NikSyd
03-03-2011, 07:05 PM
Hi, I am so glad I discovered this site. It has helped me so much as my husband and I go through the process of learning about Wegener's. I expect to introduce my husband to this site but he just came home today from being hospitalized for almost four weeks. We live in AZ.d
He has been very sick since January of this year, but when we look back we both realize he had been having sinus problems and fluid in his ears for years. He is 43. This recent diagnosis stems from his getting a cough right around 1/1/11. He then began coughing up mucous tinged with blood and having night sweats and fevers. He was initially diagnosed with pneumonia and ended up being hospitalized for a week. I give the doctors credit because even during that first hospitalization they mentioned WG as a possibility, due to nodules on his lungs and other symptoms like a "rash" on his foot. Once there was no infection from cultures taken from a bronchoscopy, we waited to get the results of the c-anca test. He was at home but not improving at all. The result was positive and he as set for a nasal biopsy when he ended up in ICU on 2/4 and was coughing up blood clots. They had to intubate him. After he was taken off the ventilator, he was so confused and was having problems keeping meds down. Once he got out of the ICU he started physical therapy as he has weakness from being in bed so long intubated and sedated, and he has tremors of his hands and legs. His speech is slurred and I am not sure if it is the meds or something else. He came home today and has an appointment Friday with a rheumotologist who was recommended to us by the pulmonologist who has WG patients. Since 2/4 he is on cytoxan and prednisone and also started taking bactrim, nystatin rinse and fluconazole since then. We expect the rheumotologist will look at the meds and determine whether any changes should be made? His kidneys have remained unaffected.
Has anyone had slurred speech, tremors? At the hospital they think it is from him being weakened and losing muscle mass but.....I am not sure what to think.
I so appreciate the section about what to know for the newly diagnosed. I have been in this mode of making decisions and learning all I can due to my hubby truly being incapacitated before. He literally woke up and wondered where 2 weeks had gone and has had to wrap his brain around this diagnosis when I had those 2 weeks to talk to the docs and research on line.
Thanks for any suggestions. Nikki
He has been very sick since January of this year, but when we look back we both realize he had been having sinus problems and fluid in his ears for years. He is 43. This recent diagnosis stems from his getting a cough right around 1/1/11. He then began coughing up mucous tinged with blood and having night sweats and fevers. He was initially diagnosed with pneumonia and ended up being hospitalized for a week. I give the doctors credit because even during that first hospitalization they mentioned WG as a possibility, due to nodules on his lungs and other symptoms like a "rash" on his foot. Once there was no infection from cultures taken from a bronchoscopy, we waited to get the results of the c-anca test. He was at home but not improving at all. The result was positive and he as set for a nasal biopsy when he ended up in ICU on 2/4 and was coughing up blood clots. They had to intubate him. After he was taken off the ventilator, he was so confused and was having problems keeping meds down. Once he got out of the ICU he started physical therapy as he has weakness from being in bed so long intubated and sedated, and he has tremors of his hands and legs. His speech is slurred and I am not sure if it is the meds or something else. He came home today and has an appointment Friday with a rheumotologist who was recommended to us by the pulmonologist who has WG patients. Since 2/4 he is on cytoxan and prednisone and also started taking bactrim, nystatin rinse and fluconazole since then. We expect the rheumotologist will look at the meds and determine whether any changes should be made? His kidneys have remained unaffected.
Has anyone had slurred speech, tremors? At the hospital they think it is from him being weakened and losing muscle mass but.....I am not sure what to think.
I so appreciate the section about what to know for the newly diagnosed. I have been in this mode of making decisions and learning all I can due to my hubby truly being incapacitated before. He literally woke up and wondered where 2 weeks had gone and has had to wrap his brain around this diagnosis when I had those 2 weeks to talk to the docs and research on line.
Thanks for any suggestions. Nikki