angelloz Posted September 25, 2013 Report Share Posted September 25, 2013 My thinking is that blood is so much more than water and saline. Does anyone know if a blood transfusion has ever been tried for those with low blood volume? Might our bodies hold on to that better than water/saline alone? Could there be some other benefit??? i just want to try something that is not a medication that makes me feel worse. Quote Link to comment Share on other sites More sharing options...
Guest Hanice Posted September 25, 2013 Report Share Posted September 25, 2013 I have thought the EXACT same thing. I also think that would work! I mean, the blood isn't just going to disappear like our water. ? Right!? This Is a great question to ask the doctor in the dinet news letter. I think you should definitely ask this! Quote Link to comment Share on other sites More sharing options...
Guest Alex Posted September 26, 2013 Report Share Posted September 26, 2013 (edited) Volume depletion is usually caused by a deficit in total body sodium ions content. This may result from renal (kidney) or extra renal losses of sodium. The loss of sodium via the kidneys may be due to increased urination, aldosterone deficiency or salt wasting. Sodium can also be lost due to fluid loss from the GI tract (vomiting), from the skin (in burns or even excessive sweating), or from hemorrhage.To the best of my knowledge blood transfusions are THE treatment for hypovolemia caused by physical trauma (blood loss), but even in those patients, blood transfusions are only recommended in extreme causes. For minor blood loss saline is the fluid of choice for replenishing the intravascular volume since the body can re-build its own blood supply (think about those who are blood donors). For those who have lost a lot of blood though, the transfused blood replenishes the volume and corrects the anemia caused by the blood loss at the same time.For hypovolemic POTS the low blood volume is a chronic problem and it has to do with the faulty communication between the kidneys and the adrenal glands.Here is my understanding of hypovolemic POTS:The kidneys are responsible for detecting the low blood volume and when they do, they signal the adrenal glands to produce more aldosterone which promotes fluid retention thus increasing the blood volume and subsequently the BP. In some POTS patients, the communication between the kidneys and the adrenal glands is faulty (possibly due to damage to the sympathetic nerve fibers in the kidneys). If the adrenal glands don't get the right message from the kidneys, they don't produce the right amount of aldosterone that would "regulate" the blood volume. That's why some POTS patients report improvements after starting florinef (synthetic aldosterone).Also, I can think of at least 2 reasons why transfusions are a sort of a last resort type of treatment for any hypovolemic person.- $ - the large number of side effects that are usually associated with transfusions: allergic reactions, reactions of the immune system (the body rejecting the foreign blood), iron overload (this can permanently damage the heart, liver and kidneys) and so on. The side effects could be worse than those of a medication (at least in my opinion). With a med, you stop taking it and the side effects are gone after a while, but if your body is rejecting the transfused blood because it sees it as foreign, then you need to take extra meds to prevent subsequent complications.Hanice, you make an excellent point - how about you ask the experts about this. I'd be curious to read a specialist's take on this.Alex Edited September 26, 2013 by alex74alex Quote Link to comment Share on other sites More sharing options...
Guest Hanice Posted September 26, 2013 Report Share Posted September 26, 2013 Wow. I dont think they would explain it any better than that! Lol. I love your first reason as to why people dont choose blood t -$! Lol Quote Link to comment Share on other sites More sharing options...
Guest Alex Posted September 26, 2013 Report Share Posted September 26, 2013 Hanice, thanks.If I were you I'd still ask. Quote Link to comment Share on other sites More sharing options...
