A Life Surprise

Hello! about 10 days ago I had some shortness of breath and fever. I thought I had asthma following the flu. I also had symptoms that I did not know what they meant (pale lips and orange urine and stools). I was sent to the ER for shortness of breath. I had a hemoglobin of 6.5 and was given 3 units transfused over two days. I was Coombs test positive for autoimmune hemolytic anemia. Over the next days in the hospital , the hemoglobin rose to 8.8 and held, then 9.3 and I was sent home to rest. They also found a blood clot in the calf of each leg.
It is important that I had taken penicillin right before the orange urine began.
I am home as of yesterday and very confused!!! I was not given any steroids, I think they are waiting to see what happens over the next few days. I am supposed to start a new job in two weeks, and I don't understand if this disease is a one time incident that I dont have to worry about, how long will it take to recover my breathing, can I take the new job, or a chronic disease that will continue. Please help if you can.
Cindasong Cindasong
51-55, F
3 Responses May 17, 2012

I have started a Facebook group where we can all chat about what we've been through and we can talk about the different treatments that we have all had.

https://m.facebook.com/groups/1399908783560795?ref=bookmark&__user=791265514

Please join its great to chat about AIHA I have leant so much from the people I've met so far.

Hi. Hope you're feeling better! I was in the hospital for 4 days and 2 units of blood. Left on steroids which really didn't help hemoglobin levels. Had 4 Rituxan treatments which did the trick. Hemoglobin is now at 13.7! Tapering off steroids. Like you, not sure what future holds bt wanted to give you encouragement. My doc says it will come back but don't know if it's weeks months or years. I'm counting on the years angle! Feel better than I have in along time. Not sure how long my hemoglobin was low but breathlessness got so bad I couldn't ignore it any longer. Taking folic acid, multi vit, and calcium with D3. Doc wants me to take folio acid. No issue with the others.

I orginally went in for shortness of breath myself as well as other symptoms. I had a hemoglobin level around 6ish. I didn't get an transfusion and they put me on steroids. They found a blood clot in my lung however that was due to another autoimmune issue called anticardiolipin andibodies syndrome. I hope your hemoglobin continues to get better and you don't have another episode. I think it is different for everyone. My breathing got better with the increase in hemoglobin, the blood thinners, the steroids, and the inhalers for my asthma that I didn't have until I was diagnosed with AIHA. I have had several relapses and rounds of prednisone. Since my body won't regulate well on its own I am now about to start Rituxan. Ask your doctor direct questions on what is happening with you. We have had to do that to try to understand what is going on. I pray you are much better and get the answers you are searching for.