How has Wegeners effected you?

[Sjap0655]

I am not sure if this is a duplicate thread idea or not, but my idea was to have a thread that tracks what organs or WG affected areas most people have experienced since diagnosis. I see alot of people mention they have limited or localized WG's and I started off with being told I had limited or localized WG's that affected the trachea area (sub-glottal stenosis).

However, since that time back in January 2013, I've had a flare that was detected by elevated CRP; Sed Rate numbers with blood in urine where my eyes (scleritis) and mass or lesion on top of the kidneys showing inflammation (they said cyst). Doctors told me the lesion/mass presentation is very rare for WG's ( they did a needle biospy and found not cancerous, not infected, just inflammation) but that I have no protein in my urine and they don't consider it to be glomerulonephritis.

So with that being said, would anyone else like to share areas/organs that have been affected with inflammation since being diagnosed with WG's on this thread. I think it would be helpful to some people looking to find out areas (either common or uncommon) where inflammation has occurred in people dealing with our disease.

Thanks Sheila

[Pete]

Started with right ear problem. Progressed to include sinuses and lungs leading to dx. Now showing some signs of kidney involvement.

The mental/spiritual(?) outlook has changed. While I was in the hospital, I had a sense that I was in the right place with the right people caring for me. I never doubted that I would survive and even thrive with this disease. I haven't had the internal "why me" conversation, and I don't intend to. I've adjusted to WG/GPA and its new normal. Retirement has helped because I can experience life pretty much on my own terms (exception for family stuff). I lead a pretty high quality of life, and I'm thankful for an understanding and patient wife, great doctors, modern pharmaceuticals, and all the help they give me.

My tag line with my signature says it all...

[pberggren1]

Wegs has made me a happier and more grateful person but most importantly it has made me grow stronger in The Faith.

[Alysia]

Hi Sheila,
the title of your thread can be answered twice, regarding the body (which organs) and/or the soul (like Phil wrote).
I have involvement of lungs, nose, ears, joints and colon (rare). I had minor eye-redness and some rush on the skin (which I though was some alergy), and both were cleared by rtx. I hope it doesn't mean skin and eye involvement.
as regarding the soul: for me2, WG makes me much more close to God.... (but this issue can't be deal here acording to the forum rules...I felt like a criminal last time I did it here :blushing:). WG makes me feel mixture of so many feelings, starting from depression and anxiety and going to peace and gratitude for having small things, like breathing better.
and of course the precious gift that wg gave me is the membership in this amazing weggie family, and getting to know so many amazing precious people here.
p.s. your baby is so cute and beautiful. give him kisses from me :smile:

[whatthewhat]

Let's see, I'll speak to the physical symptoms, since the weggie is my daughter, not me. At the time of dx at age 14 she had weight loss, appetite loss, bleeding in lungs & gut, 5 different types of rashes, joint pain, and nose & sinus involvement. And lung nodules. I feel like I'm forgetting something else...

Since dx she has dealt with tracheal stenosis as well.

[whatthewhat]

Duh. Was forgetting neurapathy...that & the fatigue are probly her hardest ongoing issues.

[Michael Bell]

I had hearing, lungs,kidneys, liver, digestive system and heart. All fairly good at the moment but has left me with hearing aids, joint pain and of course tiredness and shortage of breath.
Mike

[MikeG-2012]

My journey started with an ear infection about 7 years ago. Had sinus problems ever since. An ENT alerted me that this could be wegs because of an elevated ANCA count. Nasal biopsy said no wegs. Fast forward 5 years and 4 docs, all telling me no wegs. Sinuses were deteriorating, constant infections, traveling rheumatoid arthritis, esophageal lesions, hives, skin lesions, BIG skin lesions. But, five docs still telling me I'm not sick enough to have wegs.

Finally, 20 months ago, wound up in ER coughing up blood. Guess what? Wegs! 6 months of treatment of Cytoxin, pred, and 12 months of Mychophenolate immediately following, and this month a confirmed flare up. Took RTX to get it this time.

So for me, it's sinus, lungs, ear (which seems to be OK for now). So far, kidneys for me are still textbook. Sinus I think is going to be my go to indicator for this disease. This time's flare was all sinus first, then the lungs. My ANCAs were always negative this round, but inflammation markers were all off the charts.

How has it affected me? Please ask me again after I get through this round of treatments... Then, once I have a new 'normal' for me, I might have a better answer. So far, this past 20 months has been a mess, but is finally looking up.

MikeG-2013

[vdub]

Sinuses, partial lungs, total pituitary.... Slowed me down by 50%. Lots of retirement plans have been scraped. Not bitter, but definitely disappointed.

