When Surgery Is Needed , How Do You Get Oncologists/hematologists To Work With Surgeons To Arrange Surgery, Infusions, And Observation? | MyHemophiliaTeam

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When Surgery Is Needed , How Do You Get Oncologists/hematologists To Work With Surgeons To Arrange Surgery, Infusions, And Observation?
A MyHemophiliaTeam Member asked a question 💭

I posted an in detail story about what’s happening, but in short. I need multiple surgeries and I am constantly being canceled by the oncologist for numerous reasons (not financial) for some ridiculous reasons such as dates, locations, etc. no referrals or rescheduling, no nothing, just cancels the surgery and surgeons eventually get annoyed and back out leaving me scavenging for other surgeons. Which most once they hear hemophilia refuse to do the surgery because apparently this is a common… read more

posted November 10, 2017
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A MyHemophiliaTeam Member

Yes, mine is 98 miles away but once you get hooked up with a good doctor you only have to go once a year. They can calloborate with your doctors at the hospital, and maybe find a better hospital. They are not all the same. I found that out the hard way as well! It's your right to have access to the proper healthcare that's available, and it's your right to be treated like any other patient not like a red headed stepchild because you have a bleeding disorder. God Bless you have a great Christmas and Holiday!

posted December 18, 2017
A MyHemophiliaTeam Member

I’ve never heard that or of those?! But I just googled it and found one not close but around 40 miles. Moving forward I’ll definitely look into that! Thanks!

posted December 12, 2017
A MyHemophiliaTeam Member

Cannot say enough good about HTC’s. I have dealt with 4 different centers over the years and they have all been great.

posted April 30, 2018
A MyHemophiliaTeam Member

Thanks, once again I wasn’t able to use one for this surgery but I have another coming maybe two more so it’s my priority to get to one of those centers! I’m so done dealing with these dr’s!!

posted March 4, 2018
A MyHemophiliaTeam Member

Do you have a hemophilia treatment center in your area? Regular hemotologists don't really know how to treat you properly. They are not trained in the many faucets of hemophilia and bleeding disorders. It sounds moronic to me but I found this out recently. I had been going without proper treatment for 6 years because I believed they were the end all.

posted December 12, 2017

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