PKD Blog

Da Vinci Robot peels grape

2009-05-05T10:07:00.000-04:00

No health insurance? Get help here

2009-02-14T09:13:00.002-05:00

From Cnn
Click below for full story.
http://www.cnn.com/2009/HEALTH/02/12/ep.health.insurance.help/index.html
Negotiating with doctors and hospitals is just one thing you have to learn how to do when your insurance disappears, says Steve Luptak, executive director of an assistance group called Healthcare Advocacy. "I've had so many people who've just been laid off coming to me for help because they've lost their insurance. They're so stressed, they're so depressed, they feel like it's the end of the world," he says. "But there are things you can do. It's not a futile situation," he says. Watch for more tips for the uninsured »
If you want to try to get new, affordable insurance, or find programs that offer you financial help for doctor's visits, prescription drugs and more, follow these steps:
Step 1: Get good advice
When you get laid off and lose your health insurance, you may need someone in your corner. Several places specialize in helping people find new, affordable insurance and free care:
Healthcare Advocacy
Patient Advocate Foundation
Patient Services Incorporated
Step 2: Search for affordable insurance
With advice from experts at the groups above, begin your search for affordable insurance. Start with COBRA, which means you continue with your employer's insurance, except now you're paying the entire premium on your own. You can learn about COBRA at the Department of Labor's Web site.
If you can't afford to go on COBRA, you're in good company; a recent study by the Commonwealth Fund found that only nine percent of people who are offered COBRA actually use it. Sometimes it's less expensive to buy your own insurance policy rather than going on COBRA. You can compare prices at ehealthinsurance.com.
Step 3: Get your child on SCHIP
Even if you have too much money to qualify for Medicaid, your children may qualify for SCHIP, the State Children's Health Insurance Program. Here's a state-by-state directory of SCHIP programs.
There are other government programs, too. Your entire family may qualify for insurance from a state high-risk pool if you live in a state that has one.
If you think you might quality for Medicaid, see this state-by-state Medicaid directory.
Step 4: Get help with prescription drugs
If you can't afford health insurance -- or if your insurance doesn't include good prescription drug benefits -- look for $4 generic drugs at many major supermarkets and drug stores. Also, your state may offer a discount drug program (after you click, scroll down to see Table 2). You can also check these private groups that offer prescription assistance.
HealthWell Foundation
FamilyWize discount drug card
Needy Meds
Rx Assist
Rx Hope
Chronic Disease Fund
Partnership for Prescription Assistance
The Access Project
Step 5: Find financial assistance for your particular disease
Many diseases have specific foundations that offer financial assistance.
Heart Disease: Heart Support of America
Kidney Disease: American Kidney Fund
HIV/AIDS: The Access Project
Hepatitis: The Access Project
Cancer: see this Empowered Patient for a list of services
Alpha-1 Antitrypsin Deficiency, Chronic Granulomatous Disorder, Huntington's Disease, Idiopathic Pulmonary Fibrosis, and Pulmonary Arterial Hypertension: Caring Voice Coalition
Other rare diseases: National Organization for Rare Diseases
Vision Care: EyeCare America and Vision USA
Step 6: Find free clinics
Federally funded health centers offer free care in both urban and rural areas. Put in your address here and find one near you.

Kidney News PKD Blog

2009-01-24T09:14:00.001-05:00

Plexxikon and Roche Enter Second Partnership to Develop PLX5568 ...WELT ONLINE, Germany - Jan 8, 2009... partnership will be the development of this small molecule inhibitor of Raf kinase as an oral therapeutic treatment for polycystic kidney disease (PKD). ...Roche, Plexxikon In Drug Deal Potentially Worth $335 Million EasyBourse.comRoche and Plexxikon Sign Agreement To Jointly Develop Polycystic ... RTT NewsPlexxikon teams up with Roche, eyes $335M to fight kidney disease VentureBeatFierceBiotech - TMCnet all 22 news articles » OTC:RHHBY

Local kidney recipient wants incentives for organ donationsBaltimore Examiner, MD - Jan 21, 2009"People will do it if they are related, and then beyond that, it takes a heap of altruism," said Jones, of Sparks, who has adult polycystic kidney disease. ...

Extremely Great and Incredibly CheapTheStranger.com, WA - Jan 21, 2009The history combined with a CAT scan showed the hereditary polycystic kidney disease, which can cause brain aneurysms. (The patient's mother had died of an ...

Net service offers chance to save lifeLos Angeles Daily News, CA - Jan 18, 2009"Our brother needs a kidney transplant because he has polycystic kidney disease," Regina wrote on the site. "Unfortunately all of his siblings were ...

ARDvark Blog Journal of Adhesion Related Disorder: Are you registered and ready to Vote!

2008-10-03T18:45:00.000-04:00

ARDvark Blog Journal of Adhesion Related Disorder: Are you registered and ready to Vote!