Guest Hanice Posted September 26, 2013 Report Share Posted September 26, 2013 Who me? I'm not asking anything lol. I meant for Angelloz to ask! Lol! Or you can do it :-P Quote Link to comment Share on other sites More sharing options...
yogini Posted September 26, 2013 Report Share Posted September 26, 2013 Blood supply is a lot more limited than saline and blood transfusions have more risk (you need to match the type, clotting, HIV, infections, etc). For many people with POTS, saline itself is a fix. I went from vomiting and barely being able to stand to totally normal shortly after getting saline. I am not sure a blood transfusion would have helped any more than the saline. Quote Link to comment Share on other sites More sharing options...
angelloz Posted September 26, 2013 Author Report Share Posted September 26, 2013 Thanks to all,Great points and all things I have considered! Whenever I increase my salt intake or take florinef I get severe migraines! A constant issue for me starting long before my autonomic problems. Yes, I have tried EVERYTHING for migraines! I start vomiting can't eat etc....with migraines that last 3-5 days, which defeats the fluid benefit. I have long realized that what makes my body feel better increases the migraine issue so I am stuck between a rock and a hard place. Can't function with a migraine and at least when my body is struggling I am not in severe pain. I doubt a doctor would agree to try a transfusion in any case, but I will ask my question about it when I go to the Mayo in October. Grasping at straws I guess, just want some " life " to my life! Quote Link to comment Share on other sites More sharing options...
Guest Hanice Posted September 26, 2013 Report Share Posted September 26, 2013 Angelloz do you increase the salt a lot, and suddenly? Because if you do maybe your body needs it a little less a little slower. I know salt puts me in overdrive. It increases my bpm and just makes me feel so bad. I dont over do salt, I dont feel it does anything for me (in terms of water retention). But.... When I started taking magnesium, potassium and vitamin d, I actually stopped peeing all my water I drink. I think that a GOOD electrolyte balance is essential. I think overdoing sodium isn't good in the long run. Quote Link to comment Share on other sites More sharing options...
angelloz Posted September 26, 2013 Author Report Share Posted September 26, 2013 I will try to balance my electrolytes more! I can't do the drinks due to artificial flavore and sweetners but I will try a home blend.Thank you so much for this tip!!! I am thinking about blackstrap molasses. Quote Link to comment Share on other sites More sharing options...
corina Posted September 26, 2013 Report Share Posted September 26, 2013 Alex, thanks for your excellent explanation!!! Quote Link to comment Share on other sites More sharing options...
Guest Hanice Posted September 26, 2013 Report Share Posted September 26, 2013 I will try to balance my electrolytes more! I can't do the drinks due to artificial flavore and sweetners but I will try a home blend.Thank you so much for this tip!!! I am thinking about blackstrap molasses.Just be really careful with potassium in a supplement form, it can be really dangerous. I think eating food really high in potassium are a better way to go (I think that why youre mentioning blackstrap molassess, I have to try this too!). I think magnesium and vitamin d are okay to take.The sun (vitamin d) is free :-) for now. Alex had a really good homemade Gatorade recipe all natural too. Maybe she can give it to you. :-) Quote Link to comment Share on other sites More sharing options...
Guest Alex Posted September 26, 2013 Report Share Posted September 26, 2013 Corina, thank you Angelloz, Hanice,here is a link to the thread on the "home made gatorade" http://forums.dinet.org/index.php?/topic/23700-diy-electolyte-drinks/?hl=%2Bhome+%2Bmade#entry221585also I did read about blackstrap molasses, but never tried it. It's supposed to be quite rich in manganese (not to be mistaken with magnesium!), copper, iron, and it does have decent (around 10% DRV) amounts of magnesium, potassium and calcium as well.Please let us know if it works for you.Alex Quote Link to comment Share on other sites More sharing options...
Guest Hanice Posted September 27, 2013 Report Share Posted September 27, 2013 Corina, thank you Angelloz, Hanice,here is a link to the thread on the "home made gatorade" http://forums.dinet.org/index.php?/topic/23700-diy-electolyte-drinks/?hl=%2Bhome+%2Bmade#entry221585also I did read about blackstrap molasses, but never tried it. It's supposed to be quite rich in manganese (not to be mistaken with magnesium!), copper, iron, and it does have decent (around 10% DRV) amounts of magnesium, potassium and calcium as well.Please let us know if it works for you.AlexWow thay sounds amazing. I'm gonna look into it. Thanks for the info guys. ♥♡♥♡ Quote Link to comment Share on other sites More sharing options...
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