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.
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.
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.
Its been 140 days since ATG treatment, and as of now it has been unsuccessful. The treatment is based in the thought that aplastic anemia is an autoimmune disease—the bodies white blood cells have attacked it’s bone marrow, causing the marrow to fail and blood production to diminish. Since onset I’ve heard a variety of numbers concerning when and how long to wait to call it a success or failure—first 120 days, then 60 days, then 90, then 120 again. Just when I thought it was settled another physician(and aplastic anemia expert) explained that he generally waits 6 months before moving on to another treatment. I wish they could call a meeting and decide.
The next step is—as I’ve noted before—bone marrow transplant, or at the least preparing for it. While I have continued to speak with transplant doctors and begin to read into the transplant process my mind sometimes plays out a comical scenario. I imagine myself celebrating Lincoln’s birthday with an admittance to the hospital. I’m all ready to go for transplant, gowned, poked, prodded, when the results of my pre-treatment testing return and reveal my blood counts have returned to normal. ATG has worked, albeit not on schedule. Doctors look at one another repeating 120 days, or 90 or 60 or whatever they’ve decided on. Insurance companies argue with hospitals about the whether my six hours in-patient can be charged at the full day’s rate. The healthcare drama plays out gloriously.
I mentioned this scenario to one of the coordinators at the clinic while awaiting a transfusion. She, being a professional, explained it to be “highly unlikely.”
“Sort of like the chance of being diagnosed with aplastic anemia? ” I added, grinning, begging for a smile.
She looked down at her notes uncomfortably and pretended she missed it.
The Roman philosopher Cicero said “In nothing do men more nearly approach the gods than in giving health to men.” At times you will meet a doctor who buys this. More times, however, you will meet patients who do. As was the case with an older gentleman I spoke with briefly in a waiting room some time ago.
“Dr Royce(name has been changed) is the best out there, just to get a consult means months and months of waiting. He has seen it all.” “Luckily,” the gentleman gushed, “we knew somebody.” Upon meeting him I couldn’t help but think this guy was in for the disappointment of his life when his introduction to Royce revealed the distinct lack of a halo hovering above the doctor’s head.
And although the guy’s reaction was excessive, none of us are far from it. When your ill all goals have been replaced by a single goal, to get better. And even when you find the sort of activity to distract yourself, a movie, or night out with friends, your illness is always lurking somewhere in your mind. And then there is a person—a doctor—who believes they can help you reach that goal of better, of healthy. Their words become gospel, their recommendations law. “Whatever you say doc, we just want to beat this..”
At some point when I was in high school(I think) Lance Armstrong’s LIVESTRONG bracelet campaign took off. I remember people wearing these things everywhere I went and I always thought it was not only genius on a marketing end, but more importantly on the spreading awareness end. The bracelet has become something used by far more organizations than Mr. Armstrong’s and thanks to a friend I recently learned AAMDS.org, a site dedicated to bone marrow failure diseases is running a similar campaign—the goal being “to bring bone marrow failure disease into the community; increase visibility; make it a part of every day living; get people to ask about it and therefore make more people aware.” A picture of the bracelet(s) is included below. According to the website the red and white colors symbolize the red and white blood cells found in bone marrow. You can purchase 10 for $10, the idea being to hand them out to nine people you know. And on and on the process continues. The bracelets color scheme will look especially great with the holiday season just around the corner. Just saying.
Order your bracelets here, or call 800.747.2820 if you have any questions.
Regina Holliday’s husband Fred passed away in June 2009 after battling cancer. Fred’s medical experience left her appalled and so she responded by advocating for healthcare reform through art. The mural, 73 cents(seen above), adorns an outerwall of the BP gas station on NW Connecticut Ave in Washington D.C. It has been covered by media globally, including CNN.
Regina recently passed along these excerpts from a recent a post to her Medical Advocacy Blog, detailing Fred’s Story. Read her full post here.
…On March 27 my husband, Fred Holliday, was diagnosed with probable Renal Cell Carcinoma. Within one day, I became an e-patient, a caregiver and a medical advocate. I would use the internet for both research and patient/family support. To help my husband receive the best care, I surfed the internet at night; researching his cancer using Google, reading the Wikipedia entry on RCC with all of its links, and finding personal cancer stories. Facebook became the information source on Fred’s medical status. I would take a few minutes each night to post to the 100 plus people following Fred’s care. Within days of diagnosis, two of my friends had set up a Lots of Helping Hands account. This online network, which rapidly grew to 150 volunteers, would fundraise and provide meals, babysitting and groceries. This pool of helpers was immensely diverse. Before sites such as Lots of Helping Hands, orchestration of a volunteer effort this complex would not have been possible.
My husband was the model patient: he never complained or caused trouble. We were at the first hospital for four weeks with the only treatment being palliative radiation. My husband walked into that hospital but by week two he could no longer stand and could barely sit. We had no chemo or surgery. I wanted to know what was going on, so on Friday, April 17 I went down to medical records to ask for a copy of his chart. They told me it would be 73 cents a page and a 21 day wait. The next day the oncologist came into the room. It was 9:30 AM on a Saturday. We had a list of questions ready. We had questions like: “When will we have surgery?” The doctor had a different answer. “We have decided to send you home on PCA pump.” I found out later that “we” meant the hospital, the oncologist, and the insurance company, all privy to this decision days before Fred and I were. I had done my internet research. I knew exactly what was going on. This was home hospice. Fred was being sent home to die. The doctor left the room. We cried. Then Fred told me to go after them.
A. Anemia News
