Odd Question About Blood Volume.

[Tanzanite]

So we're meant to have low blood volume. Shouldn't we be getting transfusions every so often? Would it help?

[Sunfish]

what do you mean by "we're meant to have low blood volume"? do you mean that many of us with autonomic dysfunction(s) do have low blood volume?

regarding transfusions, we don't necessarily have low amounts of the various components of the blood and blood products are at a premium so my guess would be that this would be considered "too much" of a fix where saline or perhaps procrit can help. there are also potential reactions/problems with transfusions and blood products are never given lightly. and there is a major shortage of blood is many if not most areas.

just my thoughts...

melissa

[Tanzanite]

Yes, that people with POTS are meant to have low blood volume.

[MightyMouse]

Not everyone with POTS has low blood volume--only a portion of those with the diagnosis. Rather than get transfusions, there are other things that work for "volume expansion", including a high salt & high fluid diet, liccorice root (DGL), as well as medications like Procrit injections to increase red blood cell production. Also, some people get saline IV's to boost volume.

Transfusions of blood and blood products is not standard treatment for POTS.

nina

[juliegee]

When my son was DXed at Johns Hopkins; the cardiologist there said that everyone with an orthostatic intolerance has low blood volume. He said that we are like coke bottles that are half full. We feel better when we lie down because "Coke" can finally get to our brains. I've also read it's like we are bleeding all of the time and no one can find the leak. That's why we are supposed to stay extra hydrated and takes extra salt, etc. to increase overall fluid volume in the body.

Julie

[Sunfish]

it's simply not accurate that all have low blood volume. many or perhaps most do, but some have been tested and have found out that their blood volume isn't low at all. of course this doesn't mean that all might not feel better with higher/greater blood volume, but technically speaking not everyone starts out low.

i know mack's doctor at hopkins and he definitely is tops so i'm not trying to contradict him but perhaps he was speaking in a certain context or referring to the possibility that those with OI have too low of a volume FOR THEM (but not necessarily low as would be measured on a blood volume test). additionally if blood is pooling, one could easily have normal blood volume but not normal perfusion/circulation into the brain - still fitting perfectly with the coke bottle analogy.

melissa

[MightyMouse]

Melissa is quite correct on this one--low blood volume is only found in a portion of patients with POTS, not all. I forgot to add that florinef is one of the drugs used to boost blood volume by tricking the kidneys into retaining more sodium, which in turn bolsters the body's total fluid level, including the fluids in blood.

Nina

[juliegee]

Good point about circulation. Even with the correct volume it's not circulating properly. I'm learning For the record, it wasn't Dr. Rowe who made that comment. (He is the tops!) A cadiologist named Brinker used the coke bottle anology.

Julie

it's simply not accurate that all have low blood volume. many or perhaps most do, but some have been tested and have found out that their blood volume isn't low at all. of course this doesn't mean that all might not feel better with higher/greater blood volume, but technically speaking not everyone starts out low.

i know mack's doctor at hopkins and he definitely is tops so i'm not trying to contradict him but perhaps he was speaking in a certain context or referring to the possibility that those with OI have too low of a volume FOR THEM (but not necessarily low as would be measured on a blood volume test). additionally if blood is pooling, one could easily have normal blood volume but not normal perfusion/circulation into the brain - still fitting perfectly with the coke bottle analogy.

melissa

[Sunfish]

gotcha thanks for clarifying about the doc...you're right in terms of who i was thinking it was.

and we're all learning....though i'd say as a general rule there are very few (if any) "absolutes" aka things that apply to everyone in the land of dysautonomia.

melissa