Long time reader, first time poster - reading everyone's experiences is such a relief in some ways, and infuriating in others - needless to say, IBD is a massive drag.
I (29f) was dx'd with Crohn's of the small intestine/iluem three years ago, after going to the ER with intense pain and unable to keep food down. I've been pretty much in a flare since - without a lot of success from medication. It's shocking what you can get used to in your everyday life, extreme weakness and anemia, diarrhea for a week straight never seems out of the ordinary, the pain, the constant discomfort and a brain that moves like molasses. I had been cancelling work appointments more and more consistently - which, as someone who is self employed, is something that I do in the worst case scenario - there's no one to call in, no paid leave (and worst of all, no insurance, but that's another tragic story). Over the course of three months I just felt myself getting weaker and weaker, I received an iron infusion as a temporary fix which almost made me feel human. Through December 2015 I kept sleeping more and more, getting intense random fevers and chills, all the while having diarrhea for about a month straight with no reprieve. It wasn't until I started blacking out walking from room to room in my apartment when I sent a message to a couple friends being like, "hey, I don't want to bother you, but can you maybe take me to the ER?"
The details of that night are really fuzzy, but once they got my full blood work back, I remember being tossed between every test possible (I also remember throwing up the Volumen solution on my nurse, sigh) - I remember getting the extremely painful vas-catheter put into my chest through my neck for plasmapheresis (plasma exchange, similar to dialysis). What I thought was just extreme dehydration and Crohn's nonsense turned out to be full renal failure and a hemoglobin of 3.4 (normal is around 12). My kidneys had developed micro blood clots in the capillaries that were essentially shredding the healthy red blood cells as they passed through. This turned into a 7 day ICU stay (then 3 extra general ward days after developing pneumonia) - I estimate most of my plasma and blood volume was exchanged, sort of like an full oil change. The nurses were shocked I walked into the ER myself, most with a hemoglobin that low are unconscious, if I had waited any longer I could have had a heart attack, or you know, died.
I was eventually diagnosed with HUS (hemo
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Before I start, the link to donate is here: www.gofundme.com/AndreaAHUS
My sister Andrea has been diagnosed with a very rare disease known as "Atypical Hemolytic Uremic Syndrome", or aHUS. It's caused by the complement (part of the immune system) attacking her blood cells, causing them to pop. The fragments of the popped cells clot up the kidneys, and can clot up other organs like the brain. Even though there is clotting, the blood is also thinned, making breathing harder and harder, so there's no easy fix.
The only known treatment is with a monocolonal antibody known as Eculizumab (Soliris). This antibody inhibits the complement proteins responsible, allowing the blood count and kidneys to recover. Since this antibody is not produced by her own body, it has to be given to her on a weekly-to-monthly basis, intravenously.
Soliris was invented only a few years ago, and the treatment costs about $300,000-$500,000 per year. Only about 1000 people per year in the US are diagnosed with aHUS, and have a 5 year survival rate of 30%. However, in Andrea's case, doctors said without the Soliris she would have died in a few days. It is the only real long-term treatment available, and has allowed people to fully recover even after being on dialysis.
On top of the Soliris cost, the hospital bills are exorbitant. Her first bout of aHUS resulted in a hospital stay of 3 weeks, with daily blood transfusions, and plasmapheresis. It's not clear when she will be getting back to work.
She was released from the hospital after 3 weeks, but not even a week later was readmitted due to a high fever from an infection in her kidneys.
If you can donate, please do. I'm going to put this in as many places as I can. Any amount will be appreciated.
Again the donation link is here: www.gofundme.com/AndreaAHUS
34/Female/5'6"/137lb/No medications/No drugs
Symptoms:
- Tachycardia
- Palpitations
- Weakness
- Fatigue
- Shortness of breath
- Episodes of numbness in limbs/face
- Distended hard stomach (2-3 years) that comes and goes. Not gas, not constipation.
- Pain in very specific spot below ribs, upper right side
- Trembling
- Hands/feet cold to the touch
- Need to eat constantly or risk an "episode" begining: trembling/shortness of breath/worsening of weakness/numbness
These symptoms have been going on for many months and increasing in severity. Sometimes i struggle to breath for many hours, extreme weakness, and feel like im about to die.
