Results are in!
 

I received my Day 100 results today and they were great! My marrow is 100% my donor's. My cellularity is good, my CD4 count is almost where they want it, no sign of AA, MDS or PNH! My counts are still a little low, but the doctors think that it is most likely due to my meds. Overall, it was fantastic news! I couldn't have asked for anything better! I updated my blog as well if you want to know more information.

Wonderful news, Andrya! Congratulations to you, and congratulations to your brother/donor too!

That's great news, Andrya, especially since you were so worried leading up to this. I hope you celebrated Day 100 somehow, too. Now the next big milestone is your rebirthday!

Congratulations!
 

Congratulations on the great results! I read your blog update and agree with you completely about doctors. I speak to my doctors as peers and expect them to do the same. If they don't, it's time to find a new doctor. I've never had experiences as bad as yours - of course you were livid, rightfully so. Overall, I've had great experiences through my last couple of years. My local hematologist is fantastic. My transplant doctor at Johns Hopkins is not my favorite but he is okay. Every time I start to feel negative about him being too busy or too breezy, he seems to redeem himself with a follow-up or comment unprompted by me. My clinical trial doctor couldn't have been better. My oncologist and nurse practitioner at University of Maryland were both super. More recently, I've spent a couple of weeks back and forth at NIH as part of a GVHD study. ALL of the doctors and staff there have been amazing. I'm a patient with LOTS of questions, and I want to know everything that's going on with my treatment, including all the why's. I also want to know the potential outcomes, both good and bad, best case, worst case, and average. If you do relocate to Maryland, I think you're going to be a lot happier with your medical options than you have been where you are currently.

Thanks!
 

Karen-I'm so glad that there is someone out there with similar views. I was beginning to feel like I am the only person in the world that thinks this way. My husband got his orders finalized today. I will be coming to Maryland around January 15. I expect to be going to the University of Maryland because of Johns Hopkins not accepting post transplant new patients. I don't expect my doctors to call in any favors for me at this point either. I'm excited about the move, but not the weather :)

Andrya,

I heartily second Karen's sentiments. It is an unfortunate part of the culture of medicine that it can foster a certain level of arrogance in practitioners, along with an assumption that regular folks like their patients can't really understand their illness. But your doctors seem to be particularly Neanderthal in that regard. It's fortunate that your move gives you a good excuse to dump them and start over.

I believe this attitude is rapidly changing among health care practitioners, and my experience has definitely been more like Karen's: doctors who are happy to explain as much as I am able to take in, and who welcome questions and feedback. And, believe me, I have plenty of questions.

I hope you will find much more receptive docs in MD. Good luck with your move -- and congratulations on your great results so far.

Take Care!

Greg

I agree with you about doctors too. Fortunately, I haven't run into too many neanderthals! But I have run into 1 or 2 and I sure know what you mean.

Deb

Congrats! Started reading your blog today from the beginning :) i think it'll be a lot of comfort to me! Let me know how your hair comes out :p