Tuesday, August 20, 2013

KIDNEY STORIES: KIDNEY FOR BILL




Call 617.525.6866 (Brigham and Women's Hospital, Boston MA) and say you'd like to test for Bill Dobbyn. Compatible Blood types: B or O
Description
My father has Polycystic Kidney Disease and is in need of a LIVE kidney donor. Friends and family have tested, but we have been unable to find a match. I am the best match for my father, but because I have the potential of developing the disease someday, I am unable to donate at this time.

My father is a Christian man of real integrity and loyalty. He is a father, husband and grandfather devoted... to his family. He is probably the only plumber in the world who charges fairly and shows up on time.

If it were me that needed the kidney, I wouldn’t have to put up a Facebook page to get one. He would have given me his a long time ago. I saw that another woman on the news found a donor and am praying that he finds one too.

We know that God has a special plan for his life. If you are interested in learning more about Bill, call and talk to him 617.913.6539. If you are interested in talking anonymously to the BWH transplant team, call them at 617.525.6886.

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KIDNEY STORIES: FIND A KIDNEY FOR FRED


Fred is blood type O. If you are interested in donating, please call 305-355-LIFE (5433), ask for the Living Donor Team, patient is Fred Southron
Description
If you are someone you know is interested in being a donor, please call University of Miami 305-355-LIFE (5433), ask for the Living Donor Team, and let them know the patient is Fred Southron.

Fred lost his right kidney to cancer as a 20 year veteran of the Philadelphia Fire Department. Fred's left kidney is failing due to the anti-rejection drugs he has taken as required to keep his 1996 (17 year...s) liver transplant from rejecting. His liver transplant was required due to Hepatitis C he was infected with while working as Firefighter/EMT for 20 years.

Fred discovered from donating blood to the Red Cross that his liver was sick with unknown disease. The City of Philadelphia forced Fred to retire with a "non-work" related illness. Now both cancer and Hepatitis C are considered by Pennsylvania work laws to be classified as "work-related" unless proving to be otherwise.
 
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Monday, August 12, 2013

KIDNEY STORIES: A KIDNEY FOR KEN

After 9 years of being sick with a kidney and pancreas transplant, Ken is in dire need of another kidney transplant. He is generous with his gift of dentistry (helping patients in need all of the time) and now it's time for him to receive the help...
Description
We are trying to find a kidney match live donor for Kenny. He was diagnosed with Type 1 diabetes at age 3. Almost 12 years ago he had to start dialysis and 9 years ago he had to have a kidney and pancreas transplant. That kidney has failed without a reason and Kenny has now started back on dialysis. His blood type is A + and his transplant team is at Ohio State Medical Center in Columbus Ohio.... We will be posting transplant information, along with other kidney information on our page. We will also be having an on-going fundraiser for Kenny to help him through this difficult time. He has a dental practice and finds it difficult to go into work due to health complications. Please send us your comments or questions and we will get back to you. Thank you
 
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KIDNEY STORIES: PRAYERS FOR BABY THEODORE


Theodore was born with renal failure. This is his story.


Teddy’s Brief History

Our Teddy was born via induced (but otherwise natural – go mama!) labor at 38 weeks gestation due to extremely low amniotic fluid. We knew he had severe hydronephrosis in one kidney, and there were conflicting reports about the other kidney: it was just fine, it was missing, it was small, it had no blood flow, it looked good, who knows. When he peed after birth, the attending pediatrician assumed things were fine and we didn’t push it.
At 6 days, we had a scheduled consult with a ped nephrologist and discovered that Teddy was in kidney failure, his right kidney was small and nonfunctional, and his left kidney was barely functioning, if at all. We were transferred to the UI Hospital in Iowa City via ambulance and stayed there for three weeks getting him stabilized.
Since then, he’s had a rough journey.

Here is a current diagnosis list
Vesicoureteric reflux (urine flows back from his bladder to his kidneys, VUR) (Teddy has stage 4 reflux on one side, and 5 on the other. That’s the worst it can be, and then one step down from the worst. His ureters are large and twisty, rather than narrow and straight. Technically, it’s called hydroureter.)
Reflux nephropathy (kidneys damaged from the VUR)
UPJ obstruction (the kidney that isn’t too small had an obstruction at its outlet, which was fixed with T’s first surgery when he was 8 days old.)
Congenital renal dysplasia (one kidney is small and underdeveloped)
Chronic Kidney Disease, Stage V (this is the big “what’s wrong.” Everything else is either what caused this or what is caused by this. This is also known as kidney failure)
Premature Birth (36 weeks, induced for lack of fluid)
Anemia of chronic kidney failure (his kidneys don’t make the hormone that tells your body to make red blood cells)
Feeding by G-Tube (he is 100% tube fed)
Low Gammaglobulin Level (we’re still uncertain what this means)
IgA deficiency (though this is on his diagnosis list, I’m not sure if it’s true.)
High Blood Pressure (kidneys regulate blood pressure, and T was diagnosed with hypertension when he was something like 6 months old)
Hearing Loss (this has been resolved with the tubes)
Vomiting (ha ha ha)
All sorts of hyper- and hypo- things from his labs. (phosphate, calcium, etc)