ARDvark Blog Journal of Adhesion Related Disorder: Healthcare and social security McCain vs. Obama

2008-10-02T17:03:00.000-04:00

ARDvark Blog Journal of Adhesion Related Disorder: Healthcare and social security McCain vs. Obama

Kidney News PKD Blog

2008-09-22T11:51:00.001-04:00

Tengion Announces Expanded European Orphan Medicinal Product Designation For Neo-Bladder Augment
22 September 2008
Tengion Inc., a clinical stage regenerative medicine company focused on the development of neo-organs and neo-tissues, today announced that the European Medicines Agency (EMEA) and the European Commission (EC) have formally...[read article]

Scientific Abstracts On Cystinosis Research Are Published In October Issue Of Pediatric Nephrology

Gyrus ACMI, An Olympus Company, Launches Lightweight & Ergonomic, Digital Nephroscope

Elevated Levels Of Uric Acid In Healthy People Suggests A Greater Risk Of Developing Kidney Disease

New Gene Variant Identified For Non Diabetic End Stage Renal Disease In African Americans

Stateline.org Examines State Ballot Measures Related To Health Care

Initiatives Seek To Raise Health Awareness Among Hispanics, Educate Blacks About Chronic Diseases, Recognize Culturally Tailored Insurance Programs

Gordon Brown Praises NHS Staff On Reductions In C. Difficile And MRSA Infections, UK

High Blood Pressure Takes Big Toll On Small Filtering Units Of The Kidney

Pepperoni Pizza And Pelvic Pain

Kidney Headlines PKD Blog

2008-09-09T07:01:00.001-04:00

Plexxikon Initiates Phase 1 Trial for PLX5568 - First-in-Class Drug For The Treatment of Pain and Polycystic Kidney Disease

New Solution For Malnourished Dialysis Patients

Study Points To One Cause Of Higher Rates Of Transplanted Kidney Rejection In Blacks

Robotic Kidney Removal Performed In Michigan

Hope rekindles for chronic kidney disease patientsVanguard, Nigeria - 11 hours agoThe potential for seals composed of the patient’s native tissue to reduce the inflammatory response may translate to a decrease in post-surgical adhesions.

Coated Catheters Reduce Infection Risk

American Kidney Fund's Disaster Relief Program Available To Dialysis Patients

Improved Understanding Of Kidney Diseases

ARDvark Blog Journal of Adhesion Related Disorder: FDA:Potential Signals of Serious Risks/New Safety Information Identified by the Adverse Event Reporting System (AERS)

2008-09-06T14:34:00.000-04:00

ARDvark Blog Journal of Adhesion Related Disorder: FDA:Potential Signals of Serious Risks/New Safety Information Identified by the Adverse Event Reporting System (AERS)

Kidnay News PKD Blog

2008-05-28T10:15:00.000-04:00

Op-Eds Address Presidential Candidates' Health Care Proposals

For Dialysis Patients, Catheterization Sites Do Not Carry Very Different Infection Risks
Preclinical Data Demonstrate Ability To Regenerate An Entire Bladder With Tengion Neo-Bladder Replacement(TM)

Access To The Bloodstream For Kidney Dialysis Not Improved By Reducing Blockage

Patients With Acute Kidney Injury Do Not Have Improved Outcomes With More Intensive Dialysis

Risk Of Diabetes May Be Increased By Anti-Rejection Drug Administered After Kidney Transplant

Striving Toward Better Diagnosis And Treatment Of Liver Diseases

Black Patients Face Higher Rates Of Death In Early Stages Of Chronic Kidney Disease

Prospective Study Of The Long-Term Effects Of Shock Wave Lithotripsy On Renal Function And Blood Pressure

Risk Of Death In Patients Waiting For Kidney Transplants Increased By Hidden Heart Condition

Vitamin D Linked To Reduced Mortality Rate In Chronic Kidney Disease

Plexxikon Presents Positive Results From Preclinical Kidney Disease Study

2008-05-28T10:13:00.000-04:00

Posted on: Thursday, 22 May 2008, 11:52 CDT
Plexxikon has announced positive data from preclinical studies of polycystic kidney disease demonstrating significantly reduced kidney disease following treatment with Plexxikon's novel drug candidate.
In the preclinical study of Plexxikon's polycystic kidney disease (PKD) drug candidate, doses of the drug candidate were administered orally daily for 14 days. A marked reduction in kidney cyst burden was observed in the treatment group compared to vehicle treated mice.

Levels of blood urea nitrogen, an indicator of kidney function, were also significantly improved in the drug-treated groups compared with the vehicle-treated group, suggesting that improved renal function accompanied reduced cyst growth in treated animals.
Plexxikon's novel small molecule kinase inhibitor is said to be a highly selective and potent inhibitor of Raf kinase, a critical mediator of PKD pathology.
Source: Datamonitor

Kidney Blog PKD Blog

2008-05-22T16:38:00.000-04:00

Cardiac Rhabdomyoma and Renal Cyst in a Fetus Early Onset of ...Journal of Ultrasound in Medicine (subscription) - 3 hours agoA postmortem examination showed polycystic kidney disease (PKD) and a cardiac rhabdomyoma, which is a prenatal marker of TSC. On the basis of the maternal ...

