Forum activity

Hi forum members and readers,

It has been months now that the number of new topics seem to decrease.
Still I see that the forum is used quite a lot, most of the time nearly a thousand people are online, according to the 'stats' I see on the front page.

I joined the forum in 2010. That is 12 years ago now.
My health is 'manageble', my GPA is under control.
Also I have lived through the pandemic so far without catching a Covid-infection.
To achieve that I had to take much precautions, remain very vigilant, and take three anti-Covid-vaccinations, plus a Flu-shot.
Tomorrow I am going to take a 'repeat-shot' against Covid.

My question to forum-members is:

How many of you are already a member for ten or more years?
And do you still find a lot of information here?

I know I do.
Even older posts here contain a lot of information!

I have also been a forum member for 10 years (barely).It's been a godsend to me in that it helped me find Dr VillaForte and get answers to so many questions.

As luck would have it, a good friend of almost 40 years standing was recently diagnosed with GPA. He lives closer to Cleveland Clinic than I. He was dxed there after over a week there and nearly two weeks in his local hospital. A mutual friend of ours follows me on facebook and has noted my life with GPA. When Steve told his symptoms, the other friend said that sounds a lot like what Pete has. (The were used to seeing GPA referred to as Wegeners.) After we talked, I suggested he look at this forum. I also suggested that he see Dr VillaForte (and he has an appointment with her next month).

I also joined in 2010 when i was in a nursing home working on recovery after months of treatment in hospitals after I was finally diagnosed with Wegeners Granulomatosis before it became more politically correct to rename it GPA. I came to the Nursing Home in a wheel chair but was able to walk a hundred feet with a cane when i left.

The forum was very important in my recovery and it was very busy back then and it often took a few hours to get through the dozens of messages each day. I got a lot of good advice and encouragement to help my recovery.

I was only person on my unit of 40 patients that actually got to leave the nursing home to a lower level of care facility.
When i came back to visit my unit a year later and two years later there was only one resident still there who was there with me. It made me realize how lucky I was to survive my ordeal and to still be here almost 12 years later. I went to that nursing home for more rehab work and I got very good care there.

The Nursing Home was attached to the community hospital and the ER was a short walk down the hall and I went there every weekend for transfusions for several weeks. I was very anemic from the bleeding in my lungs and kidneys and needed fresh blood to be able to function. i also had bladder infections that required antibiotic IVs. CTX was hard on my bladder.

They did not know much or anything about treating GPA but did the best they could and when necessary sent me back to the big city university hospital a few hours away where I had spent months in treatment with much of it in ICU and their rehab hospital. I remember getting transfusions enroute there while in the ambulances.

I am thankful for the many people who helped me on this forum back in the early days but sad that most of them are gone. A few got well enough to resume a more active and busy life but most did not survive their GPA even though they were younger than me and seemed in better health with less serious problems. But such things are often one of life's great mystery's that we can only ponder and never understand. It just reminds us to enjoy today and make the best of it because there is no guarantee of a tomorrow for anyone. Appreciate what you still have and do not focus on what you have lost. Some times I have to remind myself of that when i wish things were going better for me. They have been a lot worse in the past and could be again so with that reference point i am really doing pretty good today and i am really lucky to still be here.

Have a good day!

2010 for me too, after about a year of lurking, and not thinking I would ever have anything to say or participate in a conversation.

Gosh how wrong a person can be :lol::lol::razz:

For me it will be 10 years in December. This forum was a great help to me in the early years, it was a great place to compare problems with what other people had. I have fully recoverd now. I still take Azethioprine to ensure that GPA does not come back, or at least slow it down if it does. I have been living a fairly normal life for the last eight years and consider myself lucky considering how this seems to hang on with other people.

Me too. 2010.

This feels like the old rat pack on here.
My Wegener's Boot Camp.

Man we spent a lot of time together, didn't we?
We shared the joys, the pains, the insights, the coping strategies, the snot pictures, it was a scene.
And I hold every one of you so dear in my heart.
You all gave me the confidence to stand up for myself... Empowered me with your collective experiences.
You convinced me to change my doctor when he ghosted me during my first flare. It not only saved my life, but led me to the best doctor I could have imagined.

Other places (forums, FB pages, etc.) I visited were more of a 'I got it worst' competition, whereas here one could find support, a shoulder, a common experience, kindness and compassion, and with Jack, so much wisdom. And yes, pred sometimes made us talk crazy talk, but Boot Camp, we were all in it together.

Thanks to you all, and Andrew of course, for creating this healing, learning, coping place.

2013 for me, although I've been living with Wegener's much longer.

I do go through periods where I tend to pop in to the forum much less. These are usually periods where my Wegener's is behaving itself, or I don't receive any emails from here. I like to hope that when we don't hear from members for quite sometime, it's because they are enjoying life and not currently suffering.

I sometimes feel like I should visit more often and not just "use" this forum for my own benefit. Although I have many years of experience (since 1995) of this condition, I also know that there's still lots of people here who can offer just as good (if not better) advice as I can give. I do try to look out for any questions relating to kidney complications as I do have more experience with this than most others on here.

I am still extremely grateful to Andrew and all the people that contribute to making this the first place I want to visit when things are not going so well.
I will, as always, be back at the beginning of July (if not before) to change my avatar in remembrance of Phil and Barbara N