Guest ANCY Posted May 13, 2018 Report Share Posted May 13, 2018 Just curious if anybody deals with blood loss and how it affects your dysautonomia? I was admitted yesterday with a hemoglobin of 5.1, lost 2/3rds of my blood. Likely been bleeding for a while but dismissed symptoms as just dysautonomia getting worse. Last two days I've been extremely tachy which has also affected my breathing. Anyone experience anything like this? Quote Link to comment Share on other sites More sharing options...
MomtoGiuliana Posted May 13, 2018 Report Share Posted May 13, 2018 So sorry for this. That is a lot of blood loss and probably anyone would develop some symptoms from that. Hope you recover quickly. When I have a heavy period I can feel a little POTS-y. But not sure if its related to hormones or blood loss. I try to keep up with it by taking fluids and iron and nutritious meals. Quote Link to comment Share on other sites More sharing options...
Guest ANCY Posted May 13, 2018 Report Share Posted May 13, 2018 I think that is what the er doctor told me, anybody would have symptoms at that point. I'm sorry you have such trouble with your periods, have similar issues there. I get iron infusions because I can't absorb an exhaustive list of oral iron. Fluids definitely help me though, we've been doing 3 liters a week for a couple months now which has really helped. Really hoping my port is not infected, don't want to loose it. Been treating me with 3 iv antibiotics for some kind of infection since late morning as I meet the criteria for SIRS/SEPSIS... Cause when could ever be just one problem? We were hoping I'D go home tommorow but that ain't happening lol! Quote Link to comment Share on other sites More sharing options...
DizzyGirls Posted May 13, 2018 Report Share Posted May 13, 2018 You're right! Never just one problem! Yep, my mom's doctor told her one of the times that she bled, that she most likely had been bleeding a lot longer than she knew. I hope you are feeling better. Hang in there, I'll keep praying! Quote Link to comment Share on other sites More sharing options...
Pistol Posted May 13, 2018 Report Share Posted May 13, 2018 @ANCY - do they know where the blood loss is from? I was a nurse before I became disabled and some patients they could never find the source of the bleed! --- I hope and pray that you can keep your port, I know the infusions are important. --- That is a very low hemoglobin, weakness/ tachy/ shortness of breath and even syncope are all normal symptoms for anemia, so hopefully they can replenish and you feel better soon. Just as long as they can fix what is causing the bleed! I will keep you in my prayers - you already go through so much every day and now that!!! Quote Link to comment Share on other sites More sharing options...
Guest ANCY Posted May 13, 2018 Report Share Posted May 13, 2018 Thank you dizzy girls! Pistol, my stomach is very erosive and has lesions but they don't think that can account for that type of blood loss. Temp has gone up again and still don't know for sure what he's treating... Hoping he can figure it out.. Quote Link to comment Share on other sites More sharing options...
TCP Posted May 13, 2018 Report Share Posted May 13, 2018 I hope you are feeling better now? I often have issues with blood test results and being slightly anaemic. I have put it down to my losing some blood in my urine as every time I have a urine test there are traces of blood in it. Also I am on Gabapentin and in the blurb it says that blood test results can be affected by taking it. Quote Link to comment Share on other sites More sharing options...
MomtoGiuliana Posted May 13, 2018 Report Share Posted May 13, 2018 So sorry ANCY I hope they get to the bottom of this soon. It sounds like your situation is very complex. Will be thinking of you. Quote Link to comment Share on other sites More sharing options...
Guest ANCY Posted May 13, 2018 Report Share Posted May 13, 2018 TCP unfortunately not feeling great, just got through another fever... Dr's are stumped, doesn't fit into a box but at least they're still looking. Possible reoccurring of my osteomylitis exacerbated by the IVIG I had last week. I'm also on gabropentin, not sure that is compromising anything at this point. Thank you mom to Giuliani! Quote Link to comment Share on other sites More sharing options...
Guest ANCY Posted May 17, 2018 Report Share Posted May 17, 2018 Update for those who are curious: Blood loss still being primarily blamed on my stomach although it seems I may be loosing slowly still as hemoglobin counts have been trending down and down to 7.3 today. Also found out today after a CTA that I have a pulmonary embolism which is the culprit of my fevers and breathing difficulties. Looks like I'll be here a bit longer... Quote Link to comment Share on other sites More sharing options...
MomtoGiuliana Posted May 19, 2018 Report Share Posted May 19, 2018 Oh so sorry for what you are going through. I hope you are comfortable and all will be addressed as quickly as possible. Quote Link to comment Share on other sites More sharing options...
bombsh3ll Posted May 19, 2018 Report Share Posted May 19, 2018 I am really sorry you are suffering like this and do hope you get some relief soon. I am glad you have good medical care and the causes of your problems are being identified. Have you had a transfusion for the blood loss? Look after yourself. B xxx Quote Link to comment Share on other sites More sharing options...
Guest ANCY Posted May 21, 2018 Report Share Posted May 21, 2018 Thanks so much for the well wishes and prayers! Things are starting to look up, switching to an oral blood thinner today which I can go home on and the dr has ordered another transfusion. The hope is that it will bring me up enough that if something happens I could make it to the ER. I'll still be low but not on the verge of critical and so the hope is to let my hematology dr handle it from there. As long as all is well post transfusion they hope to send me home today. Im so ready lol! 10 days in one room, going a little stir crazy lol! Quote Link to comment Share on other sites More sharing options...
DizzyGirls Posted May 22, 2018 Report Share Posted May 22, 2018 Yeah!!!! So glad you are going home!! I'll talk to you tomorrow! Enjoy your own bed! Quote Link to comment Share on other sites More sharing options...
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