Yale's Rosenbaum Honored by University of SienaMedia Newswire (press release), NY - May 16, 2008Notable among disorders related to defective cilia are

Plexxikon Announces Preclinical Data Demonstrating Dramatic ...Business Wire (press release), CA - May 21, 2008These data were recently presented at the ISN Forefronts Symposium on Polycystic Kidney Disease in Montreal, Canada by Stefan Somlo, MD, CNH Long Professor ...

Kidney Headlines PKD Blog

2008-03-25T06:37:00.001-04:00

St. Jude Study Offers New Hope For Children With Kidney Tumors Deemed Inoperable

Transplant Societies Protest FDA Policy In American Journal Of Transplantation

LifeCycle Pharma Announces Positive Top-Line Results Of Phase II Clinical Trial Of LCP-Tacro In Stable Kidney Transplant Patients

PLC Systems Receives FDA Approval To Commence Pivotal Study Of RenalGuard(TM) In The U.S.

Novel Discovery By Einstein Scientists Could Lead To Much-Needed Treatment For Kidney Failure

Avera Medical Minute: National Kidney Month

2008-03-25T06:36:00.000-04:00

The rate of kidney disease has jumped significantly in this county since the Mid-1990's. Up 30%, an estimated 26 million people are living with chronic kidney disease. Since it's National Kidney Month, we talked to a Northwest Iowa woman who is living proof that living donors can make a world of difference.
Five years after Carol Boote from Hull, Iowa got the gift of life, the staff at Avera North Central Kidney Institute say she is the poster child for kidney transplants.
Nephrologist Dr. Tina Melanson says, "She has a wonderful life. So much better than the quality of life she would have on dialysis. And transplant for anyone, including Carol, offers a reasonable life expectancy, a normal life expectancy that would not be achievable on dialysis."
Carol was born with polycystic kidney disease, but doctors didn't discover it until she was treated for a kidney stone and that's when they noticed her kidney's were growing abnormally.
Carol says, "I was just this normal person who had kidney disease. It's hereditary but no one in my family had it. I didn't have diabetes, I was never on dialysis. I was lucky that way. They were able to track it for 15 years and before I needed a transplant."
When the time came, she says any one of her family members would have given her a kidney, but it was her sister she had an unspoken agreement with. She gladly gave up hers.
Carol says, "My sister Carla and I are only 15 months apart and all through our lives we've been like this (she holds up her index finger next to her middle finger). We were together all the time. If she was going out on the boat for the weekend I would joke with her to be careful. I might need that kidney today. "
Now part of Carla is always with Carol and Carol says she feels a million times better.
Read the Rest

Kidney Headlines PKD Blog

2008-03-10T07:15:00.000-04:00

NovaBay Pharmaceuticals Commences Phase I Human Clinical Trial For The Prevention Of Catheter Associated Urinary Tract Infections

Analysis Of A Computer Based Simulator As An Educational Tool For Cystoscopy: Subjective And Objective Results

Beyond The Abstract: Reliability Of The 24 H Sensation Related Bladder Diary In Women With Urinary Incontinence

Laboratory And Clinical Development Of Single Keyhole Umbilical Nephrectomy

Followup Of Patients With Interstitial Cystitis Responsive To Treatment With Intravesical Bacillus Calmette Guerin Or Placebo

Fresenius Medical Care Offers Tips For National Kidney Month

Bacteria May Reduce Risk For Kidney Stones

Risk Of Death From Acute Kidney Failure Reduced By 'Renal Assist Device'

Chronic Kidney Disease - Europe's Silent Epidemic

New Awareness And Prevention Series For Community Health Events Released By NIDDK

American Association Of Kidney Recognizes March As Kidney Disease Awareness Month

Kidney Stone Research To Be Aided By Mouse Model

SCORED Screening Test Accurately And Efficiently Identifies Individuals With Silent Chronic Kidney Disease

Transplantation Boosts Survival Rates For Young Kidney Failure Patients, Canada

LifeCycle Pharma Announces Positive Top-Line Results Of Phase II Clinical Trial Of LCP-Tacro In Stable Kidney Transplant Patients

Race, Insurance Status Affect Access To Transplantation And Kidney Disease Treatment

World Kidney Day is Coming

2008-03-10T07:14:00.000-04:00

How Are Your Kidneys Doing?
You know when you have a headache, sore throat, a cold or the flu. But would you know if your kidneys weren't working? High blood pressure and diabetes can damage your kidneys without any warning. If you're one of the millions of Americans who has chronic kidney disease and doesn't know it, March 13 or World Kidney Day, may be the day that saved your life. Check out your kidneys with a free screening and take the kidney quiz to learn more.
NKF
_______________________________________
Don’t Take Kidney Health for Granted
Learn about Amazing Life-Sustaining Kidneys this March
In a popular 1970 song, singer-songwriter Joni Mitchell asked, “Don’t it always seem to go that you don’t know what you’ve got till it’s gone”—a question that could have been aimed at people with chronic kidney disease (CKD). The kidneys play a crucial role in maintaining overall health but are rarely appreciated until they become damaged and can no longer do their jobs.
Unless Americans start doing more to protect kidney health, untold millions could soon be singing the same sad song. Recent studies indicate that 26 million adults suffer from CKD and that this number is likely to increase in the future. To raise awareness during National Kidney Month (March, 2008) and to mark World Kidney Day (March 13), the National Kidney Foundation offers a list of 10 key functions healthy kidneys perform.
For more information, click here .
NKF

