From Today Singapore, BY MATTHIAS TAY
Before going to bed, Madam Sarbanon Buang, 63, hooks herself up to a dialysis machine, which draws out waste that has collected in her body during the day and injects a fresh supply of a glucose solution.
The procedure, carried out with the help of her husband and caregiver Yassin Buang, is repeated several times over a 10-hour period nightly, leaving Mdm Sarbanon free in the day to go about her daily activities.
Mdm Sarbanon is among the relatively few kidney patients in Singapore who choose to take up peritoneal dialysis (PD), which can be done at home, but is shunned by many patients due to concerns about having to perform the procedure by themselves.
This is despite the fact that PD has many advantages — it is a gentler treatment process that lessens the burden on the kidney, said medical professionals.
The take-up rate for the procedure remains low, at about 330 patients as of June last year — compared with close to 3,000 on blood dialysis or hemodialysis (HD), said the National Kidney Foundation (NKF).
Asked how the foundation would expand on its outreach for PD, senior nurse clinician Tang Woon Hoe said: “We are working in this area, to slowly introduce PD to all nursing homes in Singapore. As the whole nation ages, I think the nursing home is one facility people will require. We also foresee that more of our PD patients may need nursing homes, so we are also looking at that.” [Read more]
From MedicalXpress
Why are kidney patients starting dialysis sooner?
Over the years, US patients with advanced kidney disease seem to be starting dialysis earlier in the course of their illness, which could mean that some patients will spend a significantly longer time on dialysis. To understand why patients might be initiating dialysis earlier, Ann O'Hare, MD, MA, Paul Hebert PhD (University of Washington), and their colleagues conducted a study using the electronic medical records of 1691 veterans in whom the decision to start dialysis was made at a VA medical center from 2000 to 2009.
The researchers found that, as for the wider dialysis population, patients in the study were starting dialysis with higher levels of kidney function in more recent years. Over time, there were no measurable differences in how sick patients seemed to be at the time of initiation to explain this trend or in the documented reasons for dialysis initiation. For example, neither the percentage of patients who were acutely ill nor the distribution of different types of clinical signs or symptoms present around the time of dialysis initiation changed appreciably over time. Cardiopulmonary and gastrointestinal signs and symptoms and weakness and/or fatigue were the most commonly documented. Also, while treatment decisions were occasionally driven by level of kidney function in the absence of other clinical signs or symptoms, this practice was no more common in recent compared with earlier years. [Read more]
PKD Policy
From The Parliament Magazine, Written by Tess Harris and Dr Richard Sandford on 20 February 2015 in Opinion Plus
PM+: Kidney disease must be included in EU action on chronic conditions
"Treatments to prevent or slow other forms of chronic kidney disease do not work with ADPKD. There are currently no approved medical treatments to delay the disease's progression"
Accounting for one in ten patients needing dialysis or a kidney transplantation at a cost of €1.5 billion annually in the EU – Autosomal dominant polycystic kidney disease (ADPKD) is one of Europe's leading causes of kidney failure.
ADPKD causes fluid-filled cysts to grow in the kidneys, causing enlargement, pain, infections and abdominal distention.
Most patients also have liver cysts and high blood pressure, with many at risk of bleeding in the brain and other complications.
This is a chronic, progressive, and incurable inherited disease with a profound and often unrecognised impact on patients and their families and represents many of the healthcare challenges of our times such as rising healthcare costs, an ageing society and inequalities in access to healthcare.
The European commission is quite rightly acting on the main chronic diseases, such as heart disease, cancer and diabetes.
We think that chronic kidney disease should also be included in such actions, as its growing health impact is well recognised and linked to cardiovascular disease and diabetes.
However, ADPKD justifies the need for specific measures that take into account its genetic basis, effect on multiple family members, relatively low prevalence compared with the major diseases already mentioned, and its multi-faceted and variable life-long course.
Treatments to prevent or slow other forms of chronic kidney disease do not work with ADPKD. There are currently no approved medical treatments to delay the disease's progression, nor are there any European-wide recommendations or common pathways to guide care.
Although national healthcare policies are the competence of EU member states, the commission can add value in improving ADPKD care by sharing best practice and supporting both research and the creation of centres of excellence.
A European-wide network of ADPKD reference centres would generate more research and education, and establish harmonised, integrated, patient-centred care pathways.
The commission is presently supporting the establishment of European Reference Networks (ERN) for rare diseases, as originally envisaged by the directive on patient's rights in cross border healthcare.
How different diseases should be grouped within such networks remains an open question but in our view, ADPKD merits the establishment of a specific ERN, given the number of affected patients and their needs.
The commission should also support research into disease-modifying treatments to extend and improve the lives of patients with this disease and to reduce the impact of the condition on healthcare systems. [Read more]
ADPKD causes fluid-filled cysts to grow in the kidneys, causing enlargement, pain, infections and abdominal distention.
Most patients also have liver cysts and high blood pressure, with many at risk of bleeding in the brain and other complications.
This is a chronic, progressive, and incurable inherited disease with a profound and often unrecognised impact on patients and their families and represents many of the healthcare challenges of our times such as rising healthcare costs, an ageing society and inequalities in access to healthcare.
The European commission is quite rightly acting on the main chronic diseases, such as heart disease, cancer and diabetes.
