Wegs Progression

[HopeinTN]

Forgive me if this has already been asked/discussed, but I'm curious as to th eprogression of Wegs. I know we are all different and it sounds like there are various levels of Wegs, but in general, what can I expect?

Currently, it's effected my lungs. Even though I've had sinus/upper respiratory issues for awhile as well as bladder/urinary tract/kidney issues and stones, both my kidneys and sinuses look good. Here's where my concern comes in. Will it always be in just my lungs? I'm still new at this and have a lot of questions for my doc at my next appointment, that I never thought to ask until I got on here.

Meds are still going ok for now and I have my first post cytoxan labs this week. I can't help but think about the future and how this crazy disease plays out. Is the worst behind me? The lung lobectomy was no walk in the park, nor was the collapsed lung or thoracentesis.

Any info is greatly appreciated and I'm so grateful to all on this forum.

Thanks,

[Al]

No, I don't suppose your lung issues were a walk in the park, and probably not a fast jog, either, at least for the foreseeable future! As to the progression, you answered this yourself: we are all different. There are hints, though. If your sinuses and kidney's are doing okay, there is a good shot of keeping them out of the battle zone. It was the lungs that led me to seek medical attention, but the kidneys bore the brunt of the disease. The lungs are now doing quite well, considering. I'm always at 98-99 percent oxygen, even after a brisk workout, and the PFT comes back at almost optimum for my age. I still have some congestion, but I've had that since childhood. The plus side for you, and I can't emphasize this enough, is that other thing: "I can't help but think of the future...". What a remarkable thing to say! So long as you believe there will be better days, there will be.

Al

[HopeinTN]

Thanks Al. I really do feel like one of the lucky ones. You would never know I had half of my lung removed at the end of May. My PFT and numbers are doing good. The bad part are the funky granulomas that were left behind and a newly formed one since May.

I guess as long as we keep the lungs in shape, that's a start. As for the other areas, keep a very close eye on them. I just wondered if it can be prevented from spreading, or just the luck of the draw. I aim to continue on my positive and optimistic path, but I do realize it's much easier when you are well. I can't help but to feel guilty for feeling good when there are so many others that are not. For that reason alone, I'm inspired to help others when I can.

Take care!

[mama2005]

I don't think that we can prevent the spread of the disease to other areas but being aware of your body and the disease can surley help with getting the right treatment to help protect the resat of your body from extra damage. Don't feel bad for feeling good. It is something that you can be proud of because you are beating this disease.

[HopeinTN]

Yes Mama, I think you are correct about awareness and this forum will be they key to staying informed. I've learned so much in such a short time and I certainly have a start at things to watch for.

Thanks so much.

[Sangye]

Forgive me if this has already been asked/discussed, but I'm curious as to th eprogression of Wegs. I know we are all different and it sounds like there are various levels of Wegs, but in general, what can I expect?

Currently, it's effected my lungs. Even though I've had sinus/upper respiratory issues for awhile as well as bladder/urinary tract/kidney issues and stones, both my kidneys and sinuses look good. Here's where my concern comes in. Will it always be in just my lungs? I'm still new at this and have a lot of questions for my doc at my next appointment, that I never thought to ask until I got on here.

Meds are still going ok for now and I have my first post cytoxan labs this week. I can't help but think about the future and how this crazy disease plays out. Is the worst behind me? The lung lobectomy was no walk in the park, nor was the collapsed lung or thoracentesis.

Any info is greatly appreciated and I'm so grateful to all on this forum.

Thanks,

Wegs isn't a progressive disease like MS. As long as it stays under control it won't necessarily cause any more damage to your lungs or any other part of your body. And even if you do flare, you are more likely to catch it sooner, before damage is done. However, this is no guarantee. Many times flares sneak up and/or we go into denial about them until things are so bad they require major meds. Wegs is highly unpredictable.

Dr Seo told me that people with lung-only involvement who don't develop kidney involvement for several years are highly unlikely to ever get it. He told me this about 3 years after dx, and said he'd be completely shocked if I ever developed kidney involvement.

The best thing you can do is take it one day at a time. Remain vigilant but not paranoid about your symptoms, and don't let things go too far before giving your doc a call.

[Al]

... I aim to continue on my positive and optimistic path, but I do realize it's much easier when you are well.

Yes, Hope. That's a major with being sick. (Only healthy people are able to withstand the rigors of treatment!) I love your attitude....

Al

[me2]

30 some years ago I almost died from primarily kidney involvement. I also had joint pains- they would also swell up huge.
I had zero lung involvement. I thought the doctor was nutty because he kept listening to my lungs. I would think "My kidneys and joints hurt , why is this idiot listening to my lungs." Kinda funny in retrospect. This was before the internet and before doctors
would explain things to a patient.
Then after twenty years of remission I relapsed. This time it completely ignored my kidneys and went for my lungs and brain stem. I got to learn about NEW things. Still I'm glad my poor kidneys got a break this time round.
I guess the moral of the story is YES this illness is unpredictable
The plus side is it can (with treatment) decide to leave you alone. It sounds like that is where you are. You have been through a LOT but todays treatments are very effective. When I first got sick they had only recently developed treatment. Many refinements and some breakthroughs have been made. There is a lot of reason to be optimistic.
I remain vigilant but not paranoid (That phrase sounds familiar. I like it).

[renidrag]

Hope: I also have had "just" lung involvement with wg. Diagnosed in August 2009. I too came to a rather rapid new normal and am still in drug free remission. I can also identify with the feeling of guilt when others suffer so much more. An old friend of ours suggested I (we) should not feel that way as we could be a beacon of hope to others. His name was Jack, you may have heard of him.
Dale

[HopeinTN]

By the way, my name is Katrina, but most relate that to the hurricane. My mom says to people "yep, she's just like the hurricane, but a bit stronger".

I felt Hope would be more fitting for this site since that is my goal, to always have Hope.

I have read a few of Jack's post and wow, what a wise man he was. It sounds like he touched many lives and shared all his wisdom.

Happy ALMOST Friday!