Kidney News PKD blog

2008-02-29T07:40:00.002-05:00

Race, Insurance Status Affect Access To Transplantation And Kidney Disease Treatment
______________________________________

Funding helps patients receive treatment at home
Published: 29 February, 2008
SPENDING long hours hooked up to a haemodialysis machine is bad enough, but travelling miles for the privilege makes it even worse.
Yet that is the fate of most patients from the North who regularly have to make long journeys to Raigmore Hospital in Inverness, or its satellite units, to undergo dialysis.
But Spinningdale woman Glenys Munro has just been given the opportunity to undergo the lifesaving treatment – which removes harmful wastes from the blood, built up as a result of kidney failure – in the comfort of her own home.She is one of a handful of selected Highland patients to benefit from around £30,000 recently made available by NHS Highland.
The funding has enabled rooms in their homes to be converted and fully equipped as a dialysis suite. It has also led to the appointment of a dedicated home haemodialysis nurse, Chris Ridden, who is overseeing the new project.
Extensive work, including new flooring and fitting power points and plumbing, has just been completed at Keas Cottage where Glenys lives with her young daughter, Lynn.
Her consultant renal physician at Raigmore, Dr Stewart Lambie, is excited about the move to haemodialysis at home but said that, far from being a new development, it represented a turning back of the clock.
He explained: "When dialysis first started back in the 1970s everyone was on home haemodialysis, but then it swung away to hospital-based treatment.
"Now it's swinging back again, and just recently there has been a recognition that dialysing people more frequently at home is better for them."
Dr Lambie explained that Glenys and the other patients were chosen because they fitted certain criteria and were thought to have the most to gain.
"We've selected those who live furthest away from a dialysis centre who are going to be fit enough and able to learn how to set the machine up," he said.
"It's quite demanding for the patient to learn how to do it, but they have a lot to gain. Home haemodialysis is a lot more flexible and patients can undertake it whenever they like.
"They will also have more dialysis. Instead of the four hours, three times a week, hospital patients currently receive they will be able to do three hours, six times a week, which will make a huge difference to them.
"More frequent dialysis will mean they need to take fewer tablets and will also give them more energy and a better appetite."
Glenys, who works part-time at Mark Banham's tree nursery, had been suffering from frequent headaches and high blood pressure for some years before being diagnosed with polycystic kidney disease in 2000.
She said: "I'm delighted to have been given this opportunity. It's a lot more convenient as I will be home for my daughter and will also be able to continue working. I am being given the chance to live as normal a life as possible."
She paid tribute to her daughter Lynn and sister Heather, a local nurse, without whose support she said she would be unable to carry out home dialysis.
The home haemodialysis project will be assessed once it has been running for a while, and it is hoped further funding will be forthcoming to extend it to include more patients from the North.
"We have plans to significantly increase our home haemodialysis programme," said Dr Lambie.
Source

Erma Bombeck

2008-02-27T06:51:00.000-05:00

Born in Dayton, Ohio, Bombeck graduated from the University of Dayton in 1949 with a degree in English. She started her career in 1949 as a reporter for the Dayton Journal Herald, but after marrying school administrator Bill Bombeck, a college friend, she left the job and raised three children.

As the children grew she started writing At Wit's End, telling self-deprecating tales about the life of a housewife. It debuted in the Kettering-Oakwood Times in 1964. She was paid $3 per column.

Growing popularity led At Wit's End to be nationally syndicated in 1965, and eventually it ran three times a week in more than 700 newspapers. The column was collected in many best-selling books, and her fame was such that a television sitcom was based on her. The series, Maggie, ran for eight shows in 1982 before being cancelled.

In 1971, the Bombecks moved to Paradise Valley, Arizona.

Bombeck had autosomal dominant polycystic kidney disease. In 1996 worsening health forced her to have a kidney transplant, and she died of complications that year. She is interred in the Woodland Cemetery, Dayton, Ohio.

