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A Life Needs Saving Right Now. Will You Help?

Most often I write about transplants that almost everyone has heard of like heart, lung, kidney, liver and pancreas.  Today is different though. This is about how a new discovery that removes then replaces  some of a patient’s adult stem cells back to the patient and stop, even reverse the effects of Multiple Sclerosis (MS).  Studies indicate this is an amazing breakthrough.  The same procedure is being studied for use with other diseases as well.

This blog is about Emily Lori Cameron a cancer survivor who now has Multiple Sclerosis (MS) which presents her with new challenges every day.  Each day she asks herself, “Will I be able to speak clearly, will my thoughts be clear, will I be able to walk, use my hands or even know where I am and what I am doing?”   Medicare has approved a new procedure for Lori but she must raise $42,000 to pay her share of the cost.  More about that in a bit but first a little about MS.

Multiple Sclerosis is a terrible disease.  In effect the immune system attacks the protective lining around nerves, shreds it and causes communication between brain, nerves and body to become tangled and ineffective.   For example, the brain might send a message to the legs to begin walking but along the way the message gets garbled and what the legs receive is a command to relax so you fall down.  Up until the last couple of years  standard treatment which includes drugs and some physical therapy only delays the inevitable. It does not stop the progression of the disease so it certainly can’t reverse it.

Now there is a new procedure that uses one’s own adult stem cells to not only stop the disease in its tracks but to even reverse many of the existing symptoms.   This new procedure is approved by Medicare and initial studies have indicated that it is very effective, some have even called it a cure for Multiple Sclerosis.   I can’t tell you exactly how this works but apparently they will withdraw from Lori a certain amount of her adult stem cells and store them for a short while. Then she will undergo chemotherapy that will destroy the old immune system. When that is done the original adult stem cells withdrawn from Lori’s body will be injected into her again to create a new uncontaminated immune system. Initial studies indicate success rates in the high 90 percent range. Here’s a link to tell you more http://www.northwestern.edu/newscenter/stories/2009/01/burtms.html

So far the new treatment is approved for use in the early stages of MS so it is entirely possible that if Lori’s condition gets considerably worse, which is entirely possible, she could be removed from the approved list.  Lori’s sister has already experienced the treatment and is doing wonderfully well.  There is an urgency to Lori’s condition because we must, must, must raise the money as soon as possible so there is no chance she will be removed from the transplant list.

Just today I posted a new video on YouTube, it’s only 9 minutes long and effectively tells Lori’s story and why your donation is so critical and must be done so quickly.  You can find it at http://www.youtube.com/watch?v=KrBJoCdIKto.  Or to be even faster you can just go directly to the highly respected National Transplant Assistance Fund (NTAF) and donate directly.  Lori has been approved by NTAF and is registered there www.ntafund.org/contribute/ Secure credit card: 800-642-8399.   You can look her up under the name Emily Lori.

This is probably the most urgent appeal I have ever made.  Lori is a nurse and a very compassionate human being.  She has sacrificed a great deal in order to help others, never asking for anything for herself but now the situation is becoming desperate.  We simply must raise $42,000.  That’s a lot of money but when that’s all it takes to save a human life it should not be an insurmountable obstacle.  Please dig deep…forsake the Latte for a few days, or a beer, or a pack of cigarettes or that sweater you really wnted and send the money to Lori instead.  If we can do that Lori will have the financial support she needs very quickly.  Can you stand by and watch someone die?  I think not…send what you can 50 cents, a dollar, ten dollars…all of it will add up and we can save this precious human life.

Please view another of our recent videos, “Thank You From the Bottom of my Donor’s heart” on You
Tube at http://www.youtube.com/watch?v=ifyRsh4qKF4  This video was produced to promote organ donation so it is free and no permission is needed for it’s use. 

Also…there  is more information on this blog site about other donation/transplantation issues. We would love to have you join our Facebook grou[, Organ Transplant Initiative The more members we get the greater  our clout with decision makers.

Please  comment in the space provided or email your thoughts to me at bob@baronson.org. And – please spread the word about the immediate need for more organ donors. There is nothing you can do that is of greater importance. If you convince one person to be an organ and tissue donor you may save or  positively affect over 60 lives. Some of those lives may be people you know and love.

