Small update on Elena

[Elena]

Just wanted to tell you guys that I was admitted to the hospital Thursday night.. I ended up having a hard time breathing, as it hurt alot and so I couldn't take any deep breaths, after I coughed a lot. Had to go to the emergency room and, as usual, when they learned I have WG they took me really seriously and sent me to the specialist hospital the next morning.

I was originally scheduled for dilation the 24th of January, as my trachea has been getting a lot tighter. Had an x-ray, a CT-scan and a bronchoscopy yesterday. What happened was that when I was coughing some phlegm got stuck, in the very small passage down to my right lung, which made it impossible for air to get through. As it was a bit of air left in my lung, I created pressure when I was coughing which made air leak into my Thoracic cavity (not a 100% sure if that's what it's called..). So now I'm so I'm really lucky (not) and get to spend my entire weekend and most of next week in the hospital, getting antibiotics and waiting for my dilation (which is being moved to an earlier date)

It originally hurt a lot to breath in, and my neck got really stiff, but all that has gotten better. I have also been getting some qualms and been throwing up some as well after getting to the hospital. Fortunately not too often.. Not much fun though..

[Sangye]

I'm sorry to hear this, Elena. It sounds very scary. I can't imagine throwing up under those conditions. Please do your best to stay calm! Do you have tv or some other way to distract yourself? Big hugs to you while you get treated.

[Jack]

It can be really crap when it all starts going wrong and you end up in hospital. Hope they get you sorted out soon.

[elephant]

Take care Elena and hope your feeling better in a few days!

[Elena]

The first night and day was the worst, now it doesn't even hurt that much. I haven't been throwing up since yesterday either. So I'm feeling a lot better now.
I'm really grateful that I'm such a calm person. If I had been easily scared I probably wouldn't have been doing so well right now. But I'm pretty confident the docs here know what they're doing and that they take good care of me. And I have lots of stuff to distract me, such as very good friends who keep callling and making sure I'm ok ^^,

They are considering putting in a stent when dilating my trachea. But it's going to be kind of soft and made of silicon, so they can just take it out as soon as my trachea is properly healed. I was initially pretty skeptic to putting in a stent, but they explaned properly and explaned the different kinds of stents.
JanW; do you know much about this kind of silicon stent? Would like to hear your meaning as well, as I know you have a lot of knowledge about this : )

[jola57]

Glad that you were calm, it must have been scary and unpleasant. Elena, having a stent is better than not being able to breathe, I believe the silicon stent is widely used and has fewer complications which are easily treated

[drz]

Hope things are going better for you and improvement is on the way soon. Glad you are able to get good care.

[JanW]

Hey, Elena -- I don't have TS, only SGS (subglottic involvement); only the first two rings of my trachea had any scarring. I know that both stents and laser treatments are rarely used in major centers in the states because of the increased risk for scarring (granulomas grow over and around the stents or the scar tissue from the laser), but I also know that they are fairly frequently used internationally. Sorry I can't be more helpful but I think that the trachea is a whole different ball of wax, and harder to get to as well (and smaller I think). I don't know anything about the different kind of stents - never an issue in my particular case.

[Sangye]

I hope whatever treatment you get works great for you, Elena!

[Elena]

Thank you anyways JanW. It seems that they will try without one more time and see how it works out, so it nothing I need to decide right now.

I'm most likely getting dilated on Friday (originally scheduled for Monday), so I'm really looking forward to getting home and back to my life now. Been in the hospital for 6 days now.. And thank you to everyone else as well!