02/21/08

New Device to Track Organ Health

2008-02-27T06:50:00.000-05:00

New Device to Track Organ Health
Research by Basque scientists has led to a patented device, which measures the electric impedance and temperature of organs before transplantation, and can supposedly provide guidance as to the health of the organs.
By means of a microelectrode that measures the impedance and temperature of the tissues, the system enables the state of any organ to be monitored from the moment of its extraction, during its transport, to the moment of the surgical operation to transplant it into a patient.
The Ikerlan-IK4 device, designed in collaboration with the National Centre for Microtechnology (CNM-CSIC) and the Carburos Metálicos company and patented in conjunction with I2M Design S.A., uses a polymer substrate that represents a great advance in biomedical instrumentation, as it does not produce injury in the tissues during transport or surgical manoeuvres. It even opens a new way to control organ rejection, given that the microelectrode can remain implanted for a considerable time without causing injury.
The application has a number of prototypes already and has had clinical trials with organs of animals at Barcelona’s Hospital Clínic. Moreover, it is of particular interest for a process as delicate as an organ transplant, as it provides an objective indicator of the evolution of the organ in which, despite the conservation techniques used – whether with special liquids or in cold -, the duration of the viscera is highly limited (12 hours in the case of the kidney, eight for the liver and only four hours in the case of the heart). The device is used incorporated into a small electronic system which gathers and sends data by telemetry to an external system, enabling the verification of the state of the organ at all times.
Press release: Ikerlan-IK4 (CIC microGUNE Microfluidics Unit) patents device that measures optimum state of an organ prior to transplanting

Kidney Headlines PKD Blog

2008-02-26T10:25:00.000-05:00

Diazyme Introduces New Test For The Early Detection Of Kidney Disease

Repros' IND For The Commencement Of Phase III Studies Of Proellex(R) In The Treatment Of Anemia Associated With Uterine Fibroids Is Now Effective

Hyaluronan Treatment Of Interstitial Cystitis/Painful Bladder Syndrome

Calcineurin Inhibitor-Sparing Regimens In Solid Organ Transplantation: Focus On Improving Renal Function And Nephrotoxicity

Kidney Donor Age Linked To Aortic Stiffening

The National Kidney Registry And NewYork-Presbyterian Hospital/Weill Cornell Medical Center Announce A Triple Swap Starting A Donor Chain

American Nephrology Nurses' Association Announces National, Regional Election Results

New Independent Research Study Indicates That Cylex's ImmuKnow Test May Identify Kidney Transplant Patients At Risk For Early Acute Rejection

No Real Differences Noted In Kidney Failure Treatments

Before A CT Scan, Many Should Take Drug To Protect Kidneys

Stowers, KU Med scientists get grants to study kidney disease

2008-02-26T08:54:00.000-05:00

The PKD Foundation has given a two-year, $150,000 grant to a scientist at the Stowers Institute for Medical Research and a $50,000 fellowship to a University of Kansas Medical Center reseacher, both to study polycystic kidney disease.
The grants are part of $4 million the Kansas City-based foundation will spend on research in 2008.
Xiaogang Li, a senior research associate in the Stowers Institute's Rong Li Lab, will study the role of a number of enzymes, called histone deacetylases (HDACs), which play a role in cell-cycle regulation and in the formation and breakdown of cilia in the kidneys, the institute said in a release. Mutations that affect the function of cilia cause PKD. New information about the function of HDACs in cells may enable the identification of new treatment targets in PKD.
The fellowship will go to Cibele Pinto at the University of Kansas Medical Center's Kidney Institute, Amy Freaney, coordinator of the foundation's grants and fellowships program, said Thursday.
Polycystic kidney disease is one of the most commont life-threatening genetic diseases, the institute said. Dialysis and transplantation are the only treatment options for kidney failure, and the disease has no known cure.
"Xiaogang Li is a very dedicated scientist who has made important contributions to the research on Autosomal Dominant Polycystic Kidney Disease," Rong Li, a Stowers Institute investigator, said in the release. "This grant will enable him to continue his original work to understand the disease mechanism and to identifynewpossibilitiesfor disease treatment."
http://www.bizjournals.com/kansascity/stories/2008/02/18/daily30.html

Clinic targets disease in children

2008-02-26T08:53:00.000-05:00

By KAWANZA NEWSON
knewson@journalsentinel.comPosted: Feb. 17, 2008New parents often spend the first year of their child's life anticipating milestones such as smiling, babbling and rolling over onto their tummies.
But for Jennifer and Jeff Roubik, those moments never came. Instead, their son lay listless. His skin was tinted gray as his kidney function rapidly deteriorated from a genetic disorder called autosomal recessive polycystic kidney disease.At 3 months, Gabriel had one kidney removed. A month later, he lost his second kidney and began dialysis. Each day, his parents wondered if their son would make it to his first birthday."Those thoughts kept coming in," said Jeff, 37, of Elkhorn. "He also had heart problems because his blood pressure was out of control. Things were not pretty."Though researchers still don't understand what causes most pediatric kidney disorders, the opening of a nephrology clinic and lab at the Children's Research Institute affiliated with Children's Hospital in Wauwatosa will soon provide some answers.Using a $4.6 million grant from the National Institutes of Health, a group of Medical College of Wisconsin researchers will design studies to better understand the basic molecular and cellular mechanisms associated with pediatric kidney disease so they can develop therapies to prevent and treat the condition.This work will then be quickly translated into clinical trials using childhood kidney disease patients."This is a very exciting time," said Ellis D. Avner, director of the Children's Research Institute and associate dean of research at the Medical College. Read More

