It’s a hereditary condition,” she explains.
Even though she’s on that waiting list, now she’s going direct. Using her car as a traveling message board, hoping a good Samaritan steps up and is a match.
“There’s nothing you can think of that people haven’t done to try to find a donor. They’ve put up billboards. But a lot of people have had success with car signs, so I put a sign on my car,” she says.
For more than six years Catherine has been on home dialysis, and does six “exchanges” every day. “I do five on a cycler machine overnight, and I do one in the afternoon,” she explains.
Which means she’s tethered to dialysis for a big chunk of the day and it’s not a cure. “Your blood isn’t fully clean so your brain gets a little foggy, and your body gets tired,” she says.
She knows the car sign is a long shot, but only a transplant can give her the freedom and health to do what she wants. The stakes are high for Catherine. Her grandfather, mother and uncle died from kidney disease.
Kidneys are one of the few organs that can be donated from a “live” donor. There are over 100,000 Americans waiting for kidney transplants.
More information:
New England Donor Services
National Kidney Foundation
Dialysis Politics
From Cleveland.com
Ohioans won't be voting on a measure to cap kidney dialysis costs this November after the Ohio Supreme Court determined individuals collecting signatures for the issue didn't fill out the necessary forms.
The Ohio Renal Association, which opposed the measure, challenged the petitions turned in by the Kidney Dialysis Patient Protection Amendment Committee. The amendment is backed by the SEIU, which hired a California company to collect signatures from Ohio voters to qualify the measure for the ballot.
The Ohio Renal Association claimed that individuals managing paid signature gatherers did not fill out and submit a required disclosure form before they supervised signature collection. The association claimed 145 part-petitions had been filled out before the managers submitted the proper forms.
The Ohio Supreme Court agreed and invalidated the entire petition on Monday.
"That rule applies with particular force in this election case, in which 'strict compliance' with the law is required unless the statutory provision at issue expressly states that substantial compliance is acceptable," Chief Justice Maureen O'Connor wrote in an opinion joined by the other six justices.
Secretary of State Jon Husted's office defended the petition, saying the Ohio Renal Association didn't provide evidence showing the managers were paid before they supervised signature collection. It's possible, attorneys for Husted said in a court brief, that the managers initially collected signatures as unpaid volunteers.
O'Connor wrote that the committee's own evidence showed the signature gathering effort was organized and managed by for-profit companies. Backers paid California-based AAP Holding Company LLC $3.6 million to circulate petitions, according to campaign finance reports.
The deadline to submit signatures for the November ballot was July 4. Amendment supporters submitted signatures of registered Ohio voters then but were about 9,500 signatures short of the required 305,591. It turned in a second batch of signatures 10 days later.
None of those signatures will count going forward if the group decides to try again to put the measure before voters, according to a secretary of state's office spokesman.
The proposed constitutional amendment would have capped dialysis costs at 115 percent of the cost of direct patient care, required annual inspections of dialysis clinics and penalize companies that overcharge patients.
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