National Kidney Foundation — “End Kidney Shortage By 2019″

The month of March is National Kidney Month and March 12, 2009 is World Kidney Day.  These dates are significant because they mark the beginning of a commitment by the National Kidney Foundation (NKF) to End the Wait” for a kidney transplant in the United States in the next decade.  This effort needs and deserves your support.  Thousands of lives depend on it.  At this very moment nearly 80,000 of the 101,000 people on the national transplant list are waiting for kidneys, many of them will die waiting.

 

There are two sources for kidneys, 1) living donors and 2) deceased donors.  While only about half of all donated kidneys come from living donors medical evidence indicates better outcomes for recipients of these life saving gifts.  It is also noted that if a living donor lives a healthy lifestyle he/she can have a normal lifespan with just one kidney.     

 

I’m going to let the NKF speak for itself in this blog.  I will offer little comment other than to say the organization has committed itself to developing almost every avenue to increase the number of kidneys available for transplant.  They have wisely avoided addressing the issue of paying donors for their organs.   I will do that in a future blog.

 

In essence, NKF is advocating a multi-faceted collaborative initiative.  What follows are excerpts from that initiative.  http://www.kidney.org/news/end_the_wait/index.cfm

 

“Rather than focusing on single issue tactics, these broad based actions will achieve the common goal that everyone agrees on – ending the wait for a transplant.  It uses proven and tested strategies, each of which is already successful in some areas and which should now be implemented everywhere. (The full list of NKF’s Recommendations is attached and is available on the NKF website www.kidney.org)

  • We can improve the outcome of first transplants, reducing the need for a return to the waiting list.
  • We should pay for immunosuppressive drugs for the life of the recipient. 
  • The loss of a transplant is one of the leading reasons for starting dialysis.  Reducing that problem will make more kidneys available. 
  • We can improve the health of recipients, transplant them earlier when their condition is better, educate them about their options and ask them sooner, “Do you have a donor?” 
  • We can also increase the number of organs available from deceased donors.   
  • We can improve the care of donor families in hospitals and support them while they are with their loved one. 
  • We can increase the use of proven techniques such as extended criteria donors and donation after cardiac death throughout the country. 
  • And, we can make sure that donor families don’t incur any additional costs because of the donation, including extra funeral costs. 

Increasing the number of living donors is vital to meeting our goal.

  • Living donors and potential donors should receive state-of-the-art care and never suffer financially because of their donation. 
  • We can cover all the costs of donation, including lost wages. 
  • We can track donor outcomes and make sure they have health care coverage and life insurance for anything that happens related to the donation. 
  • And, a program of matched donation should be available throughout the United States.

Living donors and potential donors are our constituents, too.  NKF will establish a Living Donor Council to support their needs.  They should always have the best information about the donation process to help them make decisions that are right for them.

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We also can improve the American system of organ donation and transplantation.  Many challenges are resource-based.  We can increase the number and skills of people working in transplant programs nationwide to reduce the time it takes to complete the living donation process.  All potential living donors should have access to laparoscopic nephrectomy.

 

Summary

This can be done. It won’t be easy but the goal is worth the effort.  We can End The Wait!  We can leave existing laws as they are and write new ones that address the whole problem.  We can have a dramatic impact on the health of all our patients and our country. 

 

The National Kidney Foundation will commit itself to leading the effort.  If the community responds and reaches above individual priorities and single issues, the goal can be met.  The challenges are many and the work will be hard.  But, it’s the only way to do what our patients need us to do: END THE WAIT!”

 

Please comment in the space provided or email your thoughts to me at bob@baronson.org.  And – please spread the word about the need for more organ donors.  There is nothing you can do that is of greater importance.  If you convince one person to be a donor you may have saved or affected 50 lives.

Please read and comment on my World Wide Issues blogs on http://blogsbybob.wordpress.com.   Also…visit and join my Facebook site, Organ Transplant Patients, Friends and You at  http://tinyurl.com/225cfh  OR — my Facebook home page  http://www.facebook.com/home.php 

 

 

Stem Cells Are Curing Horses — Are Humans Next?

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“Doctors might soon be able to re-grow injured muscles, tendons and bones without invasive surgery, simply by injecting a person’s own stem cells into the site of an injury. Veterinarians are already doing it with injured horses, and research into human applications is well under way.”