In His Own Words: A Donor's Experience

2008-02-25T10:36:00.000-05:00

At a recent Walk for PKD, my wife and I stopped at the transplant information table and talked to the lady at the table and some others who stopped by. They were all organ recipients, or potential recipients, and shared their experiences and conditions. It was amazing how different their experiences were. Listening to others made me appreciate our transplant experience, which I would like to share from another perspective. I was my wife's living donor and want to encourage others to consider this option and let them know what to expect.
It's been over a year since I donated a kidney to Cris. My wife suffered from Polycystic Kidney Disease and was getting close to renal failure in the fall of 2005. She suffered chronic discomfort and was subject to numerous kidney and urinary tract infections for several years. Her kidneys were very large and covered with cysts. Cris' mother suffered from the same disease and went through years of dialysis and a failed transplant, so we were familiar with our options. Cris' condition required the removal of her kidneys before a transplant could be performed. This created some timing issues that we wanted to avoid. The kidneys would have to be removed and a recovery period would be required, then she would have to be put on the waiting list for a kidney. This could result in years of dialysis. I told Cris I wanted to be tested as a possible donor. This way, everything could be planned and scheduled. OrientationWe live in Winston-Salem, North Carolina and Cris was lucky enough to be a patient of Wake Forest University Physicians and North Carolina Baptist Hospital. The system this transplant team employs seems more patient-friendly than those described by other transplant patients. We attended an orientation presented by a transplant coordinator that included videos, handouts, and details and tips from some of her past experiences with other transplants.
We also met with a social worker. He was trying to determine if Cris was a good candidate for a transplant from an emotional point of view. How did she feel about another person's organ inside of her body and would she follow the doctors' instructions and regularly take her medication? I was given a two-page list of all of the possible negative outcomes from donating in order to test my resolve. We were told that donors sometimes change their minds at the last minute, and part of this interview was to make sure I wouldn't. The majority of these risks are consistent with those involved with any surgery that includes anesthesia. The only one I really had to consider was the risk that I might develop a kidney problem later in life. There is a history of high blood pressure and diabetes in my family, so it could be relevant. As always, people must weigh the risks when donating an organ.
Finally, we met with the financial representative from the hospital. She explained that Medicare covers the cost of the transplant and that Cris would remain covered for three years following the transplant. During this time, she could apply for the Medicare D prescription plan. She went over what was covered and all co-pays involved with the transplant. Her main objective was to make sure we could pay for Cris' prescriptions, since many transplant rejections are a result of a failure to take the medication. It's a shame that money is an issue when trying to extend a life or improve the quality of that life. There are a lot of economic considerations for the recipient, but this is about the donor experience. I never received a bill for anything related to my care from the initial test to my final check-up four months after the surgery.
Tests and Preparation From the information collected at these interviews, the transplant team decided that we were emotionally and financially equipped for the transplant. I was scheduled for a series of tests to determine if I was a match and healthy enough to donate. I had an EKG, a chest x-ray, and they drew nine vials of blood for tests. I was in the hospital less than two hours for all of this. We were a blood type match, matched 2 out of 6 antigens, and passed the cross-match test. It was a go!
At first, my meeting with my surgeon was not what I expected. He again made me aware of all of the risks. It was as though he was trying to talk me out of the operation. It was just one more test of my resolve, and once he was convinced, the examination proceded in a more positive light. He explained the procedure and the rest of the tests I would need. The donor is assigned a different surgeon than the recipient to reduce the likelihood of a conflict of interest. My welfare was the main concern of my doctor, just as my wife's health was her doctor's responsibility. There were two things he informed me of that concerned me I would have to get down to 220 pounds and deal with a catheter after the operation. Since I weighed over 260 pounds, I knew I had my work cut out for me. If I didn't lose the weight, he still might be able to remove the kidney, but not laproscopically. The risks and recovery time from laproscopic surgery are significantly less than with regular surgery.
From the information we read and discussions with our doctors, we learned that there are some advantages for the recipient of a kidney from a living donor over one from a cadaver. There is a lower rejection rate with a "live" kidney. The "live" kidney starts working easier because it is exchanged so quickly that it may not even stop functioning. Typically, the donor and the recipient are operated on in adjoining rooms separated only by a door. The donor goes in ahead of time, followed shortly by the recipient, and by the time the kidney is removed, the recipient is ready. It can be as short as ten minutes that the kidney is actually out of a body.