We think that chronic kidney disease should also be included in such actions, as its growing health impact is well recognised and linked to cardiovascular disease and diabetes.
However, ADPKD justifies the need for specific measures that take into account its genetic basis, effect on multiple family members, relatively low prevalence compared with the major diseases already mentioned, and its multi-faceted and variable life-long course.
Treatments to prevent or slow other forms of chronic kidney disease do not work with ADPKD. There are currently no approved medical treatments to delay the disease's progression, nor are there any European-wide recommendations or common pathways to guide care.
Although national healthcare policies are the competence of EU member states, the commission can add value in improving ADPKD care by sharing best practice and supporting both research and the creation of centres of excellence.
A European-wide network of ADPKD reference centres would generate more research and education, and establish harmonised, integrated, patient-centred care pathways.
The commission is presently supporting the establishment of European Reference Networks (ERN) for rare diseases, as originally envisaged by the directive on patient's rights in cross border healthcare.
How different diseases should be grouped within such networks remains an open question but in our view, ADPKD merits the establishment of a specific ERN, given the number of affected patients and their needs.
The commission should also support research into disease-modifying treatments to extend and improve the lives of patients with this disease and to reduce the impact of the condition on healthcare systems. [Read more]
Finding A Kdney
Callanan has been a member of the Catholic Woman’s League for almost 10 years, and serves on its board. Her friends in the CWL have rallied around her to find a donor by telling friends and setting up a Facebook page that has reached more than 3,000 people.
“Shirley is a very dear friend of mine and she is such a model of faith,” said Cece Holt, a longtime member of the CWL. “To look at Shirley, she is the epitome of good health, thanks to good nutrition and her commitment to daily exercise.”
Callanan and her husband, Tom, are members of the Cathedral of the Madeleine, and Tom is president of the Catholic Community Services board of directors.
The appeal for a donor started three weeks ago when Callanan’s doctor told her that it was time to start kidney dialysis; her kidney function is 5 percent and it should be 85 percent.
Callanan was diagnosed with PKD in 2009. PKD is an inherited disorder in which clusters of cysts develop primarily within the kidneys, resulting in reduced kidney function, which leads to kidney failure.
“My father died of PKD when he was 46, and his mother died of kidney disease in her early 60s,” said Callanan. “My sister also had PKD at age 60, and had a transplant five years ago. Our cousin was her donor; they are both doing well. Oddly, my mother lived to be almost 101.”
PKD causes high blood pressure, a symptom Callanan has had for 33 years. “My father had high blood pressure, so we were watching mine and slowly my kidney function declined,” she said.
PKD affects both kidneys; typically the onset of the disease comes between the ages of 50 and 60; Callanan is 68. The cause of the disease is unknown; there is no cure and treatment options are dialysis or a transplant.
A number of people have been screened as donors for Callanan, but so far she hasn’t been notified that there is a match.
“I would like to be a donor,” said Tom, but his blood type is incompatible with his wife’s.
The couple’s two children cannot be donors because they may carry the PKD disease.
“Having PKD, I worry about my children, my two grandchildren and my husband,” said Callanan. “I also worry about facing dialysis – it is so time consuming and I am active. I knew dialysis was in my future, but hearing it was so hard to take. I exercise six days a week and I work two days a week at the Madeleine Choir School.”
Callanan and her husband have attended a class to find out her options for dialysis at home, which will take nine hours a day, or at a dialysis center for four hours, three days a week. [Read more]
From NewsOK, McLoud, Oklahoma
The average kidney transplant costs about $250,000. Even with health insurance, which will cover a portion of the costs, Monholland, 42, faces significant expenses related to the surgery. For the rest of her life, she will need follow-up care and daily anti-rejection medications, which are as critical to her survival as the transplant, according to a news release from Emily Joyner, director of communications for the National Foundation for Transplants.
For fundraising support and guidance, Monholland turned to the National Foundation for Transplants. The foundation is a nonprofit organization that helps patients raise funds to pay transplant-related expenses.
“My heart goes out to Elizabeth,” said Kay Horne, fundraising consultant. “I know she’d love nothing more than to be healthy enough to spend more quality time with her husband, children and precious grandchildren. At NFT, we’re dedicated to helping her raise the funds she needs to focus on her health, not her medical expenses.”
PKD Meetings
From PKD Foundation of Canada
Location: Burnaby Lake Sports Complex: Meeting Room #2, 3677 Kensington Avenue, Burnaby BC
Join us as we review highlights from the recent Canadian PKD Symposium that was held in Toronto back in November. Topics included:
Eating Healthy with PKD
Learn the Facts: The Basics of ARPKD and ARPKD
Understanding Living Kidney Donation
Update on Canadian Clinical PKD Research
Dealing with the Emotional Aspects of Living with a Chronic Disease
For the later half of the meeting, we will be joined by PKD Foundation of Canada’s Executive Director Jeff Robertson via SKYPE, to discuss current and future goals of the Vancouver Chapter with respect to advocacy, education, support, awareness, fundraising and volunteer initiatives. This is a great opportunity to have your voice heard and to make the greatest impact in the PKD Community, both on a local and national level.
This presentation is part of an ongoing series of two-hour informational support meetings hosted by the Vancouver Chapter of the PKD Foundation of Canada. They are open to the public, free of charge and the venue is wheelchair accessible. Registration is not required. Free onsite parking is available.
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