Outlook on recent diagnosis with lung complications

Hello, Ive been reading up on Wegeners and found this forum. My husband is currently in the ICU and was diagnosed with Wegeners. It has been overwhelming and scary. His lungs were affected. He had alveolar hemorrhage & respiratory distress, so they put him on a ventilator with a breathing tube. They gave him a high dose of steroids, and two days later, after confirming Wegeners, added Rituxan. It’s been 11 days. His lung function has improved, but not enough yet to be taken off the ventilator. They are hoping to see more improvement in the next few days. Also he is still heavily sedated. They significantly reduced his sedation to try to see if he’ll respond to light commands. So far he has not. They said the next step may be a tracheotomy with the ventilator. What Is weighing heavily on me right now is if he ends up needing a tracheotomy with the ventilator, how long will he have it? When I asked the doctors, they said it depends on lung damage. It could be a short time, months, or permanent. I would like to know your thoughts on whether most people with similar complications eventually get off the tracheotomy/ventilator, is it only some, or is it rarely? Thank you

I don't have a lot of experience with this but I do know of cases of people only have tracheotomy for a short period of time. My suspition is that it was more common in the past when treatments were not as fast and as effective. So, past experience may not be a great way to place the odds. Many, many have returned from devastating illness to lead normal lives. Myself included. I have had three tracheal dilations and my breathing today is totally normal. Rituxan takes some time to have effect. It's great that he has already been given this treatment- it will catch up to him.
He will be in my thoughts.

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Originally Posted by Christine3

Hello, Ive been reading up on Wegeners and found this forum. My husband is currently in the ICU and was diagnosed with Wegeners. It has been overwhelming and scary. His lungs were affected. He had alveolar hemorrhage & respiratory distress, so they put him on a ventilator with a breathing tube. They gave him a high dose of steroids, and two days later, after confirming Wegeners, added Rituxan. It’s been 11 days. His lung function has improved, but not enough yet to be taken off the ventilator. They are hoping to see more improvement in the next few days. Also he is still heavily sedated. They significantly reduced his sedation to try to see if he’ll respond to light commands. So far he has not. They said the next step may be a tracheotomy with the ventilator. What Is weighing heavily on me right now is if he ends up needing a tracheotomy with the ventilator, how long will he have it? When I asked the doctors, they said it depends on lung damage. It could be a short time, months, or permanent. I would like to know your thoughts on whether most people with similar complications eventually get off the tracheotomy/ventilator, is it only some, or is it rarely? Thank you

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I can share some of my experience from my initial treatment in 2010. I was intubated for umpteen days and had serious damage to kidneys, lungs, loss of hearing and balance plus the usual residual things like sinus damage, joint pain etc. The Wegs made my diabetic neuropathy much worse too.

Because RTX takes longer to work they switched me to CTX since I was unlikely survive long enough for RTX to help me. I took the CTX along with lot of pred for the next year. In ICU I was on mega steroids too like 1000 mg of Solumedrol which equals 1650 mg of pred. With these meds and with the breathing machine to give me o2 and tubes to drain the bleeding in the lungs i survived without needing a trach. It took a few weeks but I got off the breathing machine and then later off the o2. My lungs slowly improved over many months and after a couple years seem to stabilize at close to 50% of normal function for my age and my kidney function in mid 40%. I am still on maintenance meds and frequently end up in hospital for impatient treatment for pneumonia (2x in last three months). The hearing never did return but I got a BAHA that gives me enough to get by for most things although the hearing loss is a major inconvenience at times. I have also had pulmonary rehab and vestibular rehab for balance a few times in the past ten years. The pneumonia and aging are causing me to show some decrease in lung function but no new WEG damage to lungs or kidneys have occurred in past 10 years.

The nightmare I had about being intubated was the need for them to frequently to reduce the sedation to make me try fight for air so my lungs and breathing muscles didn't lose the ability to breath on my own. I got PTSD from that.

I have very poor balance from my vestibular damage and neuropathy in my feet but I can wobble around fairly well with out using a cane or walker although it took me a year to get to that point once I got out of the wheelchair after I got out bed. I lose my balance often but don't fall to the floor or injure my self except for minor bruises from hitting a door jam or other things I bump into.

Good luck and best wishes for better health soon. I think the odds are very high he will get off the ventilator OK since the mortality rate today from GPA is very low with proper treatment. Dr Specks at Mayo is one of the world's best experts on GPA and is in their pulmonary dept. My treatment staff consulted with him about my treatment and I saw him later for a few years to participate in their GPA treatment study. You can ask your doctors to consult with him.