I Get Knocked Down, But I Get Up Again…


You’re never gonna keep me down!

For those of you who may be following along in hopes of possibly having HSCT, please know, that somewhere along the way. you may be met with resistance.  Not from just strangers, but from medical professionals that you’ve come to trust and respect.  In particular, if you’ve been the type of patient who has always played by the rules.  Is their ego bruised because they were unable to sufficiently help you under their care?  Is it the money that they may stand to lose if you are no longer in need of their services?  Whatever the case,  you need to keep your chin up and remind yourself, that you didn’t want to do this, but the certainty of knowing what will happen if you don’t, is what drives you to this next logical step.

I’ve already hit a couple of bumps in the road with my own neurologist and my own primary care physician.  As part of the “maintenance” protocol of this treatment, it is recommended that you become acquainted with a hematologist who can monitor your bloodwork upon your return.  Sounds simple enough.  However, some doctor’s offices require a referral from a doctor, in order to be able to access your records.  Not a problem.  I’ll just call my PCP.  I’ve already discussed with him, in detail, the fact that I’m getting the transplant done in Russia and he told me to “keep me in the loop” and “let me know how things go”.  So, imagine my dismay when I called him for the referral to the hematologist and he said that he wouldn’t do it because he didn’t order the transplant.  Can you say “I’m not getting my hands dirty!”?.  Well, when Miss Play by the Rules hits a roadblock, she sends a single text to a best friend, whose brother is friends with the hematologist.  Within hours, the hematologist’s office is on the phone with me and, given that I’m not just a chemo patient, but a transplant patient, they kindly referred me to a hematologist/transplant specialist in Pittsburgh, who said that they “would be happy to see me”.  Na-na, na-na, boo boo, Mr. PCP!!

Next up, my neurologist of 13 years, whom I absolutely adore and respect, has his nurse call me to say that, “Since you’re seeking treatment outside our facility, that there is no reason for him to see me at my February appointment, and if I did, it would solely be to measure my level of disability…period.”  She proceeded to tell me that it’s very difficult to get an appointment with him (Oh, gee, really?  Now it’s a favor to see me?!!).  In the blink of an eye, I became a number and not a patient/friend.  I was so taken aback, that I couldn’t speak and the next thing you know, I’m crying to her and telling her that it didn’t sound like him at all…and it doesn’t.  I know that he doesn’t agree with the treatment (even though he said it would definitely “stop new lesions/activity”), but he specifically told me that he “would be there for me and he would continue to be my neurologist”.  I plan on holding him to that!

The moral of this story is that some doctors will try to make you feel guilty, some will try to sidetrack your efforts, and some “will be happy to see you”.   If this treatment was FDA-approved and available to the public at large in the U.S. in less than the expected 10 years for approval,  I would do it!!  Don’t beat me up over it!

In the meantime, and in the words of Chumbawumba…Don’t cry for me, next door neighbor.  Onward.

5 responses »

  1. I worked in Healthcare for 27 years. It is so political it is ridiculous sometimes. Granted, because certain regulations require Docs to be constantly looking over their shoulder for the next litigation thrown their way but I have also seen many that would throw anyone under the bus that they have no “need” for anymore; co-workers and patients alike. It’s a minefield sometimes that we all must traverse at some point. Just grab the metal detector and keep on moving forward Brooke!

  2. Same thing happened to me when I decided to go to Philadelphia for gamma knife instead of letting the local surgeon open the side of my head up. You have to do what is right for you!!

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