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Hello all and a belated Happy Thanksgiving. It's been a while since I've posted, and we have faced some new challenges.
Dad blacked out in the bathroom on Nov. 15th, fell and hit his head. He had a sub arachnoil bleed in his brain, and gave us a terrible scare. Fortunately, he had received platelets on the 11th, and the bleed stopped before becoming a very serious issue. The CAT scan taken at the hospital upon arrival, and the MRI taken at about 8:30 that evening showed very little change in the amount of blood in the brain.
In the meantime, Dad's been complaining about back pain that has progressively been getting worse. They thought it may be his gall bladder, but an upper GI series concluded that was unlikely.
Because of the fall, the doctors did an MRI of his back, found some irregularities and followed with a bone scan. Still unsure, they performed a biopsy (on 11/25) in the T9 and T10 area of his spine. They have diagnosed Dad with osteomylitis, which is an infection in his bones! He is on a wide spectrum antibiotic, and will need to continue IV antibiotics daily for 42 days. Dad's no sissy, but the pain in his back became so bad that he could barely move. Needless to say, this has been a setback for him, as he has already been struggling with regaining his strength after his previous 5 month stay in the hospital.
My Mom is having a very difficult time with all of this, and I must admit, I have had many days where I get very discouraged and very tired. The complexities of dealing with severe AA are frightening and daunting. I know infections are a constant concern, as we are dealing with compromised immune systems.
In a way, Dad's fall was a blessing, as I don't know how long it would have taken to discover this bone infection! By the way, he never ran a fever - which is common with osteomylitis - however, the infection is quite extensive and the radiologist said it's no wonder he's been in such terrible pain!
Dad is also experiencing pretty bad esopageal spasms, which is making it hard to eat. Has anyone else had this difficulty? I wonder if it is a side effect of the cyclosporine, since it is such a potent medication with gastrointestinal side effects.
Additionally, Dad's kidneys were damaged 4 years ago due to the length of time it took to diagnose the vasculitis. The original antibiotic they were using for the infection was toxic to his kidneys, so we've changed meds. Of course, the cyclosporine is also tough on the kidneys - so it's been a real balancing act with all the meds.
I am so thankful for this site! Though I don't post often, I do check in frequently. I sincerely appreciate all the information and support you all offer.
Deb, daughter of Paul Wenz, diagnosed with SAA 8/07, 2 ATG treatments, last one in May 08, beginning to experience longer intervals between RBC transfusions. Dad is incredible, the kindest person I've ever known.
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