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Vacation advice

This topic has 3 replies, 4 voices, and was last updated 2 years, 5 months ago by Jimmy Greenhut.

Viewing 4 posts - 1 through 4 (of 4 total)

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October 26, 2021 at 1:21 pm #55722

Paula Voell
Participant

I have intermediate MDS; last hemoglobin was at 6.2 (before transfusion of 2 units of blood.) My only treatment for the last 5 months has been transfusions at an interval of about 6 weeks.
We are considering going to Hilton Head for a couple months, from Buffalo, but I am concerned about being immunocompromised and also arranging for transfusions in another area.
Anyone have advice?
Paula, age 79

October 26, 2021 at 7:51 pm #55723

debbie stern
Participant

Hi Paula,
I live in Buffalo too and am treated at Roswell which is probably where you are treated?. This would be a good question to discuss with your Oncologist. I bet they could help arrange transfusions in Hilton Head if they are okay with you going.Feel free to contact me. My number is: 716-688-0058.

October 27, 2021 at 7:21 am #55725

Bob Cook
Participant

Contact the MDS foundation here on their website. I went to a conference and asked about traveling overseas and they can give you a list of Center for Excellence anywhere, and arrange to have you bio on file in case it’s needed so those centers know you.

October 28, 2021 at 8:58 pm #55742

Jimmy Greenhut
Participant

Get your booster, ask your Dr if he knows anyone there? Your Dr might be able to give orders? For a hospital where you can get a CBC every 2 weeks and transfusions as needed. Or check with the MDS foundation. Your Dr should give you a couple pints to start off with too. You also shouldn’t be getting down to Below 7.5. 6.2 HB that is low. “Quality of life” Moffitt is on board with that for me. GL & happy travels 🙂
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