ANCY

Dysautonomia and severe anemia

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Hi, thank you for taking the time to read my post. I was admitted to the hospital yesterday for the 4th time this year... Since May I have had difficulty with my blood counts, rbc h&h to be specific. Because I was hospitalized last week, Tuesday through Thursday, it is very concerning that in 5 days I went from 8.1 to 5.2, this time without obvious bleeding. The hematologist that saw me today wants to investigate hemolytic anemia and possibly do a bone marrow biopsy. She is concerned that I am high risk for reoccurring blood clot and that the ivc filter will not be enough so starting me on lovenox. However the hospitalist wants to just send me home, changing the anemia to chronic and told me "this is my new normal" with a lot of work my mom was able to get them to pursue more testing so ended up staying tonight. Of course they dc my iv fluids and tube feeds so going to be a rough morning... 

Anyone else here have experience with hemolytic anemia? 

Anyone with experience with PE and severe blood loss? 

How about with severe anemia that causes counts to drop rapidly?

What about EDS and anemia?

Thank you for any input!

 

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Hi ANCY!  I am so sorry you are still feeling so bad!!!  M had a bone marrow biopsy a few years ago.  You can do this.  I would recommend some moderate sedation, though.  It would make it far more comfortable.  Has anyone checked you for autoimmune?  Would it be in the realm of possibility that someone hooked up a bag of blood that wasn't your type?  Yeah, mom!!  Sometimes we just have to step in there and tell THEM what needs to be done, not the other way around.  Hang in there, and still prayin!  I'll text you tomorrow, M has a lumbar puncture in the morning, more pseudotumor cerebri again. 

Lots of Hugs!!

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Ancy can't help you with your questions but just wanted to send hugs best wishes  and good luck to you , hang in there x

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DizzyGirls: Thank,you for praying! Im hoping it's not much different than the biopsy they did in my spine for the osteomylitis last year. Not sure on the sedation now, they wouldn't let me do tube feeds and stopped infusion so low on fluid which makes me hyperreactive to sedation... 

I have several general autoimmune tests that were positive, but nothing specific. Neuro believes my dysautonomia is autoimmune based.

No, they check it 4 times and all different ways to make sure that doesn't happen. There can be latent effects of transfusion but they don't think that's what is going on. 

Will be praying for Melissa, LPs are no fun...

Indeed! My mom got 3 case managers on it and it went all the way to Tricare's medical director. They are also starting an investigation because of how things have been, keeping me from outpatient care. 

Dancer65 thanks so much! I'm trying to hang in there.

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Are they doing the biopsy in your hip? I had one several years ago. It wasn't pleasant, but it wasn't as bad as I expected. It is all in the placement of the needle. If they hit a nerve, it will not be good, but if they don't, it will be okay. That last push through the bone was a strange feeling, but it didn't hurt. My advice, don't look at the needle until after the procedure. 

I hope you get some answers soon. You have been through a lot.

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Thanks KiminOrlando, Still waiting to hesr from the dr if we are going ahead with the biopsy or not... Did you have any pain afterward? The bone biopsies they did last year were painful but they were going into infected bone. They actually broke their needle last time lol!

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So sorry you are having such severe health problems.

When I was in the hospital earlier this year with severe POTS my hemoglobin also dropped while there from 11 to 9 as I recall.  My doctor said it was due to IV fluids diluting my blood.  I don't know if this could explain it in your case.  It might be something to ask.  Your drop seems very large for that to be the explanation completely.

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Yes, I have been told that before too. It certainly isn't the culprit at this time because the tests have been done away from iv fluids and still show a drop. Hemoglobin was 9.6 yesterday and today 8.5 and I have had no iv fluids or tube feeds.

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Oh my! I don't remember any significant pain after the test. It was more of a dull ache that OTC pain meds helped. I have rheumatoid-arthritis, so I probably couldn't tell the difference. They did not allow sedation as it was against their policy, but they may have allowed me a Valium. They were looking to see if my bone marrow had a defect that made it difficult to produce blood. I remember them saying I was borderline, but technically functional. 

I can't imagine having that in an infected bone. It shouldn't be as bad as that. 

Hey, the good news is, you have strong bones.

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Thanks for sharing your experience. I doubt they will give me sedarion at this point because they've held my fluids and feeds so long my BP is horrible... Right now it's kind of looking like we may just go home, at least there I could have my feeds and fluids going. There plan for me is just come back in 5 days when my hemglobin gets to low again. So if it follows the trend we'll be back Sunday or Monday...ugh...

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Any particular reason they dont just get it over with now? Its a sensible test under the circumstances and may give everyone some answers . (My mother had one in her 70s and was fine with it even tho she like me didnt do well with meds and other inteusions) ) You dont need to answer if youre trying to conserve energy. I will try to read your story before asking any more questions. 

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Hi - I am not at all familiar with anything that you are going through but I am really thinking you should to the testing for hemolytic anemia. I think it is weird that they would tell you that a hgb below 6 is " your new normal" . There are so many issues with you - in my opinion any investigation can only help. 

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So hematologist came to see me and decided to go ahead with the biopsy tomorrow. My blood work showed I do have hemolytic anemia right now, just don't know why so doing more blood tests and the biopsy. Still plan to send me home tomorrow, obviously don't need to stay for blood tests to come back. MY hematologist sees me Wednesday so they want him to continue working on finding why I am destroying blood cells.

Thankfully I have a different hospitalist today, he's taken care of me before and is great, actually finds value in what the patient has to say. So he sat down and asked what my home regimen is, what meds i need him to write and actually agreed that a bolus of fluid would be a good idea so I don't take as long to bounce back from that. So got me my tube feeds, 2 liter bolus, regular infusion, did the iron infusion, and a B12 shot. He agreed that the lack of fluids is probably what set off the urinary retention so went ahead with a Foley so don't have to straight Cath a bunch of times.

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@ANCY - I am glad that he took his time and gave you the things you need to go home as "stable" as you can be before sending you home. I wish there could be a solution for all of your issues - this has been going on far too long! Thank you for always keeping us up-to-date, you are in my prayers! 

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ANCY I am so sorry you are dealing with all this :( but I am relieved to see that it is being investigated. It is not normal or sustainable for anyone to just live with a haemoglobin of 5.2 and something is definitely going on to cause this. I hope you soon have an answer and a treatment plan. 

I'm the opposite - high haemoglobin due to low plasma volume! I don't really have high Hb or red cells it just looks that way as my blood is too thick and concentrated. 

Keep fighting and I will also pray for you.

B x

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Have they done the test that checks your mitochondrial DNA? Was that what the biopsy was for? I can't remember all the way back to mine.

I assume they tried Epogen or you are not a good candidate for it.

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So biopsy is done, went as well as it could. Was done by a pathologist and he doesn't expect anything to be abnormal. He thinks it's hemolytic because of antibodies but they can't pick it up on tests because of the transfused blood. I guess we'll see, takes a week for the results to come back. 

They ended up keeping me another night which is probably a good thing. Cant get my tube feeds up and the tube keeps spinning around and kinking. They also saw some funny things on telly and combined with my chest pain I guess they want to interrogate my pacemaker. I really hope it doesn't mean another night here... 

I have not had mitochondrial testing. Biopsy was done to see if there are any abnormalities that could explain the blood loss. 

They don't want to give me epogen because of my risk of clots... Hematologist is already considering restarting them because rhe ivc filter only really works for clots that form below it. So if I formed a clot anywhere else I wouldn't be covered. 

Thank you all for tour prayers, support, and well wishes. Nice to know people care!

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