[Alysia]

Lots of retirement plans have been scraped. Not bitter, but definitely disappointed.

yeh, I forgot about that :sad: dreams that have to be abandon ....

[woz]

Started in my teeth/jaw, went to sinus, muscles and joints, eyes, ears,lungs and kidneys. Went to hell and back in three months. On maintenance meds currently. Outlook: I enjoy life more than previous, I stop and smell the flowers and appreciate all the small things. There is always many people a lot worse off than me, so I feel extremely lucky, to be where I am am now, every day I awake, is a good day.

Regards woz.

[mishb]

That's exactly what I say Woz.

"I woke up this morning, therefore it is a good day" :thumbsup:

[drz]

I started a couple threads over a year ago about what I disliked most about having Wegs and another on what I learned from having it. Many of those posts were very similar to these. I could repeat almost every thing that has been said here before. Physically I had almost all the the more common symptoms except saddle nose so far.

Mine started with nasal crusting and nose bleeds, roving joint pain, scleritis, blood in urine and significant loss of kidney function, major lung damage, skin lesions, worsened neuropathy, loss of balance, loss of hearing, needing cataract surgery on both eyes, getting a BAHA surgery to partly restore some hearing, several biopsies of skin for pre-cancerous lesions brought on by suppressed immune system, gynecomastia, dental problems, and having a TURP surgery due to damage from the CTX meds and some others other issues I can't recall right now due to reduced cognitive ability but other wise I am in great health for my physical shape and considered sort of medical miracle for having the degree of recovery I have today over three years after my diagnosis.

It took several months of rehab in hospitals, nursing home and out patient clinics but I have learned to walk again although with a wobble that is reduced with use of a cane, feed myself, talk almost normally again and gone through months of rehab to improve my balance, lung function, and cardio system. Mentally and emotionally it was tough adjustment for awhile, counseling helped a bit, but I was so delighted to just get another chance at any kind of life again and stay on the green side of grass or white side of the snow that usually I am very grateful for the life I still have despite the major loss of dreams, health, energy, hearing, my balance, cognitive ability, and becoming a near full time consumer of the healthcare industry. I help support a dozen doctors at six different clinics.

I need monthly pentamadine nebulizer treatments to prevent PCP. I had a medical appointment yesterday and have one tomorrow and just scheduled four others in next few months. I need laser surgery to remove some scar tissue blocking my vision after one cataract surgery and to get some lesions frozen to remove them but this is just routine maintenance in my book like getting frequent cleaning of my teeth and monthly lab work. Wegs made my diabetes worse and it has taken a long time to try get my blood glucose levels as measure by A1C levels back to what they were before Wegs so that is another major accomplishment. I already had neuropathy and kidney damage and other problems from my diabetes before the Wegs but it made everything far worse.

Strangely though I am still generally quite happy too most of the time despite my health issues, the stress of all the work need to try maintain my health, and the major changes in my life. I am also recently divorced too. I certainly don't sweat the small stuff much anymore (and most things in life are really small stuff). My near death experiences have removed any fear of death. I now believe i can fairly safely conclude that I can handle almost anything that life might hand me in the future. I really enjoy the small miracles i see in life on a daily basis and i view every day above ground as a good day and a extra bonus and really enjoy the things I can still do.

[Allisonquast]

Hi Mike,

Is that a Beamer in your photo?

[annekat]

Like Mike-G, started with big ear infection followed by lots of sinus problems and eventually the lungs, with some joint pain thrown in here and there. "Luckily" for me, my lung issues only took 2.5 years to suddenly show up, severely enough to get me a CT scan which looked like Wegs to the overseeing internist. Followed by my first nasal biopsy, which was positive for WG. Unlike Mike-G, no skin lesions, and like him, no kidney involvement.

How it has affected me spiritually is a lot harder to say. It helps my outlook to finally know what I have and to have this new group of wonderful people to communicate with on a daily basis. It makes me think about my own mortality, and I'm at the age to be doing that anyway, but it clarifies the importance of getting my affairs in order so I can be at peace when the time comes. I may be around for a long while yet, and if so, I'd like to make every day count for something. This speaks to the human condition in general, but having a serious illness and knowing that others have died early from its complications does bring things into perspective a bit.

[tmkd]

Mine started with nose bleeds, joint pains and stomach aches. Was originally diagnosed with just sinusitis and was giving medication for this, none of which worked over a month period. I then became very anemic and lethargic and upon blood work being done by my family dr was rushed to hospital. Blah blah blah, kidney biopsy, diagnosis, kidneys failure, among other issues.

I believe, like Ann, that I'm very grateful for being where I am and not taking anything for granted.