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Match Devan Tatlow’s Bone Marrow, Save His Life

Four-year-old Devan Tatlow’s struggle with leukemia has caused quite a stir on the Internet, prompting celebs like Paris Hilton and Kim Kardashian to encourage people to donate their bone marrow. Dr. Jon LaPook talks with Devan’s family about their search for a match.

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Umbilical Cord Blood: Save It and Save Lives

Imagine throwing a lifesaving treatment in the garbage. That’s exactly what happens in the United States over ten thousand times a day because we do not routinely offer to collect precious umbilical cord blood at the time of birth. Thousands of Americans — many of them children — needlessly die annually because they cannot find either a bone marrow or umbilical cord blood match to help treat conditions like lymphoma and leukemia. Yet umbilical blood is discarded as medical waste in the vast majority of the more than four million births occurring each year.

Bone marrow and umbilical cord blood both contain stem cells that can replace diseased bone marrow. Umbilical cord blood can be collected painlessly and with no risk in a few minutes at the time of birth. I witnessed its value first-hand in a segment I did for the CBS Evening News about a 4-year-old boy, Devan Tatlow, whose parents recently launched a desperate search for a bone marrow donor to treat his leukemia. There was no adequate genetic match for Devan among the 14 million potential bone marrow donors in registries around the world. But a near-match was found among only 175,000 cord blood units that reside in public blood banks in the United States. Though finding the match doesn’t guarantee a cure for Devan, his doctors say he now has a good chance at a successful transplant later this summer.

Devan’s situation perfectly illustrates the current state of the art. Before cord blood use began in the 1990′s, taking bone marrow from a healthy donor was the only way to replace diseased blood cells. Over the years, registries such as the one run in the U.S. by the National Marrow Donor Program have helped save thousands of lives by matching donors willing to give their bone marrow cells to patients in need. But as Devan’s parents discovered, finding a bone marrow match can be very difficult because the genetic match has to be very close. Fortunately for Devan and many others, umbilical cord blood matches don’t have to be quite as close as bone marrow matches. But many patients are not lucky enough to find a match in either the bone marrow or umbilical cord blood registry.

According to Dr. Joanne Kurtzberg, Director of the Blood and Marrow Transplant Program at Duke University Medical Center, the public cord blood supply is way too small. She and other experts are looking to increase U.S. stores to 400,000 to 500,000 units — about 2 to 3 times the current level. ”It would be fantastic if hospitals were equipped and staffed to collect cord blood for public donations if mothers wanted to donate, but right now that’s not the situation in the United States.”

Donating cord blood to a public cord blood bank costs a family nothing. But because of lack of funding, only 170 of the nation’s 5,815 hospitals — just three percent — are set up to collect it. In 2005, government legislation created support for National Cord Blood Inventory (NCBI) cord blood banks.

However, Dr. Kurtzberg says the effort has been underfunded. She was in Washington last month lobbying members of Congress to appropriate authorize the appropriation of $30 million annually for the next five years to support public cord banking. From hospital bed to bank, it costs about $2,400 to collect, transport, freeze, and store each cord blood unit. Private cord blood banking is available (and costly) but is only for use within a family and therefore doesn’t help the vast majority of people in need. Because of collection standards, cord blood collected for private use cannot subsequently be donated for public use. So it can’t help patients like Devan.

The bottom line is that we need to increase the supply both of potential bone marrow donors and of umbilical cord blood stored in public banks. Becoming a potential bone marrow donor could not be easier. You simply swab the inside of your cheek or lip for 20 to 30 seconds with a small, padded stick to collect cells for genetic analysis, send the specimen off to a lab, and you’re done. If a match is subsequently found, you can always change your mind and decide not to be a donor. But giving bone marrow cells involves only minimal discomfort — whether by having a small amount of bone marrow withdrawn from your hip bone under general anesthesia or by having blood taken from veins in your arms after you take 3 to 4 days of injections to bring cells from your bone marrow into your blood.

Because it’s not routinely offered at the time of birth, donating umbilical cord blood to a public bank requires some initiative. But if umbilical cord blood were donated in only five percent of all births, the goal of 500,000 units would be reached within two years. And since the blood can be frozen and stored for at least twenty years, we would soon have a plentiful and growing supply that would provide a match for nearly everybody.

Adults wanting to volunteer as bone marrow donors can go to their local American Red Cross or blood center, or can enroll online at the “Be The Match” registry of the National Marrow Donor Program. Just go to and click “Join the Registry.”

