Wegeners not affecting a major organ

[annekat]

thank u for the info! so it looks like my tear duct had like fluid build up right? and the drops were not changing anything but I blew my nose and it all went away....very strange, I have a bruise right where you say your hole is but I put it there rubbing the swollen tear duct. I am on antibiotics and drops to keep it flushed for a bit but literally it went from swollen & built up to just normal & tender. I worry I am having the draining problem do to a different ...undefined problem. But things are looking up

I don't know that much about the tear duct thing, except I think mine are swollen and blocked, and that's why my eyes water, because the tears can't drain down the duct like they are supposed tp. But it's getting better, the swelling may be decreasing, and my eyes aren't watering as much. If your problem cleared up when you blew your nose, then maybe your ducts were just a little swollen and blocked but not too bad. As for the bruise, I wouldn't worry. The skin is thin there so can probably bruise easily. When my hole happened, my whole eye area was pretty swollen.

Anne

[skipper]

I have lung and kidney involvement and it frightens me to hear life threatening. I am hopeful medications will at least put that fear in the background. Perhaps I just have my head in the sand and don't want to think of it that way. skipper

[Widthofacircle]

For me it has been eyes,ears,joints, sinuses,lungs and kidneys.
Brendan

[annekat]

I have lung and kidney involvement and it frightens me to hear life threatening. I am hopeful medications will at least put that fear in the background. Perhaps I just have my head in the sand and don't want to think of it that way. skipper

I think we all go through that. As long as you are getting correct treatment, it's OK not to worry about the "life threatening" thing. You WILL feel more encouraged and less afraid as you start to feel better. I'm lucky enough not to have kidney involvement, so don't know how scary that would feel, but when my lungs were in really bad shape and the drugs were making me feel lousy, it did enter my head that I felt like I was going to die. It didn't take long for me to realize that the drugs were making me better and I was tolerating them much better. Now, a little over a year since dx, I'm feeling MUCH better and though I still have some symptoms, hearing that WG is "life threatening" doesn't affect me much, although I know I'll have to be careful for the rest of my life.

[Rini]

I think we all go through that. As long as you are getting correct treatment, it's OK not to worry about the "life threatening" thing. You WILL feel more encouraged and less afraid as you start to feel better. I'm lucky enough not to have kidney involvement, so don't know how scary that would feel, but when my lungs were in really bad shape and the drugs were making me feel lousy, it did enter my head that I felt like I was going to die. It didn't take long for me to realize that the drugs were making me better and I was tolerating them much better. Now, a little over a year since dx, I'm feeling MUCH better and though I still have some symptoms, hearing that WG is "life threatening" doesn't affect me much, although I know I'll have to be careful for the rest of my life.

I know i have been off the sight a long time, did the college thing. Now I am in summer school, work at the zoo and moving into a new house. I keep losing phones and changing addresses and insurance, my weggie doc is gana flip out when i finally get a hold of her. My eye problem got REALLY bad there for a bit as the clogged tear duct got infected, they ended up litterally slicing into my face and clearing it out multiple times... many CTs show that it is internal scars cosign the problem and I will need plastic surgery (if i ever suck it up and schedule). For now it just looks a little healed mark and i have kinda thick clear tears that need some encouraging every once in a while. As far as weggie symptom options this is very liveable. I am doing very good, for now. thank you guys again for being around to explain ur experiences! (It really helps so much to know i am not alone in all this)

[annekat]

Glad to see you back, Rini! I'm sorry to hear about your tear duct problems, but everything else in your life sounds pretty good.

[pberggren1]

That's what we're here for Rini. Good to see you are doing well.

[Lightwarrior]

Nice to hear from you and that you are doing well. Working at the zoo must be a really cool job. What is your major?

[Al]

It's great that you are taking charge of your life, Rini! And I am sure you are taking it by storm. We'd love to know how the college business, the job, and the new house are going for you. In the mean time, don't forget about us!

Al

[onatreetop]

Jumping in late. But still have my original parts so far.. Kidney stones( not wg) fatty liver( from meds for wg) lungs dxd as ocpd and asthma ( worse and un dxd until dxd with wg) sight has changed (again most likely meds).

So what Jack said to me in the begining.....if the wg doesnt get you the side effects from the meds will I am afraid is very true.

bone density has gone way down. All my joints and legaments etc pain and strectched. Have to wear braces until I can stand it anymore. I need a new left hip and new right knee. holding off as long as possible. At 44 years old Iwas told to go as long as I can because i would mostly likely have to have them done several times if i start now. hands have had rare white cell masses removed from knuckles. another on going thing i am afraid. New pain in is shoulders and arms. Also ears, sinus, esophagus i know i am missing something. But it effects us all in different ways.