The final tests involved the injection of a fluid through an IV and the inspection of my kidneys at work. My kidneys were x-rayed before the fluid was introduced. After the fluid was injected, I was put into something similar to a CAT scan to examine my lower body. My kidneys were X-rayed again. I was asked to empty my bladder, and X-rayed one last time. Everything was fine.
Cris had her kidneys removed in March of 2006 and had about a two-month recovery period. By May, I had lost 40 pounds and was at 225. The doctor said this was close enough, so blood was drawn to verify one last cross-match test and the transplant team met to schedule the date for the operation.Surgery and RecoveryCris and I were admitted to the day hospital Monday afternoon for our Tuesday morning surgery. They took blood once again you have to get used to getting stuck. Since I wasn't going to get to eat the next day, the nurses brought me lots of snacks before my midnight deadline for eating and drinking. If you're donating an organ to your wife as I was, every female you come into contact with during this experience will think you're the nicest guy in the world and give you all the attention you want. We were on the same floor, so we spent some time together that night and Cris came to see me off when they came to get me about 6 a.m. I was taken to the preparation room where the anesthesia was administered and the next thing I remember was waking up in the recovery room with my daughters by my bed. Both of our surgeries were done and they told me Cris was doing fine, too.
When I woke up I was drowsy and drifting in and out. There was a device blowing oxygen below my nose. I can't tell you how long I spent in the recovery room. When I got into my regular room I felt no ill effects from the anesthesia, but was extremely thirsty.
Tuesday night I started to experience intense pain in my left shoulder. It scared me a little because I've always heard that pain in the left arm can be associated with a heart attack. The nurses and interns that visited had no explanation, but assured me there was nothing to worry about. It was particularly painful when I used the "incentive" breathing apparatus they give you to prevent blood clots in your lungs. I also received Hepron injections after the surgery to reduce the risk of blood clots. Wednesday afternoon I finally saw my doctor, who explained the pain. When they do the laproscopic procedure, the area of the surgery is inflated with gas to allow more work space. During recovery, this gas accumulates in the upper body, resulting in some pressure and consequently, some pain. I was scheduled to go home on Thursday, but had to stay and extra day because of a fever. The shoulder pain was gone by the next evening.
The most difficult part of the recovery was dealing with the healing of the six-inch or so incision made across the lower abdomen where the kidney was removed. Your doctor will want you to spend some time sitting up in a chair and walking as soon as possible. This was much easier after they removed the catheter Wednesday morning. There was no pain in having the catheter in or having it removed, it was just awkward to maneuver around with it in place. You can't really sit up, so you learn to get on your side and swing your legs to get in and out of bed. The first 24 hours I had a button that allowed me to dispense pain medication through my IV. I would give myself a dose before getting out of bed, but didn't need it when just lying in bed. They also wanted me to wear leg massagers whenever in bed, so I had to deal with getting them off and on every time I got up. It's the "sit-up" motion that is painful for a few weeks.
Long-Term RecoveryWe were both discharged Saturday morning. Fortunately, my sister came to stay with us for a couple of weeks during our recovery. I thought Cris and I would be able to handle all of the simple household tasks, but I was wrong. When you can't bend over or drive, and need to spend most of your time in a reclined position, you need some help. We'll never be able to thank her enough. The only medications I was given were a stool softener and some pain medication. For the first two weeks after the surgery, I found that I could sit up at the computer or watch TV for an hour or two, but then had to lie down for awhile. Cris and I would go for walks around our development, but it was pretty exhausting. After another two weeks, though, I was ready to return to work. Final ThoughtsI have described the details of my experience so that potential donors can know some of the things to expect. While I talk about some pain and complications, none of what I went through was severe enough to prevent me from doing it again (if I could) or recommending it to others. I will have my wife for many years to come, and my kids still have their mom. Cris will not have to endure the ordeal of dialysis and can experience a better quality of life. When people hear what I've done, they seem to be genuinely impressed with the generosity of my actions. That's nice, but if it inspires anyone else to do the same, it's great! I certainly didn't donate for any personal recognition - it's just the right thing to do for someone you love. Our social worker put another way that also makes the act worth doing. He said that donation of this type is like donating two kidneys one for Cris, plus the one that she would have gotten that went to someone else. I hope people out there will consider being a living donor.
Share your story with the PKD Foundation.

