How many have required intubation as part of treatment for WG?

[drz]

Just wondering how many have required intubation as part of their treatment for WG disease? for How long were you intubated?
Any tracheotomies?

[andrew]

I was intubated the day after I was admitted to hospital. Was like that for some days then was replaced with a Trach which was in for five weeks or so. That reminds me, I must start an 'I hate tracheotomies' group on facebook :)

[JanW]

I did not, although I have stenosis and have found that people on these forums who have this involvement and are not seeing a WG ENT were getting trached when their windpipe was even larger than mine (I was down to 2 mm). So if stenosis is the situation of anyone coming into this thread go to the section about that specifically for some advice. It can be tough to wean off a trach so should be avoided.

[pberggren1]

what is intubation?

[elephant]

When the put a tube down your trachea so that you can breath.

[pberggren1]

I think I had that just before diagnosis.

[jola57]

No never had any problems requiring intubation

[talentx7]

Do they only intubate in an emergency??? Do you have any warning before you need this kind of treatment? What are the symptoms I should watch for?

[elephant]

Intubation is required when some is in respiratory distress/ failure. Then they go on a breathing machine.

[gwenllian111]

I was intubated when I was 14 years old, for 3 weeks in Intensive Care. I had this awful dry cough, and I was fitting trying to breathe all the time, so I was taken into theatre to have a lung a kidney biopsy, and then taken to ITU. My lungs were bleeding, and collapsing, and I was in Kidney failure.

I'll never forget the doctors taking me off intubation. I remember this big green tube being bought out of me, but it took a while for my lungs to start working on their own again. Those few seconds seemed like a life time, I can still remember it as though it was yesterday.

I developed tracheal stenosis a few years later, and I suppose it's debatable whether it was caused by the intubation, WG, or a bit of both. Who knows.

[jola57]

I have never had to be intubated (well not quite, they did have to after my thyroidectomy) or have had any lingering problems with my trachea but I have had several episodes over the pre diagnosis years where I had this awful chocking dry cough that went on for several agonizing minutes. I just couldn't get enough air in to breath. On reflection it was probably wegs, I just never made a big deal of it or complained abot it. I am sure that even if I did it would be put down for as just your average "oh its nothing she just chocked on her own saliva", but it was an awful feeling of not being able to breathe and definitely was not self inflicted. It would eventually pass. I am sure though that if it persisted for longer I would be rushed to an Emergency and I would be intubated if the cough didn't stop. I still remember the awful chocking feeling.

[jeff rizz]

I was intubated for a week while in the ICU. Both of my lungs had collapsed after the lung biopsy to Dx the Wegners. My lungs where both filled with blood,had to have two chest tubes inserted one for each lung. I don't believe that it was part of the treatment it was required after the lung biopsy because my lungs where in that bad of shape that collapsing the one lung for the biopsy it was to much pressure for the other lung and it also collapsed. They kept telling me to take deep breaths and I couldn't. It was awful feeling not being able to breathe!

[Cindy R]

My mom was put in ICU, and was sedated and intubated for 5 days. They did this because her lung involvement (didn't know it was WG at this time), and she was wearing her body out breathing so heavily. Her body had to be calm in order to due the lung and kidney biopsy's. She doesn't remember any part of being in ICU.

[drz]

My mom was put in ICU, and was sedated and intubated for 5 days. They did this because her lung involvement (didn't know it was WG at this time), and she was wearing her body out breathing so heavily. Her body had to be calm in order to due the lung and kidney biopsy's. She doesn't remember any part of being in ICU.

It is good we don't remember being intubated except for start and ending since it is not a pleasant experience even though necessary to keep us going.