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That’s Marty Graham lead paragraph in the August 2008 issue of Wired Magazine’s story on adult stem cell research.  http://www.wired.com/medtech/stemcells/news/2008/08/stemcell_regeneration .  According to the story, “The National Institutes for Health (NIH) seem to think regenerating human muscle and bone using a person’s own adult stem cells is nearly ready for prime time.”   The under-the-radar announcement to the NIH staff said it’s creating a bone marrow-stem cell transplant center within the NIH Clinical Research Center. Apparently while NIH sees some promise here, they didn’t want to attract attention and buried the announcement in other information.  

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As you well know, there are two sides to every story.  In this blog we’ll try to cover the up and downsides of this most important issue.  Let’s start with the upside.

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The Wired story goes on to say, “Using adult stem cells — grown inside the body or in the lab — has become accepted in the veterinary community, and horses have benefited greatly. Researchers are working to bring those same benefits to humans, but there are still hurdles left to clear.   The NIH project comes in part from what veterinarians have learned from injecting adult stem cells into valuable horses who’ve suffered injuries. In many cases, those horses’ careers were saved when the stem cells re-grew damaged tendons and ligaments.”

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Here is where it is imperative that I point out the fallibility of animal trials.  Often what looks promising in animals simply doesn’t work in humans.  You can be hopeful but keep that fact in mind.  Medical science could tell a million stories of promising animal tests that fizzled in humans. Does that mean I’m not excited, absolutely not — but I am practical.  

 

 

The Wired story continues with, “An emerging body of scientific studies from all over the world — including a cardiac study under way in Miami and a pediatric ACL (anterior cruciate ligament) study at the Harvard-affiliated Children’s Hospital of Boston — is showing that using a patient’s own stem cells can prompt the growth of new muscle, from the knee to the heart. And the precursor step, using platelet-rich plasma for injuries, is on the verge of becoming mainstream.

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Because researchers are using autologous cells — from the patient’s own body — the research is not controversial. No one has challenged the ethics or funding of adult stem cell research the way embryonic stem cell studies have been challenged. And because adult stem cells are native to the patient’s own body, the chances of a patient rejecting them are slim to none.”

 

 

Rocky Tuan, a Ph.D. and senior investigator in the Cartilage and Orthopedics branch of the NIAMS (National Institute of Arthritis and Musculoskeletal and Skin Diseases at the National Institutes of Health (NIH) sees a day when there will be no need for the dreaded surgery for torn anterior cruciate ligaments that sideline up to a quarter-million people in the United States and Canada every year. 

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Obviously there are other benefits of adult stem cell therapy as I’ve written before.  One might assume that if stem cells can regenerate tendons, they might also be able to repair hearts, lungs, kidneys and other human organs.  But again, all of this could be nothing more than a pipe dream. 

 

Stem cell treatment is not without risks, researchers say. The worst-case scenario is that the stem cells could cause cancer — or become cancerous themselves.

 

“You’re putting in cells that want to grow. That has to be under control or we can end up with cancer,” says Dr. Thomas Rando, an associate professor of neurology at Stanford University School of Medicine.  Tuan also says that researchers don’t entirely trust stem cells and their ability to adapt and grow.

 

There’s a nagging feeling that there’s a cancer stem cell, that when it’s agitated by exposure to carcinogens or radiation or something, it goes nuts, and that we can’t identify it from the other stem cells,” he says. “How do you find this bad boy and pull him out?”

 

“And there’s a nagging worry it’s the same cell. We only know these cells by what they’ve done, and by the time they’ve become cancer, it’s too late.”

 

The use of stem cells whether adult or embryonic is highly controversial and needs much more research.  Let’s hope government, the medical community and the law will allow, even encourage it.  . 

 

Please comment in the space provided or email your comments to bob@baronson.org.

 

Please read and comment on my World Wide Issues blogs on http://blogsbybob.wordpress.com.   Also…visit my Facebook site, Organ Transplant Patients, Friends and You at  http://tinyurl.com/225cfh  OR — my Facebook home page  http://www.facebook.com/home.php

Brits Say Stem Cells May Make Heart Transplants Unnecessary

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“Heart disease patients in Britain could soon take part in a revolutionary stem cell surgery trial that could change the nature of heart surgery and ultimately end the need for transplants.”       http://www.telegraph.co.uk/health/healthnews/4569971/Trials-for-revolutionary-stem-cell-surgery-in-UK-within-a-year.html   That headline comes on the heels of President Obama’s promise to remove the ban on Government backed embryonic stem cell research here in the U.S. 

