MikeG-2012
09-14-2013, 04:49 AM
Hi everyone. My name is Mike, and I reside in northern Illinois, USA. Was diagnosed with Wegeners back in April of 2012 after many years of 5 doctors telling me "you're not sick enough to have Wegeners". Had esophagus lesions, asthma symptoms, chronic sinus infections and crusting, inner ear infection that required 2 ear tubes until it was cleared up, random rheumatoid flare ups, foot pain (like walking on broken feet), small and large skin lesions, and much more. But, I wasn't sick enough...
Anyway, after Granulomas took over both of my lungs, I wound up at another hospital system (Monroe, WI), and was immediately scheduled for a lung biopsy, which definitively confirmed a Wegeners diagnosis. I thank God that we went to Monroe ER that day, and not to my local hospital system where the aforementioned 5 docs practice. During my hospital stay (9 days, 10 nights), I met a PA from the the hospital who has Wegeners. He spent a considerable time talking to me about the disease, and how it has affected his life. He was the person who had the pleasure of doing the chemical pleurodesis procedure to seal up my left lung after it would not seal up after the biopsy. At one point, I had a pulmonologist, a rheumatologist, a surgeon, a hospitalist, and PA in my room discussing my case with me. This hospital system has been described as a "mini-Mayo clinic", and I will say that I concur. My Rheumatologist started me immediately on the 4 months of high dose prednisone and 6 months of Cytoxin. That was not fun in last year's summer heat wave here in the Midwest. So as of now, I'm currently on Mychophenolate for six more months (sulfa allergies kept me off other options). For the most part, WG is still negative in all blood tests every couple months. My lungs are still at the 75% mark, and I think that is the best it's going to be from now on.
My biggest issue now is the crusting in my right sinus, caused by the damage from the WG prior to diagnosis. It's been an uphill battle--really uphill. I'm running 3 liters of saline through my sinuses two times a day to keep the sinus open (using a water pick type device). The constant chronic infection has my upper sinus passages blocked shut, which equates to a bout of 8 months of chronic sinus headaches. The past month I've had another bad flare up, which has caused debilitating migraine headaches. I finally broke down and asked for Rx pain pills. I've always been able to tough through almost any pain, as I have a very high pain tolerance. So I'm dealing with the emotional side of feeling like I've had to give up/give in to the pain pills. But once this started affecting my work attendance, I had to do something. I am really fortunate to work at a place that has been more than supportive of me while I've gone through all of this. I am also very fortunate to only have used 8 sick days in the past 18 months because of the disease (I'm not counting doctor visits). For that, I feel really blessed, and wish I could give some of you who are struggling more than I, a tiny bit of that blessing.
OK, I've taken enough of your time getting to know me.
If I had one question for the group, it would be, do any of you suffer from chronic sinus crusting and infections, and what have you done to help with that? My ENT doesn't want to do a procedure to open up my upper sinus passages, until the infection in the lower sinus is at least somewhat under control. Neither of us wants to do a multi thousand dollar surgery to only have it lat a month or two because the infection snaps the upper passages back shut again. So can anyone share their remedies, ideas, suggestions, proven techniques? Help, PLEASE!
MikeG-2012
Anyway, after Granulomas took over both of my lungs, I wound up at another hospital system (Monroe, WI), and was immediately scheduled for a lung biopsy, which definitively confirmed a Wegeners diagnosis. I thank God that we went to Monroe ER that day, and not to my local hospital system where the aforementioned 5 docs practice. During my hospital stay (9 days, 10 nights), I met a PA from the the hospital who has Wegeners. He spent a considerable time talking to me about the disease, and how it has affected his life. He was the person who had the pleasure of doing the chemical pleurodesis procedure to seal up my left lung after it would not seal up after the biopsy. At one point, I had a pulmonologist, a rheumatologist, a surgeon, a hospitalist, and PA in my room discussing my case with me. This hospital system has been described as a "mini-Mayo clinic", and I will say that I concur. My Rheumatologist started me immediately on the 4 months of high dose prednisone and 6 months of Cytoxin. That was not fun in last year's summer heat wave here in the Midwest. So as of now, I'm currently on Mychophenolate for six more months (sulfa allergies kept me off other options). For the most part, WG is still negative in all blood tests every couple months. My lungs are still at the 75% mark, and I think that is the best it's going to be from now on.
My biggest issue now is the crusting in my right sinus, caused by the damage from the WG prior to diagnosis. It's been an uphill battle--really uphill. I'm running 3 liters of saline through my sinuses two times a day to keep the sinus open (using a water pick type device). The constant chronic infection has my upper sinus passages blocked shut, which equates to a bout of 8 months of chronic sinus headaches. The past month I've had another bad flare up, which has caused debilitating migraine headaches. I finally broke down and asked for Rx pain pills. I've always been able to tough through almost any pain, as I have a very high pain tolerance. So I'm dealing with the emotional side of feeling like I've had to give up/give in to the pain pills. But once this started affecting my work attendance, I had to do something. I am really fortunate to work at a place that has been more than supportive of me while I've gone through all of this. I am also very fortunate to only have used 8 sick days in the past 18 months because of the disease (I'm not counting doctor visits). For that, I feel really blessed, and wish I could give some of you who are struggling more than I, a tiny bit of that blessing.
OK, I've taken enough of your time getting to know me.
If I had one question for the group, it would be, do any of you suffer from chronic sinus crusting and infections, and what have you done to help with that? My ENT doesn't want to do a procedure to open up my upper sinus passages, until the infection in the lower sinus is at least somewhat under control. Neither of us wants to do a multi thousand dollar surgery to only have it lat a month or two because the infection snaps the upper passages back shut again. So can anyone share their remedies, ideas, suggestions, proven techniques? Help, PLEASE!
MikeG-2012