My son-in-law, 29 years old was perfectly healthy until Dec. 30, 2007. He presented with malaise, diarrhea, and then onset of bloody stools. His s/s progressed to joint pain/swelling, dysarthgia, hives, fever. Admitted to hosp. on 3rd ER visit.. Jan. 6th. He remains in the hospital, has never gone home, and has been in 3 university hospitals. Within 1st week of admission to hospital he went into acute renal failure, was on dialysis. His Plt. cout was 30-90, receiving plasma pheresis daily for couple of weeks. Fevers as high as 105. Lymphadenopathy throughout his body.. negative for lymphoma. Cont. chronic diarrhea in the worst way. He was intubated on ventilator. He then had Hemolytic Uremic Syndrome, and TTP. They often suspected vasculitis, he had severe abd. pain. Sludgy galbladder. At second hospital, cont. chronic diarrhea, abd. pain, nausea vomiting. The kidney failure resolved. He was off the ventilator, tracheostomy was healing.. (also, at first hospital he spontaneous bilat. pulmonary hemorrage post extubation from ventilator). He was then diagnosed with Chrohn's disease and treated with methotrexate.... and subsequently was back in ICU 10 days out from receiving the methotrexate. In april he was then transferred onto a 3rd hospital where they determined that he did NOT have chrohn's disease. However, by now he is sloughing off his entire mucosa lining of GI tract... still has diarrhea, nausea and vomiting, and severe abd pain. Also was positive for CMV. Again they ruled out lymphoma. They have worked him up for every disease known to no avail. During this admission they determined that he had no B-Cells, and immunodepressed.. They started giving him IVIG. He has had repeated infections since the begining of the hospitalizations, too numerous to count. With the onset of infection, he will spike fever, have a rapid heart rate, the highest was 180.. and total malaise, he almost can tell you as it is starting by now.. if this goes untreated, he can be septic withing 48-72 hours. At one point was re-intubated and on pressors (medication to sustain his blood pressure over 90 sytolic) and redo of his tracheostomy.
There obviously is much more detail I have left out. point is,my son-in-law is dying. He has lost over 100 lbs to date. He still cannot eat. He can barely roll over in bed, and can take a few steps. He has severe malnutrition, protein enteropathy, severe malabsorption, still has diarrhea, nausea vomiting. He now is on an investigational drug to help reproduce the mucosal lining of his GI tract.. cont. on IVIG to no avail. They are telling us a bone marrow transplant would probably not help. I'm not sure. We are desparate.
If anyone out there has any ideas, thoughts, suggestions, Please help. I have a almost 3 year old granddaughter, and I can't bear the thought of her growing up without her father. We are living a nightmare. My son-in-law has become so depressed, he barely will make eye contact, and little to no conversation.
Thanks so much, sorry so long letter..