On my Boston doctor's recommendation, I've called Memorial Sloan Kettering Cancer Center to schedule an appointment with a post-transplant doctor who worked at MD Anderson in Houston. I feel so enraged by my current doctor and her incompetent, though officious, staff, that I have to count the ways I loathe thee.
1. You put me on photopheresis for 9 months and recommended I stay on it for a year when it was obvious that it wasn't helping me. I finally quit on my own. They charge $6,000 a pop for those treatments.
2. You dismissed a dark spot on my cheek as chemo burn. I decided to have it checked by a dermatologist only to find it was melanoma.
3. You sent me to a liver specialist who discovered the reason for all the pain I was having in my side: kidney stones. I had blood in my urine, which was checked a number of times, but got no recommendation to see a urologist. Finally, I went to see my internist who referred me to one.
4. You agreed I should get a second opinion about my treatment, in Boston, which I did. That was in early November. I saw you twice since then, and you hadn't heard from my doctor, even though I knew he'd sent you his recommendations. Last Monday, you finally had the report. You prescribed a new drug, tacrolimus (Prograf) which is an immune suppressant. You agonized over the dosage, which is done by weight. When I took my first dose last week, I had a bad reaction, stopped taking the medication and called you right away. Your office manager took the message and said the doctor would call me back. The manager called me back to say I should stop the medication for a week and then take half the dose.
5. You should manage your staff more effectively. Communication seems to be lacking on both ends.
There. I feel better.
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2 comments:
That is a terrible experience and a great letter. I hope you have sent it to the doctor and copied her supervisors.
I'm not sure if mere incompetence covers the atrocious way in which this doctor and her staff looked after you. I cannot believe the sheer stupidity you had to survive after everything you've already been through. I hope the new doctor at Sloan is a much better fit and can corral the host of GvHD issues that you've been living with.
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