ABC 7 News, San Francisco Affiliate, by Wayne Freedman
Jesse Brewster has been dealing with a kidney illness for 20 years and he's about to get some help from an unexpected source.
When asked if she was worried about how to take care of the one she loves, Sarah Brewster responded, "I know what I'm getting mine for Valentine's Day."
Does she ever.
Sarah and Jesse pledged "for better or for worse" quite a few years ago.
Next week, right after Valentine's Day, they will take it to extremes. She is giving him one of her kidneys.
"I just feel we were meant to be in each other's lives and this is another way that's showing up," Sarah said.
The professional singer and songwriter, husband and father of two faces a life-threatening crisis -- polycystic kidney disease.
Polycystic kidney disease is the second most common inherited ailment in the world. If your parents have it, you stand a 50/50 chance of getting it, too.
Jesse's father had it and his brother died from it.
"I probably would have started dialysis later this year," Jesse said.
Instead, Sarah will take six weeks off from work to donate her kidney.
Their daughter, Isla, will get a crash course on anatomy. "We're going to tell her Daddy hasn't been feeling that well and Mommy has an opportunity to make him feel better," Sarah said.
And in this family, Valentine's Day will never be the same.
Sarah and Jesse already shared a house, a marriage and children. "First she gave me her heart. Now she's giving me a kidney," Jesse added.
Knowing Kidney Problems
From Nigerian Observer
How To Know You Have Kidney Problems
Most people are not aware of the fact that kidney diseases can be silent killers. They may not show any symptoms for a long time, till the situation becomes critical. Even young people are now prone to it. It is important to recognize the symptoms of kidney disease to catch them early.
There are many reasons for kidney diseases. The most common causes are Diabetes and hypertension, even an unhealthy lifestyle with a high calorie diet. Certain medicines, lots of soft drinks and sugar consumption can also cause kidney damage, experts say (Martins, 2000).
How Do You know you Are suffering From Kidney Problems? Change in your urinary function. The first symptoms of kidney disease are changes in the amount and frequency of urination. There may be an increase or decrease in the amount and/or its frequency especially, at night. It may also look more dark coloured. You may feel the urge to urinate, but unable to do so when you get to the restroom.
Difficulty or pain during voiding. Sometimes, you have difficulty or feel pressure or pain while vomiting. Urinary tract infections may cause symptoms such as pain or burning during urination. When these infections spread to the kidneys, they may cause fever and pain in your back.
Blood in the urine. This is a symptom of kidney disease which is a definite cause for concern. There may be other reasons, but, it is advisable to visit your doctor in case you notice it.
Swelling: Kidneys remove wastes and extra fluid from the body. When they are unable to do so, this extra fluid will build up causing swelling in your hands, feet, ankles and/ or your face.
Extremely fatigue and generalized weakness. Your kidneys produce hormone called erythropoietin which helps make red blood cells that carry oxygen in kidney disease, lower level of erythropoietin causes decreased red blood cells in your body, resulting in anaema. There is decreased oxygen delivery to cells causing generalized weakness and extreme fatigue(Joe, 1999).
Dizziness and Inability to concentrate. Anaemia associated with kidney disease also, depletes your brain of oxygen which may cause dizziness trouble with concentration and so on.
Skin rashes and itching: kidney failure causes waste to accumulate in your blood. This can cause severe itching and skin rashes.
Feeling cold all the time. If you have kidney disease, you may even feel cold even when the weather is warm, due to anemia, pyelone phritis kidney infection may cause fever with chills metallic taste and Ammonia breath: Kidney failure increases level of urea in the blood (uraemia). These urea are broken down to ammonia in saliva causing urine-like bad breath called ammonia breath: It is also, usually associated with an unpleasant metallic taste (dysgeusia) in the mouth.
Nausea and vomiting: The build-up of waste products in your blood in kidney disease can also cause nausea and vomiting.
Shortness of breath: kidney disease causes fluid to build up in the lungs, also anemia is a common side –effect of kidney disease, starves your body of oxygen. You may have trouble catching your breath due to these factors mentioned (Joe,1999).
Pain in the back or side: some cases of kidney disease may cause pain, you may feel a severe cramping pain that spreads from lower back into the groin if there is kidney stone in the ureter. Pain may also be related to polycystic kidney disease and inherited kidney disorder, which causes many fluid- filled cysta is the kidney, interstitial cystitis, a chronic inflammation of the bladder wall, causes chronic pain and discomfort. [Read more]
PKD Fundraising
Hundreds of supporters bid on auction items and dined on spaghetti and meatballs Friday night to help fight ARPKD/CHF - a rare childhood kidney and liver disease.
