Please help us...

Please help us...

Thursday, March 7, 2013

A "Down" Day

Today Jason is a little down. At 1:30 AM he woke me to let me know that he had a pretty severe headache. He has gotten severe headaches before. Usually he can sleep them off or, with medications, conquer them in a matter of hours. So, after calling the nurse to get meds, and saying our prayers, we assumed he would be back to his old self in no time.

At 3:30 AM Jason was wide awake again, with the same throbbing pain. Drugs were given but he started to vomit from the pain. It is now 9:30 AM, 8 hours after the first signs of a headache, and Jason is still in pain. With the help of Dilaudid (a narcotic painkiller that makes his pupils enlarge) he can remove a decent percentage of pain but, once that wears off, he is feeling it. I have also been lightly rubbing his back because he says it makes him feel better. For now, he feels most comfortable by resting on his side with a pillow over his head. The doctors said to keep doing what he is doing and to rest; that this just may be a "down" day.

Every nurse and doctor on this floor has been made aware of the situation and no one is very concerned, which is a good thing. Afte rall, Jason's platelets are not completely bottomed-out, his blood level is good, and he is otherwise "healthy." They are taking care of him very well and have a few hypotheses about the cause of this record-length headache:

1. Jason is under a lot of stress. In the past seven days he admitted himself to the hospital, signed a stack of papers that informed him that a possible side-effect of transplant is death, lost 3/4 of his average sleep time, lost his privacy, underwent a series of medication infusions, saw his brother undergo surgery, and received a transplant. No doubt that all of these factors could combine to cause a pretty nasty brain pain.

2. Chemo/ATG (Anti-Thymacite Globulin). Jason has received Chemotherapy and ATG this past week. Although the chemotherapy drug itself should be out of his system, ATG, Anti-thymocyte globulin, an infusion of horse or rabbit-derived antibodies against human T cells (You read that right, horse or rabbit...) which is used in the prevention and treatment of acute rejection in organ transplantation and therapy of aplastic anemia. ATG can have some nasty side effects. Although those side effects usually occur while being infused (in Jason's case, he would have the chills and shakes) it is possible for side-effects to present themselves even days later. Headaches and flu-like symptoms would not be uncommon.

3. ***This morning's most-likely candidate: a high Tacrolimus level.
    Tacrolimus is an immunosuppressive drug that is mainly used after allogeneic organ transplant to reduce the activity of the patient's immune system and so lower the risk of organ rejection. It is a 23-membered macrolide lactone discovered in 1984 from the fermentation broth of a Japanese soil sample that contained the bacteria Streptomyces tsukubaensis. That's a fancy way of saying that it stops his immune system from destroying Aaron's marrow donation before it can grow in Jason's body and it is used in conjunction with other immunosuppressants such as ATG and Chemo.In the past, when Jason's body built-up too much Tacrolimus his hands would shake and he would get some pretty nasty headaches. Jason is currently on Tacrolimus and his hands were shaking this morning. Solving his headache could be as simple as him skipping a few doses of Tacrolimus and then lowering his continued dosage.


4. *Least likely and no evidence to support thus far: Brain bleeding. Obviously a headache this severe that lasts this long should be examined and doctors have already checked on Jason for the usual signs of brain bleeding. His platelet count is low, but not THAT low. His blood level is not lowering rapidly, his vision has not changed, he can move his head, his neck does not hurt. If his Tacrolimus level is normal then Jason will get a CT scan just to be on the safe side. Once again, no doctor is concerned of this possibility.

For now, if you could take some time to pray with us for this awful headache and nausea to pass we would really appreciate it. We have been praying and will continue praying and we hope he gets better quickly.



*** UPDATE: Doctors just confirmed Jason's Tacrolimus level is too high. He will have some time off of these pills and will have a lower dose when he resumes his regimen. If the headache persists until the evening then they will perform a backup CT Scan as a safety precaution.

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