My husband has been hospitalized for 3 months; half of that time was spent near death in the ICU. He's a thrity seven year old runner/weightlifter with no chronic illness except for mild allergies, and high blood pressure (treated with water pill). His only risk factors were smoking and binge drinking. His initial symptoms were: pleuritic pain, chest pain, extreme muscle and joint pain, low grade fever, anxiety, insomnia, numbness left arm, positional pain (had to be sitting elevated), dyspnea, shortness of breath, crushing chest pain. He was admitted to the hospital with a triponin level of 22. Angiogram was clear. Chest xrays revealed minimal fluid. Dx: viral pericarditis, pink eye. Discharged after two days with indocin anti-inflammatory, and painkillers.
2 days later, returned to hospital with dyspnea, shortness of breath, stomach and abdominal pain, right side heart pain, anxiety, and massive back and shoulder pain. Returned to ER. Painful coughing, unrelieved by morphine, labored breathing, falling 02 levels despite oxygen mask, dropping blood pressure, tachycardia, A-fib arrhythmia. Right side heart dilation. Crash. Breathing tube inserted and then sedated. Ventilator assisted breathing. Treated with broad-sprectrum antibiotics and antifungals. Jugular SWAN reveals normal heart pressure readings. Dx: septic shock due to infection; peridcarditis and myocarditis; pleaurisy, and pleural effusion. Cultures reveal "Pneumoccocal pneumonia". White blood cell counts elevate to 47,000 (but started low upon admission). High, cyclical fevers continue despite antibiotics. Experiences elevated liver enzymes a week later, diarrhea, enlarged gallbladder, 30 pounds of edema, and Acute Renal Failure. Has dialysis and continuous renal replacement therapy, and kidneys recover beautifully. Fevers remain. A-Fib arrhythmia returns. Develops a "syndrome" of spiking fevers, tachycardia, anxiety/thrashing, tachypnea (breathes way over the respirator), and blood pressure dips. Ativan at maximum dosage, but does not sedate him. Delusions, hallucinations, chronic movements. Macular rash over torso and extremities present for two days. Right lung drained; attempts to wean from respirator fail. Tracheostomy performed. naso-gastric feeding tube replaced with abdominal feeding tube. Gall bladder drain inserted. Heart is recovering on its own: no fundamental heart problems.
Later cultures reveal "Pseudomonas" pneumonia. Negative tests for Lupus and RA. Negative tests for "superbug". MRI's, body scans reveal nothing. Antibiotics restarted. Fever "syndrome" persists with clock-like regularity. Anemia and several blood transfusions. All tests and procedures show nothing. After close to 6 weeks, he's weaned off ventilator and is now "fully awake". Very anxious, not hungry, diarrhea, food tastes awful to him, INSOMNIA (unresponsive to trazodone, benadryl, depakote, ambien, vercet, or ativan). 30 pounds of weight lost. Still complains of muscle pain in neck, shoulders, back and chest. Tremors and shaking. Very child-like in his thinking for close to a month. Anemia continues despite iron and b12 supplements. Body eventually stops producing red blood cells. High ferritin levels. Minor skin infections of some sites, but nothing major. Fever syndrome persists with nighttime delusions and acting out dreams. Bone marrow biopsy normal. Lowered platelet levels. Fever syndrome finally stops for a week or two. Fungal test comes back positive for some avian infection (but I don't know the name or the test)
After two months, wrist lesions appear over the course of a few hours. Ultrasound reveals tenosynovitis in both wrists. 2 debridement surgeries. Continued anemia and transfusions. Moved to mayo clinic. After close to two weeks, the doctors are still stumped. Possible diagnoses tossed around have been: Adult Onset Stills Disease; and fungal infection from bird feces (he had been white water rafting in Idaho weeks prior).
He continues to gain weight and progress in cognitive functioning and PT; however, he still has the wrist tenosynovitis, anemia requiring transfusions, body pain, and some periodic chest pain.
Can anyone please help us? What are we all missing? He's had every test known to mankind.....................