Hello 1AplasticDiva,
Sorry to hear that you're in this situation. I agree with Neal in that you should do whatever you can to get a hold of the medical records (info.) that NIH has requested. I went through the same process of getting my son's records for an evaluation from NIH. They did ask for very specific info. We were advised to go through "Medical Secretaries" a separate dept. at our hospital for the information requested.
Fortunately for us, I was able to put together a list of the items NIH was requesting and I emailed it directly to my son's Dr. She had one of her clinic secretaries retrieve my son's MR info. and the Secretary faxed the "Summary" directly to Olga (Dr. Young's assistant) @ NIH.
The following is the list I emailed my son's Dr.
Maybe you can do the same. I know that some Q's do NOT apply to you like #11, but I'm just trying to give you an idea of what you might do.
You should also request a
Medical Release Form to be emailed to you from both the Hospital in WI and TX. You must sign and send it back giving them permission to share information with NIH. The sooner the better...
Example of the List I emailed my son's Dr:
1. Recent Medical Summary (last 3 mos.)
2. Brief History: Date of diagnosis, CBC at diagnosis, CBC pre-ATG, Initial Treatment (hATG 4days plus CsA, G-CSF, etc…)
3. Copy of Fanconi Report/Result
4. Copy of Telomere Report/Result
5. Response time post ATG:
6. Date weaned off all meds:
7. Relapse Date:
8. CBC w/Diff @ relapse before “reinitiating” CsA
9. Current History/Physical
10. Current CBC w/Diff and Reticulate
11. Most recent Copy of PNH Report
12. Most recent Kidney & Liver Function Results
13. Most recent copy of BMB Report w/Cytogenetics, w/Flow Cytometry, and FISH
14. Number of PRBC Transfusions since "reinitiation" of Cyclosporine (in 2012)
15. Patient Demographics
16. Physician Contact Information
FAX: (301) 402-3088
Attn: Olga Rios
Lastly, I would like to share this VERY RECENT Article...it is very interesting and encouraging news. News that we found to be very exciting as my son does not have a perfect match either. So far they have found 4 potential (9 of 10) matches. This article talks about the use of Cyclophosphamide Post Transplant and how it helps with engraftment and GVHD. Very good news.
BTW, have they been able to find any mismatches for you? 9/10?
http://www.sciencedaily.com/releases...1113143133.htm
Well, I hope this helps a little. You're doing the right thing by reaching out to get more info.
Take care