Here are the surgeries he’s had
12/4/11 Left dismembered pyeloplasty with placement of percutaneous nephrostomy tube and circumcision.
12/7/11 Broviac placement; PD catheter placement
12/21/11 Broviac replacement (malpositioned)
2/2/12 G-tube placement, open procedure, Mic-key button
3/2 Broviac removal (infection)
3/7 Bard PowerPort placement
3/30 PowerPort replaced (malpositioned), PD Catheter replaced (malpositioned)
8/10 Tubes
9/14 PD Cath replaced
10/8 PD Cath revised, tacked down. Port removed.
11/5 PD Cath replaced.
11/14 PC Cath removed
12 surgeries before he turned 1.
Hospital Admissions:
11/26-11/29: birth (4)
3 days at home
12/2-12/23: NICU (22 days)
40 days at home
2/1-2/9: Gtube (9 days)
16 days at home
2/26-3/9: Broviac infection (13)
16 days at home
3/26-4/6: dehydration (12)
95 days at home
7/11-7/17: line infection (enterococcus) (7)
25 days at home
8/12-8/13: pre-surg, cancelled for cdiff (2)
22 days at home
9/5-9/18: line infection (enterococcus and ascintobacter), PD cath replacement (14)
13 days at home
10/2-10/13: line infection (ascintobacter), port removal, PD cath replacement (12)
19 days at home
11/3-11/15: dehydration, then catheter replacement, then fungal peritonitis (Candida Parapsilosis), then cath removal. (13)
69 days at home
He’s had three bouts with C-Diff, two IVIG infusions, some 3-4 iron infusions.
Last time I saw a number, his estimated GFR (a measure of kidney function) was 8 (that’s pretty low).
That’s it in a nutshell. Happy to answer questions.
If you want to make a donation to Teddy's fund, you may do so here: http://patients.transplants.org/teddyreid
Description
Theodore Joseph Reid was born November 26, 2011. He was born early via an induced but otherwise natural labor due to low amniotic fluid, and it was discovered at 6 days old that he was in kidney failure. Teddy is holding his own for now, and is working on growing big enough to receive a kidney transplant. Please pray on behalf of this precious baby boy and his parents, brother and sister. Let's shake the heavens with our hearts and voices. "Where 2 or more are gathered in my name, I will be among them"
 
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Sunday, August 11, 2013

KIDNEY STORIES: MY INTERVIEW ON CMS CUTS TO DIALYSIS PATIENTS


Article that Jerry Davich wrote about me protesting the CMS cuts to Medicare Dialysis Patients:http://posttrib.suntimes.com/news/davich/21770756-452/jerry-davich-dialysis-patients-drained-by-proposed-budget-cut.html

Jerry Davich: Dialysis patients drained by proposed budget cut

JERRY DAVICH August 10, 2013 11:02PM

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James Myers sat quietly in a large chair as his blood was artificially cleansed of waste by a whirring dialysis machine that beeped every few seconds.

With a blanket draped over his legs and a catheter connected to his chest, Myers sat patiently inside the Fresenius Medical Center in Crown Point. He visits there three times a week for at least four hours each time to undergo hemodialysis, which replaces the function of his failing kidneys.

The 59-year-old Crown Point man suffers from polycystic kidney disease, which took the lives of several family members, including his father. Though Myers was diagnosed in his younger days, his positive lifestyle choices the past three decades only delayed the inevitable.

His genetic fate caught up to him last summer. He’s been on dialysis ever since.

“I have no choice. You either submit to dialysis or you die,” said Myers, who also is on three kidney transplant lists.

Myers is among more than 400,000 Americans with irreversible kidney failure, and roughly 85 percent of them rely on Medicare’s end stage renal disease benefit for life-sustaining dialysis care. But a recent proposal from the Centers for Medicare and Medicaid Services would cut Medicare’s benefit reimbursement by 9.4 percent, causing an uproar by dialysis patients and their advocates.

