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Old 06-05-2018, 11:49 PM #3
ErinBear ErinBear is offline
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Join Date: Jul 2014
Location: California
Posts: 162
8 yr Member
ErinBear ErinBear is offline
Member
 
Join Date: Jul 2014
Location: California
Posts: 162
8 yr Member
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Dear Annie,

Thanks for your reply. My hemoglobin is 8.7, which is not the worst it has been in the past (6.7) but I am feeling it. We did start some treatment for it a couple of weeks ago, injections which are supposed to help the bone marrow make more red blood cells (Aranesp). So far it's taking awhile to take effect, which apparently is normal. Maybe in a couple more weeks there will be some improvement (?).

Yes, I have had a sleep study in the past, but there aren't any plans to do one right at the moment. I know sometimes my oxygen levels can dip down, but it's not consistent, so apparently it's not a problem. I do not qualify for oxygen support. I do sleep with a non-invasive ventilator (BiPAP/AVAPS machine) to assist my breathing.

The hospital does blood tests weekly as part of my plasmapheresis treatments. My CO2 levels are generally around 20 or 21. They have been running low. I have had ABG tests in the past, but not lately. Generally those results are high, so that it appears that I am hyperventilating, but I am not - I guess it is just that I have a hard time breathing because of my respiratory weakness.

Yes, it would be nice to get a second opinion if I could. I am thinking about it also but it's hard to work out the details. I know where I would like to go if I can arrange a ride there.

Thanks again, and sending best wishes your way.

Take care,
Erin
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"Thanks for this!" says:
AnnieB3 (06-09-2018)
 

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