The fundraiser at St. Paul Lutheran Church raised $5,000 with proceeds going to the ARPKD/CHF Alliance - a national non-profit organization that raises funds for research and provides to support to families.
Jaina Cormack, 4, a preschool student at Grindstone Elementary School, and her sister, Chesley, 7 ½ months old, have both been diagnosed with autosomal recessive polycystic kidney disease (ARPKD), which occurs in only one of every 20,000 births. Congenital hepatic fibrosis involves the liver. Small cysts form on the kidneys and liver and eventually lead to organ failure and the need for transplants. There is no cure.
Jaina's and Chesley's brother, Dougie, 2, is a carrier. The disease is genetic and parents Doug and Lisa Cormack have no history of the condition in either family.
Lisa Cormack, a 2000 graduate of Berea High School, said Jaina is receiving treatment at Cincinnati Children's Hospital, where she will receive a liver transplant when the time comes, and at University Hospitals in Cleveland, which is treating the kidney portion of the disease. Both Lisa and Doug have tested positive as a match for a kidney transplant. Those won't happen until Jaina is older, probably around 10 for the liver transplant and in her late teens for the kidney transplant.
In the meantime, Jaina is on a low sodium diet and is on high blood pressure medication. "We're all eating much healthier now," Lisa said. Jaina's kidneys are enlarged as was the left side of her heart. Doctors monitor her on a regular basis.
Insurance is covering Jaina's treatments but would not cover genetic testing for the rest of the family. The Women's Group at St. Paul Lutheran Church, where the Cormacks are members, held a fundraiser to take care of that expense. In fact, the Women's Group cooked and served the pasta dinner on Feb. 6. Doug Cormack, who is in the landscaping business, said more than 100 baskets were donated for the reverse raffle. For a silent auction, Mayor Cyril Kleem donated a baseball bat autographed by Hank Aaron and a signed copy of Cleveland Brown Don Crockroft's book, "The 1980 Kardiac Kids." The mayor's brother, Anthony Kleem, an Americana artist, donated a piece of artwork.
Jaina is a very brave little girl, her mother said.
"She has been thrown into this medical world of doctor appointments, blood draws and ultrasounds and comes out with her head held high - and a sucker or sticker in hand," said Lisa, who is on leave as a music teacher with the North Ridgeville Schools.
"The worst part about childhood disease is the fact that her childhood memories will be filled with good times and happy adventures, but always with the underlying knowledge that she is different and sick despite how she may look to others," Lisa said. "It is hard has a parent to love her so much but not be able to fix this for her."
For more information on ARPKD, visit www.arpkdchf.org.
From MK Web, United Kingdom
Two friends from Milton Keynes are encouraging the area to ‘Go Purple’ this March for Kidney Research UK.
Rosalie Osborne and Irona Dougherty are backing Kidney Research UK’s ‘Go Purple’ campaign which aims to raise vital funds for research into kidney disease, which doesn’t have a cure.
Both have first-hand knowledge of kidney disease. Rosalie's daughter in law Helen and grandson Alex suffer from a type of kidney disease called Polycystic Kidney Disease (PKD).
PKD is a genetic, hereditary condition where cysts form on the kidneys causing the kidneys to slowly stop working properly.
PKD Research
From MedScape, by Meg Barbor
Dr Gura helps assistant John Kundzins don a demo version of the wearable artificial kidney (Source: Stephen Brashear)
NEW ORLEANS — A wearable artificial kidney (Xcorporeal Inc.) enables greater mobility for dialysis patients, reducing their time in the chair and improving their quality of life, according to research presented here at the American Society of Nephrology 35th Annual Dialysis Conference.
The device, invented by nephrologist Victor Gura, MD, from the David Geffen School of Medicine at the University of California in Los Angeles, is currently undergoing its first human trial in the United States. Human clinical trials conducted in Italy and London have already been successfully concluded.
"Unmet needs in dialysis have remained relatively unchanged for the past 5 or 6 decades," Dr. Gura pointed out. There is still a need to reduce mortality, improve quality of life, reduce cost, improve access, and simplify care, he said.
Although better technology has been developed to treat patients with end-stage renal disease, this has not translated into better patient outcomes, he stressed.
To improve quality of life for dialysis patients, pill burden and time in the chair need to be reduced, dietary restrictions need to be less stringent, and patient fatigue needs to be addressed. "The day after dialysis, patients might have a life, but then the following day, they're on dialysis again. This is not quality of life," Dr. Gura explained. Patients may also suffer from sleep apnea, fear, and depression.
