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Question About Low Blood Volume...


lalalisa
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Hello,

About 2 years ago I found out that I have a 35% deficit in my blood volume (Daxor BVA-100 Automated Blood Volume Test). When I explain this to people they say..."why can't you just be given blood transfusions?". I actually don't ever remember asking a dr. this question so in the mean time I'm asking you guys.

What do you think? I have 2 answers that I've thought of....

1) my body may not be able to keep and regulate the right amount of blood

2)it would seem quite impractical

Any other thoughts on this topic?? :)

Thanks so much!!

Lisa

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Here is an old link that you may find interesting. http://www.pediatricnetwork.org/medical/CF...dvolstudies.htm

There is a newer journal article out published by Vanderbilt that also cites the above and adds to what you are raising. If you are interested in the article pm me and I can email it to you (it's only 4 page article)

I have had several blood transfusions this year--not for the purpose of correcting my blood volume but it did help with that issue for a couple of weeks. It is a temporary solution though so the risk vs. cost vs. benefit is not so good. That would be my guess as to why it hasn't really been done much--just my guess but it's pretty much what you think as well. I had to have filtered blood and I still had reactions to the blood and I learned that getting a blood transfusion is not as simple as many people think.

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I guess it's risky, and blood products are often in short supply, so they're saved for people who are in grave need. With blood volume that low, though, with dysaut, I'm assuming it's causing problems for you... are you doing other things to "beef" it up?

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I think IV saline accomplishes the same purpose and may be easier, cheaper and safer than a transfusion. But it seems like only a few people use saline - it is controversial, I'm not sure why. For me the effects of an IV (which I only had a couple of times) lasted for a day or two. Have you tried florinef? It increases blood volume in a more constant way.

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Thats the salt theory. The way to higher blood volume is higher water intake. However, we are professional pee'ers. So, the salt helps the body to retain the fluid instead of shedding it. If you have POTS+ actual low volume, you have 2 problems. You are a quart low and your body thinks you are two quarts low. So, with a transfusion, your body would still think you are a quart low. I get 3% saline infusions, but then its only a temporary fix.

Not to make light of it, but I once discussed vampires with my neurologist and we theorized that Dracula had pots because he loved to lay down- hated the sunlight, was pale and needed an increase in blood volume. I think he may be just misunderstood! (although, what's with the cape- I don't know)

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Thanks for your input everyone!

The dracula Hypothesis made me laugh!!

I have tried Florinef a couple of times and got headaches from it. I'm not sure why...

You guys are so helpful! (and funny)

Lisa

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Hi Lisa,

I have low blood volume using nuclear med chromium labelled test. I am 35% feel pretty bad. the red cell volume is lowest.

IV Saline helped me when i trialed it but cannot get it on NHS and trying to find dr who will give it at times. EPO also would work.

Florinef sometimed does not work as it can make you pee more (renin /aldosterone problem) for me. If i have the saline into vein - florinef retainds it for longer. So for me I want to try the IVsaline, EPO and Vassop to see if it helps.

Cheers nicho UK

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Nicho,

Hello! Thanks for your input! Can I ask you what EPO is ?

Thanks!

Lisa

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EPO is short for erythropoetin. Erythro = red blood cells.

It is a chemical that is usually secreted by the kidneys and tells the body to manufacture more red blood cells. An artificial EPO is used for patients with chronic kidney disease and low haemoglobin levels (anaemia) to boost their blood count and reduce the need for transfusions. A side effect of EPO is that it raises your blood pressure.

EPO has been abused by athletes trying to gain an unfair advantage in competitive sports, it has a similar effect as training at high altitude, hypoxic / hypobarric training and blood doping.

There were concerns on the UK press recently about the safety of EPO (sorry can't remember what the problem with it was) but it is still used for the kidney patients because they are already very seriously ill and the risk is considered to be worthwhile.

Flop

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