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Falling Into a Medical Abyss
Patients are often tossed from doctor to doctor and given little time. I got two doctors. First a fellow came to take my history and examine me. Not a student or resident but a hematologist-in-training rotating through this specialty clinic and serving as a kind of Watson to Maciejewski's Holmes. That was my first impression of the idiosyncratic doctor as he burst into the room, shook my hand and leaned against the sink, his hands empty, his hair tousled, his blue eyes piercing yet not unkind, and began, as though we had long been friends, "So, Mark, tell me …"
He spent more than an hour with me, patiently explaining my options, the history of the disease, the current state of research. Thirty years ago the severe form was always fatal, but now it can be pushed into remission or even cured by a bone-marrow transplant or less risky immunosuppressant treatments. When my mom let slip that I was a writer, the doctor's eyes lit up and he implored me to write a story about scientists, a thriller, filled with intrigue. Not the sort of tale to give a new patient confidence, but that was the best thing of all, not to be treated as a patient.
So wear your ribbons and watch your telethons, but know that your cures might be born in an orphanage like Maciejewski's. And even if they aren't, these doctors who treat rarities deserve high praise for their devotion, whether they save a hundred million lives, or just one.
Schreiber lives in Columbus, Ohio.
Schreiber lives in Columbus, Ohio.
© 2008
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Member Comments
Posted By: bjwcatlover @ 02/24/2008 8:22:10 PM
Comment: I, too, have SAA. I have said many times it would have been 'easier' to have breast cancer and cut it off! I had two rounds of ATG, first horse, then rabbit and got to enjoy over a year without transfusions. My counts were WBC 2.5 HGB 11.7 and PLT 94,000. Last month, my counts began to fall again. White was 2, hgb was 10.7 and platelets dropped to 73,000. I go again on March 4th, (IBMT in Indianapolis) and am afraid they've dropped even lower. Lots of faigue. I get very tired of people saying " you dont look sick'. Not that i want to look bad, but no one really believes that i have a life threatening illness because no one has heard of it. Keep the faith!
Barb, in Terre Haute, IN
Posted By: ahgreer @ 02/21/2008 8:45:24 AM
Comment: I wanted to let you know that you "hit the head on the nail" when you said it would have been easier to have been told you have cancer. I don't have what you have, but I do have a very rare disease called necrobiotic xanthogranuloma. I have only found 1 person that I talk with and she lives in Australia. I am a human ginny pig, but yet I have to pay for this. Seeing insurance companies don't pay for treatments that have not been FDA approved for something.
Anyways, I just want to commend you for your article, that was so well writen.
Living with nxg in Mississippi,
Angela
Posted By: Survivor-mi50 @ 02/10/2008 1:15:06 PM
Comment: One caveat, having had cancer, twice, it was easier that this "PPS," because of the Team approach in medicine. My oncologist, and the rest of the team members, always met with me, and we worked together on the "next step," which evidenced progress. Without J R Bach, MD, Dr. Richard L. Bruno, Post-Polio Health International, and our support groups, I'd be dead by now of "the late-effects" of Polio which I worked so hard to survive when I was 10 years old. The medical world better be prepared, because all serious viruses are causing such break downs in our immune systems. Bravo to you for opening this critically needed discussion.