My PICC Line

Researchers have for the first time performed a successful bone marrow transplant to cure sickle cell disease in adults, according to the Los Angeles Times. The team reported it has developed a much-less-toxic transplant procedure and used it to cure nine of the first 10 patients studied.

The hereditary disorder primarily effects  those of African descent and with the findings of this study there could be a notable increase in the demand for African American donors. See the statistical breakdown of donor ethnicity here.

Those suffering from Sickle Cell Anemia produce C-shaped or “sickle” red blood cells—rather than the normal doughnut shape—that clump when moving through blood vessels. The disorder is defined by a lower-than-normal number of red blood cells(RBCs) because the mishapen cells don’t last very long, dying after 10 to 20 days. Normal RBCs live approximately 120 days.  The bone marrow cannot produce new red blood cells fast enough to replace dying ones.

The video above highlights 6 year old Hispanic boy Antonio Rieder’s pursuit of a suitable match for the bone marrow transplant he needs. Taylor Matt, a teenager from New York who has also struggled to find a match through the registry because he is a quarter Native American. These stories are not uncommon among ethnic minorities here in the United States. Below is a chart provided by Be The Match, the National Marrow Donor Program illustrating the ethnic breakdown of potential donors. [Read the rest of this entry...]

I haven’t done a personal update in awhile, mostly because constantly updating my own condition would quickly make this blog annoying. But also because there hasn’t been much news.

The last few months haven’t been much but waiting to see if my bone marrow decides to work or not. As of now my counts haven’t moved enough to proclaim any form of success. There’s been days where we see signs of improvement—a rise in white blood cells, a less drastic drop in platelets—but a week or two later the counts fall back again.

However today a first happened. My blood counts remained the same as last weeks’. No rise, no fall, just the same.  Notable only because there wasn’t a single transfusion—blood or platelets—at my last visit. Meaning my marrow maintained those numbers all by itself.

It’s now been six weeks since my last red blood cell transfusion and 18 days since my last platelet transfusion. Both are ‘personal bests.’ I say this because when hearing the news, my mother’s reaction was to keep repeating “this is quite an accomplishment.”

NPR looks at 4-year-old Maya Chamberlin’s fight against a rare blood disease and the search for a suitable bone marrow donor.

The week between Christmas and New Year’s is the single hardest week to get donations, according to the United Blood Services. The need for blood doesn’t take the holidays off.

This Christmas  aplastic anemia survivor A.J. Revera urges others to join the National Marrow Donor Registry.

In the video below PBS ‘NewsHour’ explores the healthcare lobbying effort going on in Washington D.C.,the oodles of money spent and whose voice gets heard.

Here’s a short feature on Matt Fioretti at the Seattle Cancer Care Alliance website. Fioretti, a mountain climber and guide, was diagnosed with aplastic anemia a short time after leading a climb along Nirekha Peak, in the Himalayas.

When reflecting on the  bone marrow transplant he eventually underwent he says,  “My attitude was good. There were days I’d break down, but that happens on every expedition at some point.”

In October I issued a letter of appeal to my insurance company after they denied coverage for a bone marrow donor search(read the appeal here). After receiving nothing back for weeks, I took the advice of a friend’s father and resent the letter certified. It cost $5.40 but did force a response, couldn’t use the it must of been lost it in the mail line on me this time. The jist of what they said was I have failed to provide a specific diagnosis (the third sentence of my letter includes”diagnosed with severe aplastic anemia,” check for yourself if you like) or the necessary procedure codes(got me on that one), and therefore could not provide a definitive answer to my appeal. Their response went on to instruct me to check with my physician for my diagnosis and procedure code(s). I can’t be trusted to pass along anything regarding my illness, even’s it’s common name.

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This Mayo Clinic video highlights the experiences of one leukemia survivor who underwent an autologous stem cell transplant, which means the cells used in transplant were her own. For those with aplastic anemia this is not an option, instead they must undergo and allogeneic transplant—-bone marrow(where stem cells that  give rise to blood cells are produced) is collected from another person. Those suffering from AA cannot undergo an autologous transplant because their bone  marrow has failed—its producing nothing so there is nothing to transplant. The marrow of those with leukemia, as the video states, has malfunctioned, rather than stopped working. If their bone marrow is still producing some normal stem cells, one treatment option is to pluck away those normal cells through  aphresis (briefly explained in the above video) and use them for transplant.

In 1984 the United States government established the Organ Transplant Act banning the selling of organ and tissue. And while arguments can be made as to the ethics of profiting off solid organs, the argument of profiting off bone marrow presents a murkier case. In an opinion piece appearing in the Sun News, George Mason University professor, Walter Williams argues bone marrow donation should be removed from the legislation.

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This week is Nationl Aplastic Anemia Awareness week. Beginning in 1986, the week long campaign focuses on educating the public and spreading general awareness. The Aplastic Anemia and MDS Foundation offers up some ideas on how to help make the week a success, including wearing and dispersing  of these bracelets I posted on a few weeks back.

effort to find a cure for this and other bone marrow-related diseases.

Often I’m asked by friends or family to explain aplastic anemia, and often I find myself stumbling over words, trying to produce a clear picture. Sure, I can say my bone marrow is failing to produce adequate amounts of blood but visualizing that is tough. The above video from Johns Hopkins does a nice job of explaining aplastic anemia, and the thought process behind immunosuppressive therapy. Enjoy.