 

The story by Caroline Gammell in the British publication, The Telegraph, seems to offer more than promise.  If one could use their own (adult) stem cells to repair damaged organs it would be one of the greatest medical breakthroughs of all time.  No longer would there be a need for organ donors and sometimes risky transplant surgery.  Also true is the fact that because a patient would use his or her own stem cells there would be no danger of rejection and therefore no need to take often toxic anti-rejection drugs that transplant patients must take for the rest of their lives.   To quote from the story;  It is believed that British patents could take the pioneering treatment, in which a patient’s own cells are extracted and grown in a laboratory, in as little as a year.   Scientists have worked out a technique where human bone marrow cells are turned into human heart stem cells and then injected into the heart.   Laboratory grown heart stem cells were initially extensively tested on animals and trials on humans in Europe are due to start later this month (February 2009). “

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Again, quoting from the story, “Professor Sian Harding, of Imperial College London, said being able to convert bone marrow stem cells into heart stem cell was a “big leap forward” in finding an “effective” treatment for heart failure.

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“Placing heart stem cells into the heart to repair has a very good chance of working because the stem cells are the patient’s own there are no problems with rejection,” she said.   Prof Harding is working on turning embryo stem cells into heart stem cells but said her research was “still years away” from being used in patients.”   The most recent process,” according to the Telegraph, “was developed at the Mayo Clinic research centre in Minnesota”

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One must be careful in reporting this kind of story because the research is still in the stage of being tested on laboratory animals and no matter how promising it is with animals, history tells us that the effect on humans may be totally different.  

 

We’ll watch this story carefully and report any new information.  In the meantime I urge you to “Google alert” this story as well and let us know what you find.

 

My only question here is, did the Telegraph make too much of the story.  Does it offer premature and perhaps false hope to the thousands of people who are waiting for new organs and who could die waiting?  Please read the full story by clicking on the URL listed above, and comment here or email me at jaxbob@gmail.com.  

 

Please read and comment on my World Wide Issues blogs on http://blogsbybob.wordpress.com.   Also…visit my Facebook site, Organ Transplant Patients, Friends and You at  http://tinyurl.com/225cfh  OR — my Facebook home page  http://www.facebook.com/home.php

Dead? Ambulance Crew Will Save Your Organs

 

New York City may soon be using ambulance crews to increase the number of available organs for transplantation.  The nation’s largest city has a great idea.  I hope it spreads to other communities as well.  I know it is controversial but what new idea isn’t.  Vaccinations were controversial when first introduced, too.  I like this idea, and I hope you like it as well.

 

According to the plan, ambulance attendants would be trained to preserve the organs of people who die from cardiac arrest, but would do so only after all life saving efforts failed.  The controversial part of this idea is that the procedures used by the paramedics would be without permission from any family member.  One of the procedures, the insertion of an endotracheal tube in the patient’s trachea, is obviously invasive.  Following is what Bellvue Hospital, the New York City Fire Department and the New York Donor Network propose as proper procedures. (NYFD www.nyc.gov/html/fdny/html/home2.shtml

Bellevue Hospital www.nyc.gov/html/hhc/html/facilities/bellevue.shtml

NY Donor Network, www.nyodn.org)   

 

1.      Paramedics will start an IV and inject the blood thinner Heparin into the patient.. .

 

2.      Attendants will continue ventilating the patient through the endotracheal tube inserted into the patient’s trachea.  This is done to keep organs oxygenated.

 

3.      The ambulance crew will continue chest compressions, using an automated compression device to keep blood pumping through the potential donor and perfusing the organs.

 

4.      The ambulance will transport the body to the hospital, where further preservation measures can be taken and the family can be consulted about organ donation.    

 

You can expect an outpouring of criticism on this innovative idea.  USA TODAY (http://www.usatoday.com/news/health/2008-05-07-organ-donor-consent_N.htm) already received dozens of letters, both critical and supportive.  Many of the critical letters were based on inadequate information and unsupported claims.  I expect that will continue as more people learn of the New York City experiment.  Hats off to you Big Apple! 

Please read and comment on my World Wide Issues  blogs on http://blogsbybob.wordpress.com.   Also…visit my Facebook site, Organ Transplant Patients, Friends and You at  http://tinyurl.com/225cfh  OR — my Facebook home page  http://www.facebook.com/home.php

 

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