"When we tell a patient that dialysis will be necessary, the human reaction to hearing those words is, uniformly, devastation," he said.
Patients in need of dialysis have myriad questions about their quality of life, life expectancy, cost, and assistance. "We as a nephrology community are not doing very well, and the answers that we have for this conundrum of human suffering are not good enough," he said.
The artificial kidney was developed to allow patients to be more mobile during a dialysis session and to go about some of their daily activities while the device runs. Currently, patients are tethered to a cumbersome machine for 3 to 4 hours at a time, several days a week.
Miniature Battery-Powered Device
The dialysis device slowly and continuously removes fluids from the body at the same pace as healthy kidneys. When fluid is removed from a patient too quickly, the patient will crash, Dr. Gura noted. "If we remove it nice and slowly, as the kidneys do — over 24 hours instead of 3 hours — then mortality and morbidity are improved."
The miniature battery-powered dialysis device is worn like a tool belt. It is connected to the patient by a catheter, weighs about 10 pounds, and uses only 400 cc of sterile water. "Because we have a recirculating loop, we have 24/7 use of only 400 cc of water," he explained. Blood is filtered by our kidneys 24 hours a day, 7 days a week. "So if you only filter your blood 9 to 12 times a week, it doesn't work too well."
"We know that quality of life is better when we dialyze more frequently," Dr. Gura said. However, he pointed out, there are logistical obstacles to frequent dialysis. Although the number of patients in need of dialysis continues to grow, there is a lack of funds to pay for treatment and a lack of space in clinics.
"Only 10% of patients will dialyze at home," he reported. "If 90% of dialysis patients will not dialyze at home, how are they going to dialyze every day? Are we going to build twice the units to house them? Do we have the nurses or the capital to do that? The answer is no."
If we have less fluid to remove, less hypotension, a lower pill burden, and less hospital use, we could save some money, he said.
"Dialysis revolutionized medicine by showing us that even the failure of a vital organ can be replaced by appropriately timed medicine. And it didn't require a kidney transplant; a machine could do it," said session moderator Eli Friedman, MD, from the SUNY Downstate Medical Center in Brooklyn, New York.
"Dialysis, which first was cumbersome and difficult and required a surgeon, can now be moved to a wearable device, and that's pretty exciting," Dr. Friedman told Medscape Medical News.
When body fluids are at normal levels, health conditions such as pulmonary edema and hypertension will likely be improved or completely eradicated. And because users of the dialysis device receive continuous hemodialysis, patients can potentially be relieved of dietary and fluid restrictions and of the binders that control phosphorus and potassium levels.
"Daily continuous dialysis is beneficial if you can find a way to do it," Dr. Gura said. "In 5 years, I hope to see the national use of this device."
From Inquisitr, Montreal, Canada
The teen, who hopes her invention will one day be used overseas, poured over dialysis machine owner’s manuals over the internet before developing her own prototype utilizing simple technology which cost a mere $500 to develop. Compared to dialysis machines which currently cost around $30,000, Pogharian’s is essentially an inexpensive homemade alternative. She said she wanted to find a way to improve the procedure, as it “takes a lot of energy” out of the patients.
“It takes a lot of energy out of them (…) They’re very tired after a dialysis treatment. (…) You wouldn’t have to make your way to the hospital, which is a problem for a lot of patients. It’s not necessarily easy to make your way to the hospital three times a week, especially it you have limited mobility.”
Dialysis, a process which is typically used to treat those afflicted with kidney disease, is the process of cleaning waste from the blood. The entire process takes roughly four hours, twice a week. Anya indicated that ten percent of patients residing in India and Pakistan requiring treatment “can’t afford it or can’t have it in any way.”
Pogharian, who spent 300 hours on her new invention, chose to work on the medical contraption after finding inspiration in volunteer work at a hospital’s dialysis unit.
While the young inventor has been offered a summer internship by Héma-Québec to test out her new invention with real blood, she’s also earned what CBC referred to as a “slew” of awards and scholarships. Louis Thibault, director of applied research at Héma-Québec, said that the entire “population will benefit” from her invention due to the reduced cost of medical care to those requiring dialysis.
“All the population will benefit from that kind of instrument that will reduce medical care cost, hospitalization stays. Basically, it’s a great idea.”
The dialysis machine’s teen inventor said that she’s currently focused on doing well on her CEGEP midterm exams.
No comments:
Post a Comment