I just had blood/urine/feces exams done because of all the symptoms im experiencing. Many results were within range, some on the high end, a few are off. The strangest part to me is that i KNOW i dont get sufficient dietary iron, so why is my blood serum iron level so high? I suspected i had severe anemia, i had slight anemia during my last pregnancy which caused exhaustion and weakness. Google pointed to "hemolytic anemia" as a possible cause but obviously i have no idea. I have an doctor appointment to review the results next week but im worried and hoping someone can give some insight if possible. I feel terrible every day and 2 days ago layed on the ground unable to move my arms/legs and was losing vision.
I can post my entire lab results with information cropped out but it contains about 30 items.
Blood iron serum 206.80 (range: 37.00 - 145.00)
I have a 3-year-old female (spayed) English Springer Spaniel that was diagnosed with IMHA on Saturday morning and has been in the local 24/7 pet hospital since then. She's on all of the normal treatments (steroids, immunotherapy, fluids) and had a blood transfusion yesterday and may have a second one today. I'm just scared shitless.
Have any of you ever encountered this? It's heartbreaking and I'm looking for some hope (but also am realistic that she might not make it)
He had it earlier in the earlier, gave him some steroids and he got better. Its come back and now they want to start him on rituximab and after reading everything on the internet, i am terrified to let him get it. Does anyone have any experience with this?
Deleted for confidentiality reasons.
Hello. I have a mix breed 9 year old female dog. She is spayed. Ok so long story short, some four months ago she became very lethargic, didn't want to eat or move much. Of course we went to the vet but couldn't find what exactly did she have. We did several blood tests, all while she got worse and worse. The vet initially thought she had eaten rat poison, then he thought it was a bone marrow disease because she had no red blood cells whatsoever. So in those days as I was saying my goodbyes to her the vet spoke to a colleague or something and she suggested that maybe it was an Autoimmune disease. So we started with prednisone and cyclosporine... And it worked! She got back to her old self, she's eagerly eating now and it seems we found the problem. She has Autoimmune hemolytic anemia (AIHA). Now, unfortunately the vet, by his own admission, doesn't know much about the disease and the long term treatment going forward. That's why I'm here. I would love to hear your stories. At the moment we're with the cyclosporine only. I understand we can't vaccinate her and it's very risky to walk her outside because her inmune system is pretty low right now. Thanks for reading through :)
Why are Nucleated RBCs, Spherocytes & Increased Reticulocytes found in the peripheral smear of a patient w Hemolytic Anemia? What is the exact reasoning behind this finding?
I remember reading it some where in the uworld but now i cant find it.
Is it because the bacterium is invasive? Or is it caused by an immune response? And how?
Hey guys,Im from INDIA and recenty diagnosed with alport syndrome along with policystic kidney disease.It started when i was having gross hematuria at the age of 6 years but then it was resolved with some medication.But recently my kidneys failed and an biopsy showed that my glomerulus are 80% damaged.It was so hard for me to swallow my kidney failure.After my biopsy our doctor suggested for an genetic disorder study and their report came after 2 months.I am having 3 genetic disorder 3rd one precisely known as hemolytic uremic syndrome.My transplant is gonna be after 3months and i just hope it succeds.The only thing i was worry about my eyesight and hearing.Cause these problems are not manifested currently in my case.As my nephrologist & ophthalmologist said that there is no defect in your eye and if there will be an defect,It would be by birth also im not having any hearing issues too I am in very depression and just wanted to share my story with someone also sorry for my broken english cause im from India-PEACE OUT
Also i want to know your views about this so you can comment here
In hemolytic disease of the newborn:
mother has antibodies against some surface antigen of the fetal RBC -> IgGs cross the placenta -> bind the RBCs in utero -> RBC hemolysis.
Theoretically, the baby doesn't have to be born for this to happen. Do we know then why the term "newborn" is in the name of the disease? Is it because we can first "see" the disease once the baby is born?