Mothers who would like to donate their baby’s cord blood click here: “Donate Cord Blood.” Dr. Kurtzberg told me “they can also talk with their obstetrician or midwife about whether their local hospital is a collection site for a public bank. Finally, if their hospital is not a collection site (the case in most instances), they can contact Duke, MD Anderson, or South Texas Blood & Tissue Center and donate through a kit program public cord blood donation that is being piloted through the National Marrow Donor Program.”

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Richmond, VA – In an effort to simplify inpatient medical billing, one area hospitalist group has determined that “altered mental status” (ICD-9 780.97) is the most efficient code for use in any patient work up.

“When you enter a hospital, you’re bound to have some kind of mental status change,” said Dr. Fishbinder, co-partner of Area Hospitalists, PLLC. “Whether it’s confusion about where your room is located in relationship to the visitor’s parking structure, frustration with being woken up every hour or two to check your vital signs, or just plain old fatigue from being sick, you are not thinking as clearly as before you were admitted. And that’s all the justification we need to order anything from drug and toxin screens, to blood cultures, brain MRIs, tagged red blood cell nuclear scans, or cardiac Holter monitoring. There really is no limit to what we can pursue with our tests.”

Common causes of mental status changes in the elderly include medicine-induced cognitive side effects, disorientation due to disruption in daily routines, age-related memory impairment, and urinary tract infections.

“The urinalysis is not a very exciting medical test,” stated Dr. Fishbinder. “It doesn’t matter that it’s cheap, fast, and most likely to provide an explanation for strange behavior in hospitalized patients. It’s really not as elegant as the testing involved in a chronic anemia or metabolic encephalopathy work up. I keep it in my back pocket in case all other tests are negative, including brain MRIs and PET scans.”

Nursing staff at Richmond Medical Hospital report that efforts to inform hospitalists about foul smelling urine have generally fallen on deaf ears. “I have tried to tell the hospitalists about cloudy or bloody urine that I see in patients who are undergoing extensive work ups for mental status changes,” reports nurse Sandy Anderson. “But they insist that ‘all urine smells bad’ and it’s really more of a red herring.”

Another nurse reports that delay in diagnosing urinary tract infections (while patients are scheduled for brain MRIs, nuclear scans, and biopsies) can lead to worsening symptoms which accelerate and expand testing. “Some of my patients are transferred to the ICU during the altered mental status work up,” states nurse Anita Misra. “The doctors seem to be very excited about the additional technology available to them in the intensive care setting. Between the central line placement, arterial blood gasses, and vast array of IV fluid and medication options, urosepsis is really an excellent entré into a whole new level of care.”

“As far as medicine-induced mental status changes are concerned,” added Dr. Fishbinder, “We’ve never seen a single case in the past 10 years. Today’s patients are incredibly resilient and can tolerate mixes of opioids, anti-depressants, anti-histamines, and benzodiazepines without any difficulty. We know this because most patients have been prescribed these cocktails and have been taking them for years.”

Patient family members have expressed gratitude for Dr. Fishbinder’s diagnostic process, and report that they are very pleased that he is doing everything in his power to “get to the bottom” of why their loved one isn’t as sharp as they used to be.

“I thought my mom was acting strange ever since she started taking stronger pain medicine for her arthritis,” says Nelly Hurtong, the daughter of one of Dr. Fishbinder’s inpatients. “But now I see that there are deeper reasons for her ‘altered mental status’ thanks to the brain MRI that showed some mild generalized atrophy.”

Hospital administrators praise Dr. Fishbinder as one of their top physicians. “He will do whatever it takes to figure out the true cause of patients’ cognitive impairments.” Says CEO, Daniel Griffiths. “And not only is that good medicine, it is great for our Press Ganey scores and our bottom line.”

As for the nursing staff, Griffiths offered a less glowing review. “It’s unfortunate that our nurses seem preoccupied with urine testing and medication reconciliation. I think it might be time for us to mandate further training to help them appreciate more of the medical nuances inherent in quality patient care.”

Dr. Fishbinder is in the process of creating a half-day seminar on ‘altered mental status in the inpatient setting,’ offering CME credits to physicians who enroll. Richmond Medical Hospital intends to sponsor Dr. Fishbinder’s course, and franchise it to other hospitals in the state, and ultimately nationally.


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