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Yard Sale Diva
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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.
 

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((((HUGS))))

You have really been through a lot recently and you have posted a very important reminder about those regular blood tests for those on immunosuppressant medications. Many people are advised to do them twice a month at first and monthly thereafter.

Sounds like you needed a new GP and I hope this one continues to follow up on you and sort out whatever is left and making you feel so tired still....

Take care and keep us updated please. I hope you are feeling better soon & everyone in your family can rest a little easier then too.
 

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Inky
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Jen

Thank you for the very timely advice, it is easy to let the blood appts slip! My doc has a practice of refusing prescriptions if blood tests are not kept up at my end, it really works

We have Aspergers in the family - my partner, step-daughter. step son and grandaughter. So I really understand the stress you are under although thankfully my grandaughter is continent after a terrible phase of bed wetting etc! They all have it quite mild but it seems to be worse when younger. Now you are a little better hopefully your son will be more settled, it must have upset his need for routine and regularity (no pun intended) you going into hospital.

I hope things really continue to pick up for you and your family. It is no surprise to me that you became ill if you have financial and personal stress, I am just pulling very slowly out of a similar, but less scary bad health patch where my body protested all the stress in our lives.

Sending you gentle healing thoughts
love
Sara
 

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Wow Stress Can Cause so many more problems

Jen,
So sorry that you are having such a bad time of it. Sounds like you do have good support in your daughter and hubby. Boy, if the hubby is understanding it makes such a difference. I'd have to say mine has been pretty supportive although through the years he hasn't always been as good. After 48 years it's about time we get it right huh?

Just to be able to get some others insight sure does help. Keep smilin'
 

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Oh (((((((Jen)))))))) :hugbetter:

You're really going through a lot Jen.... Your hospital "adventure" sounds like a scary experience indeed.... :( 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!
You're 1000% right about the blood test monitoring while on immunossupressants and thank you for reminding us all; it's very, very important to get regular monitoring!

Will your doc put you on another immunossupressant to replace imuran or not at the moment? Imuran could, in theory, affect the liver enzymes but of course while you're on it and for a short period after one comes off it and so I wonder if that could be a factor in the liver enzyme increase in your case (if you've very recently stopped imuran that is)?

Try to take it easy (somewhat at least) for a little while too to give your body a chance to recover from the ordeal it's gone through... :blush:

Sending loads and loads of hugs your way and many, many wishes for an extra speedy recovery :grouphug2::grhug::hug:

:flowery:

Zoi
 

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Dear Jen, I am really sorry you have so much stress going on. Severe anemia is awful, when I had it I just wanted to cry from fatigue-and I am not a crying person!

I hope you can get some extra help for your Son, and am really sorry about the financial stress-it makes everything so much worse.
x Lola
 

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give yourself some time. It can take a while to feel well again after a bout of anemia.

hope you feel better soon

raglet
 
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