Quote:
Originally Posted by Jbsx19
Robbie,
I am located in Florida (East Central) and was diagnosed VSAA in May 2003. My choice was to travel to NIH, as mine was an emergency situation and I did not have the time to research options when I was diagnosed. In Hindsight, now that I am in remission 100%, I would NOT have made any other choice anyway. The care and treatment at NIH is uncomparable to any other. Needless to say, NIH did give me the option of being treated there or Dr. Young's referral for me would have been to Shand's in Gainesville (had I opted to go directly to transplant as opposed to the ATG/Cycl route).All I'm trying to say is that it may be worth making the trip to NIH so that you become a patient thru them.That way, You have the initial treament at NIH,all the research and statistics would be recorded by them and your follow up care could be done locally with revisits to NIH once a year or so (that incidentally, are paid for by NIH). Any other facility that you are treated at are NOT obligated to share their (your) information with NIH. I do know of another patient here in FL that is currently being treated at Moffet in Tampa (they opted NOT to make the trip to NIH) and they are not completely happy with the communication of their treatment between the NP's and Dr's. Just some information for you to maybe help in your research before you make a choice. Let's face it, we are all hoping and praying for better treatment options and a cure for bone marrow failure diseases that are rare in themselves. We all have a choice in helping to make that happen.
Please feel free to contact me ,anytime, if I can be of help sharing my experience at NIH or just to talk. Take care and be strong.
Judi
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I know, having been the newbie at many things, and also being the "veteran" at times that we fall into using abreviations and acronyms. But sometimes a new person will get in to the "conversation" late and the abbreviations and acronyms are not self explanatory. Could you tell me what NIH stands for...the only one I can think of is National Institute of Health and if that is what it is, where is it located in FL. I live on the "Nature Coast" and have not yet been diagnosed...still in the testing stages...I've been doing a lot of research to try to stay ahead of the curve.
I also have a friend who is going to Shands in Gainesville. Her transplant is scheduled for Sept. 26. She's been happy with the doctors/staff and communication with her team.
I'm also wondering about "caregivers". My friend's husband will be her caregiver and two of our friends and I will "substitute" occasionally overnight, so DH can travel home and take care of house/bills, and just get some needed "relief". What happens when a patient has no family or friends on whom to rely...one or two days is one thing, but months is quite another. I know I have no husband, children so this could be a problem for me.
Thanks for the forum and insights given by the many contributors.
Jan