Kideny News PKD Blog

2008-02-12T10:20:00.000-05:00

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4 Million Dollars Award To Improve Detection Of Acute Kidney Injury After Cardiac Surgery

Cleviprex Demonstrated Rapid, Precise Blood Pressure Control In High-Risk Patients, According To New Analyses

Studies On Urgent(R) PC To Be Presented At The 2008 Society Of Urologic Nurses And Associates Annual Symposium

Black Men Most Likely Kidney Disease Patients To Have Uncontrolled High Blood Pressure, Study Finds

Teva Announces Tentative Approval Of Generic Flomax(R) Capsules

Healthcare Providers Direct, Inc. Announces First Accurate And Effective Rapid Point-of-Care Screening Test For Microalbuminuria

Mechanisms Of Hemostatic Failure During Laparoscopic Nephrectomy: Review Of Food And Drug Administration Database

Kidney Patient Functioning With Donation from 2-Year-Old

2008-02-12T09:31:00.000-05:00

February 10th, 2008 @ 7:46am
by Associated Press
TUCSON, Ariz. (AP) _ It gave this kindly man pause _ that the two kidneys that could heal his body and give him a free and active life would come from such a young child.
But in yet another landmark organ transplant at University Medical Center, William Diehl _ a Willcox grandfather _ was given kidneys donated by a 2-year-old on the morning of Dec. 10.
``It kind of bothered me _ that the organs had to come from a baby,'' he said. ``I had to think about that.''
But the fact is that when transplant surgeons finally figured out that they actually could use these very small organs to save adult lives, it has put a small dent in the horrific shortage of donor kidneys in this country.
Right now, more than 74,000 people are waiting for kidneys. But fewer than a quarter will get one in the coming year.
``These baby-to-adult transplants are not frequently done _ usually at the major transplant centers,'' said Dr. Rainer Gruessner, University Medical Center's new chief of surgery. Gruessner has brought cutting-edge experience as an abdominal transplant surgeon to an effort to rebuild the hospital's transplant program.
``But the issue is so many patients waiting on the kidney list,'' he continued. ``Using these small donors for adults is one way to expand the kidney transplants we can do.''
For a man of 56, a single kidney from a child so small would not do the job. So surgeons instead transplant the child's entire kidney block _ the two kidneys connected by the major blood vessels _ into the adult.
This is known as an ``en-bloc'' kidney transplant _ a technically challenging and somewhat riskier surgery than the far more common transplant with a single adult donor kidney.
Only about 100 en-blocs are done per year in this country, using donors younger than 5. As the surgical techniques have improved _ to deal with hooking very small organs and vessels up to an adult-size body _ several studies have concluded that the operations are getting excellent results and should be done more often.
``In the current era of severe organ-donor shortage, use of en-bloc technique allows for valuable utilization of deceased donor kidneys that might otherwise be discarded,'' states an analysis of this transplant in a 2005 issue of the American Journal of Transplantation.
But chief among the en-bloc risks is a higher threat of a blood clot, which can be triggered by the child donor's very small blood vessels.
``That was the problem that caught my attention,'' said Diehl, who is doing so well post-transplant that he actually made a trip to Willcox a couple months ago.
Since the transplant, he no longer needs dialysis _ that three-times-a-week grind of hooking yourself up to a machine for several hours to do the work of failed kidneys. It's a tedious procedure that leaves patients drained of energy.
Diehl had been on dialysis for a year and a half _ ever since his kidneys failed due to polycystic kidney disease. He probably has had the disease all his life but was not diagnosed until he was nearly 40. He finally lost one kidney to the disease in May 2006, with the other all but dysfunctional.
Diehl, who has four grown daughters and seven grandchildren, is regaining strength and enjoying new freedom to be with his extended family.
``He's a basically healthy man in good shape, and we wanted to go ahead with this when the kidneys became available,'' Gruessner said.
``The whole aim of a kidney transplant is to get patients off dialysis, and we didn't want to wait,'' Gruessner said. ``With the donor shortage, that wait could have lasted many more months.''

Compound prevents cancer in lab

2008-02-11T09:34:00.000-05:00

James CoburnThe Edmond Sun
EDMOND — A culmination of 17 years of research has led scientists at the University of Oklahoma Health Sciences Center to discover a synthetic compound that prevents cancer in the laboratory.This discovery is not serendipity but a carefully controlled strategy, said Doris Benbrook, principle investigator and researcher at the OU Cancer Institute.Cancer kills more than 7,600 Oklahomans each year, according to the American Cancer Society.Oklahoma State University chemist Darrell Berlin synthesized compounds similar to vitamin A, but different by one atom. “I would take these compounds and test them on cancer cells and normal cells to try and find ones that would kill the cancer cells without harming normal cells,” Benbrook said.She modified the chemical structure of the compound to optimize the killing of the cancer cells and to avoid harming the normal cells. “It’s been changed so much that it’s no longer a vitamin A derivative,” she said.Planning clinical trials is part of Benbrook’s long-term goals with the compound. But FDA approval is needed and there is not yet a drug ready for testing. She will apply to the National Cancer Institute to support pre-clinical testing. Tests conducted by OU researchers have found the compound effective against all the 12 types of cancer they have used it on. Among the diseases and conditions being studied for treatment are polycystic kidney disease, kidney cancer and ovarian cancer.“The National Cancer Institute was impressed by lab findings — that (the compound SHetA2) can prevent transformation of normal cells into cancer cells,” she said.Testing costs millions of dollars and is required to start clinical trials, she said. More than $2 million already has been invested in the research.Cancer survivor Tammy Padgett of Edmond said federal funding for cancer research is critical for improving cancer treatments and in curing cancer.Breast cancer funding saved her life, said Padgett, whose type of breast cancer was successfully treated by the drug Herceptin. She celebrates being free of cancer for six years.Benbrook also envisions that the compound could lead to an application in treatment after primary surgery and chemotherapy to prevent the reoccurrence of the cancer.“Research will keep on going,” she said. “This is not the magic pill, but potentially another compound down the road might be the magic pill. But we know we’re going in the right direction.”GO TO http://w3.ouhsc.edu/benbrooklab for the Web page of Doris Benbrook’s lab.