Those with Sinus involment

[pberggren1]

If I had the energy and the money I would visit you all one by one. And then have a big party at my house and fly everyone in.

[marta]

Let's have it in Baltimore! Then you can all come visit me! Save the date.

Sounds like a party to me. Will your place hold us all?
I'll start working on designing a "Super Wegie" t-shirt so we can all recognize each other.

[pberggren1]

If I had that kind of money I would have a place as bing as Buckingham Palace.

[elephant]

Love to be Bill Gates for one week.

[Sangye]

Sounds like a party to me. Will your place hold us all?

LOL-- sure, I live in a little basement. If you can get in, you can stay.

[misskay]

Saw my Pulmy this morning... lung function looks to be improving a bit ( but slowly), O2 levels was only 92% though... but it's soooo hot and humid here I'm really not surprised as the humidity always makes breathing tougher for me. He's concerned that the incisions from my lung surgery in mid-June aren't healed yet. Working to try and help them along. He also set me up with an ENT familiar with WG due to the sinus issues and a couple of dizzy spells (fell Saturday and had a close call Monday). The initial CT of the sinuses before diagnosis didn't show much, but he's concerned now because the issues haven't eased and are getting worse. Said it was time to add a good ENT to "our Team". See him next week.

[Jack]

misskay - do you have a Vasculitis specialist in overall charge of your treatment. The idea of someone who is "familiar with Wegener's" being called in worries me. You need better than that.

[elephant]

Hi Misskay, they need to do a cardiac work up on you. I had several dizzy spells and passed out, I was taken to the hospital twice and put on a cardiac floor. It is a sign of your WG acting up. That is what happened with me, but didn't know it until I was diagnosed. Check it out, do you have a Cardiologist?

[misskay]

jack... right now, no I don't have a specialist 'in charge'. Not a possibility right now unless I want to travel and that just isn't possible right now for a lot of reasons. But so far I'm confident with the care I've been getting. I'd be dead right now if it weren't for my Pulmy. I feel like I have a good 'Team' that all communicate with each other. The right hand knows what the left hand is doing, and they all agree. I will trust them until I have reason not to. I know a lot of you think I can't possibly be getting good care if I'm not going to a big city and seeing a 'specialist', but please try not to think less of me because I haven't chosen that route (for now). Trust me when I say it isn't a possibility right now.

elephant, I do have a cardiologist. I have some underlying heart issues to begin with and have a call into him as I type this. No chest pain or anything (I have Mitral Valve Prolapse and have had 2 heart attacks previous). Think it has more to do with sinus and ears. Been having to turn the tv up louder lately, etc... think it may be fluid. Have also lost the sense of taste, which helps with the food cravings and I have only gained 1 pound in the last 2 weeks. Still not up to my pre-WG weight... but closing in on it. Large weight gain is one of my fears... vanity, maybe. I've always been naturally thin, and plan to stay that way if possible.

[Jack]

I would not dream of judging you for not having a Wegener's specialist, we all have our own individual circumstances that we have to deal with. However, it it bound to concern anyone not familiar with your exact position due to the tricky nature of this disease. Hopefully, armed with information gathered, you will be in a position to ensure that the treatment you receive is effective and not putting you at risk.