← Return to 200+ transfusions in two years! Rare strain of anemia...advice please

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200+ transfusions in two years! Rare strain of anemia...advice please

Blood Cancers & Disorders | Last Active: Sep 21, 2022 | Replies (31)
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@renaldo

Dear Colleen,

Every time I try to get advice from all hospitals, I understandably get the same response.

We must diagnose. Make an appointment.

I find it almost impossible to reach any of them online unless calling on phone. Then the response is same as through online correspondence.

It is like facing a wall. I cannot put her on a plane both because she may bleed from cabin pressure and we cannot afford care in the states.

Thank you for the advice...I will continue my search for help...where? I have no idea!

Warm regards,
Ron

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Replies to "Dear Colleen, Every time I try to get advice from all hospitals, I understandably get the..."
Teresa, Volunteer Mentor | @hopeful33250 | Aug 28, 2022

Hi @renaldo

I've been reading all of the posts about your wife's problems with anemia and my heart goes out to you both. You must feel that you are between a rock and a hard place and no one likes to feel like that.

I've read all the great suggestions, especially those provided by @loribmt and @colleenyoung. I have one other thought. I'm not sure what the cost would be, but could you consider a video visit with Mayo Clinic? You would need to send all of her test results. If this could be done they might be able to have a blood sample sent to their facility in Minnesota.

I live in the US and have a rare form of cancer. Although I live near a major university medical center, they send blood samples to Mayo Clinic in Rochester, Minnesota. From a recent visit to Mayo, I learned that there are two Fed Ex planes that land in Rochester Minnesota twice a day to bring blood and tissue samples for testing.

If this could be done, you would not have the travel expense, but you might get the medical help with a diagnosis that Cilvia needs so badly.

Is this something you can look into?

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