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It?s so frustrating to navigate all of this. Your anxiety is shared and understood by all of us. I would suggest taking a leap and call the Cleveland Clinic for a consult. Getting lab work done, depending on what they want, can be done. And that can be worked out after the consult. I would think you should be able to share her medical records and past lab result electronically. If the clinic takes you on, then you have the option to switch to another local practice since the need for AA experience would not be as crucial.
When John got sick, his hematologist had never cared for anyone with SAA. But Hopkins did. His treatment was done at Hopkins with 3 month follow ups the first year. His local Hematologist handled the day to day issues and consulted with Hopkin as needed. This arrangement went on for years.
Marlene
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Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of July 2021 HGB 12.0, WBC 4.70/ANC 3.85, Plts 110K.
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