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July 3 I was called by my rheumy that I had a hemoglobin of 5, which is supposed to be 15, and a low white blood count as well. I had been weak and beyond even lupie fatigued for a few months, but nothing was showing on blood tests. the morning before I went in I saw my GP's physician's assistant who while I was so out of it, and weak that I could bearly stand up let alone walk said, "Oh, its probably a upper respitory thing, I'll put you on an antibiotic.) grrr. Thank God, literally, that I noticed that I was late to get my every six week blood work for my rheumy, which showed my horrible blood counts. I was in the hospital for eight days. While I was there they also thought I had pneumonia, true, a pulminary embolism, no, fluid around my heart, no, gall bladder attack, no, and had to put me on pneutropenic precautions because my white blood cells fell in the toilet. that was basically that everyone had to wash their hands and wear masks and I couldn't have fresh fruit or veggies or flowers. Or a roommate in the room, that part was at least nice. The really fun part was that they didn't think at first that the anemia was medication related, and they were going to do a bone marrow biopsy to see if my bone marrow was failing. Then they kept putting it off, doing blood counts every blessed morning until the three blood transfusions took affect and we knew it was the Imuran, which they had taken me off of right away when I was admitted. Now my blood counts are back to normal, Thank God.
Now a month later, I am still just as weak and fatigued. I changed to a new primary care physician, who is much more decisive and firm, and taking my diabetes much more seriously as well as my autoimmunes. Now they found a urinary tract infection, and are ultrasounding my gall bladder and liver again. My liver enzymes are at an all time high. I have fatty liver disease, but now they are afraid the MCTD is attackingmy liver, and they just did alot of lupus/AI bloodwork again too. So all this has been a huge adventure. Huge. And my autistic (asperger's) 11yo son has been a behavior nightmare, and is now pooping his pants again, he is very scared and worried. Today we have a meeting with his therapists that come to the house. My 15yo daughter and husband have been huge helps, I basically can do no housework or cooking. There iis a huge amt of personal stress and financial stress otherwise as well. Not helping one bit. Sorry this is so long. I really wanted to tell you guys this because of the imuran connection. It is soooooo important to keep up with your regular bloodwork when you are on an imunosuppresent. Hugs, Jen.
Now a month later, I am still just as weak and fatigued. I changed to a new primary care physician, who is much more decisive and firm, and taking my diabetes much more seriously as well as my autoimmunes. Now they found a urinary tract infection, and are ultrasounding my gall bladder and liver again. My liver enzymes are at an all time high. I have fatty liver disease, but now they are afraid the MCTD is attackingmy liver, and they just did alot of lupus/AI bloodwork again too. So all this has been a huge adventure. Huge. And my autistic (asperger's) 11yo son has been a behavior nightmare, and is now pooping his pants again, he is very scared and worried. Today we have a meeting with his therapists that come to the house. My 15yo daughter and husband have been huge helps, I basically can do no housework or cooking. There iis a huge amt of personal stress and financial stress otherwise as well. Not helping one bit. Sorry this is so long. I really wanted to tell you guys this because of the imuran connection. It is soooooo important to keep up with your regular bloodwork when you are on an imunosuppresent. Hugs, Jen.
It's good that they got to the bottom of what was going on and that they got you off the imuran and back home now!