 “I am concerned that this cut will force some facilities to close and that other facilities will eliminate patient-focused programs, services, and benefits that improve patients’ health and quality of life,” Myers wrote to region lawmakers last month.

“I am writing to urge you to intervene with CMS to ensure that this proposed rule — when it does become law — is reasonable and protects my access to quality care,” he wrote to me.

Since becoming a dialysis patient, Myers has become a state advocate for the National Kidney Foundation, and an ambassador for Dialysis Patient Citizens and the Polycystic Kidney Disease Foundation. In other words, he’s a vocal activist on behalf of thousands of dialysis patients throughout Northwest Indiana.

In March, he traveled to Washington, D.C., and last week he met with U.S. Rep. Pete Visclosky to voice his concerns over the proposed budget cut, totaling a reported $970 million in 2014.

“These cuts threaten to close smaller rural clinics and this would undoubtedly affect this clinic in Crown Point,” he said while his blood filtered through a dialyzer. “If local facilities close or consolidate, my fellow patients and I will undoubtedly feel the effect. Many of them arrive here with canes, in a wheelchair, or in an ambulance.”

I contacted the Centers for Medicare and Medicaid Services, or CMS, and a spokeswoman shared with me a fact sheet explaining the complex methodology used to determine the budget cut proposal.

“The fact sheet explains the factors that adjusted the payments for end-stage renal disease, including provisions in the American Taxpayer Relief Act that directs CMS to adjust the payment bundle to reflect a decrease in the use of certain drugs and biological,” CMS spokeswoman Tami Holzman told me.

Based on 2007 claims, CMS’s detailed analysis showed an average payment per treatment of $83.76 for drugs and biologicals compared to 2012 claims reflecting a lesser payment, $51.42 for drugs and biologicals. In short, CMS subtracted the 2012 figure from the 2007 figure, resulting in a difference of $32.34.

“This amount is then reduced by the standardization, the 1 percent outlier, and the 98 percent budget neutrality adjustments, which results in an amount of $29.52,” the fact sheet states. This figure is then used to reduce the proposed 2014 base rate per treatment of $246.47, resulting in the budget cut proposal.

In 2011, CMS spent $10.1 billion on roughly 365,000 end-stage renal disease beneficiaries, according to the Government Accountability Office. And Medicare is expected to save nearly $5 billion over the next 10 years if the cut is approved.

Critics of the budget proposal say previous cuts by CMS, including a 2 percent reduction in payments in 2011 and the more recent sequestration cuts, are already taking their toll on dialysis patients and facilities.

“We are concerned that payment reductions risk reversing the progress that has been made toward increasing access to home dialysis,” states a letter to Congress by the Alliance for Home Dialysis.

“We are appalled by the CMS proposal to dramatically reduce Medicare funding for the care of dialysis patients, which will put at risk both patient access and quality of care,” stated one patient advocacy group, Dialysis Patient Citizens, in a prepared statement.

“Continued cuts may deter providers from opening additional facilities at a time when the number of ESRD patients continues to rapidly grow,” states one petition from the National Kidney Foundation.

“I speak on behalf of my clinic mates, who are too sick and unable to speak for themselves,” Myers told me. “I urge you to ask CMS and your lawmakers to revise its proposed rule so funding levels are adequate enough to cover the cost of dialysis care.”

If you think this issue doesn’t involve you, think again. More than 26 million Americans have chronic kidney disease — and that figure is growing each year — with diabetes the No. 1 cause. Plus, one in three Americans are expected to develop kidney disease so it could be any of us someday sitting in the same chair as Myers.

Myers has created an online petition for supporters to voice their opposition to the cut, here: https://www.change.org/petitions/center-for-medicaid-and-medicare-services-cms-withdraw-the-proposed-cuts-to-dialysis-centers-and-esrd-patients.

“It only takes a minute of your time and we only have until Aug. 30 to petition so the time to act is now,” he told me on my latest Casual Fridays radio show.

Listen to the entire interview with Myers at www.lakeshorepublicmedia.org. Visit www.post-trib.com to watch a video of Myers explaining his concerns and his crusade to challenge the proposed Medicare budget cut.

Connect with Jerry via email, at jdavich@post-trib.com, voice mail, at 713-7237, or Facebook, Twitter, and his blog, at jerrydavich.wordpress.com.

VIDEO LINK: http://video.suntimes.com?freewheel=58285&sitesection=posttribune&VID=25019679