Bloodtransfusion

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Sick and Tired of being sick and tired...


No one can seem to figure out what is going on with me. My body is one huge mess. In February I was sent to #ER when my PCP had my labs drawn STAT at her office because she said I looked white as a ghost and noticed that my hair had drastically thinned.

My hemoglobin came back at 5.5 and so I ended up admitted to the #Hospital for a few days where I received a blood transfusion (2 units then). They monitored me and my hemoglobin went up to 8.3 so I was discharged & sent home.

I followed up with my #hematologist and it was decided that I would have a #PiccLine placed and would begin a series of #ironinfusions . Since February, so in the past 8 months, I've had to have a total of 7 #bloodtransfusions (for a total of 13 units transfused).

My #Endoscopy and #Colonoscopy showed no signs of a GI bleed. Even the site where I'd previously had a severe bleeding gastric ulcer is nicely scarred after having it cauterized 3 years ago. My #BoneMarrowBiopsy came back normal. My #uterinebiopsy came back normal. I even had the #capsuleendoscopy (#PillCam ) done to check further into the small bowel and apparently that came back normal as well.

I've had over 30 iron infusions (have tried both #Ferrlecit and #Injectafer ) and still my Ferritin levels, Iron levels, & Iron Saturation remain in the single digits.

They've not been able to get my hemoglobin above an 8.3 and it's only been above 8 two times (an 8.3 once & an 8.1 another time). On average, I live on a day-to-day basis with it in the 7's, but it has dropped down to 5.0-5.5 over a handful of times. It seems I've needed a #Bloodtransfusion nearly every month.

I'm so utterly exhausted all the time. I have no energy or motivation for anything. My life consists of appointment after appointment. I basically don't leave my house unless I'm having to attend an appointment. I just don't have it in me.

My depression has hit so hard. I isolate even more than before because I have absolutely no energy. And that only fuels my #Depression and #PTSD even more. It's like the life is being sucked out of me in all directions.

And the doctors seem to be following up with me less and less. Like this is no big deal. If only they were the ones having to go through this...

#IronDeficiencyAnemia #Depression #PTSD #MedicalPtsd

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Rollercoaster #EhlersDanlosSyndrome #Bloodtransfusion #Lowbloodpressure #Spinefusion #EDSAwareness #Edssucks

This hospital stay has been such a rollercoaster ride. I was having chest pain and it turned out it was because of gastrparesis. That then caused an illeus which also then caused fluids to be aspirated into my lungs and caused ground glass nodules. I also had really low blood levels which I required a blood transfusion for. They are still low. I also had low calcium magnesium and potassium.Then my blood pressure has been low so they had to give me fluid boulises. I’ve been so exhausted and surprisingly not hungry for having not eaten in so long!